The Use of a Mobile App Parent Training Program ...

The Use of a Mobile App Parent Training Program to Improve Functional Communication in Children with Autism Spectrum Disorder

LAW Gloria Chun Yi

A thesis submitted to the National Institute of Education, Nanyang Technological University in fulfilment of the requirement for the degree of Doctor of Philosophy 2016

ACKNOWLEDGEMENTS

Dedicated to the LORD YHWH, the Alpha and the Omega, the First and the Last, of this project. All glory and praise belong to Him (Isa 42:8).

The PhD undertaken was kindly supported by the Nanyang Technological University Research Scholarship. The mobile app research project was supported by the Office of Education Research Grant (OER63/12 MFN), National Institute of Education (NIE). I would like to thank the late Mr Anthony Yeo. Without his guidance I do not think I would be where I am today. Thanks for his genuine care and perseverance. Thanks to my spiritual mothers, Ang Poh Wah and Joyce Leung, for their love and wisdom. Special thanks to dear friends, Portia Chan, Ho Souk Heng and Andrew Lau for praying and discerning together for the PhD pathway for research. Sincere thanks to my supervisor, A/P Maureen Neihart. Without her prayers and her kind acceptance of me as her student, I do not think I would ever start this journey. Thanks to Dr Anuradha Dutt, my co-supervisor, for her passion and specialty in single case experimental design. Thanks to research assistants, Ms Dipika Paul for transcribing the interviews and doing the initial coding of the qualitative study and, Ms Marilyn Tan for completing the inter-rater reliability for the mobile app project. Thanks to Ms Magdalene Foo, family therapist and principal social worker of IMH, for auditing the analytical process of the qualitative study.

Thanks to the professional team of Simulation Software and Technology who worked and developed the mobile app alongside with me – especially Mr Christopher Pau and Mr Leon Liang. Special thanks to the staff at the Application Development and Support Services (ADS) of NIE to help with various initial decisions on issues in development and maintenance of the mobile app.

Special thanks to the Shoulder-SG parent network, especially Ms Brenda Tan for her help in recruitment process. Thanks to the ABC Center, the Rainbow Centre, the Society of Physically Disabled for their kind support in recruitment. Thanks to the parents and their children who participated in my PhD studies. We grow together to learn more about life, disabilities, brokenness and clinging onto the hope of redemption and restoration.

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TABLE OF CONTENTS Page Acknowledgments

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Table of Contents

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List of Figures

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List of Tables

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Abstract

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CHAPTER 1

INTRODUCTION

Clinical Features of Autism Spectrum Disorder (ASD)

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Prevalence

3

Problem Statement: Shortage of Resources

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Rationale

11

Purpose of the Study

17

Significance of the Study

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Definitions of Terms

18

Organization of the Dissertation

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Chapter 1 Summary

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CHAPTER 2

LITERATURE REVIEW

Evidence-Based Practices

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Early Intensive Behavioral Intervention (EIBI)

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Communication Intervention for Children with ASD

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The Role of Context and Culture in Evidence-Based Practices

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Parent Training Programs for Parents of Children with ASD

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Adult Training and Behavior Modeling Training (BMT)

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Digital Media and Mobile Technology

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Chapter 2 Summary

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CHAPTER 3

RESEARCH DESIGN & METHODOLOGY

Purpose and Objectives of the Study

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Research Questions and Hypotheses

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Rationale of a Mixed Methods Approach

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Research Design

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Chapter 3 Summary

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CHAPTER 4

STUDY ONE: CONCEPTUAL FRAMEWORK

Research Related to Parenting Children with ASD and Other Disabilities

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The Singapore Context

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Theoretical Frameworks

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Chapter 4 Summary

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CHAPTER 5

STUDY ONE: METHODS

Ethical Considerations

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Recruitment

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Participants

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Data Collection

95

Data Analysis

97

Validity Issues

102

Chapter 5 Summary

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CHAPTER 6

STUDY ONE: RESULTS & DISCUSSION

Results

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Discussion

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Implications for Study Two and Beyond

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Limitations

137

Chapter 6 Summary

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CHAPTER 7

STUDY TWO: DESIGN OF THE MOBILE APP PARENT TRAINING PROGRAM

Contribution of Study One Results

141

Intervention Content of the Mobile App

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Instructional Design and Andragogy

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Chapter 7 Summary

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CHAPTER 8

STUDY TWO: METHODS

Participants

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Settings

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Materials

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Experimental Design and Procedure

153

Independent and Dependent Measures

166

Data Collection

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Fidelity of Implementation

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Inter-Observer Agreement (IOA)

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Social Validity, Treatment Acceptability and Usability

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Data Analysis

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Chapter 8 Summary

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CHAPTER 9

STUDY TWO: RESULTS

Parents’ Declarative Knowledge on Intervention Strategies

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Parents’ Intervention Skills

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Child Communication Outcomes

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Social Validity, Mobile App Usability and the Use of BMT Training Model

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Chapter 9 Summary

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CHAPTER 10

STUDY TWO: DISCUSSION & CONCLUSIONS

Improving Access to ASD Intervention

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Parents Increased and Maintained Intervention Knowledge and Skills

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Differential Positive Child’s Communication Outcomes and its Implication

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Behavior Modeling Training (BMT) Enhances Training Effectiveness

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Strong Utility, High Acceptability & Practical Significance

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Limitations

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Suggestions for Future Research

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Conclusion

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REFERENCES

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APPENDICES Appendix 5.1

Qualitative Data Preparation and Transcription Protocol

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Appendix 5.2

Initial Coding Scheme for Study One

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Appendix 5.3

Calculation of Inter-Rater Reliability for Study One

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Appendix 5.4

The Hand Notes of the Researcher in Study One

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Appendix 7.1

Development of the Mobile App Parent Training Program

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Appendix 7.2

Written Instructional Content/Video Scripts for the

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MAP4SPEECH Program Appendix 7.3

Multiple Choice Questions for the Quizzes in the

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MAP4SPEECH Program Appendix 7.4

Selected Game Details in the MAP4SPEECH Program

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Appendix 8.1

Initial Assessment Checklist for Study Two

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Appendix 8.2

Intake Assessment Form

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Appendix 8.3

Reinforcement Assessment for Individuals with Severe

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Disabilities (RAISD) Appendix 8.4

Treatment Acceptability Rating Form (Intake assessment)

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Appendix 8.5

Map4speech: A Quick User Guide

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Appendix 8.6

Procedural Integrity for Psychologist’s Feedback

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Appendix 8.7

MAP4SPEECH: Mobile App Parent Training Program

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Satisfaction Questionnaire Appendix 8.8

Parent Behavior Coding Sheet & Child Behavior Coding

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Sheet Appendix 9.1

Calculations and Definitions of Various Criteria for

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Within- and Between-phase Pattern Analyses Appendix 9.2

Within-and Between-Phase Analysis of Parent

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Intervention Behaviors for Individual Parent Participant Appendix 9.3

Within-Phase and Between-Phase Analysis of

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Spontaneous/ Prompted Communication Variables for Each Child Participant Appendix 9.4

Social Validity Results of the MAP4SPEECH Questionnaire

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LIST OF FIGURES Page

FIGURES Figure 3.1

Overview of the research design

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Figure 5.1

The audit trail for study one

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Figure 8.1

The five phases in Study 2

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Figure 8.2

An overview of Study 2 research design

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Figure 8.3

An illustration of the relations between independent and

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dependent variables (IV & DV) in Study 2 Figure 9.1

Percentage of correct quiz responses across parent

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participants Figure 9.2

Total minutes spent on completing each quiz across parent

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participants Figure 9.3

Number of trials needed to pass each game across parent

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participants Figure 9.4

Total time spent on passing each game across parent

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participants Figure 9.5

Percentages of intervention skills attained across three parents

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from Phase 1 to Phase 5 Figure 9.6

Frequency of child’s prompted utterances/pointing gestures

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across three child participants and percentage of parent’s intervention behaviors across all phases Figure 9.7

Frequency of child’s spontaneous utterances/pointing gestures

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across three child participants and percentage of parent’s intervention behaviors across all phases Figure 9.8

David’s longest prompted/spontaneous utterances per session

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across all phases Figure 9.9

General satisfaction and usefulness of the MAP4SPEECH

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program Figure 9.10 Usefulness of the specific intervention techniques

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Figure 9.11 Usefulness of the training components

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LIST OF TABLES Page

TABLES Table 4.1

Demographic Profile of Participants in Study One

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Table 4.2

Interview Questions in Study 1

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Table 6.1

Themes and Subthemes of Study 1

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Table 6.2

Goals for Children

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Table 6.3

Dreams of Parents

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Table 6.4

Limited and Insufficient Services

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Table 6.5

Financial Strains

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Table 6.6

Emotional Strains

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Table 6.7

Struggle to Be a Therapist

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Table 6.8

Spouse as An Anchor

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Table 6.9

Family Cohesion

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Table 6.10 Support from Social Network

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Table 6.11 ‘Cultivate Optimism’

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Table 7.1

Curriculum Summary

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Table 8.1

Parent Participant Characteristics at Intake Assessment

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Table 8.2

Child Participant Characteristics at Intake Assessment

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Table 8.3

Toys Used for Each Parent-Child Dyad in Phase 1, 2 & 3

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Table 8.4

Materials Used for Each Parent-Child Dyad in the

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Novel Settings (Phase 4) Table 8.5

Components and Outcome Measures of Independent Variable:

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Mobile App Parent Training Program Table 8.6

Parent and Child Behavior Variables and Definitions

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Table 8.7

Treatment Fidelity on Feedback Sessions

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Table 8.8

Inter-Observer Agreement on Fidelity Measures of Feedback

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Sessions Table 8.9

Inter-Observer Agreement for Parent’s Intervention Behaviors

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Table 8.10

Inter-Observer Agreement for Child’s Functional

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Communications Table 9.1

Number of Practice Videos Produced and the Time Spent by

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Each Parent Across Phases

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Table 9.2

Fidelity of Intervention Implementation in All Phases across

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Three Parents Table 9.3

Before and After Program TARF-R Scores Across Parent Participants

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ABSTRACT Communication intervention in early life can significantly impact long term outcomes for children with autism spectrum disorder (ASD). However, limited resources and high costs have hindered children from receiving prompt and timely intervention. Parents of children with ASD can be vital and important intervention resources, and training them to be therapists can help reduce costs for intervention. The current study aims to evaluate the use of a mobile application as a training medium to disseminate intervention skills of naturalistic language intervention to parents effectively and efficiently. The primary purpose of this research is to examine the effectiveness of using a mobile application (a) to train parents to implement naturalistic language intervention with their young child with ASD; and (b) to increase their child’s spontaneous communication and requesting language skills. This study utilized a sequential mixed method design with the collection of both qualitative and quantitative data. In Study 1, ten local parents were interviewed on their intervention journey with their child with ASD. The results of this qualitative inquiry informed the development of the mobile app parent training program. Then a mobile app was developed with the instructional design of behavioral modeling training (BMT) to deliver a curriculum of naturalistic language intervention. In Study 2, a multiple baseline single case experimental design was conducted across three parents and their children with ASD aged 2 to 5 years to evaluate the impact of the mobile app as a training tool for delivering naturalistic language intervention. Behaviors of both parents (10 parent behaviors) and children (5 child behaviors) were measured in 5 phases: baseline, parent training, post-training intervention, novel settings and 1 month follow

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up. Interobserver agreement (IOA) on target parent behaviors and child behaviors were collected for at least 33% of total sessions and an average agreement of over 85% was achieved. Procedural integrity of parents’ intervention techniques were above 80% on average during post training intervention. Parents’ acceptability of the mobile app and program satisfaction ratings were administered with survey forms. Results indicate that (a) parents achieved an increase in knowledge on the principles of naturalistic language intervention via the mobile application during the course of parent training; (b) parents showed an increase in the application of intervention techniques in naturalistic settings; and (c) their respective children showed an increase in spontaneous word use. The results show that mobile applications are a promising means for improving efficiency and effectiveness in disseminating evidencebased practices for ASD intervention. Mobile platforms will close the research-practice gap, multiply intervention resources in both developed and developing countries for individuals with ASD, and provide prompt intervention without delays.

CHAPTER ONE INTRODUCTION

We have a shock when the psychologist said that he seems to be mild to moderate autism … because we don't have any of such history in our family so we don’t know much about autism that time. So, that’s why we were shocked. What is autism you know? It’s so new to us. We didn’t know anything about it. Iris, a parent in Study One

Autism spectrum disorder (ASD) has attracted remarkable clinical attention and has been massively researched since it was first described by Leo Kanner (1943) more than 70 years ago. Kanner (1943) was the child psychiatrist who first described and reported some eleven cases of children with clinical features of “autistic disturbances.” The variety of symptoms includes “extreme autistic aloneness,” inability to use language for communication, echolalia, and monotonous stereotypic, obsessional behaviors (Wolff, 2004). He proposed that their essential common characteristics could form a unique syndrome and first put the name “early infantile autism” to describe the children whom he had observed. One year later in 1944, separately from Kanner, Hans Asperger in Vienna, also described four cases whom he had seen as “autistic psychopathy of childhood,” which was later termed as Asperger’s Syndrome (Hippler & Klicpera, 2003). Different from the children described by Kanner (1943), these children were able and often gifted in mathematics or science and could make objective judgments towards self. These able children were generally poor in social and emotional

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relationships, had peculiar special interests and were clumsy compared to their peers. Although there were earlier accounts of clinical features in children who showed similar characteristics (e.g. Frith, 2003; Houston & Frith, 2000; Wolff, 2004), Kanner and Asperger were the researchers who first coined the terms autism and Asperger Syndrome respectively for this enigmatic disorder. Since the inception of the terms, the definition and the diagnostic criteria of autism have changed over time. Autism Spectrum Disorder is the label which is most recently used in the latest Diagnostic and Statistical Manual of Mental Disorder, Fifth Edition (DSM-5; American Psychiatric Association, 2013).

Clinical Features of Autism Spectrum Disorder Autism spectrum disorder (ASD) is one of the commonly diagnosed neurodevelopmental disorders in childhood. According to the Diagnostic and Statistical Manual of Mental Disorder, Fifth Edition (DSM-5; American Psychiatric Association, 2013), the diagnostic label autism spectrum disorder became an independent category under the group of neurodevelopmental disorders. It was preceded by pervasive developmental disorders recorded in the previous DSM edition (DSM-IV-TR; American Psychiatric Association, 2000) which referred to a group of five disorders (i.e., autistic disorder, Rett’s disorder, childhood disintegrative disorder, Asperger’s disorder, and pervasive developmental disorder not otherwise specified [PDD-NOS]). The DSM-5 merged autistic disorder, Asperger’s disorder and PDD-NOS into the category autism spectrum disorder and reduced the triad impairments (i.e. impaired social interaction, impaired social communication and restricted behavior pattern) into two – impaired social interaction and communication, and restricted behavior.

INTRODUCTION § 3

Although the DSM-5 diagnostic criteria have changed from three to two, the specificity in each diagnostic criterion has increased to reflect that the disorder is indeed a spectrum disorder. As it is a spectrum disorder, the syndrome shows a wide variability in the presence and intensity of the symptoms. The disorder is characterized by significant impairments in communication and social interaction, with the occurrence of restricted and repetitive behavior, but the level of impairments for those who are affected by ASD varies from one case to another. Different dimensions and levels of symptoms in each diagnostic criterion are indicated with illustrative words and examples (see DSM-5, p. 50). The severity specifiers are also introduced to describe succinctly the current symptomatology over the two areas of impairments (i.e., level 1 ‘requiring support,’ level 2 ‘requiring substantial support,’ level 3 ‘requiring very substantial support’). Additional specifiers are introduced (e.g. with or without accompanying intellectual impairment) to further distinguish one person from another with the same diagnosis. For instance, for some individuals with ASD, their impairments can be severe with an onset prior to 3 years of age, accompanied with developmental delays or intellectual disabilities. Other individuals with ASD may have average intelligence with mild impairments in communication and social interaction. Nonetheless, the disorder brings far reaching and life-long impact to each individual with ASD as well as to their families.

Prevalence The definition of autism spectrum disorder has changed over time and the modification of diagnostic criteria for ASD in DSM-5 from DSM-IV-TR clearly reflected the change. Thus, the prevalence estimate of ASD is a subject for debate.

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Although the epidemiologic studies of ASD already started in the late 1960s and early 1970s (Centers for Disease Control and Prevention, 2014), there was not much concern or public attention on the significant increase in the number of ASD diagnoses until the past ten years. According to Newschaffer et al. (2007), the prevalence of ASDs in developed countries was considered to be at least 60 per 10,000 in 2006. ASD was already considered to be much more common than previously known, and was found to be second in frequency to mental retardation among all developmental disorders in the United States. Two years later, the Centers for Disease Control and Prevention (CDC) in the United States reported a stunning 57% increase in prevalence since 2002 (Centers for Disease Control and Prevention, 2009). The increase in the number of diagnoses of ASD has alarmed professionals because the data suggested that approximately 1% of children now exhibit symptoms of ASD. Park (2009) of Time Magazine reports that there are approximately 1.5 million of individuals in the United States and 67 million of adults and children who have ASD worldwide. Using the figures by CDC (2009), the ASD prevalence rate was higher than childhood leukaemia (1 in 200) which is one of the most common childhood chronic diseases. The CDC considers ASD a significant public health concern and highlights the urgent need for research on support services for families of children with ASD (Park, 2009). The magnitude and severity of ASD was described as a “global public health crisis” and a “developmental disability pandemic” by a congressman in the United States (Smith, 2011). The latest prevalence estimate from CDC (2014) indicates that one in 68 children aged 8 years has ASD on the 2010 statistics and it is another 30% increase since 2008. However, Hill, Zuckerman, and Fombonne (2014) were more conservative in concluding that there was a true increase in ASD occurrences for the past ten years.

INTRODUCTION § 5

Based on their comprehensive systematic review of epidemiological surveys (81 studies worldwide between 1966 and early 2013), they concluded that the current average prevalence is about 66/10,000, which is approximately 1 in 152 children affected, with more males affected than females (5:1). They attributed the increase in prevalence estimates to variability in case ascertainment methods over time and across different studies due to factors such as changes in concepts, case definitions, service availability and awareness of ASD among professionals and the public. They hesitated to conclude if there is a true increase in actual diagnostic cases for ASD, until more surveys are completed. Although the broadening of the diagnostic criteria (e.g. the introduction of DSM-5 criteria) and the increase in clinical recognition of ASD have likely caused a significant increase in the number of diagnosis in recent years, a true increase in the prevalent rates cannot be ruled out due to known factors such as increase in parental age over the past 20 years (Grether, Anderson, Croen, Smith, & Windham, 2009) as well as other unknown factors. Nevertheless, whether there is a true increase in the ASD diagnoses or not, each number of ASD diagnoses represents a child and a family who need services and assistance to cope with this lifelong disorder. Even the most conservative prevalence estimate (62/10,000 as cited in World Health Organization, 2013) indicates that there are tens of millions of children and adults who have ASD worldwide. It certainly poses great public health concerns when these figures are applied to populated nations in Asia, such as China and India. For instance, in China, it was estimated that there are about 13.7 million individuals with ASD (Sun, Allison, Auyeung, Baron-Cohen, & Brayne, 2013). The World Health Organization (WHO) asserts that children with ASD, like other children with disabilities, have the right to develop “to the maximum extent

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possible” (WHO, 2012, p.18). But in many countries, there are inadequate programs and services providing for young children with disabilities. When available, these programs are not easily accessible (e.g. located in urban areas), not inclusive into mainstream education and often costly (WHO, 2012).

Problem Statement: Shortage of Resources Global needs and perspectives. There is a shortage of programs and services for children with disabilities (and children with ASD included) worldwide, in developed and developing countries alike (World Health Organization, 2012). The United States is one of the forefront countries in terms of developing innovative educational programs for individuals with disabilities, yet, they experience two dimensions of the shortage problem – i.e., inadequacy of services and variability of quality of services across different places. First, the inadequacy of services includes lack of professionals and resources to provide for children with ASD. Even though it is observed that there are more professionals and resources now than in the past, it is still difficult to catch up with the pace of the increasing number of diagnoses. There has been a critical shortage of qualified educators in the field of ASD in the United States (McGee & Morrier, 2005; National Research Council. Committee on Educational Interventions for Children with Autism, 2001). More than a decade ago, Jacobson and Mulick (2000) estimated that 588 doctoral level program directors, 94,000 tutors, and 2,300 consultants were necessary to meet the need. Now it is expected that the ratio for professionals- child with ASD is even higher in view of the increasing number of diagnoses. Boe (2014) reaffirms the problem of chronic shortage of qualified special education teachers as a major issue in

INTRODUCTION § 7

the field of special education. Zablotsky et al. (2015) reported that around 30% of parents in the United States felt their child developmental needs are not being met by current treatment and services. Second, there is a variability of the quality of services in special education. This dimension of the problem relates to and intertwines with the issue of shortage of teachers and professionals for children with ASD. Boe (2014) reviewed the demand and supply of special education teachers at the national level for the past 15 years. He found that there has been an adequate supply of people who are willing to become special education teachers; however, there has not been an adequate supply of teachers who are qualified for their teaching assignments. In other words, unqualified individuals are accepted as there is a shortage of qualified and effective teachers due to turnover, attrition and burnout. The end result is that special education teachers tend not to use techniques that are effective and evidence-based (Hess, Morrier, Heflin, & Ivey, 2008; Stahmer, Collings, & Palinkas, 2005). The research-practice gulf has hampered the quality of education and services, and eventually the overall development of children with ASD and their families. Regional and local needs. Countries in Asia face a similar or worse problem with a shortage of ASD services. As reported before, China is the country with most ASD population, in proportion to its huge population. Sun et al. (2013) found that the healthcare system and educational services for children with ASD was “profoundly limited,” from diagnosis to service delivery and intervention programs, due to the lack of knowledge in professionals and the under-development of these systems in China. In Singapore, current existing data from the Ministry of Social and Family Development (MSF) on prevalence are estimates based on incidence rates and service

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utilization. It was reported that approximately 3 per cent of the resident population has some forms of disabilities from which there are about 7,000 preschool children with developmental difficulties and 13,000 school-going children with special needs. Like other countries, there is a chronic shortage of resources, especially on intervention and therapy to support children with ASD and their families (Enabling Masterplan 20122016 Steering Committee, 2012). In Singapore, the first stop for children with ASD and their families is usually the clinics in public hospitals. They have been seeing about 5,200 patients a year with developmental difficulties, with 2,000 new cases each year (Hoe, 2010). The reported waiting time is 2 to 3 months to see a doctor and another 4 months to see a psychologist at National University Hospital, and 6 to 9 months to see a speech therapist at KK Hospital (Hoe, 2010). The mean age of children being referred to subsidized Early Intervention Program for Infants and Children (EIPIC) centers is 35.8 months, compared to the mean age of referral to early intervention in the United States which is 15.5 months (Enabling Masterplan 2012-2016 Steering Committee, 2012). EIPIC centers cannot catch up the demands for educating these children. These programs currently only serve about 40% of some 2000 children who are diagnosed with moderate to severe disabilities. The remaining 60% of these diagnosed children with milder conditions do not have access to subsidized early intervention services (Enabling Masterplan 2012-2016 Steering Committee, 2012). There are currently 17 EIPIC centers with a heterogeneity of service and educational contents (either behavioral and/or developmental approach), but the service delivery model is prominently centerbased, with educational and therapy support on site in small groups or on one-to-one basis (Poon & Lim, 2012; Poon & Yang, 2014).

INTRODUCTION § 9

In addition, there are 20 Special Education (SPED) schools run by voluntary welfare organizations (VWOs) which receive government funding, with a total of 4, 619 students and 737 teaching staff (Poon, Musti-Rao, & Wettasinghe, 2013; Tan, 2009). Five of these schools cater to children with ASD, together with other special needs children, and only one offers the mainstream school curriculum (i.e. Pathlight School). There is no legislation to support inclusion in mainstream education but there are some initial voluntary efforts in preschools, and formal initiatives in primary and secondary school settings (Poon et al., 2013; Yeo, Neihart, Tang, Chong, & Huan, 2011). There is increasing support for inclusive education in mainstream schools since 2004, with the introduction of allied educators (Learning and Behavioral Support; AED [LBS]) for better integration of those with special needs. Currently AED (LBS) provide specialized support in classroom, small group intervention, in transition and case management in all primary schools and one-third of secondary schools. Although the inclusion support for children with ASD was introduced in recent years, there are still many challenges and barriers in this area. Yeo et al. (2011) identified that a shortage of professionals and of specialized training and resources, and social stigma associated with disablities are the key barriers for preschool inclusion in Singapore. Poon et al. (2013) observed the current barriers to inclusion for students with disabilities are due to reasons such as no differential instructional contents for students with learning difficulties, the social stigma of receiving special accommodation, low qualifications of special education teachers and no legislation for compulsory education for students with disabilities. Implications of the problem. The chronic shortage of services and education for children with ASD and their families bring different dimensions of implications to these children, families and the society at large. The literature has shown that early and

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immediate intervention has positive effects on the symptoms of children with ASD (Eldevik et al., 2009; Hume, Bellini, & Pratt, 2005; Salt et al., 2002; Tews, 2007). Without early and immediate intervention, children with ASD are at risk for developing problem behaviors and have higher likelihood of developing serious psychiatric symptoms in future (R. L. Koegel, Koegel, & Surratt, 1992). The economic impact accompanied with these symptoms is huge. According to Ganz (2007), direct medical and nonmedical costs for a child with ASD range from US$67,000 to US$72,000 a year. Järbrink and Knapp (2001) found that the lifetime cost for a person with ASD exceeded £2.4 million in Britain. The average service costs for young children with ASD (aged 24-60 months) in the United Kingdom is around £430 per month (with a range of £53£1,116) (Barrett et al., 2012). In China, families of children with ASD reported higher health care expenditures than the provincial household average, of which 19.9% of urban families and 38.2% of rural families bear health care costs over and above their total annual household income (Wang et al., 2012). Higher cost is mainly associated with increasing age and symptom severity. Karst and Van Hecke (2012) examined the impact of the diagnosis of ASD to families. In addition to financial strain, decreased parenting efficacy, increased parenting stress and an increase in mental and physical health problems are among some of the significant impacts to the families. Some of these impacts may result in high rates of divorce, and lower family well-being and quality of life. There are also potential impacts on siblings because of decreased parental attention. The Singapore government aspires to attend to the needs of children and adults with special needs and be a more inclusive society so that “the last are not left behind, the lost have a guiding hand, and the least are the first in our considerations as a

INTRODUCTION § 11

democratic society” (Tan, 2011, p.3). In view of the known impacts on children with ASD and their families, there is a pressing need to develop effective, alternative intervention delivery strategies to combat the shortage of resources and meet the growing need for treatment, here and abroad.

Rationale: Addressing the Current Limitations with Evidence-Based Practices, through Parent Training and the Use of Technology Only when children with ASD receive timely evidence-based interventions will their daily functioning improve and their families have less negative impact from the diagnosis of ASD (Eldevik et al., 2009). However, effective dissemination of evidencebased practices is another problem as it has been partially hindered by the shortage of teachers and resources (Boe, 2014). Overcoming the problem of dissemination of evidence-based practices becomes an important priority so that children with ASD can receive quality intervention. Parent training in evidence based intervention via mobile technology seems a promising avenue for addressing the current limitations of intervention. Dissemination of evidence-based practices in real-world settings. Children with ASD deserve to receive timely and quality intervention so that their behavioral symptoms can be alleviated. Some of the key deficits for young children with ASD are communication deficits and difficulty acquiring functional speech (Weitz, Dexter, & Moore, 1997). Although the percentage of children with ASD having functional speech has risen over the years because of early intervention (Goldstein, 2002; Rogers, 2006), promoting functional speech among preschoolers with ASD remains a high priority for parents because language is definitely one important variable in predicting better future

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outcomes (Howlin, Goode, Hutton, & Rutter, 2004). Therefore, there is an overwhelming support for early intervention, especially targeting improvement of communication of children with ASD. Among the early intervention efforts, applied behavior analysis (ABA), naturalistic teaching strategies and pivotal response treatment (PRT) are the few evidence-based practices which demonstrate effectiveness in altering communication outcomes in young children with ASD (National Autism Center, 2009). Evidence-based practices, using empirical research to inform practice, are the standard for treatment and intervention for individuals with ASD. These few evidence-based treatment methods are established as efficacious for children with ASD in clinical trials, however, the translation of these evidence-based practices into early intervention programs has been minimal (Stahmer et al., 2005). The quality of implementation can be measured by treatment fidelity of evidence-based practices. A recent study examines the treatment fidelity of ASD intervention in public schools in the United States. They reported low fidelity across teachers before the experimental training (Stahmer et al., 2015). The factors for poor implementation include limited instruction in specific interventions without ongoing coaching and feedback, lack of modified evidence-based practices to use in real life classroom settings, and the teacher’s own belief or pedagogy (Cornett & Knight, 2009; Dingfelder & Mandell, 2011). Little is known about the nature, the mechanics and the quality of the translation of evidence based practices in early intervention or school settings (Stahmer et al., 2015). Although there are various obstacles in translating evidence-based practices in real life settings, we need to keep tackling these obstacles because there are no better ways to improve children’s overall functioning except through the intervention of

INTRODUCTION § 13

human agents. Empirical studies demonstrated that people who interact with a child with ASD using appropriate techniques can play a significant role in alleviating their behavioral symptoms (e.g. Eikeseth, 2009; Eldevik, Hastings, Jahr, & Hughes, 2012; Ozonoff & Cathcart, 1998). Intensive child-focused behavioral interventions by trained therapists have proved to be an effective way of reducing behavioral difficulties (e.g. Campbell, 2003; Remington et al., 2007). The evidence-based practices may differ in their theoretical orientations and intervention style, but the key common component remains the same, i.e., employing change agents to use evidence-based techniques to interact with child with ASD to improve their functioning. Educational interventions remain most effective in improving the functioning of children with ASD because there is no reliable cure acquiring from the cognitive and biological basis of ASD (Dawson & Osterling, 1997; Hall, 2009; Rogers, 1998). Although not all children with ASD have teachers or professionals accessible to them at their time of need, each child with ASD has their parents or caregivers. They are the key stakeholders in their child’s development. Therefore, providing direct service to the key stakeholders, i.e., parents of young children with ASD, is a viable solution. It addresses the contextual issues of limited resources and overcomes the structural barriers in training teachers in the education system. In view of the chronic shortage of resources in intervention service, supporting parents to be their child’s change agents seems to be a cost-effective and promising method for intervention. There is a strong compelling need to investigate how evidence-based intervention contents and techniques might be translated to parents and how we can train parents to use these intervention contents in an effective way.

14 § CHAPTER ONE

Parent training is a promising means of intervention. Parent training has long been viewed as an important component of early intervention programs for children with ASD (Harris, 1994). Parent training complements and contributes to the effectiveness of behavioral treatments by therapists (Schreibman, 2000; Schreibman & Anderson, 2001), enhances functional communication in young children with ASD (Moes & Frea, 2002) and improves parental coping and mental health (Tonge et al., 2006). McConachie and Diggle (2007) conducted a systematic review on parent implemented early intervention programs. They found that parent training leads to improved child communicative behavior, increased maternal knowledge of ASD, improved communication styles and parent child intervention, and reduced maternal depression. Parents themselves indicated that parent training was the most effective service in contributing to their child’s growth (Hume et al., 2005). Although parent training programs show promising empirical results, researchers in parent education literature have yet to locate specific indicators and variables that lead to effective and successful parent training program in producing various desired outcomes for children and families (Schultz, Schmidt, & Stichter, 2011). In addition, despite parent training efforts, child and family functioning may not be changed because of various obstacles. For instance, professionals reported a high dropout rate in parent training group programs (Bunting, 2004). Parent training requires a high physical commitment from parents. Locally, parents have difficulty following through with the number of sessions required for effectiveness. It may be due to the fact that dual career couples constitute 58% of all families in Singapore (Department of Statistics, Ministry of Trade & Industry, Republic of Singapore, 2006). With their busy lifestyles, they need a more flexible option to help their child. In Singapore, traditional

INTRODUCTION § 15

consultations to parents at the clinic or in the community settings may not be the most satisfactory. These informal parent training sessions tend to happen at the clinics or in school settings where professionals provide information and suggestions to families over a conversation or refer them to books or handouts on how to treat the behavioral symptoms of ASD. Parents seldom have the opportunity to see clinicians in action using therapy techniques to treat behavioral symptoms. Formal parent training workshops are also held and may provide information to parents in a more systematic manner, traditional lecture or didactic style of learning is inefficient for imparting new skills and knowledge and seldom improves parent child interaction as it does not have a coaching component (Salas, Tannenbaum, Kraiger, & Smith-Jentsch, 2012). Although these strategies have been used to augment the intervention, they may not be effective in changing parental behaviors. According to Bandura (1976, 1986), one well-known learning theorist, individuals learn best by observing others, and learners are tremendously influenced by the role models they observe. Therefore, traditional parent training may not provide the optimal environment for parents to learn and modify their behavior to elicit changes in their child with ASD. There is a need to develop and test alternative formats for parent training. Mobile technology for parent training. The use of computer, internet and mobile devices have changed the ways we do business and education in a significant way over the past decades. Utilization of mobile phones or devices (e.g. tablets or iPads) is increasing popular. It is believed that the global mobile penetration will reach 90% by the end of 2020 (Ericsson, 2015) and many people who had no access to fixed line telephone or computer before start to use mobile devices for communication and entertainment (United Nations Foundation, 2009). In the field of medicine, healthcare

16 § CHAPTER ONE

and education, distance consultation or learning with the use of technology (i.e., telemedicine/telehealth or e-learning/m-learning) is a relative new concept but there is substantial body of research which supports the feasibility of distance consultation or learning (e.g. Baharav & Reiser, 2010; Luxton, McCann, Bush, Mishkind, & Reger, 2011; Pellegrini, Steglitz, & Hoffman, 2014; Soares & Langkamp, 2012). For instance, Cason (2011) advocated the potential application and utilization of telerehabilitation in early intervention for children with disabilities. She indicated that telerehabilitation (i.e. long distance learning or clinical provision in the field of medicine) can potentially improve state performance of early intervention in fulfilling the United States Office of Special Education Programs (OSEP)’s quality indicators. It can provide individual educational plans in a timely manner, encourage implementation of intervention at child’s immediate settings, and deliver ongoing consultation and strategies to the families. Technology can provide numerous exciting possibilities for increasing access and enhancing effectiveness of parent-led interventions with children with ASD. There are a few published studies which examined the efficacy of using telehealth intervention for parents or therapists of children with ASD (e.g. Baharav & Reiser, 2010; Vismara, Young, & Rogers, 2012; Wainer & Ingersoll, 2014). These studies show early promises of using telehealth practices to change parents’ or therapists’ intervention behaviors and improve the functioning of children with ASD. However, only limited conclusions can be drawn due to the small number of studies with a variety of technologies used (e.g. online treatment, use of DVDs, internet access for consultation). This area of research is still in the stage of infancy.

INTRODUCTION § 17

The recent technological development and the boom in medical/health/education apps have attracted much attention and concern. Although thousands of apps in the app stores are used to support health or educational interventions, the vast majority has not been evaluated for efficacy or effectiveness (Kuehn, 2015) and few of them are designed to train the users to conduct evidence based interventions (Jones et al., 2014). The lack of clinical trials of the health/education treatments embedded in these apps can bring potential harm to consumers and end-users and raises the issues of malpractice and ethics (Husain & Spence, 2015; Luxton et al., 2011). Although mobile technology is possible to disseminate ASD evidence-based practices efficiently and effectively, it depends heavily on careful research on treatment effects in relation to the instructional design with technological components with the consideration of scalability and feasibility in real life contexts and sustainability over times. The aim of this research is to investigate the potential utility and effectiveness of using a newly developed mobile application for parent training which emphasizes the use of multimedia to improve functional communication of children with ASD. Currently, there is little knowledge on how a mobile application for parents of children with ASD can enhance both child and family functioning. The current research will help begin to fill the knowledge gap in this area.

Purpose of the Study The primary purpose of the study is to develop and examine the effectiveness of a mobile app parenting program that improves both intervention skills of parent and the functional communication of their child with ASD.

18 § CHAPTER ONE

In order to achieve this aim, a detailed and rigorous review of the literature will guide the development of the research questions, the research plan and the hypotheses for the current research. Therefore, the research questions and hypotheses will be further elaborated in depth in Chapter 3.

Significance of the Study The current study contributes to the field of special education and psychology in at least four ways. First, the study will provide a solution to a practical problem faced by many people in the field of ASD. The study develops and builds an artifact to give timely intervention for children with ASD and involve parents as equal partners with educators in providing intervention to their child. Second, it will demonstrate a novel use of a procedure – using a mobile application with a plausible adult training theory for effective skill transfer to disseminate evidence-based intervention to parents. Third, the study will advance the theoretical knowledge of parent training as it investigates key components for effective adult training. Fourth, it can serve as a prototype from which the results will provide implications on the novel use of a mobile application for training other users or in different contexts in special education and psychology, for instance, training special education teachers to do intervention in their classrooms.

Definitions of Terms This section serves as a handy glossary for the dissertation. Most of the key terms are used in chapter 2 where the background information and the associated literature are located. Some other terms are used in subsequent chapters.

INTRODUCTION § 19

Autism/ Autism spectrum disorder (ASD). According to the Diagnostic and Statistical Manual of Mental Disorder, Fifth Edition (DSM-5; American Psychiatric Association, 2013), an individual with autism spectrum disorder has two distinctive diagnostic characteristics: “persistent deficits in social communication and social intervention across multiple contexts” and “restricted, repetitive patterns of behavior, interests, or activities” (American Psychiatric Association, 2013, p. 50). An individual with ASD is characterized by marked impairments in these two areas but he/she may have different level or severity of impairments, with or without additional impairments (i.e., intellectual and/or language impairments, or medical or genetic condition). Currently when the term autism is used, it can have two meanings. People may mean that it refers to the autistic disorder (as in DSM-IV-TR) or to classical autism as defined by Kanner (1943). However, the term autism is often used in a more general sense to refer to all autism spectrum disorders (Smith, Segal, & Hutman, 2013). In this dissertation, the term autism spectrum disorder (ASD) will be used to represent the disorder. Unless the authors that are being cited use other terms such as Asperger’s Disorder to specify a special group of population within the disorder in their studies, then their discretion will be respected. Evidence-based practices. Evidence-based practices are the intervention practices which use empirical research to inform practice. There are many related terms which denote evidence-based practices such as evidence-based practice in psychology (EBPP), empirically supported therapies, scientifically based practice, and evidencebased treatments. Evidence based practices for ASD intervention are strategies which demonstrate favorable change based on empirical evidence as opposed to strategies that have been constructed without scientific validation. Evidence-based practice can be

20 § CHAPTER ONE

defined in two different contexts. In the first definition, a recognized evidence-based practice is based purely on the treatment efficacy of an intervention, meaning whether an intervention has the capacity to produce a desired size of an effect under ideal or optimal conditions. In the second definition, evidence-based practice, in addition to the elements in earlier definition, concerns treatment effectiveness (i.e. clinical utility) and efficiency (i.e. cost effectiveness) too. It refers to the effects of an intervention in real life contexts. Single case experimental design (SCED or single subject research design). Single case experimental design (SCED), also known as single subject research design, is a quantitative experimental design in which the participant serves as his or her own control, instead of using another individual or a group as the control. SCED aims to draw valid inferences by arranging an experimental situation where it can rule out the impact of extraneous factors that could alternatively explain the results. It characterizes by organizing phases for assessment such as baseline and continuous assessment during and after intervention. More details can be found in Chapter 3. Applied behavior analysis (ABA). ABA is defined as the practical application of using behavioral principles to improve specific behavior and evaluate changes in behavior in respect to its relationship to the environment. The principles of ABA are established on the goals of increasing the likelihood of desirable behaviors by giving positive or negative reinforcement to the child (e.g. tangible rewards such as food, or withdrawing privileges), and decreasing the likelihood of undesirable behaviors by administering positive or negative punishment (e.g. saying ‘no’ to the child, or time-out). Discrete trial training. Discrete trial training is a way of teaching that involves breaking a behavior into most basic functional unit and progressively presenting the

INTRODUCTION § 21

units in a series. It is one of the common teaching strategies in ABA and is essentially adult-directed – one therapist to a child in teaching. Naturalistic Approaches. Naturalistic approaches represent an ASD intervention paradigm which is based on ABA principles. Naturalistic approaches aim to counteract the shortcomings of the ABA approach. They promote the importance of conducting the intervention in a natural setting, encourage generalization and spontaneity, and uses reinforcement of intrinsic social rewards (e.g. attainment of the child’s desire of a certain object) rather than an extrinsic tangible reward. It is generally difficult to define what a naturalistic approach is and there is no general consensus on what constitutes naturalistic language teaching in the literature. There are a few variant intervention models include incidental teaching, pivotal response training, milieu teaching, and natural language paradigm/naturalistic behavioral intervention. The teaching components varied somewhat in each of these studies, but most of these studies shared some common characteristics such as intrinsic reinforcers, natural environment, target on child initiation of communication and pragmatic use of social intervention. In this dissertation, the overarching term ‘naturalistic approaches’ will be used, unless reporting certain studies where specific terms were used to highlight their treatment components within the naturalistic approach (e.g. naturalistic behavioral intervention). Of late, Schreibman et al. (2015) suggested to use the term naturalistic developmental behavioral intervention (NDBI) to reduce confusion and better locate the naturalistic approaches within the continuum of intervention practices. Naturalistic Language Intervention (NLI). This is a term specially used to describe the treatment contents of the current mobile app parent training program. The

22 § CHAPTER ONE

current training curriculum includes the use of naturalistic approaches with components that adheres to child’s developmental stages for communication as well as components of the applied behavior approach (ABA, such as the use of prompts and rewards). The details of the curriculum are depicted in Chapter 7. Behavioral Modeling Training (BMT). The learning model of BMT builds on the theoretical work of Bandura (1976)’s social learning theory. Decker and Nathan (1985) are the key authors who shaped the BMT model for adult training. BMT has been popularly used for psychomotor and interpersonal skills training and rigorously researched for its effectiveness. There are five key components in BMT, i.e., (1) modeling, (2) retention process, (3) behavioral rehearsal, (4) feedback, and (5) transfer of training. BMT is adopted for the instructional design of mobile app components in the current mobile app parent training program. Mobile Application (Mobile app). A mobile application, commonly referred as an app, is a type of application software designed to run on a mobile device, such as a tablet computer or a smartphone. Mobile applications usually serve similar functions to those who accessed to personal computers. However, apps are small units and usually have more focused or limited functionalities. The operating systems are iOS for the Apple Inc. apps, android for the android apps, or windows for the windows enabled apps (Janssen, 2015). Telehealth/mhealth. There are the two common terms to describe the provision of clinical or therapeutic services, healthcare services or intervention with the use of electronic information and telecommunications technologies (i.e., telehealth) or with the use of mobile technology at a distance (i.e., mhealth for mobile health provision).

INTRODUCTION § 23

MAP4SPEECH. It is the name of the newly developed mobile app parent training program in the current study. It stands for Mobile App Program for (4) improving SPEECH. It also has an analogic meaning for the program to serve as a map for parents who feel lost in thinking hard to find a solution and intervention for their child. Dissemination. The US Centers for Disease Control and Prevention defines dissemination “as the intentional spreading of innovations from the developers or originators to the intended users (Centers for Disease Control and Prevention, n.d.-a).” (Vince Whitman, 2009, p.20) Implementation. Implementation can be defined as “a specified set of activities designed to put into practice an activity or program of known dimensions. It is a means of achieving an end, an instrument, or an agent.”(Vince Whitman, 2009, p.20). Therefore, implementation is different from dissemination as implementation focuses on how to put an idea into real life practice where dissemination concerns about the spreading of practical innovations to the intended users.

Organization of the Dissertation The aim of the research study is to examine the effectiveness of using a mobile app parent training program to improve the functional communication of children with ASD. The dissertation has been organized into two sections. The first section (Chapter 1-6) introduces the background and the theoretical frameworks from which the mobile app parent training program is designed and developed. The second section (Chapter 710) focuses on a detailed description on the development, the presentation and

24 § CHAPTER ONE

evaluation of the results and, the discussion of the newly developed mobile app parent training program. The current chapter (Chapter 1) introduces the research problem, the purpose and significance of the study and, elucidates the direction of the current research. In chapter 2, relevant literature relating to ASD intervention will be reviewed. It covers the discussion of evidence-based practices in ASD intervention, current practices of parent training, adult training literature including behavioral modeling training, and the current status and issues of using mobile technology in early intervention and in the field of pediatrics and psychology. Chapter 3 explicates the research design and the methodology of Study One and Two in this research. It discusses the use of the mixed methods design and argues the practical advantages of utilizing both qualitative and quantitative methods to fulfill the aim of the research study. Chapter 4 examines the relevant literature and the theoretical frameworks in the qualitative study (Study One) to examine parental journey of ASD intervention. Chapter 5 presents the methods of doing the qualitative study with the use of applied thematic analysis. Chapter 6 presents the results and the discussion of Study One and how the implications of Study one contribute to the development of the mobile app intervention tool for parent training. Chapter 7 elucidates the design of the parent training mobile app – MAP4SPEECH. Chapter 8 presents the methods of Study Two – a multiple baseline single case design evaluating the effectiveness of the mobile app parent training program. Chapter 9 presents the results of Study Two. Chapter 10 discusses the results of Study Two and their theoretical and practical implications to ASD research and gives a conclusion to the research study.

INTRODUCTION § 25

Chapter 1 Summary Chapter 1 begins with an introduction of ASD and describes the clinical features and symptoms of ASD, along with the observation of the increasing prevalence of this disorder. The increasing number of ASD diagnoses poses an even greater demand for ASD intervention provided by professionals and teachers. In many countries, the shortage of resources including the lack of teachers and professionals becomes more acute because of more ASD cases. As a result, there are developmental implications for these children with ASD and, huge emotional and financial burdens for their families and the society at large when these children cannot receive timely and adequate intervention. This situation is not foreseen to improve within a short period of time and therefore, we need to find solutions to overcome the problem of the lack of resources. In the parent training literature, using parents as change agents showed promises of intervention effectiveness and can multiple the intervention manpower. However, there are still some knowledge gaps on how to train parents or adults on using intervention skills with fidelity and sustainability. Further investigations on how to overcome existing parent training obstacles with the use of mobile technology seem to be a plausible way to solve the problem in disseminating intervention skills. The current study aims to find a solution to the problem by investigating how a newly developed mobile app parent training program can alleviate the manpower issues, provide a vital platform for parents of children with ASD to learn intervention and, increase the accessibility of evidence-based services. The significance and the organization of the dissertation of the current study are presented.

26 § CHAPTER ONE

CHAPTER TWO LITERATURE REVIEW

This chapter reviews the research areas that are relevant to the current research study. There are discussions and reviews of evidence-based practices in ASD research including applied behavioral analysis (ABA) and naturalistic approaches, parent training programs, adult training theories including behavioral modeling training, and the current status and issues of digital media and mobile technology in psychological treatments and interventions. The chapter ends with a summary.

Evidence-Based Practices ASD research occurs within the history and contexts of its times (the zeitgeist – the spirits of the time). The history, theories and hence the intervention modalities of ASD in the past 70 years have been very much shaped by prevailing ideologies and/or the socioeconomic situation of the period (Benjafield, 2005; Danziger, 1990). Psychoanalytic theory, behaviorism, developmental theories, and neuropsychological and cognitive theories of ASD each contributed to our understanding of the behaviors of ASD and inspired intervention modalities with an aim to improve the individual functioning of people with ASD. In recent years, there have been tremendous developments in neuropsychology regarding the biological aspects of ASD (BaronCohen, 2004; Ratajczak, 2011; Rutter, 2005; Szatmari, 2003) and in exploring the cognitive deficits found in people with ASD. However, to date, no reliable biomarkers have been identified to diagnose ASD (Anderson, 2014) and little applied knowledge about how the cognitive deficits of ASD can advance interventions exists (e.g. Howlin,

27

28 § CHAPTER TWO

Baron-Cohen, & Hadwin, 1999; Golan et al., 2010). Since there is no reliable ‘cure’ acquiring from the cognitive and biological causes of ASD, educational interventions (i.e. interventions which are based on learning theories) remain the promising avenue to build skills and tackle with problem behaviors in the near future (Dawson & Osterling, 1997; Hall, 2009; Rogers, 1998). There is an increasing trend to treat the symptoms associated with ASD with evidence-based practices in the developed world because of the potential harms of untested and expensive treatments in the market which are not proved to be effective, and. at times, may even be harmful to their child with ASD. Evidence based practices for ASD intervention are strategies which demonstrate favorable change based on empirical evidence as opposed to strategies that have been constructed without scientific validation (Yell, Drasgow, & Lowrey, 2005). To date, there is no general consensus on one universally accepted standard to define the criteria for ‘evidence-based practice’ for ASD intervention in psychology and education (Odom, Collet-Klingenberg, Rogers, & Hatton, 2010). The most commonly used standards for evidence based practices for ASD research include evidence-based practice in psychology (APA Prediential Task Force on Evidence-Based Practice, 2006), guidelines in the What Works Clearinghouse (US Department of Education http://ies.ed.gov/ncee/wwc), and Task Force on Quality Indicators for Special Education Research (Odom et al., 2005; Odom et al., 2010). Two broad categories of definitions of evidence-based practice are observed. The first is purely based on the treatment efficacy of an intervention, meaning whether an intervention has the capacity to produce a desired size of an effect under ideal or optimal conditions (Chambless & Hollon, 1998). Thus, the kind of research methodology, the rigor and the quality of a research study and the number of

LITERATURE REVIEW § 29

independent replications become the focal concerns to support the treatment efficacy. The second category of definitions for evidence-based practices not only includes criteria for treatment efficacy, but also treatment effectiveness (i.e. clinical utility) and sometimes efficiency (i.e. cost effectiveness) (Chambless & Hollon, 1998; Kazdin, 2008; Satterfield et al., 2009). It concerns the effects of an intervention in real life contexts. Therefore, the focus is on how to narrow the gap between controlled clinical trials and real life applications of a particular efficacious intervention and produce favorable outcomes (Glasgow & Emmons, 2007; Kazdin, 2008; Neta et al., 2015). In the more narrow definition of evidence based practice where concern for efficacy is emphasized, the use of randomized clinical trials (RCTs) has been identified as the gold standard in establishing efficacy in intervention studies (Lord et al., 2005; Smith et al., 2007). However, some researchers argue that the current emphasis on randomized controlled trials as the qualifying criterion for evidence-based practice of ASD intervention is a self-limiting concept because ASD is a spectrum disorder with heterogeneous representation of symptoms among different individuals (Mesibov & Shea, 2010; Rogers & Vismara, 2008) and hence small sample sizes are the norm (Shadish & Rindskopf, 2007). Single case experimental design (SCED or single subject research design) has been popularly adopted as another suitable methodology to establish experimental control and treatment efficacy among ASD intervention research (Horner et al., 2005; Matson, Turygin, Beighley, & Matson, 2012; Odom et al., 2003). Single case experimental design was made eligible, and parallel with other group experimental and quasi-experimental studies for evaluation of evidence based practice for ASD intervention. In the United States, the What Works Clearinghouse

30 § CHAPTER TWO

(WWC)1 review team ventured into developing pilot standard for single case designs for ASD intervention (September, 2011; Kratochwill et al., 2013; Maggin, Briesch, & Chafouleas, 2013), showing their recognition of validating single case design as an experimental methodology in establishing causal relationships. In fact, by 2002, there were more than 45 professional, peer-reviewed journals reporting single case experimental research (American Psychological Association, 2002). Odom et al. (2003) had earlier proposed criteria for single case research design studies. Thirty-seven studies of ASD intervention met their inclusion criteria (i.e., well-established evidence of effectiveness, emerging and effective practices, or probably efficacious). Reichow, Volkmar, and Cicchetti (2008) also suggested evaluative criteria for evidence based practice for ASD intervention. They acknowledged the value of single case experimental design in establishing necessary evidence and attempted to synthesize the use of group research and single case research in establishing evidence of empirical validation. In the United States, there were federally-funded efforts to identify evidencebased practices to help improve professionals’ and parents’ understanding of the many research-based practices for children with ASD (National Autism Center, 2009; National Professional Development Center [NPDC] on Autism Spectrum Disorders, 2012). The National Autism Center (2009) established four categories in the Strength of Evidence Classification System (SECS): established, emerging, unestablished, and ineffective/harmful as well as assessing the quality and the rigor of the studies with the Scientific Merit Rating Scale (SMRS). They required at least two group designs or four single subject design studies, or a combination of these groups and single subject design 1

A government organization which was funded and established by the Institute of Education in the United States.

LITERATURE REVIEW § 31

methodologies, with high rating on SMRS for any established kind of intervention. As a result, they identified 11 established evidence-based practices for ASD intervention. Around two-thirds of the established treatments were from the behavioral literature (i.e. applied behavior analysis (ABA), positive behavioral support and behavioral psychology). Out of the remaining one-third, 75% were practices originated from the behavioral approach (e.g. pivotal response treatment, natural language paradigm). NPDC’s definition (2012) of evidence-based practice was two high quality experimental and quasi-experimental group design studies, or five independent single subject design studies, or a combination of the above evidences (i.e., at least one independent RCT or quasi-experimental group design with three independent single subject design studies). Though using different categorization, both NSP and NPDC identified and covered most of the key intervention practices in the literature. Around 75% of NPDC evidence based practices overlap with NSP established treatments. The behavioral approach and its applied intervention modalities such as ABA and natural language paradigm yielded the most promising results and is currently one of the most vital and significant kinds among the evidence based practices for ASD intervention.

Early Intensive Behavioral Intervention (EIBI) Young children with ASD are characterized by deficits in communication, social interaction and meaningful play. Early intervention alters the outcomes of ASD child’s developmental trajectory (Howlin et al., 2004; National Research Council, 2001; Ramey & Ramey, 1998). Early intensive behavioral intervention (EIBI; or Lovaas therapy) was one of the most early forms of ASD intervention and to date, the most studied comprehensive treatment model for young children with ASD (Reichow, 2012). EIBI is

32 § CHAPTER TWO

based on the principles of applied behavior analysis (ABA), characterized by intensive home-based or center-based program of 2 years or more, 40 hours per week. It delivers discrete trial training with a 1-to-1 adult to child ratio of a carefully formulated curriculum. The curriculum usually consists of major essential life skills for early childhood ranging from joint attention, to functional communication, to self-care and to readiness for school (Cooper, Heron, & Heward, 2007; Leaf & McEachin, 1999; Maurice, Green & Luce, 1996). The principles of ABA are established on the goals of increasing the likelihood of desirable behaviors by giving positive or negative reinforcement to the child (e.g. tangible rewards such as food, or withdrawing privileges), and decreasing the likelihood of undesirable behaviors by administering positive or negative punishment (e.g. saying ‘no’ to the child, or time-out) (Cooper et al., 2007). In order to administer reinforcements effectively, preference assessments and motivational systems are utilized. Discrete trial training teaches new behavior by breaking it into its most basic functional units and progressively presenting the units in a series. It is a key teaching strategy in ABA and is adult-directed – one therapist to a child. The stimulus (i.e., the instruction) is carefully planned in order to elicit a response, which is followed by a positive or negative reinforcer, depending on the quality of the child’s response. Prompts are given with the stimulus when the child has difficulty performing the set task and can be in a form of verbal instructions, gestures, or modeling or physical guidance. They are systematically faded out when the child is more capable of performing a certain task. Careful behavioral records are administered in order to discern the pattern of behavioral occurrence during and after the intervention (Cooper et al., 2007).

LITERATURE REVIEW § 33

The first ground-breaking EIBI study was conducted by Lovaas (1987). It was a 2 year ABA intensive treatment program with multiple group comparisons (i.e., a quasiexperimental group of high treatment intensity, one control group with less treatment intensity and a control group with no ABA treatment). The experimental group of children (n =19) received more than 40 hours per week of intensive ABA therapy while the control group (n =19) received the same ABA treatment with less intensity (10 hours per week). It was found that almost half of the experimental group (47%) achieved normal intellectual and educational functioning (i.e., normal range of IQ scores and good academic performance at first grade). In contrast, only 2% of the children in control groups achieved normal educational and intellectual functioning and 45% of them were mildly intellectually disabled. Subsequently, McEachin, Smith, and Lovaas (1993) followed up with the same group of children when they reached the mean age of 11.5 years. They found that the children in the experimental group maintained the gains and showed significant difference in IQ scores compared to the control groups. As a result, the EIBI utilizing ABA techniques was promoted by various researchers as the best alternative to other approaches (Bristol et al., 1996; Gresham & MacMillan, 1998; Matson et al., 2012). However, there were critiques about the internal and external validity of Lovaas’ and its related studies (Gresham & MacMillan, 1998; Magiati & Howlin, 2001; Matson, 2007), such as bias in subject selection (i.e. non-randomization), use of prorated IQ for pre and post measures, over-reliance of the use of the IQ scores and children’s academic placement as the outcome measures (Reichow & Wolery, 2009; Schopler, Short, & Mesibov, 1989; Wolery & Garfinkle, 2002). Since Lovaas’ study (1987) there were more replicated studies of EIBI models with attempts to improve the methodological

34 § CHAPTER TWO

issues (e.g. Smith, Groen, & Wynn, 2000; Sallows & Graupner, 2005). Subsequent descriptive reviews of EIBI studies have shown mixed results of effectiveness (Eikeseth, 2009; Howlin, Magiati, & Charman, 2009; Rogers & Vismara, 2008; Shea, 2005). In recent years, more precise estimates to determine the average effect sizes of the outcomes of these EIBI studies through meta-analyses were undertaken (Eldevik et al., 2009; Makrygianni & Reed, 2010; Reichow & Wolery, 2009; Spreckley & Boyd, 2009; Virués-Ortega, 2010). Out of these five meta-analytic studies conducted, four of them (except Spreckley & Boyd, 2009) concluded that that EIBI was an effective intervention (Reichow, 2012). These meta-analyses demonstrated moderate to large effect on certain outcome measures such as full scale and non-verbal IQ, and adaptive behavior. Despite the favorable outcomes, these meta-analytic results need to be interpreted with caution because there were some methodological deficiencies among the individual EIBI studies. First, the EIBI studies used for meta-analysis still lacked fidelity measures (Peters-Scheffer, Didden, Korzilius, & Sturmey, 2011). Second, it was observed that the studies which were taken for meta-analyses were overly represented by quasi-experimental studies but were not fully randomized controlled trials. Thus far, there were only two EIBI studies of randomized controlled trials (i.e., Smith, Groen, & Wynn, 2000; Sallows & Graupner, 2005) that met WWC evidence standards (U.S. Department of Education, Institute of Education Sciences, What Works Clearinghouse, 2010). Finally, researchers of meta-analysis studies used different criteria to assess the rigor of EIBI studies that led to less than unified conclusions, from rendering strong support to EIBI program to not recognizing EIBI as more superior than standard care. For example, the inclusion criterion of meta-analysis studies can vary from restrictions to EIBI studies based on Lovaas manuals (Reichow & Wolery, 2009) to broader

LITERATURE REVIEW § 35

definition of EIBI including programs such as pivotal response treatment and intensive family training (Virués-Ortega, 2010). Different definitions led to have meta-analyses ranging from 9 studies, with a total of 41 participants (Spreckley & Boyd, 2009) to 22 studies with a total of 323 participants (Virués-Ortega, 2010), resulting in inconclusive inference on effectiveness (Reichow, 2012). In order to draw a more confident conclusion about the effectiveness of EIBI studies, we need to improve and look beyond the methodological aspects in future studies. It is necessary to have more research studies that investigate the factors contributing to EIBI effectiveness, in addition to acquiring the effect sizes of outcome measures. For instance, the intensity of the intervention, the age and the adaptive behaviors of the children at intake have been identified as factors contributing to greater positive outcomes (Makrygianni and Reed, 2010). It is crucial to realize the potential of EIBI by putting more emphasis on investigating the program components and building blocks of such comprehensive programs in relation to outcome effectiveness. It is important to locate the effective procedure and supplement ASD intervention research with more procedure specific studies so that children can attain crucial communication skills in the critical period of early childhood.

Communication Intervention for Children with ASD Although the percentage of children with ASD having functional speech has increased in the last decade because of early intervention (Goldstein, 2002; Rogers, 2006), promoting functional speech for preverbal children with ASD remains a high priority for parents of these children. It is a valid concern because language is one of the most important variables in predicting better outcomes in later life (Howlin et al., 2004).

36 § CHAPTER TWO

Functional language use by school age correlates with better long term outcomes in ASD (Levy & Perry, 2011; Tager-Flusberg, Paul, & Lord, 2005). In addition, better communication translates to fewer maladaptive and challenging behaviors (Dunlap et al., 2006; Reichle, 1997). There is much progress in understanding the communication deficits of children with ASD, from focusing on research in peculiar speech patterns such as echolalia before 1980s to understanding nonverbal behavioral deficits in communicative interactions (National Research Council, 2001). According to Lord (2000), there was an average of more than 30 papers a year relating to communication and ASD from 1980 to 2000. There are several major intervention approaches for early communication for children with ASD; they are didactic/behavioral, naturalistic, augmentative and alternative communication (such as the use of picture exchange communication system or PECS), and developmental approaches (Goldstein, 2002; Paul, 2008; Paul & Sutherland, 2005; Rogers, 2006; Wetherby & Woods, 2006). Didactic approaches. The didactic/behavioral approach (or ABA approach) to communication intervention was initiated in the 1960s under the prevailing influence of Skinner’s operant model (e.g. Wolf, Risley, & Mees, 1964). Many published studies used didactic models to elicit first words in nonverbal children (e.g. Paul, 2008) or to expand the language repertoire and pragmatic function in verbal children with ASD (e.g. Krantz, Zalenski, Hall, Fenske, & McClannahan, 1981; Ross & Greer, 2003; Williams, Pérez-González, & Vogt, 2003). There were also studies demonstrating that parents can learn and master a didactic or ABA approach in delivering communication intervention at home, resulting in child’s language improvement (e.g. Smith et al., 2000). Many single case research studies demonstrated strong short-term effects in specific

LITERATURE REVIEW § 37

communicative behaviors (Landa, 2007). A few classic group studies delivered behavioral intervention for a longer period and demonstrated significant gains in several communication outcomes such as expressive and receptive language (Eikeseth, Smith, Jahr, & Eldevik, 2002; Lovaas, 1987; T. Smith et al., 2000). In terms of the teaching method, the didactic approach is rule bound with high content specificity which makes acquiring the skills relatively easy for non-professionals and parents (Leaf & McEachin, 1999; Maurice et al., 1996). One of the didactic approaches, verbal behavior therapy, teaches communication using the ABA principles and the behavioral theory by B.F. Skinner. Teaching communication during discrete trial training, the therapist usually works on targeted skills at the table with the child, spending between 10 and 45 minutes per session. There are several verbal operants or domains of verbal behaviors that this therapy focuses on, namely, manding (i.e., requesting items or activities), tacting (i.e., labeling items or activities), motor imitation, echoics (i.e., repetition of sounds or words), intraverbals (i.e., answers to questions), and receptive tasks (i.e., following instructions) (Sautter & LeBlanc, 2006) . Verbal behavior therapy uses prompting, reinforcement and correction procedures to improve the communication of young and older children with autism and other disabilities. Although Skinner’s book of Verbal Behavior in 1957 has received much attention in the field of behavior analysis, Skinner’s framework for controlling language variables has had little impact on the experimental literature for three reasons. First, as Dymond, O’Hora, Whelan, & O’Donovan (2006) noted that only 4% of the articles that cited Skinner are of an applied nature. Most of the literature is theoretical. Second, most of the empirical studies reported were conducted with atypically developing children. In

38 § CHAPTER TWO

order to support a framework, effectiveness must be demonstrated with both typically and atypically developing individuals. Based on an analysis of empirical citations of Skinner’s Verbal Behavior, Dixon, Small and Rosales (2007) observed that there was a lack of empirical research supporting the framework of verbal behavior therapy on typically developing children and adults. Third, there is little objective data available to support the theory. The current evidence only provides initial support for the effectiveness of verbal behavior therapy (Sautter & LeBlanc, 2006). Further research is needed to confirm the effectiveness of therapy and which groups of children with ASD can benefit from this kind of therapy. Despite the efficacy demonstrated in the ABA approach for communication intervention, it has often been criticized for problems with generalization and skill maintenance (McGee, Krantz, Mason, & McClannahan, 1983). This is because operant conditioning treats communication as one kind of behavior instead of a form of social interaction. Communication is less often seen as a back-and-forth interaction but a ‘one way street’. Children trained in this approach tend to have difficulty learning to use communication skills outside of their training contexts and lack communication initiative. The use of tangible reinforcers such as food loses its effect when the child is removed from the experimental condition (Landa, 2007; Rogers, 2006). The emergence of a pragmatic-interactionist model of language acquisition in the 1970s and 1980s shed light on the importance of preverbal exchanges during infancy for later language development (e.g. eye contact, vocalizations, facial expressions and gestures). Young children with ASD lack these early building blocks to elicit beginning speech at their typical developmental milestones. Charman et al. (2005) found that the degree of presentation of nonverbal communication (such as imitations,

LITERATURE REVIEW § 39

requests, social acts) in a 2 year old with ASD was a significant predictor for later communication and social functioning at 7 years of age. Stone and Yoder (2001) also found that the imitation abilities of a 2 year old with ASD predicted their expressive language at 4 years of age. Longitudinal studies further suggested that joint attention is linked to language acquisition of children with ASD (Bristol et al., 1996). Poon, Watson, Baranek, and Poe (2012) confirmed that joint attention, imitation and complex object play behavior play a pivotal role in later development in communication. Therefore, there is a need for any language teaching model to adapt its teaching to natural settings to foster generalization and spontaneity (Rogers, 2006), as well as to develop techniques to enhance paralinguistic communication (e.g. joint attention, gestures and primitive interactive play) in children with ASD. Naturalistic approaches. The naturalistic approach, based on ABA principles, aims to address the shortcomings of the didactic approach, including the lack of generalization and spontaneity, and reinforcement of atypical social patterns (e.g. passive responding to didactic instruction). In addition, it focuses on promoting paralinguistic elements like joint attention and interactive play exchanges and developing language out of a social interactive context (Rogers, 2006). In essence, the naturalistic approach capitalizes on the importance of conducting the intervention in a natural setting where children are moderately directed by adults and are reinforced by intrinsic social rewards (e.g. attainment of the child’s desire of a certain object) rather than an extrinsic tangible reward. Reviews of the naturalistic approach (Lowenthal, 1995; Santos & Kraft, 1997) show that it has been effective in initiating speech in nonverbal children and in increasing spoken language skills for verbal children (e.g. Laski, Charlop, & Schreibman, 1988). Key teaching components like the time delay

40 § CHAPTER TWO

procedure have been effective in increasing the spontaneous speech of children with ASD (Charlop & Trasowech, 1991). One of the earliest studies in naturalistic approaches (Hart & Risley, 1968) used operant conditioning to teach language with a different paradigm (i.e., understanding the prelinguistic condition of children and using the ABA techniques in a typical environment). Subsequently, many studies applied these techniques in natural settings and addressed the prelinguistic skills for the emergence of early language (e.g. Koegel, O’Dell, & Koegel, 1987; McGee, Krantz, Mason, & McClannahan, 1983). L. K. Koegel (2000) observed that teaching approaches which are based on the earlier work of Hart and Risley (1968) made an impact on children with ASD under age 5. Around 85-90% of children with ASD who began the intervention before age 5 eventually used verbal communication as a primary mode of communication. These techniques include following the child’s lead, using natural reinforcers and providing frequent opportunities for the child to express in natural contexts throughout the day. To date, there are several groups of techniques which fall under the naturalistic paradigm including incidental teaching (Hart & Risley, 1975; McGee et al., 1983), pivotal response training (L. K. Koegel, Koegel, Harrower, & Carter, 1999), milieu teaching (Warren & Gazdag, 1990), and natural language paradigm/naturalistic behavioral intervention (Ingersoll & Schreibman, 2006; R. L. Koegel et al., 1987; Laski et al., 1988). In this dissertation, the overarching term ‘naturalistic approach’ will be used unless reporting certain studies where specific terms were used to highlight their treatment components within the naturalistic approach (e.g. naturalistic language intervention).

LITERATURE REVIEW § 41

There is no general consensus in the literature about what constitutes naturalistic language teaching (Hepting & Goldstein, 1996). The teaching components varied somewhat in many studies. For instance, not every study in naturalistic approach adopts time delay techniques (i.e., restraining from giving prompts in order to facilitate verbal production). Nonetheless, most studies shared some common characteristics such as intrinsic reinforcers, natural environment, providing opportunities for child initiation of communication and pragmatic use of social intervention. For example, Dunst, Raab, and Trivette (2012) performed a content analysis of six naturalistic language teaching strategies and observed common characteristics which included “interest-based child learning; use of everyday naturally occurring activities as contexts for child-initiated interactions, adult sensitivity and contingent social responsiveness to child initiations; and joint attention plus turn taking as activities for sustaining adult-child interactive exchanges” (p.8). Comparing the effectiveness of the didactic approach and the naturalistic approach is not a straightforward matter. The literature shows mixed results of the superiority of one approach over the other. In their recent evaluation of the efficacy of communication intervention for ASD, Brunner and Seung (2009) concluded that both applied behavior analysis and the naturalistic behavioral approach provide the best available evidence among the communication interventions. Goldstein (2002) suggested that there is significant overlap between the therapy components of discrete trial training (as in ABA approach) and milieu therapy. The one significant procedural difference between discrete trial training and milieu therapy is about incorporating the instructions into the child’s daily activities to enhance generalization. Therefore, he argued that there

42 § CHAPTER TWO

is not enough evidence to suggest that milieu therapy is more effective than discrete trial procedures because of the commonalities of the two approaches. In contrast, R. L. Koegel, Camarata, Koegel, Ben-Tall, and Smith (1998) compared the procedural difference between analog (discrete-trial) and naturalistic intervention approaches. They found that the naturalistic approach is distinctively different from discrete trials in terms of steps in training, selection of instructional items, types of consequences and response-reinforcer contingencies. Both approaches effectively increased correct production of the target sounds of the children, but functional use of these target sounds only occurred when the naturalistic procedure was used. Delprato (2001) conducted a review of 10 controlled studies comparing discretetrial and normalized behavioral language intervention for young children with ASD. He concluded that normalized language training was more effective than discrete-trial training for language acquisition and generalization in children with ASD. One of his conclusions was that that the didactic approach and the naturalistic approach can be complementary to each other in facilitating language development. Paul, Campbell, Gilbert, and Tsiouri (2013) reached a similar conclusion. They compared two spoken language treatments (i.e., discrete trial and naturalistic language) for minimally verbal preschoolers with ASD. They found that both treatment groups showed comparable results in the number of spoken words produced. However, children with lower receptive language showed better response to the discrete trial (i.e. didactic) treatment while children with better receptive language did better with the naturalistic language treatment. Augmentative and alternative communication (AAC) approaches. There are several forms of unaided and aided AAC systems to improve functional communication

LITERATURE REVIEW § 43

of children with ASD, such as sign language, picture exchange communication system (PECS) and other assistive technology aides (Brunner & Seung, 2009). PECS is discussed in this section as it is considered as an evidence-based intervention by the National Professional Development Center on ASD (2010) and an emerging evidencebased treatment with insufficient evidence of effectiveness by the National Autism Center (2009). The picture communication exchange system (PECS) is an alternative communication system based on the principles of ABA (Bondy & Frost, 1994). It involves six mastery phases for improving communication skills of children with ASD or disabilities. The systematic training procedure aims to help persons who have no or little speech to use picture cards to exchange for items they want, starting from expressing simple requests using single picture cards to developing sentence structures for more sophisticated requests or commenting. One key advantage of PECS is that it does not require the learner to have prerequisite skills such as eye contact, complex motor movements or attending skills. It only requires that the learner have a desire to obtain something for himself (Bondy & Frost, 1994). There are a few systematic and non-systematic reviews that summarized communication outcomes and evaluated the effectiveness of PECS as an intervention (e.g., Flippin, Reszka, & Watson, 2010; Hart & Banda, 2010; Preston & Carter, 2009; Sulzer-Azaroff, Hoffman, Horton, Bondy, & Frost, 2009). Overall, these reviews agree that PECS increased the functional communication of children and adults with ASD or other disabilities. Hart and Banda’s (2010) meta-analysis of 13 single subject studies found that PECS increased functional communication of all participants except one. In addition, it decreased challenging behaviors but was inconclusive if PECS would

44 § CHAPTER TWO

increase use of words in individuals because of the limited amount of speech-related data. In their meta-analysis of three group designs and eight single subject designs, Flippin, Reszka, and Watson (2010) indicated that the PECS produced small to moderate gains in communication and small to negative gains in the use of words specifically. In addition, Preston and Carter (2009) concluded that there were too few RCTs to make a solid conclusion about PECS’s effectiveness. They noted that there was also a lack of procedural fidelity data and maintenance and generalization data reported in these studies. They further noted that most studies conducted with PECS have been conducted in research settings rather than clinical or naturalistic settings. In summary, PECS is a reasonable, efficacious intervention to improve functional communication of children with autism. PECS is primarily used for promoting functional communication, and does not have a primary aim to teach speech or to reduce aggression in children (Frost & Bondy, 2002; Sulzer-Azaroff et al., 2009). Findings are mixed about whether PECS or other modalities of intervention can better promote the emergence of speech development. Yoder and Stone (2006a; 2006b) compared the efficacy of responsive education prelinguistic milieu teaching (RPMT) and PECS using a randomized group experiment in 36 preschoolers with ASD. In their study, PECS demonstrated a rapid effect on increasing spoken communication in comparison to PRMT, however, individual outcomes could be varied by the initial objection exploration level of respective children. On the other hand, PRMT was more superior in facilitating generalized turn-taking and generalized initiating joint attention than PECS. These two paralinguistic skills are found to be closely related to spontaneous communication (Whalen, Schreibman, & Ingersoll, 2006; Charman, 2003).

LITERATURE REVIEW § 45

A more recent effort in comparing the effectiveness of naturalistic behavioral intervention and PECS was made by Schreibman and Stahmer (2014). They failed to replicate Yoder and Stone’s (2006a; 2006 b) findings and found that there was no significant difference in the outcome of spoken speech between the two interventions. These results suggested that the need for further research efforts to match effective treatment to the individual characteristics of children. As Yoder and Stone (2006a) speculated, individual characteristics of a child such as object exploration, social initiation and avoidance might possibly influence the emergence of spoken language. Examining potential moderators such as object exploration, joint attention, and motor/verbal imitation on the effects of PECS intervention on speech and communication outcomes is the next research agenda warranted in this area (Flippin et al., 2010). Developmental approaches. Interventions such as the Hanen approach (Sussman, 2002), DIR/Floortime (Greenspan & Wieder, 2006), and the social communication, emotional regulation, and transactional support model (Prizant, Wetherby, Rubin, & Laurent, 2003) are examples of developmental approaches based on theories of child development. These approaches assume strong positive parent-child interactions because they are integral to child language development. Although its therapeutic presentation may appear similar to the naturalistic approach, the developmental approach differs from the naturalistic approach in some significant ways. First, change agents in developmental approaches do not directly elicit verbal productions from the child. Second, the function of social communication is more appreciated and emphasized than is the form of language productions. Therefore, all communication attempts (including unintentional or unconventional speech) by the

46 § CHAPTER TWO

child are treated as purposeful and are not “corrected.” Third, their use and applications is still in an exploratory and early stage of research evidence (Brunner & Seung, 2009). Carter et al. (2011) conducted a randomized controlled trial to compare Hanen’s ‘More Than Words” in toddlers with autism symptoms to a ‘business as usual’ group. They found that there were no main effects of Hanen treatment on child communication outcomes immediately after the intervention and at the 5 month follow up. Thus, the developmental approach is justified on theoretical grounds but has limited empirical support and evidence at this point of time (Girolametto, Pearce, & Weitzman, 1996; Ingersoll, Dvotcsak, Walen, & Sikora, 2005; Simpson et al., 2005; National Autism Center, 2009). Duffy and Healy (2011) argued that no single intervention has been found to be effective in evoking spontaneity of language for all individuals. They concluded that there are only two consistent findings for best outcomes among language intervention in the literature: early intervention and intensive intervention. Highly skilled therapists may be needed for using naturalistic teaching techniques as the approach is less structured than the didactic approach and requires more moment-by-moment adult decisions, and more therapy training sophistication. However, two studies (Charlop & Trasowech, 1991; Laski et al., 1988) have demonstrated that parents are able to learn naturalistic techniques to teach their child. For instance, Laski et al. (1988) conducted parent training with four parents with nonverbal children with ASD and another four parents with echolalic children with ASD by using natural language paradigm (NLP). They found that all children increased frequency of verbalizations outside of training contexts after their parents’ intervention. McGee, Almeida, Sulzer-Azaroff, and Feldman (1992) taught three typical preschoolers to deliver incidental teaching and to

LITERATURE REVIEW § 47

improve verbal requests and increase reciprocal peer interactions by children with ASD in the classroom. They found that typical children were able to help their peers with ASD with adult supervision and produce positive effects from intervention. These studies demonstrated that ordinary people, even children, were able to deliver the naturalistic techniques successfully. They also illustrated the benefits and strong utility values of applying evidence-based practices to children with ASD in real life situations.

The Role of Context and Culture in Evidence-Based Practices Defining evidence based practice only on the basis of treatment efficacy has been seen as limiting because efficacy studies are conducted in either clinic-based settings or one-to-one teaching sessions rather than in natural settings such as homes, classrooms and communities (Chambless & Hollon, 1998; Hoagwood, Burns, Kiser, Ringeisen, & Schoenwald, 2001; Kazdin, 2008; Satterfield et al., 2009). In addition to being efficacious, interventions that are effective (i.e. clinical useful/having clinical utility) and efficient (i.e. cost effective) are much preferred because knowledge generated from research can reach those who are in need in real life situations (Mischel, 2009). For instance, Moes and Frea (2002) found that considering family context in intervention improved the “goodness of fit” of functional communication training procedures and contributed to the stable reductions in challenging behaviors of children with ASD. Intervention programs which attempt to fit into families’ routines in natural contexts can greatly enhance children’s communication and decrease parental stress (R. L. Koegel, Bimbela, & Schreibman, 1996; Schreibman, Kaneko, & Koegel, 1991). Thus, the best intervention for teaching young children with disabilities should occur in their natural daily environment (Bruder, 2010; Christensen-Sandfort & Whinnery, 2013).

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However, research on delivering evidence based intervention for children with ASD in natural settings are rather limited (Stahmer et al., 2005; Vismara, Young, Stahmer, Griffith, & Rogers, 2009). Satterfield et al. (2009) argued that the best available research must integrate clinical expertise in the context of a patient’s culture, preferences and characteristics. Neta et al. (2015) highlighted that context is one key element in the dissemination and implementation of clinical intervention. Reporting on context is essential to evaluate if there is a potential fit between end users and any particular intervention. In other words, we need to consider the contextual aspects of the intervention concerning how clinical research is generalized and can be applied effectively to individuals in need. But how can this be accomplished? Kazdin (2008) suggested that qualitative research can play a special role in translating research into practice because it investigates the experience of those who undergo treatment and the contexts in which their lives and their families are influenced. For instance, understanding the context of how parents live with and instruct their children with ASD can make existing parentimplemented intervention more sustainable and effective as researchers make sense of how the context affects the intervention, and vice versa. Neta et al. (2015) recommended using mixed methods approaches to report on context by gathering information and perspectives from multiple relevant stakeholders (e.g. practitioners, patients or community members) on the process of program implementation. They can be used to enhance the effectiveness and efficiency of intervention in community settings. Undeniably, early intervention and special school systems are central in changing the lives of children with ASD. The most effective treatment is believed to

LITERATURE REVIEW § 49

include a combination of specialized and supportive educational programming, communication training, social skills support and behavioral intervention (Johnson, Myers, & the Council on Children with Disabilities, 2007; National Research Council, 2001). Therefore, it is desirable to complement the usual early intervention with parent training so to give children with ASD more well-rounded support throughout the day. Current existing parent training programs and related background, knowledge and practices are presented in the next section.

Parent Training Programs for Parents of Children with ASD Parent training has been demonstrated to be both an efficacious and effective ASD intervention (National Research Council, 2001). Involving parents in communication intervention to children with ASD was found to be a promising way to promote generalization and maintenance while reducing stress and increasing quality of life for parents (R. L. Koegel et al., 1996; R. L. Koegel, Symon, & Koegel, 2002). Parent training was also found to be cost effective. It provides avenues for parents to learn behavioral skills in a hands-on manner but the cost could be substantially lower than the EIBI intervention delivered by professionals (Butter, Wynn, & Mulick, 2003).Thus, parent training was considered to be one important element in family practice for children with ASD. It was viewed not only as a supplement to intervention, but as an intervention itself (Brookman-Frazee, Stahmer, Baker-Ericzén, & Tsai, 2006). Reviews of parent training programs for children with ASD. There are a few systematic and non-systematic reviews of parent implemented intervention for children with ASD (Brookman-Frazee et al., 2006; Diggle, McConachie, & Randle, 2002; Lang, Machalicek, Rispoli, & Regester, 2009; McConachie & Diggle, 2007; Meadan,

50 § CHAPTER TWO

Ostrosky, Zaghlawan, & Yu, 2009; Patterson, Smith, & Mirenda, 2012; Schultz et al., 2011). The individual studies in these reviews taught a variety of intervention contents to parents (e.g. communication intervention, early intervention, treating behavior problems, functional communication training), focused on different age groups for children with ASD (e.g. preschool or primary school aged) and used different research designs (e.g. single case or group designs). Most of these reviews unanimously acknowledged the considerate contributions of parent training programs to improving parent and child outcomes. For instance, although McConachie and Diggle (2007)’s systematic review yielded only twelve randomized or quasi-randomized studies for their analysis, they concluded that parent training improved child communicative behavior, increased parent’s knowledge of ASD, parents’ communication style and parent child interaction and reduced maternal depression. They contended that they did not have a sufficiently large number of studies to better determine the effectiveness of parent training. Using randomized controlled trials solely to examine intervention efficacy and effectiveness poses a major challenge in the ASD research field because it is practically difficult to randomly allocate children to treatment and control groups due to the heterogeneous nature of symptom manifestations of ASDs. Therefore, the rest of these reviews mostly included studies with single case designs that adopted behavioral or naturalistic intervention strategies for parent-implemented intervention (Brookman-Frazee et al., 2006; Patterson et al., 2012; Schultz et al., 2011). By observation, these parent training reviews depict similar characteristics and outcomes to the studies of communication intervention for children with ASD that were discussed earlier. In terms of study characteristics, Brookman-Frazee et al. (2006) found

LITERATURE REVIEW § 51

that the parent training programs under their review mostly used single case experimental design (64% of 22 studies), targeted improving child communication skills (68%), were based on operant conditioning principles (73%) and used modeling (68%) as a primary instructional method for parent training. Patterson et al. (2012) observed similar findings – all of the 11 parent training programs reviewed were single case research studies, nine out of the 11 parent training program taught skills pertaining to naturalistic approaches while two of these programs taught skills of traditional ABA approaches. Rakap and Rakap (2014)’s systematic review of parent-implemented naturalistic language interventions yielded fifteen single case experimental studies for young children with disabilities. In terms of outcome measures, Brookman-Frazee et al. (2006) and Patterson et al. (2012) reported increases in both parent skills and child communication outcomes that suggested training programs’ effectiveness in teaching parents to use intervention. In particular, Rakap and Rakap (2014) reported that parent implemented intervention resulted in increased acquisition of targeted language skills for almost all participating children in these studies. However, there were methodological issues or deficiencies that suggested the need for further improvements in parent training research. Specifically, many of these parent training studies under reviews failed to report sufficiently how they trained parents in an effective way. For instance, they lacked data on fidelity of implementation, lacked specificity of training methods/strategies or failed to consider other pivotal factors in parent training. Fidelity of implementation. One of the weaknesses reported in these reviews was the failure to report treatment fidelity data in a consistent manner across parent training studies (Brookman-Frazee et al., 2006; Lang et al., 2009; Meadan et al., 2009;

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Patterson et al., 2012; Schultz et al., 2011). Not all parent training studies collected fidelity data as their primary outcomes (Meadan et al., 2009; Patterson et al., 2012; Rakap & Rakap, 2014; Schultz et al., 2011). For those studies that collected fidelity data, either they demonstrated a wide range of fidelity rate (20%-100%) (Patterson et al., 2012) or they failed to report fidelity of both components, i.e., the parent education and the parent-as therapist components (Meadan et al., 2009). Wainer and Ingersoll (2013b) stressed the necessity of reporting fidelity of intervention implementation and suggested a conceptual framework to elucidate the fidelity dimensions for the parent training and intervention implementation process. Two aspects of fidelity of implementation are warranted: the fidelity of parent training procedures (i.e., trainers’ fidelity adherence across parents) and the fidelity of intervention by parents-as- therapists. Including and expanding the data on fidelity of implementation is an important area for improvement for upcoming parent training studies because it directly links to child outcomes. Without measuring fidelity, there is no way to explain and secure internal validity for both parent and child outcomes in parent training experiments. Training methods/strategies of parent training programs. Many parent training programs utilized efficacious intervention contents/approaches which gave good empirical results but lacked demonstrations of how the active teaching strategies or components make parent training ‘work.’ In other words, the mechanism of parent training effect to child outcomes is not clear (McConachie & Diggle, 2007). Rakap and Rakap (2014) found that the fifteen parent training studies that were reviewed used a variety and a combination of training and follow up methods to teach parents to use naturalistic language interventions. These included the use of verbal or graphical

LITERATURE REVIEW § 53

performance feedback (73%), handouts or a manual of intervention strategies (60%), didactic (verbal) presentation (46%), video examples (40%), modeling (40%), role play (33%), demonstration with another child (13%), and discussion including problem solving (20%). The rationale for using these training methods was not well explicated. These training methods seemed to be arbitrary based on what were deemed to be best. Lang et al. (2009) identified some commonly used parent training procedures such as verbal instruction and/or instruction manual, in vivo practice, role playing, modeling by trainer, and reviewing videos of intervention being implemented, however there was no studies evaluating the effectiveness of these individual training components or the series of procedures in relation to treatment outcomes. Schultz et al. (2011), after reviewing parent education programs for parents of children with ASD, suggested conducting component analyses for future studies to help clarify the essential training factors that are needed for enhancing better parent and child outcomes. There are some sparse efforts in understanding how parents can be trained in an effective way. Hudson (1982) may have been among the first to investigate training strategies for parent training. He divided parents into four groups of 10 parents each. One group received verbal instructions; another received verbal instructions and teachings in behavioral principles; the third received verbal instructions with modeling and role playing; and the fourth was a waitlist control group. He observed that the group that received training with verbal instructions, modeling and role playing displayed the most effective intervention. He concluded that training methods should include components which directly shape parental behavior for effective training and intervention.

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In their meta-analytic review of components associated with the effectiveness of parent training programs for typical preschoolers, Kaminski, Valle, Filene, and Boyle (2008) found that those parent training programs that required parents to practice new skills with their child during sessions reported significant larger effect sizes than those programs that did not, regardless of program delivery methods or content. Other less active components of parental involvement in training such as receiving modeling examples and homework were not predictive of program outcomes in their regression analyses. In other naturalistic intervention studies, the factors that lead to success in parent training included allowing parents to select their goals or targets for intervention (Brookman-Frazee & Koegel, 2004), instructing parents on intervention strategies in a systematic manner (Mahoney et al., 1999), and including feedback and coaching (Kaiser, Hemmeter, Ostrosky, Alpert, & Hancock, 1995). However, these studies lacked a systematic, theoretical training framework suitable for adult training. Recently, Bearss, Burrell, Stewart, and Scahill (2015) questioned the variety of components that constitute “parent training” in ASD intervention. These can range from simple psychoeducation of parents to intensive parent training with a coaching component. Clarifying the use of terms (e.g. parent training, parent education) in relation to different training components and procedures can help researchers compare and contrast the levels of efficacy and effectiveness among different programs. Little research has been conducted to investigate how and what training components can lead to parent’s acquisition and adherence of intervention skills. This is a major knowledge gap in many parent training programs for children with disabilities. Thus, it is important to delineate the content, training components and procedures of parent training program in order to understand the key factors for the program effectiveness.

LITERATURE REVIEW § 55

Other pivotal factors in parent training. In addition to the importance of acquiring the fidelity data and evaluating the training methods in parent training research, there are other pivotal areas of concerns that can critically enhance the effectiveness and quality of parent training studies. For example, whether parent training programs adopt culturally and contextually relevant practices to optimize their outcomes, whether their goals, procedures and outcomes of parent training are socially and clinically important, or whether studies have generalization and maintenance measures to ensure outcomes that can be sustained beyond settings and time. There has been a strong call to integrate culturally and contextually relevant practices in applied psychological intervention, from conceptualization, study design and implementation, to dissemination (Dumas, Rollock, Prinz, Hops, & Blechman, 1999). Law, Plunkett, Taylor, and Gunning (2009), for example, concluded in their reviews that parent training programs can potentially benefit many parents; however, the success of these programs depends on how they are tailored to meet the social or cultural context of the families targeted. The perceived needs of the parents must also be taken into consideration. Parents may have difficulty following through with the number of sessions required for effectiveness. For instance, there are practical concerns such as child care that restrict parents’ access and attendance in parent training. Lang et al. (2009) observed that the mean length of parent training was 17 hours. They speculated that many families may not be able to afford this amount of time due to competing work and home responsibilities. Therefore, there is a need to understand the feasibility of program implementation in parent training. For example, McLaughlin, Denney, Snyder, and Welsh (2012) analyzed how variables related to contextual fit were reflected in behavioral support intervention. Some key components of contextual fit are (a)

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acknowledgment cultural and linguistic background of families; (b) consideration of family ecology, selection of family activity settings as contexts for intervention and (c) acquiring parent’s perspectives about acceptability and feasibility of the intervention. It is important to incorporate social validity measures in parent training programs to know if the goals, procedures and outcomes are socially and clinically important (Meadan et al., 2009). Considering the end-users’ preferences in their circumstances constitutes an essential aspect of developing any effective evidencebased practice (Satterfield et al., 2009). Matthews and Hudson (2001) stressed the importance of assessing social validity and treatment acceptability to understand client’s preferences on the objectives/goals/outcomes of the treatment program and the parent training methods. They suggested guidelines for evaluating parent training programs within the framework of the Context, Input, Process, Product (CIPP) model. Besides having socially appropriate and culturally acceptable objectives for parent training programs, the process of parent training programs should be evaluated regarding parent’s participation and satisfaction through data collection. In addition, the appropriateness and acceptability of the contents and methods of parent training programs need to be evaluated. Reporting data on generalization and maintenance is important and fulfills the intended long term aims for parent training. That is to ensure maintenance and generalization of both parent’s and child’s learned skills across time and home or community settings. Rakap and Rakap (2014) observed that only a few studies reported generalization and maintenance data for parent implementation of naturalistic language intervention and child language outcomes. The inconsistent reporting of maintenance and generalization data is a major weakness in parent training research.

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In summary, increasing accessibility of parent training will greatly benefit families in term of cost savings and waiting time for intervention. From the perspectives of practitioners and policy makers, parent training is viewed as an effective and efficient way to disseminate evidence based practices, enhancing family’s quality of life in the midst of the manpower shortage of therapists in our near future. In order to increase the effectiveness of parent training programs, future studies need to improve on consistent reporting of fidelity of implementation and investigate which active teaching strategies/ components make parent training ‘work.’ Finally, the social and cultural contexts of the targeted families need to be considered in the design, evaluation and implementation of parent training programs. Parent training programs are about training parents, who are adults, to apply intervention strategies and instruct their child with ASD learn. Malcolm Knowles (1980) coined the term andragogy to describe how adults learn, which differs from the way children learn (pedagogy). The adult learning and training literature are relevant when we consider the andragogy of parent training programs. It will be discussed in next section.

Adult Training and Behavior Modeling Training (BMT) The adult training literature has rather short history of four decades but has greatly advanced in terms of training theory and practice (Salas & Cannon-Bowers, 2001). Most of the training literature relates to managerial training, military training or computer training (Salas et al., 2012). Aguinis and Kraiger (2009) define training as “a systematic approach to learning and development to improve individual, team, and organizational effectiveness” (p. 452). Training, by nature, is different from education

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and learning because it concerns practical outcomes where there are permanent changes in cognition, behavior and affect (Kraiger, Ford, & Salas, 1993). Theoretical frameworks and constructs have been proposed for understanding the nature of training. For instance, Cannon-Bowers, Salas, Tannenbaum, and Mathieu (1995) proposed frameworks with possible variables that influence the delivery of training, while other theories focused on the underlying construct that affects the transfer of training (e.g. Ford, Kozlowski, Kraiger, Salas, & Teachout, 2014). In terms of training strategy, behavior modeling training (BMT) dominates the training literature. It is one of the best researched and widely used psychological-based training interventions and is based on Bandura’s (1976) social learning theory. One of the largest training firms used BMT to teach supervisory skills to over 6 million managers in over 8,000 organizations (Wexley & Latham, 2002 as cited in Taylor, Russ-Eft, & Chan, 2005). There were more than 119 BMT related published and unpublished studies on adult training before 2005 (Taylor et al., 2005). BMT has been popularly used to train psychomotor and interpersonal skills (e.g. Decker, 1980; Roessger, 2012). The key characteristic of BMT is the component of behavioral role modeling. Behavior modeling training (BMT) is based on the theoretical work of Bandura (1976). Bandura (1976) proposed that modeling occurs with four sub-processes: (1) attention, (2) retention, (3) production, and (4) motivation. In essence, learners need to observe the modeled behavior, remember what the model did, do what the model has done and desire to use what they have learned. These four sub-processes are evident in the five components in BMT, i.e., (1) modeling, (2) retention process, (3) behavioral rehearsal, (4) feedback, (5) transfer of training (Decker & Nathan, 1985).

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Modeling is viewed as superior to verbal instruction because it represents cognitive representations in a visual way. The learner must show a certain interest in the modeled behaviors by attending to it and its characteristics. The learner must also retain the sequence of behaviors in an abstract form in memory, visually or verbally through symbolic coding, cognitive organization and symbolic rehearsal. During behavioral rehearsal, the learner performs the skills and compares it against the representations he has acquired during retention. Finally, constructive feedback is provided by trainers and other participants to fine-tune behaviors. Feedback also serves as social reinforcement. These elements facilitate and enhance the likelihood that the learner will transfer and apply the learned behavior in his real-life situations. For modeling to happen, Bandura (1976) stresses the importance of motivation – the learner needs to have self-efficacy and self-incentives to perform the behavior. Therefore, the theory diverges from behavioral modification significantly as learners are not passive but take an active role in absorbing behavioral components which are relevant to them and motivating themselves to reproduce the modeled behavior (Bandura, 1976, 1986; Decker & Nathan, 1985). Numerous studies highlighted the effectiveness of BMT in skill acquisition and transfer and the contexts or factors that contributed to successful skill transfer. Taylor et al.’s (2005) meta-analytic review of 117 studies on behavior modeling training (BMT) revealed that BMT helps trainees acquire the largest gains in procedural knowledge and modest changes in job behavior. Skill transfer was greatest when both negative and positive models were presented, when trainees were asked to set their own goals, and when rewards and sanctions were installed in their work environments. Davis and Yi (2004) found that declarative knowledge and task performance were improved by

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incorporating symbolic mental rehearsal (SMR) in the BMT framework to computer skills training. After being exposed to modeling, trainees were asked to mentally picture themselves performing the learned computer skills step by step. In their meta-analytic review of training transfer, Blume, Ford, Baldwin, and Huang (2010) found that cognitive ability, conscientiousness, motivation and a supportive work environment correlated positively with transfer of training. Burke and Hutchins (2007) conducted an integrative literature review on training transfer and found that content relevance emerged as a primary factor in skill transfer. Adequate practice and feedback (or even overlearning) were key instructional strategies linked to transfer. Cognitive or mental rehearsal and behavioral practice strategies during training were positively correlated with transfer. Fukkink, Trienekens, and Kramer’s (2011) meta-analysis on video feedback studies showed that video feedback method is effective for improving individuals’ key interaction skills. Some may argue that other learning theories could have contributed to understanding how adult training works. For instance, Kolb’s (2015) experiential learning theory is considered an attractive alternative to Bandura’s (1986) social learning theory. However, it has been suggested that Bandura (1986) social learning theory overlaps considerably with Kolb (2015) experiential learning theory (Roessger, 2012). Experiential learning theory describes the learning process as the transformation of experience. The learning cycle is completed with the key learning components of concrete experience, reflective observation, abstract conceptualization and active experimentation. Active experimentation contributes to the learner’s concrete experience, making it a dynamic cycle of learning. Thus, it is seen that Kolb’s and

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Bandura’s learning theories encompass some essential elements of cognitive processes and external behavioral experimentation in adult learning and training. To conclude, the two learning theories converge in seeing that crucial cognitive processing elements as well as experimentation with appropriate feedback are crucial elements for effective adult learning/training. Elements like behavioral experimentation, feedback, modeling in adult learning are not new in parent training. These elements have been constantly reported in parent training studies in ASD (e.g. Rakap and Rakap, 2014). However, ASD research sees an absence of systematic adult training framework for parent training programs. Taylor et al. (2005) concluded that behavioral modeling training (BMT), with its extensive research evaluations has been demonstrated to be an effective training intervention, producing sustainable improvements across a variety of skills and post training behaviors. It can be a potential good fit for parent training and as an instructional design for mobile technology.

Digital Media and Mobile Technology Digital media and mobile technology can provide numerous exciting possibilities for increasing access and enhancing effectiveness of parent-led interventions with children with ASD. Recent advances in digital technology have enabled many new avenues for learning, teaching and training. In education, e-learning delivers educational programs via the internet, broadcast, audio or video tapes, TV or CD-ROM (Chuang, 2009) while mobile learning, also known as, m-learning utilizes portable devices that can be taken anywhere to create learning as an “anywhere and anytime” experience (Motivalla, 2007).

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In the field of healthcare, technologies such as videotapes, interactive CDs and the internet have helped to disseminate knowledge and information and alleviated demands on professional and administrative resources (Herschell, McNeil, & McNeil, 2004). The generation of web-based tools including wikis, blogs, and podcasts enabled improvements in collaborative clinical practice and education (Boulos, Maramba, & Wheeler, 2006). Today, healthcare practices are increasingly supported by the internet and mobile devices such as smartphones, tablets or wearable sensors. In medicine, many terms are also used to denote long distance learning or the provision of clinical services with the use of technology: telepractice (Baharav & Reiser, 2010), telehealth (Soares & Langkamp, 2012), telerehabilitation (Cason, 2011), mHealth (i.e., mobile health) (Luxton et al., 2011) and eHealth (i.e., electronic/digital process in health) (Pellegrini et al., 2014). Generally, telepractice is defined as the provision of clinical and therapeutic services at a distance using telecommunication technologies (Cason, 2011). Although telepractice is a relatively new concept, there is a substantial body of research that supports the feasibility of telehealth or telemedicine in the field of pediatrics (Cason, 2011). Researchers found that there was a high level of satisfaction among participants in using telemedicine, with the advantages of significant monetary savings and improved access to services (Cason, 2009; Harper, 2006; Karp et al., 2000; Luxton et al., 2011; Robinson, Seale, Tiernan, & Berg, 2003). Soares and Langkamp (2012) recognized the crucial shortage of developmental and behavioral pediatric specialists in the United States and suggested the benefits of telehealth, i.e. the use of videoconferencing to deliver pediatric services to underprivileged children and parents. Kelso, Fiechtl, Olsen, and Rule (2009) tested the feasibility of using videoconferencing over the internet to deliver early intervention services to four families in the U.S. rural

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areas. They found that parents and professionals were satisfied with delivering the services in child’s natural environments. In the area of parent-implemented ASD intervention using technologies, there are only a few published studies which examined the efficacy of using telehealth to deliver parent training programs for parents of children with ASD (Baharav & Reiser, 2010; Heitzman-Powell, Buzhardt, Rusinko, & Miller, 2014; Jang et al., 2012; Lowdermilk, Martinez, Pecina, Beccera, & Lowdermilk, 2012; Meadan & Daczewitz, 2015; Nefdt, Koegel, Singer, & Gerber, 2010; Vismara et al., 2012; Wainer & Ingersoll, 2014). These studies showed initial promises in supporting parent-child daily interactions at home and generalizing gains for child development. These studies used single case experimental designs, randomized controlled trials or exploratory formative evaluation to evaluate the effectiveness of the programs. For example, Baharav and Reiser (2010) used telepractice to coach two parents of children with ASD to implement strategies for improving child’s preverbal communications. Using a single subject timeseries repeated measures design, it was found that the two parents maintained and increased in social engagement skills with their child after the long distance coaching, compared to traditional face-to-face coaching. Parents were satisfied with the use of technology and had perceived gains that were similar to face-to-face consultations. Nefdt et al. (2010) devised a self-directed learning model using an interactive DVD to train parents to implement pivotal response treatment. Their randomized clinical trial showed pre and post-test significant differences in parents’ fidelity of implementation (16%-75%), parent-provided language opportunities and the child’s functional verbal utterances. It affirmed parents’ ability to learn naturalistic behavioral intervention strategies with the use of technology. Vismara et al. (2012) used videoconferencing and

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DVDs to examine the efficacy of delivering a parent intervention curriculum via telehealth with nine parent-child dyads. Parents’ fidelity of strategy implementation gradually improved during the training and social communicative behaviors of children with ASD increased significantly after the parent training. There are also studies that targeted training with both therapists and parents of children with ASD. Vismara et al. (2009) compared distance learning and live instruction to train therapists to implement intervention and parent training. Both methods were equally effective in teaching therapists to train parents, resulting in increased therapeutic skills in parents and behavioral gains in the child after coaching. They concluded that the use of distance learning technologies was successful in disseminating evidence-based practice abroad but emphasized that further research is needed to explore methods of measuring treatment fidelity optimally. Similarly, Wainer and Ingersoll (2013a) examined whether an internet-based self-directed program which facilitated therapists’ or parents’ implementation of naturalistic behavioral strategies would increase ASD children’s imitation skills. In their pilot study of single subject design, they reported positive changes in both therapists’ and parents’ intervention knowledge and strategies, as well as an increase in children’s imitating skills. These findings suggest that internet-based intervention programs can be an effective means to deliver evidence-based practice to both parents and therapists. Despite the promising results of these studies using technology to train parents of children with ASD, the conclusions drawn from these studies are limited. The small number of studies and the variety of technologies (e.g. internet, DVDs, online coaching) used made it difficult to draw a conclusion of its overall effectiveness. Meadan and Daczewitz (2015) reviewed internet-based training programs for parents of children

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with disabilities and found that there was a lack of fidelity reporting on parents’ intervention implementation among these programs. Only two out of six studies measured changes in parents’ behavior in addition to their knowledge. Sharing similar weaknesses with other parent training programs, these internet training programs for parents could not assure their effectiveness with the lack of fidelity data. Beyond the need for further studies to examine the effectiveness internet/mobile app parent training in this area, it is also crucial to understand the challenges of using technology in intervention dissemination and in intervention quality control and maintenance. The technological advancement and the boom in medical/health app in recent years are both exciting and problematic. Conservatively, there are tens of thousands of health care apps on the market but the speed of development outpaces the evaluation of their quality. There is little guidance for professionals and consumers on how to separate the ‘wheat’ from the ‘chaff’ (Kuehn, 2015). Autism Speaks (2015) lists more than 560 mobile applications for individuals with ASD or their families on its website, ranging from the use for recreation to organizers. Few of them are supported by scientific or empirical studies for the treatments embedded in the app. Researchers may overemphasize the potentials that the mobile app/ technology can bring in relation to treatment outcomes. But caution needs to be taken as the treatments in these mobile apps may not be evidence-based. Even if a particular app may contain an evidencebased practice, it was not sure that if the applied treatment from the app can perform properly in the context of the unique clinical environment of human-computer interaction. In other words, many medical/health apps do not have clinical trials to support the use of evidence-based treatment in the type of app/technology itself. There is no evidence to indicate that the use of these health apps/ behavioral intervention apps

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can lead to harm, but using apps or devices that are untested may arouse unnecessary anxiety for end-users because of using unproven techniques or strategies related to their health or bodies (Husain & Spence, 2015). Jones et al. (2014) urged caution in examining the promises of mobile applications for psychological wellbeing or health purposes because the promises of these preliminary results largely rely on future studies that examine their long term feasibility and sustainability in real life settings. She and her colleagues identified a disconnection between the conceptual model underlying the core elements of an evidence-based treatment program and the application designed for mobile phones utilizing the treatment program. For instance, the technique ‘time-out’ is commonly used in behavioral parent training for treatment of early childhood disruptive behaviors in children. However, the proper use of ‘time out’ can be grossly misunderstood by developers of applications. Jones et al. (2014) observed that tracking the elapsed time in time-out was designed as a feature in a mobile app. However, the most important skill for parents to learn in behavioral parent training is their effective use of the timeout skills, instead of tracking the time for time out. Therefore, this case study example demonstrated that technology per se does not lead to learning. It is important to examine whether the instructional design embedded into the technology can enable effective learning and transfer of training (Salas et al., 2012). Thus, studies that examine the efficacy and effectiveness of mobile app interventions should also evaluate the instructional design of the application. Beyond the proper implementation of evidencebased practice in mobile technology, Luxton et al. (2011) indicated several issues that are important in the design and development of these technologies for behavioral health

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care such as ethical and policy related issues (e.g. malpractice), data security and privacy issues, quality standards and safety, and usability and acceptance issues. We are in an exciting time. Telehealth can be a promising platform to fill the research-practice gap by efficient delivery of intervention for children with ASD. However, the investigation of the use of telehealth to deliver evidence-based practices for children with ASD and their families is still in its infancy and outside our current knowledge boundary (Meadan & Daczewitz, 2015; Vismara et al., 2009). So far, there are research studies which gave preliminary results on parent-led intervention programs with the use of technologies, but to date there are not any published studies of parent training programs using mobile apps for ASD intervention. It is important to explore whether telehealth can increase the availability of evidence-based intervention without compromising the quality of service (Stirman, Crits-Christoph, & DeRubeis, 2004). Scalability, feasibility in real life contexts and sustainability over times are pertinent issues that are worth investigating when expansion is considered for the wider use of a clinical population.

Chapter 2 Summary Improving the communication of young children with ASD is a a high priority because language predicts long term outcomes. Randomized controlled clinical trials and single case studies support the use of naturalistic approaches to improve communication of children with ASD. However, for real benefits for children with ASD and parents, an intervention must be able to be implemented effectively in real world settings, instead of just being efficious in a clinical setting. Thus, qualitative studies are needed across cultures and contexts to understand the unique contextual aspects of

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enabling and limiting factors in ASD intervention from parental perspectives. Parent training has been well established as an effective intervention but there are still gaps in knowing what processes, factors or components contribute to effective skill attainment, maintenance and generalization. Parent training is an adult training process, yet, parent training in the ASD context seldom utilized the resources available in the adult training literature. Behavior modeling training (BMT) is one effective adult training modality for skill attainment and maintenance that has been well researched and validated. Its key training components as modeling and feedback have been individual used in many parent trianing programs. Further, mobile technology is a promising platform that might be leveraged to improve accessibility to evidence based treatments efficiently. Thus, aim of this research is to design, develop and test a mobile application that trains the user to deliver naturalistic intervention for functional communication to young children with ASD. In the following chapter, details of the research questions, design and methodology are provided.

CHAPTER THREE RESEARCH DESIGN & METHODOLOGY

This chapter elucidates the research design and methodology. First, it reiterates the purpose of the study, and specifies the research questions and hypotheses that are inferred from the accounts in the literature review. Second, it presents the rationale for using a mixed methods approach as the overarching research design. Finally, the chapter ends with the details of the research plan and a summary.

Purpose and Objectives of the Study The primary purpose of the study is to examine the effectiveness of a newly developed mobile application which trains parents to implement strategies so that their young child with ASD will improve their functional communication, especially in requesting objects or play in their daily contexts. The sequential mixed methods design involves two phases. As the study involves developing a new mobile app to be used for parent training purpose, there is a need to understand the local intervention context in Singapore from the perspectives of parents of children with ASD in order to inform the design of the mobile app. Thus, in the first phase, the study seeks to explore the parent perceptions of intervention experiences in local Singapore, to identify strengths and barriers in the local intervention process and help develop the mobile app intervention with the consideration of enhancing identified strengths or overcoming identified difficulties. Following examination of parents’ experience in the local context and the relevant literature, we seek in the second phase to develop a cost-effective and less labor

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intensive parent training tool (i.e. mobile app) and to measure its effectiveness to train parents to do intervention with their children with ASD. The mobile app tool serves to be a prototype to circumvent issues in intervention implementation. The second phase also verifies the clinical significance of intervention effects on both parent’s and child’s behaviors by exploring user acceptability and satisfaction of using such parent training mobile application. It is also an initial study exploring the use of a new instructional design (Behavior Modeling Training, BMT) embedded in a mobile app parent training tool.

Research Questions & Hypotheses Research questions. The sequential mixed methods study involves two phases. Study 1 explores the local contextual elements of ASD intervention from a parental perspective. The results of Study 1 contribute to the design and the development of the mobile application. The intention of Study 2 is to develop and evaluate the effectiveness of the mobile app parent training program. Here are the research questions (RQ) for Study 1 and Study 2 respectively. Study 1. How do parents perceive their intervention experience for their children with ASD in the context of Singapore? Study 2. Parent’s declarative knowledge (RQ Group 1) 1. Do parents attain an appropriately high level of intervention knowledge during and after participation in the mobile app parent training program?

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Parents’ intervention skills (RQ Group 2) 1. Do parents attain an appropriately high level of intervention skills after participation in the mobile app parent training program? 2. To what extent can parents generalize the intervention strategies learned from the mobile app and apply the strategies to teach their child with ASD in other home/community settings? Child’s functional communication (RQ Group 3) 1. To what extent do children with ASD improve in their functional communication after their parents have participated the mobile app parent training program? 2. How much do children with ASD improve their communication skills in other home/ community settings as their parents generalize and apply strategies learned from the mobile app parent training program? Instructional design and social validity (RQ Group 4) 1. How does Behavior Modeling Training (BMT) as an instructional design help parents gain and apply intervention skills? 2. What is the acceptability and perceived effectiveness (social validity) of the mobile app as a parent training tool as rated and reported by the parents? Research hypotheses. The research question in Study 1 is an exploratory question which does not lead to a hypothesis. The following hypotheses are based on the research questions in Study 2. Parent’s declarative knowledge (RQ Group 1) 1. Parents’ knowledge in naturalistic language intervention will increase substantially during and after the completion of the mobile app parent training program.

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Parents’ intervention skills (RQ Group 2) 1. Parents will demonstrate at least 80% fidelity to the implementation of the intervention at the completion of the mobile app parent training program. 2. Parents will maintain and generalize skills learned in the mobile app parent training program and effectively teach their child in other home/community settings during the maintenance and novel settings. Child’s functional communication (RQ Group 3) 1. Children with ASD will improve in their functional communication after their parents have participated in the mobile app parent training program. 2. Children will improve in or maintain their functional communication in other home/ community settings when their parents generalize and apply intervention strategies learned from the mobile app parent training program. Instructional design and social validity (RQ Group 4) 1. Parents will report high levels of acceptance and perceived effectiveness of the mobile application as a parent training tool. The proposed research questions suggested the use of both qualitative and quantitative methods in order to answer them effectively. The use of both methods led to the adoption of a sequential mixed methods approach in the current research. The next section provides an introduction, methodological assumptions and practical considerations of the mixed methods approach. The methodology for each individual study is justified in the subsequent sections.

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Rationale for a Mixed Methods Approach The use of mixed methods approach in psychology and education is relatively new. Quantitative methods have been the dominant approach for the past 70 years in psychology and education. They are predominately used in experimental studies to measure how observable behaviors can be manipulated and altered during and after the intervention (Alise & Teddlie, 2010; Castro, Kellison, Boyd, & Kopak, 2010). Empiricism and positivism are the building blocks of philosophical assumptions for evidence-based practices based on quantitative methods where scientific validation must be inferred from empirical evidence. While quantitative methods are relevant for measuring behaviors and changes, they may neglect social and cultural factors that contribute to behavior change (Denzin & Lincoln, 2011). Qualitative research relies on interpretive methods in natural settings to understand the world through different materials. It offers a perspective that is value-laden and subjective in understanding social phenomenon (Bogdan & Biklen, 1998; Sandelowski, 2004). Controversy of mixed methods design. Mixed methods research has become popular in social and behavioral research recently. Several pioneers (Creswell & Tashakkori, 2007; Greene, 2008; Johnson & Onwuegbuzie, 2004; Morgan, 2007) proposed that mixed methods research has emerged as a third research paradigm, distinctive and independent from the quantitative or the qualitative approach. However, legitimizing mixed methods research has been controversial because it is difficult to resolve the philosophical assumptions underpinning it. One fundamental characteristic of mixed methods approaches is its methodological eclecticism (Teddlie & Tashakkori, 2010) which advocates the selection of best techniques to answer research questions. There is often no unified school of thought or philosophical

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assumptions (Bergman, 2008). Pragmatism has attracted the most attention as an underlying philosophical framework for mixed methods approaches (Creswell, 2003; Creswell & Plano Clark, 2007; Morgan, 2007; Teddlie & Tashakkori, 2010). Pragmatism does not offer a position on ontology or epistemology. Because it does not offer a fixed view on the nature of reality, truth is only ‘what works’ at a particular point in time. However, the pluralistic views of truth and reality and a dialectic philosophical stance at different research stages are not helpful in the philosophy of doing research. The assumptions in pragmatism underestimate the importance and the influence of philosophical assumptions in research methods (Maxwell, 2012). Beyond pragmatism, there are a diversity of paradigmatic views for doing the mixed methods research. The current study assumes the position of critical realism for the mixed methods design with an integration of realist ontology and a constructive epistemology (Maxwell & Mittapalli, 2010). Methodological assumptions. Critical realism is found to be a productive philosophical stance to facilitate the collaboration of quantitative and qualitative methods for the current study. Critical realism gained widespread acceptance in the philosophy of science (Maxwell, 2013). It acknowledges that there is a real world out there that exists independently of our perception and constructions (realist ontology), but our understanding of the world is made up of our perspectives and viewpoints which are inevitably developed from our constructions (constructivist/ relativist epistemology). The belief of critical realism is that there is a reality out there regardless of our existence but there are multiple perspectives of viewing the truth. Because of our knowledge of the truth (i.e., epistemology) and our own limitations, our perspectives may be inadequate and are frequently relative. Therefore, acquiring data from multiple sources

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can help us to see a better picture of a social phenomenon, as our limited knowledge is prone to errors. This paradigm is grounded with the strong assumption that all knowledge is “partial, incomplete and fallible” (Maxwell & Mittaphlli, 2010, p. 150). In our current study, critical realism helps to explain how the mixed methods approach overcomes limitations of quantitative methodology like the neglect of diversity. The current study acknowledges that diversity is a real phenomenon because the symptomatic manifestations of autism spectrum disorders are essentially heterogeneous and different people or sociocultural groups may respond differently to the same treatment. As such, the assumptions of critical realism are useful to the current mixed methods approach in which we attend to multiple single cases and address the unique circumstances of families experiencing ASD intervention in Singapore. Critical realism promotes the validation of different perspectives on reality and the assessment of local causality in qualitative research (Greene, 2008; Mark, Henry, & Julnes, 1999; Maxwell & Mittapalli, 2010). In this sense, it helps research studies stay closer to the reality of the world rather than exploring universal regularities or laws that claim to be applicable to all situations. Practical Considerations. There are more research agencies that recognize mixed methods design as a legitimate approach, such as the American Educational Research Association (AERA), Cochrane Campbell, What Works Clearinghouse Collaborations, National Institutes of Health and the National Institutes of Education in the U.S. and in the UK (Creswell & Garrett, 2008; Denzin, 2010). Evidence-based practices (as in efficacy studies) seem to devalue personal knowledge and idiographic knowledge and over-emphasize scientific objectivity which applies to ‘average’ people. A way to compensate for this weakness is to recognize and include patients’ preference

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and values in the evidence-based practice research loop (Sandelowski, 2004). Fixsen, Naoom, Blase, Friedman, and Wallace (2005) advocated that only effective intervention practices with effective implementation practices can produce good outcomes for endusers. Implementation research increasingly adopts mixed methods designs where both qualitative and quantitative designs are utilized to give a better understanding of implementation issues (Fixsen et al., 2005). Palinkas et al. (2011) found that mixed methods designs were used in different phases of implementation research such as exploration, adoption, or sustainability stage. For instance, qualitative methods are used to examine the context of the implementation of a specific intervention and the results generated are used to contribute to the design and development of intervention implementation. The current research is essentially a study of intervention implementation and is at the initial exploration stage of implementation. Its aim is to first understand the contexts, the participants and the environment of local ASD intervention so that the proposed intervention in the second stage of the study would ‘work’ for parents and children with ASD as it is situated itself in a real life situation (i.e., home of families with children with ASD). The results in the first study can foster a greater degree of intervention customization to the local context for the second study. It was hoped that a culturally acceptable and contextually feasible kind of ASD intervention which is suitable to current Singapore context would be developed (Song, Happ, & Sandelowski, 2010). It was also the researcher’s intention that the clinical trials in this study were attempts to move toward to the “participant-centered” intervention study (Adamson et al., 2008; Gross & Fogg, 2001; Lauver et al., 2002; Song et al., 2010). The methodology for each study is explicated below.

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Study one methodology: Qualitative study with applied thematic analysis. Applied thematic analysis (Guest, MacQueen, & Namey, 2012) is chosen to be the qualitative method and analysis for Study 1. The purpose of the current qualitative study is to understand the local intervention context and parents’ experience in their intervention journey. Thus, the analytic purpose for Study one has a descriptive and exploratory orientation. Applied thematic analysis is a common qualitative analysis method in applied health research (Green & Thorogood, 2009). The method of thematic analysis focuses on identifying and describing both implicit and explicit ideas within the data with themes. It employs various data reduction techniques which are borrowed from phenomenology and grounded theory for data analysis. It ensures credibility of findings to an external audience by having a team of researchers. Qualitative interview is the most common data gathering tool in qualitative research. Semi-structured interviews are found to be most appropriate for collecting data in this endeavor because in-depth discussions can give rich data for quality analysis (Corbin & Strauss, 2008). Study two methodology: Multiple baseline single case experimental design. A multiple baseline single case design across a few parent-child dyads with multiple settings was selected as the key research design for Study 2 (Kazdin, 2011). The purpose of Study 2 is to evaluate the effectiveness of using a newly developed mobile app in training parents to use intervention strategies for their child with ASD. The use of a single case design has a few advantages over quasi-experimental or randomized controlled trial. First, the research setting of Study 2 was planned to be situated in parents’ homes in which controlled between-group experiments were practically not feasible. Single case designs are attractive alternatives, because they are true experiments like the randomized controlled trial, (Kazdin, 2011). Single case designs

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are characterized by having individual participants as his or her own control, instead of using another individual or a group as a control. The experimental design controls for behavioral change due to factors such as developmental maturation, and changes in settings, therapists, and materials. It has the capacity to draw valid inferences as the experiment manages to control and rule out any plausible factors that obscure the effects of intervention. Second, the fact that single case designs only focus on investigating changes over a few individuals fits the research intention in this stage of research. At this exploration stage, the new mobile app parent training app was used for the first time to investigate whether parents would change in their intervention behaviors and to what extent. Single case designs are suitable and sensitive in evaluating how individuals respond to the intervention and in providing information that can be used to improve effects in relation to the intervention specifics. It has the advantages of enabling researchers to measure more than one behavior at the same time, observe individual differences in response to the intervention and evaluate the actual behavior change in real life settings.

Research Design The current research utilized a sequential mixed methods design and involved the collection of both qualitative and quantitative data. The overview of the research design is depicted in Figure 3.1. It was conducted in two stages. In Study 1, a qualitative interview study of ten parents of children with ASD was conducted. It explored the parental perception on their intervention journey for their child with ASD in Singapore with applied thematic analysis (Guest, MacQueen, & Namey, 2012). It achieved the

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following purpose. The study analyzed parents’ experiences of their intervention with their child with ASD and explored new and different facets of experiences in the context of Singapore. The results of the study provided the contextual information to inform the design and development of the quantitative instrument – the parent training mobile application. In Study 2, the mobile application was developed and tested for its effectiveness in training parents to enhance the functional communication of their child with ASD. The mobile app had the intervention curriculum of the naturalistic language intervention and would be utilized in home settings by parents of children with ASD. A multiple baseline single case design across participants and settings was utilized to examine the effectiveness of the mobile app parent training program. Study 2 can be described as a study-within-a-study design (Meadan et al., 2009) because the effectiveness of the parents’ implementation of intervention strategies, as well as, how these implemented strategies influenced their child’s social communication skills were examined. In addition, how parents maintained the intervention skills in their home settings after being trained and how they generalized the intervention skills to other home or community settings would also be examined. The mobile app parent training program served as a prototype for effective implementation of an evidence-based practice.

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Study 1 Qualitative study of parent experience on autism journey Recruitment of parent participants Semi-structured individual interviews with 10 participants Qualitative data analysis

Design and development of mobile app multimedia tool for parent training

Study 2 Mobile app parent training, intervention & generalizations across settings Recruitment for pilot study & Study 2

Pilot case study of 1 parent-child dyad to test on the utility of mobile app Start of parent training & post training intervention Multiple baseline single case design across participants on 3 parent-child dyads Novel setting probes Multiple baseline single case design across settings of the same parent-child dyads

Data Analysis

Figure 3.1. Overview of research design (Study 1 & 2)

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Chapter 3 Summary This chapter describes the details of the research design and the methodology used in this current study. The purpose of the research is to develop and evaluate a new mobile app parent training program to improve the functional communication of children with ASD. In order to fulfill this purpose, the study adopts a sequential mixed methods approach with two separate studies. The overarching philosophy of the methods used is from the assumptions of critical realism. There are many advantages of using mixed methods design for the current study including understanding the contexts by using a qualitative study and compensating the lack of personal and idiographic knowledge of the context in many evidence based practices in order to facilitate intervention implementation. The first study was a qualitative study with an aim to understand the parental perception of their intervention journey with their child with ASD. Ten parents were interviewed and the data collected were analyzed using applied thematic analysis. The analyzed themes provided data for the development of the mobile app with the consideration of the local context. In Study 2, the effectiveness of the newly developed mobile app parent training program was evaluated using the multiple baseline single case design across participants and settings. The program effectiveness was determined by the changes of parents’ intervention behaviors and children’s functional communication after the use of the mobile app parent training program.

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CHAPTER FOUR STUDY ONE: CONCEPTUAL FRAMEWORK

This chapter informs the conceptual framework of the qualitative study (Study 1). According to Maxwell (2013), the conceptual framework of a qualitative study may include “the systems of concepts, assumptions, expectations, beliefs and theories that supports and informs your research.” (p. 39) Therefore, the conceptual framework of Study 1 takes into the account the relevant research related to the experience of parenting children with disabilities or ASD and related studies in the Singapore context. In addition, the chosen theoretical frameworks that facilitated the qualitative analysis are presented. Finally the chapter ends with the summary.

Research Related to Parenting Children with ASD and Other Disabilities There is a rich literature of both qualitative and quantitative studies on parenting children with disabilities or children with ASD. They are found in a variety of fields such as sociology, nursing, health studies, pediatrics, and educational psychology. In this section, only qualitative studies that examined parental perspectives on living with children of disabilities and/or ASD are reviewed as they illuminated us on how parents managed intervention for their children. Green, Darling, and Wilbers (2013) reviewed 78 qualitative papers between 1960 and 2012 and examined if parents’ experience of living with their children with disabilities has changed over the past 50 years. They observed that the themes of normalization (i.e., to live as ‘normal’ as possible), and parental entrepreneurship (i.e., to obtain information and services for their children) dominated from the 1960s to

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1980s. Parents were dissatisfied with professionals and made lengthy quests for educational and other related services. Many parents acknowledged that their children placed extraordinary demands on their families (i.e. care needs and financial burden) and increased their emotional stress. Nonetheless, they reported that their lives were enriched and more meaningful because of their disabled child. Proceeding into the 1990s and 2000s, the theme of striving to be normal (i.e., normalization) became less apparent. Instead, the experience of feeling stigmatized by others because of their child’s impairments and the benefits of raising a disabled child became more prominent. Though the authors did not do a cross-cultural comparison, they noticed that the themes across different cultural contexts were remarkably similar during this period. They urged more provisions be given to parents in terms of useful information and appropriate services, professional partnerships and viewing disabled children as valuable human beings. Many studies on parents’ experiences living with a child with ASD reported findings similar to those of families with children with other disabilities. However, there are other nuances that only the condition of ASD brings to families. For instance, DePape and Lindsay (2015) reviewed 31 qualitative papers which examined parents’ experiences of caring for a child with ASD. Using a family life cycle approach, the authors followed the trail of narratives from before getting a diagnosis, to getting a diagnosis, adjusting their family lives, navigating the system, empowering themselves as parents and moving forward. At the beginning of the journey, parents searched for answers as they discerned atypical development in their child. Then parents had contradictory experiences– feeling both relief and devastation upon hearing the diagnosis of ASD. Many of them experienced emotional stress, as well as guilt and

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blame, both from themselves and even from health care professionals. Many parents reported a negative toll on family life adjustments. They described the stress and burden on daily routines, finances and careers, as well as the psychological strain on themselves, their spouses and their other children. As parents navigated the school system and accessed appropriate treatments for their child, they found themselves alone with little support. Then parents found ways to empower themselves and implement strategies that worked for their families. As parents moved forward, they sought to find equilibrium between ‘normalcy’ and the benefits of having a child with ASD as their child bought new closeness and meanings to their family lives. Nonetheless, that did not diminish their concern for their child’s future. Parents were most concerned with their independence and happiness. Other qualitative studies about the life experiences of families with children with ASD indicate a variety of levels and orientations used for their analysis. There are descriptive reports, grounded level analyses and theorizing qualitative experiences for parents of children with ASD. For instance, Fong, Wilgosh, and Sobsey (1993) interviewed eight parents of adolescents with ASD to understand their parenting experience and to identify their needs. Six descriptive themes emerged from the interview data: behavioural concerns, social and communication concerns, family related concerns, education and related services, relationship with professionals, and independence and future concerns. Glazzard and Overall (2012) examined parental experiences of raising a child with ASD using a mixed methods approach. In their qualitative analysis, they found that parents experienced a low level of support from agencies and professionals. Poor communication and a lack of understanding of parents’ needs were the general verdicts from these parents in Great Britain. Similarly, Ludlow,

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Skelly, and Rohleder (2012) reported on a qualitative interview study with 20 parents of children with ASD. Their thematic analysis extracted five themes: dealing with challenging behavior, dealing with judgments from others, lack of support, impact upon the family and, coping and the importance of appropriate support. These reports are more descriptive by nature and illustrated the practical concerns faced by parents of children with ASD. Other researchers assumed the stance of interpretative phenomenology to understand how parents made sense of the ASD journey. In western Canada, Woodgate, Ateah, and Secco (2008) conducted qualitative interviews with 16 families with children of ASD and analyzed the data using hermeneutic phenomenology. The theme living in a world of our own emerged as the essence of the parenting experience for these Canadian parents. Vigilant parenting, sustaining the self and family, and fighting all the way were the three themes emerging from the analysis. In Australia, Cashin (2004) asked a similar question ‘what is the lived experience of parenting a child with autism?’ Nine parents were interviewed. Six themes were found: less spontaneity, less social contact, less things, less self, the triumph of connection and patience. Through exploring the essence or the themes of their parenting experience, Cashin (2004) found that the phenomenon changed the parents’ very own Daesin (self/ being-in-the-world). These studies provided a rich pool of information for constructing a plausible conceptual framework to aid the investigation on parent experience of having a child with ASD in the local Singapore context.

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The Singapore Context Locally, there is little and limited qualitative research on parents’ experience of autism intervention or their journey of parenting a child with ASD. This section reviews a few relevant local studies in this area. The Enabling Masterplan 2012-2016 Steering Committee (2012) conducted one informal study to understand the experiences of people with disabilities and their families in Singapore. The committee conducted focus group discussions with the persons with disabilities, senior staff of voluntary welfare organizations, parents of children with special needs and caregivers of persons with disabilities. They reported the summaries of the feedback and recommendations from these key stakeholders on early intervention and special education. However, an independent report of results was not provided as most of these results were embedded into the 5 year service plan and recommendations for early intervention and education for persons with disabilities. The summaries of recommendations include providing standardized assessments and a national curriculum framework for early intervention, or lowering teacher to child ratio in classrooms. Poon (2013) interviewed twenty parents of adolescents with ASD and sought to understand their expectations regarding their child’s post-school social attainments. Four major themes emerged which influenced parental expectations on their child’s post-school living, namely, learning and behavior, future concerns, need for formal support and impact of the broader society. The results highlighted the need for more local post-school services and family centered intervention for independent living and behavior management. Foo, Yap and Sung (2014) conducted a qualitative study to investigate the lived experience of parents of children with ASD and challenging

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behaviors. Two dominant themes, sense of responsibility and renewed appreciation of self were new local findings which received little attention in the current literature. The sense of responsibility included parents’ duty to care for and protect the child, to care for their spouse and support one another, to ensure child’s behaviors not inconvenience or hurt others, and to advocate for and contribute to the service delivery of ASD. Parents also had a renewed appreciation of self and developed a sense of self-respect in terms of their capacity in caring for their child with challenging behaviors. These results implied a family resilience approach in helping families with children with ASD and challenging behaviors.

Theoretical Frameworks The qualitative study was grounded in two theoretical frameworks: ecological systems theory and the social problem solving model. Ecological systems theory helps view the intervention in different layers of ecological systems whereby the social problem solving model provides a framework to delineate the problems, obstacles, strengths and the possible attempted solutions from the parental perspectives. Ecological systems theory. Bronfenbrenner’s (1986) ecological theory has been widely used as a broad theoretical framework for understanding intervention and child development. Child development is considered to be enveloped within “a complex system of relationships affected by multiple levels of the surrounding environment” (Berk, 2006, p. 26). Bronfenbrenner’s ecological model includes five systems. The microsystem refers to the child’s immediate environment such as family, school, and peers that directly impacts on the child’s development. The mesosystem is defined as the interconnection of the child’s immediate microsystems, for example, the interactions

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between the family and the teachers. The exosystem refers to the social environment that does not directly impact the child’s experiences, such as the mother’s or father’s workplace, parent’s network with friends. The macrosystem describes the culture, including the laws, values or the custom of a society in –which the child lives. Finally, the chronosystem refers to the sequential events that happened across time and impacted a child’s development, as well as sociohistorical circumstances. For example, a divorce can be an event that affects a child’s development. An example of a sociohistorical circumstance can be the increasing number of women joining the workforce in the past decades. The ecological model helps us to understand the system of care (SOC) and the key agents impacting child and family functioning (Worcester, Nesman, Mendez, & Keller, 2008). The social problem solving model. The framework for the qualitative analysis was also informed by the social problem solving model, which is the theory used in the common problem solving therapy in psychotherapy (D’Zurilla & Nezu, 2010). Social problem solving describes a learning process, coping strategies and self-control methods that are used by individuals. There are three major concepts in this theory: (a) social problem solving; (b) the problem; and (c) the solution. Social problem solving deals with many common real life problems including impersonal, personal and interpersonal problems. It attempts to identify barriers to reaching one’s goal. The problem usually is a present conflict in life which calls for a resolution by achieving a new goal. The problem also includes obstacles and events that signify or cause the problem. The solution is the response and the outcome of the problem solving. An effective solution is one that can achieve the problem solving goal.

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Problem solving therapy is a brief and strategic kind of therapy which is widely used in Singapore and Asia (Yeo, 1993). Yeo (1993) developed a framework called PADI in problem solving – i.e., problem definition, attempted solutions, desired changes, and intervention plan. The framework was adapted from the principles of Haley’s (1987) influential book problem solving therapy. Although it is a modified problem-centered approach, the framework is health-oriented and person centered. It draws on strengths which are capitalized by the individuals or the family members and attempts to tap on their resources to solve a problem. It is a practical framework which stays close to a person’s context and explores their perspectives in their attempted solutions. The model helps us formulate solution focused themes and discourses to understand parents’ experiences parenting children with ASD.

Chapter 4 Summary This chapter shapes the conceptual framework for Study 1. Existing qualitative studies of parenting children with disabilities or ASD suggested themes that might arise what we could expect from investigating the current topic. Parental experiences of children with disabilities were similar to those who had children with ASD. Parents of children with disabilities strived to live as normal as possible and were diligent in getting information and services for their children. They experienced financial and emotional strains resulting from providing care to their children. Nonetheless, they found their lives enriched with meaning from raising their child with disabilities. Parents of children with ASD reported additional challenges including problems with challenging behaviors, lack of support, and emotional strains which were unique to raising a child with ASD. There were limited local qualitative studies which informed

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parents’ intervention journey with their children with ASD, therefore, the current study filled the research gap in this area. Two local qualitative studies investigated specific groups of parents of children with ASD: parents of children with challenging behaviors and parents of adolescents with ASD. The qualitative analysis was grounded in two theoretical frameworks: ecological systems theory and the social problem solving model. The next chapter informs the method of Study 1.

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CHAPTER FIVE STUDY ONE: METHODS

This chapter explains the method of Study 1. It describes the ethical concerns, recruitment process, participants, how data were collected and analyzed, and validity issues of the qualitative study. The chapter ends with a summary.

Ethical Considerations This study adhered to the ethical concerns of informed consent, participants’ right to privacy and confidentiality and protection from physical and emotional harm (Fontana & Frey, 2000). The study was approved by the Nanyang Technological University Institutional Review Board (NTU-IRB) (IRB 12/01/16). Each participant was given an information sheet about the study. In addition, the researcher verbally explained the purpose of the study to each participant. Participants were told what would be involved and were given a choice to withdraw at any time without prejudice or penalty. Written informed consents were obtained from all participants. The identity of the participants was protected. During transcription, the participants’ name and their child’s name were not recorded. The audio recordings were destroyed after the study was completed. Pseudonyms were used when writing up the results. No risk or harm was foreseen for those who were involved in the interviews but it was possible that participation in the interviews would arouse feelings of grief for some parents. Such parents would be referred for counselling support if and when such

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services were deemed appropriate. No parent participants asked to be referred to counselling support in the study.

Recruitment Convenience and snowball sampling was adopted (Palinkas et al., 2013). Parents were recruited through word of mouth in an unofficial network of parents of children with ASD. An advertisement flyer was sent to these parents and they were invited to email or call the researcher for further information and participation. Individuals selected were those with the following criteria: (a) parents who have a child with ASD; and (b) parents who live in Singapore and are English speaking. The sample did not limit those parents with children of newly diagnosed ASD but allowed parents with older child of ASD to give diverse perspectives. The sample was selected to give diversity of voices of parents who experienced different developmental stages of their children so to cover the major issues in their intervention journey.

Participants Ten individual parents with at least one child with ASD participated. Individual participant demographics are depicted in Table 4.1.Two were fathers and 8 were mothers. The parents ranged from 35-47 years of age (M = 39.7). Eight parents were Chinese Singaporeans, one was Malay Singaporean and one was a Caucasian who had lived in Singapore for 10 years. All parents were married except for one parent who was separated at the time of the interview. Three parents had their only child with ASD while the rest had at least one other child in addition to their child with ASD. Two parents had more than one child with ASD.

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The parents who participated had children with ASD ranging from 4 to 18 years. They were seven boys and three girls. The children varied in term of severity of ASD and their functioning. At the time of the interviews, eight of them attended special schools for children with ASD, one of them was home-schooled and four of them were in mainstream schools. Table 4.1 Demographic Profile of Participants in Study One Parent Parent’s age, sex Parent’s and ethnicity educational level

Parent’s occupation

Adrian

47, M, Chinese

Postgraduate

Professional

Age of child with ASD 18, 17, 15

Betty Cindy Dean Elaine Fen Gina Hannah Iris

37, F, Chinese 42, F, Chinese 46, M, Caucasian 35, F, Chinese 38, F, Chinese 38, F, Chinese 38, F, Malay 41, F, Chinese

Postgraduate Not provided Postgraduate Postgraduate Not provided Degree Secondary Not provided

Housewife Housewife Manager Professional Housewife Housewife Administrator Housewife

6 11 8 6 4 5 11 11

Jane

35, F, Chinese

Degree

Professional

9, 9

Child’s education

Mainstream Sec School Special School Special School Home-schooled Early Intervention Early Intervention Early Intervention Special School Mainstream Pri School Special School

Data Collection Data collection took place over a 1 month period from 2 Feb 2012 to 25 Feb 2012. All participants signed a consent form and were also asked to provide their basic demographics to the researcher prior to the interviews. All parents participated in a semi-structured, in-depth, audiotaped interview conducted by the researcher. The interview length ranged from 1 hour 2 minutes to 1 hour 26 minutes. The average interview length was 74 minutes. Parents were free to choose a quiet conducive place with privacy and at their own convenience. For research site, most of the parents chose to conduct the interviews in a café and only two interviews were conducted in their homes. Although most of the interviews were conducted in public places, the interviews were usually undertaken in an environment free of distraction from other people. All

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interviews were not stopped or disrupted by any external parties except for two occasions. In these two occasions, the interviews were paused for a short while because the participants needed to attend to their own child. Interview questions. An interview schedule and questions were constructed based on the research question for the semi-structured interviews in Table 4.2. These questions aim to facilitate the elicitation of stories, thoughts and feeling about the target phenomenon (i.e. intervention journey of a child with ASD). Table 4.2 Interview Questions in Study 1 1. Tell us the story about how your child was diagnosed. 2. In what ways has your life changed since your child was diagnosed? 3. So far, how has your child received help? 4. What have you learned from those who have tried to help you and your child? 5. In what ways has the help you’ve received been useful or not useful? 6. Living with autism is a big adjustment. What’s it been like for you personally? For other family members? 7. What do you think you need? 8. What are your hopes for your child and your family?

Interview procedure. Before the interviews, the research objective and the nature of the interview were explained to the parents. Participants were informed about the interview questions that would be asked, and the possible areas that the researcher would probe for more information. Interviews were usually rounded off by asking if the participant had any other points they would like to mention. Participants were given ample opportunities to respond to the research topic so as to achieve material saturation (Charmaz, 2006). Field notes were made after each interview describing the interview itself, the context such as the time and the setting of the interview, the researcher’s responses including emotional or cognitive responses and any impression of connections with emerging conceptual ideas (Saldana, 2009; Warren & Karner, 2010).

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Data Analysis The data analysis method was informed by applied thematic analysis (Guest et al., 2012) and the constant comparative method (CCM) (Miles, Huberman, & Saldaña, 2013). Epoché. Preparation for data analysis started before the researcher gained entrance to the lifeworld of parents of children with ASD via interviews. The researcher first considered her own lifeworld in which she shared similar experiences of doing intervention work with children with ASD. At the time of conducting interviews, the researcher was an educational psychologist working in Singapore with 10 years postmasters experience of assessing children with developmental disabilities and doing related intervention work on children and with parents. To gain a better perspective of the phenomenon, the researcher underwent the process of epoché which means “the process by which we attempt to abstain from our presuppositions, those preconceived ideas we might have about the things we are investigating” (Langdridge, 2007, p. 17). She was aware that her prior experience in the public hospitals might affect her interview style and bias her interpretation of their narratives. For instance, she might expect participants to have certain amounts of frustrations for the waiting time of the services and might only identify these comments in their narratives. This was one of the examples that the researcher needed to consciously “bracket” or put aside during the research process. Although it was not possible to set aside all our presuppositions and natural attitudes, the researcher attempted to “bracket” her preconception by keeping a reflective journal of how she had experienced intervention over the years. She learned to be conscious of her possible bias, attempted to be more open to the participants’ experiences, and develop a freshness of

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vision with fewer presumptions and prejudices. Through examining and managing bias and expectations and constant consultations with the research supervisor and the external auditor, the researcher cultivated the process of reflexivity to maintain the rigor of data analysis. Transcription. Transcription is viewed as a powerful process of representation (Lapadat & Lindsay, 1999; Oliver, Serovich, & Mason, 2005). It is also a process of interpretation and generation of meanings (Halcomb & Davidson, 2006). Thus, the transcription style was carefully considered to reflect the theoretical underpinning of the research design. The audio files were transcribed by a trained research assistant. A detailed description of the transcription guideline adapted from McLellan, MacQueen, and Neidig (2003) is provided in Appendix 5.1. In this study, the stance of naturalism was taken in which every utterance and non-verbal elements of speech such as emotions or pauses were transcribed and recorded in as much detail as possible, except for minimal utterances of ‘mm-hmm’. For example, laughter was recorded as (laughs) and pauses were recorded with (…).In balancing the integrity of the data and tidying up the phrases, the local dialects such as Singlish and Mandarin were recorded in their original language forms in the written transcripts. However, the quotes were edited into Standard English at the time of reports and publication for ease of reading. Participants’ names were not recorded on the transcripts and were replaced with [name of parent omitted] or [name of child omitted] in view of confidentiality. The researcher ensured an appropriate level of accuracy by proofreading all transcripts against the audio files and revising the transcripts accordingly. Since the researcher was the interviewer, she was proficient to uncover any transcription errors

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such as misinterpretation of content and language errors. In addition, ambiguity and inconsistencies of meanings were observed. The researcher clarified the intended meaning of the text from the original source (i.e., the audio recording) with the use of the field notes. This was seen as a source of triangulation compared to the exclusive use of the audio-recordings (Warren & Karner, 2010). Data analysis also happened concurrently during the process of listening to the audio recordings as analytic memos were written to capture the researcher’s thought and interpretation (Wengraf, 2001). The proof-read transcripts were sent back to the participants via email to seek agreement to ensure further accuracy of the transcripts. Objections and errors were accepted through participants’ feedback to the transcripts. First stage of analysis: the coding process. The team approach in data analysis was seen as an essential and necessary element for credibility and consistency (Hill, 2012). The involvement of multiple investigators (the researcher, the research assistant, the researcher’s supervisor and an auditor) helped to minimize researcher bias through analyst triangulation (Patton, 2002). Following the guiding method of thematic analysis, the researcher read and reread all ten transcripts to immerse herself into the data and to attend to the participants’ experiences by bracketing some of the her own preconceptions from the transcripts. The researcher began the analysis with individual cases. Then she identified common ideas that had emerged within individual transcripts and across the transcripts. She developed labels for these different types of ideas and framed the answers to the interview questions that were most related to the research questions (Guest et al., 2012). Structural codes were also formed to tag specific questions of concerns in the data set. Then the research team at this stage (i.e., the researcher and the research assistant) read a subset

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of transcripts line by line and discussed the possible domains in addition to the ideas that had developed (Strauss & Corbin, 1998). Each researcher then analyzed the transcripts according to these initial domains and created supplementary domains as needed. The new domains that each researcher had created were discussed. Then each team member agreed to reread the subset of data and recode according to the new scheme. The recursive process of analysis using initial cases (reading, creating new domains, discussion of the domains, coding) continued as a process to open up the mind to the range of possible meanings, properties, dimensions and relationships (Strauss & Corbin, 1998). For example, the quote “I know the thing is uh-to us at that time speech therapy was probably the most important of all because unfortunately the queue is very long, we never got the place.” This was coded by as experience with intervention from external source and by Rater 2 as parent’s priorities, coping and intervention strategy. After discussion, it was decided that this quote shall be put under long queue/lack of service. Then the initial short-list of 14 provisional domains (organizational categories or topic areas) was formed by vigorous back-and-forth coding, recoding and discussion (Creswell, 2006; Hill, 2012). The researcher’s supervisor checked the domains and core ideas which were revised accordingly based on the audit. The initial codebook of the study can be found in Appendix 5.2. For instance, some of the key domains include “parent’s priorities, coping and intervention strategy,” “parent’s emotional conditions,” and “parent’s financial situation.” Then the researcher and the research assistant each coded separately the same 20% of the transcripts with the initial domains. The percentage of inter-rater agreement for coding was calculated as follows. The number of agreed codes was divided by the sum of the number of agreed and disagreed codes and

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that was multiplied by 100 (i.e., 630/750 X 100 = 84%). Thus intercoder agreement was verified and the inter-rater reliability was 84% (See Appendix 5.3 for more details). The remainder of the transcripts was divided into two portions. Each team member coded each of the two portions of transcripts. Second & final stage of analysis: analysing data for categories and subthemes. When the data was organized into domains, core ideas were summarized in each domain by the three team members (i.e., the researcher’s supervisor, the researcher and the research assistant). Then themes and patterns across participants’ responses were explored within each domain. Cross-analysis and interpretation were done when the researcher clustered the responses into different categories to represent the data. At this stage, theoretical frameworks were particularly useful in determining the significance of the subthemes and categories and organizing the relationships between them. Emerging categories and subthemes were audited by the researcher’s supervisor at each transitional stage of the data analysis. An external auditor who was experienced in counselling parents of children with ASD and qualitative research was engaged to check the cross-analysis. The researcher shared the participants’ quotes and their related themes to the auditor and met with her to discuss the consistency between the quotes and their themes at two separate times during the data analysis process. The first time was at the early stage where emerging themes were organized and the second time was at the final stage where the themes were finalized. Revisions were done based on the auditor’s feedback and comments. For instance, during the final stage, the auditor advised the researcher to choose a more appropriate quote so that it could be more representative for the theme under goals and dreams. Change was done accordingly.

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Report of the results. In the results section, sufficient descriptive data of the sample was reported. This helped readers determine the degree to which the current study can be transferable to other contexts (Merriam, 2009).

Validity Issues Rigor was established by using methods in usual qualitative practices such as audit trail and a team approach, triangulation/member check, and saturation checks. Audit trail/a team approach. An audit trail was maintained throughout the study to ensure transparency and credibility (Merriam, 2009). Figure 5.1 shows the audit trail of the analytical process. The process of data analysis in the current study was more recursive rather than linear, as shown in Figure 5.1. The researcher underwent self-examination (epoché) by keeping a reflective journal. The team approach was also used in data analysis to reduce the researcher’s bias. At the beginning, a research assistant helped with the initial coding of categories. Inter-rater reliability of initial coding was achieved at 84%. At the second stage and the final stage of analysis, the researcher had constant consultations with the research supervisor and the external auditor for cross checking and analysis. Details of data collection and analysis have been reported as much as possible to allow for further replication of the study earlier in this chapter. Triangulation/Member check. Triangulation is the use of multiple methods for collecting data (e.g. collecting diary entries, interviews, field observation etc.). It is also a way of collecting multiple stakeholders’ perspectives on the same phenomenon, for example, collecting both therapists and counselees’ perspective on counselling

STUDY ONE: METHODS § 103

Epoché. Researcher interviews parents, listens to the interviews again and writes initial impressions.

Transcription by trained research assistant Proofreading and cleaning of data. Feedback from parents regarding the accuracy of the transcripts

Recursive process of initial coding process. Categories developed.

Coding of 20% of the transcripts from two team members. Intercoder agreement verified. Coding the rest of the transcripts.

Cross analysis and interpretation: Exploring themes and patterns across participants’ responses within each category Emerging categories and subthemes audited by supervisor and external auditor

Revisions done based on the audits

Writing up of results

Figure 5.1. The audit trail for Study 1. Note. The process of data analysis in the current study was recursive rather than linear as shown in here.

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experience. In the current study, conducting interviews with parents was the appropriate method for eliciting information, parent’s perceptions and their feelings of the phenomenon. The involvement of multiple investigators (the researcher, the research assistant, the researcher’s supervisor and an auditor) helped to minimize researcher bias through analyst triangulation (Patton, 2002). The researcher’s field notes of her observation during the interviews were the additional sources of data for triangulation. A snapshot of the researcher’s field notes is provided in Appendix 5.4. Member check is a procedure of soliciting feedback on the findings from interviewees (Merriam, 2009). Many researchers consider member checks or respondent validation as a way to gain clarity or greater accuracy in interpretation of the phenomenon. However, other researchers have objections to member check as they claim that member checks adversely transform the data they are going to analyze (Warren & Karner, 2010). Participants may not be interested in providing feedback, may be anxious about other’s perception of their experiences or may not be convinced about analyses that are beyond their understanding (Bloor, 2001). For these reasons, member checks were not be utilized as a measure of credibility in this study. Instead, triangulation of the interview data with the field notes, peer auditing and mentoring during the process of data analysis was used as a way to ensure credibility of the data. Saturation check. Theoretical saturation is usually used for establishing integrity in qualitative data analysis (Hill, 2012; Williams & Morrow, 2009). It means collecting data until the point is reached when no new findings emerge. This is to ensure stability in the domains and categories in the data sets, and sufficient data coverage to link the data to the research questions and the theoretical framework of the research study (Williams & Hill, 2012).

STUDY ONE: METHODS § 105

A relatively sufficient sample size (n =10) was trusted to bring consistent findings in this study. To ensure stability in the domains and sufficient data coverage for the current study, every attempt was made to link individual results to overarching categories in the cross analysis. Any emergent or overarching themes were considered as “recurrent” only when they represented at least half of the cases of all of the participant interviews. The degree of recurrence and the prevalence of super-ordinate themes would be reported in simple frequency statistics. In this way, it compensated the difficulty of conducting more interviews because of the limited designated time for data collection in this study.

Chapter 5 Summary The chapter elucidated the methods of Study 1. Ten parents of children with ASD participated in semi-structured interviews for the qualitative study of investigating their experiences of intervention journey for their child with ASD. They were recruited through word of mouth in an unofficial parent network. The study adhered to the ethical concerns of protecting participants from harm, informed consent, and privacy and confidentiality. The interviews were transcribed by a research assistant and were proofread by the researcher. The transcribed data were analysed using applied thematic analysis. A team approach was adopted throughout the process of data analysis. During the first stage of analysis, the research assistant and the researcher each coded a subset of data according to initial ideas and domains. They discussed their codes, created new domains and recoded the data subset. They finalized 14 domains after back-and forth coding and discussion. Then each separately coded the same 20% of the transcripts. Inter-rater reliability was obtained at 84%. Each team member coded each of the

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remaining portions of transcripts. At the second and final stage of data analysis, themes and patterns across participants’ responses were explored within each domain. Emerging categories and subthemes were audited by the researcher’s supervisor and an external auditor at each transitional stage of the data analysis. Themes and subthemes were confirmed after repeated analysis and constant comparison across quotes of participants. Rigor was maintained by using audit trail and a team approach, triangulation/member check, and saturation checks.

CHAPTER SIX STUDY ONE: RESULTS & DISCUSSION

This chapter presents the results and discussion of Study 1. In addition, the implications of results are considered in the light of their contribution to the design and the development of the mobile app parent training program. Limitations are discussed. The chapter ends with a summary.

Results The results of this qualitative study focused primarily on parents’ perspectives on aspects of the microsystem, mesosystem and exosystem in Bronfenbrenner’s (1986) social ecological theory. The interactions in these systems were perceived as having direct impact on parents’ intervention journey. For the purpose of the study, parents’ perspectives on how the macrosystem and chronosystem affect their child’s intervention were not systematically explored. In other words, parents’ views on how the culture or the custom of the society or macroscopic events happened in the society that affect their child or their intervention journey were not covered. Three main themes emerged after the analysis, namely, goals and dreams, obstacles, and strengths. Although problem definitions are important in the framework of a problem solving model, it was decided that the flip side of the problem, i.e., parents’ goals, desires or dreams would be explored and extracted. Treatment of data from the positive health orientation and strength based approach are consistent with the problem solving model (Haley, 1987; Yeo, 1993). The themes and subthemes are presented in Table 6.1.

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In presenting the results, parents’ responses were edited from Singlish to Standard English when necessary to clarify their meanings for readers. Table 6.1 Themes and Subthemes of Study 1 Goals & Dreams Goals for Children Dreams of Parents Obstacles Limited & Insufficient Services Financial Strains Emotional Strains Struggle to be a Therapist Strengths Spouse as an Anchor Families with Cohesion Support from Social Network ‘Cultivate Optimism’

Goals & dreams. This theme was characterized by parents’ goals and aspirations for their family outcomes. Parents had short term goals and far reaching dreams for their child with ASD and for themselves. The details within this theme specified the kind of goals and dreams that parents wished to work toward. Goals for children: A diversity of goals. Parents had a diversity of short term goals for their children with ASD. These goals arose from their efforts to deal with their perceived problems or issues of their children with ASD. The subthemes are presented in Table 6.2. Table 6.2 Goals for Children Parent’s initial Communication goals Interpersonal skills Improving behaviors

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Parents’ goals understandably varied because the qualitative interviews were conducted with parents who had children with ASD of different ages (see Table 6.1).

STUDY ONE: RESULTS & DISCUSSION § 109

Four of them had teenage children of ASD and six had younger children from preschool age to 9 years old. Some older children were lower functioning and went to special schools (i.e., Cindy’s, Iris’, and Jane’s children). Adrian’s three children with ASD went to mainstream secondary schools. Four children with ASD were still in early intervention centers (i.e., Betty, Elaine, Fen and Gina’s child). Dean’s child was being homeschooled at the time of the interview. Developing the child’s communication and language was one important goal among six parents (see Table 6.2), especially for younger children and children with lower functioning. Difficulty in verbal and nonverbal communication is a key deficit for all children with ASD. It was these parents’ desire to see their child understand and use language for communication. For instance, Fen wanted her child to speak eventually and be less dependent on communication cards (PECS). She said, “Actually I didn't stay on PECS for long because it's still this desire that my child could proceed to talking. I mean of course they will tell you PECS is a stepping stone.” Cindy felt that her child could do “a lot of things” when he could communicate. She noted that, “so for me that would be more of my focus … he can do a lot of things as long as he can communicate with us… can communicate with other people you know.” These parents focused on teaching their child to understand and use the language for better communication. They saw that communication is a key goal to help other areas of their child’s development. Developing the children’s social skills or the way they interact with other people appropriately became an important goal for three parents with teenagers or primary

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school aged children with ASD. For instance, Adrian felt that interpersonal skills are crucial in term of preparing his children with ASD to go to the workforce. He said: I’m very theoretical and very nice but the reality is that there are very practical indications for example, if you want my child who is going to be able to go out in the workforce then the way they interact with people is going to be key right? Hannah was concerned about her son’s behaviors in relation to the opposite sex as he was a teenager now. Hannah would keep reminding him what not to do with his peers, e.g. not to touch girls. She said: So I always keep reminding him that you are a big boy now. You cannot touch girl because he used to like bare skin. So sometimes he just likes to rub people’s bare shoulder so I would have to tell him that no he can't do now. He cannot do like that now because you’re a big boy. Her goal for her son was to behave appropriately with his peers. Similarly, Iris’ goal was to help his primary 5 son with ASD to relate to his peers during recess in school. She would show and tell him what to do in relating to his peers or write a story so that he comprehended the dos and don’ts in social settings. When being bullied, she taught her son in this way, “He run away so he will say stop it. I taught him to use things like that say tell them stop it I don't like it yeah. So, I think he did these strategies. He will run away you know (laughter).” Finally, five parents (i.e., Betty, Cindy, Dean, Fen and Jane) had the same goal of improving the behaviors of their children with ASD. These parents reported that their children with ASD had frequent temper tantrums or meltdowns or had behaviors that endangered themselves or others.

STUDY ONE: RESULTS & DISCUSSION § 111

One aspect of this goal was to manage their child’s behavior when they were throwing a tantrum or having a meltdown. Despite age differences among their children, Betty, Dean, Hannah, and Jane shared a similar goal of calming their child down while they were having a meltdown, For instance, Hannah, whose child was 11 shared that, “getting him to calm down when he is like throwing tantrum … then try to walk [work on] eye to eye contact is very important.” Jane felt that calming her children with ASD down was important or else they could not learn or achieve anything. She said, “If they are not able to keep cool, calm herself down, they cannot achieve anything. Cannot do cannot learn. Yeah I think this is very important.” Other parents like Cindy said they would like to improve their child’s behavior so that he would not be a danger to self and others. Cindy expressed that, “The day he will misbehave he will shout because he is unhappy … I will tell him that it’s dangerous for you to stand up so I say that you don't shout because it’s not nice.” In short, parental goals for their children with ASD were goals for improving communication, improving interpersonal skills or dealing with meltdown/dangerous behaviors. These goals were closely related to their child’s developmental demands or current difficulty in response to their environment. These were current but not future goals. Adrian had this observation: My impression in family so far is that they can’t move beyond the first 3 years. 3-5 years. They are struggling to work with the school system. Just struggling to help their child cope in the school system. I mean which is real, which is relevant but the difficulty is then that it means that families are constantly firefighting. They are not being strategic about it you know.

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Adrian described that parents could be “fire-fighting” and only respond to the developmental or environmental demands of the ‘here-and-now’. They might not be strategic about their current goals. Notwithstanding, parents had some far reaching dreams for their children with ASD and for themselves. Dreams of Parents: Be independent, happy children & better parents. Parents had aspirations for their children’s futures and themselves. They desired their children’s independence and happiness and wanted to be better parents. The frequencies of the different aspirations across parents are summarized in Table 6.3. Table 6.3 Dreams of Parents Parent’s initial Desire child with ASD to be independent Desire child with ASD to be happy Desire to be a better parent

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Seven parents (see Table 6.3) wished that their children with ASD would be independent. All of these parents characterized independence as having the ability of holding a job or maintaining a career. For instance, Adrian and Dean would like to see their children with ASD go to university and be able to provide for themselves. Betty wished that her child could find a job he enjoyed and became an expert in the field. In addition to being able to provide for themselves, both Gina and Iris hoped that her child with ASD could be self-sufficient and have a family. Gina said: I wish for the best for him meaning to say that I would also want him to have his own life. I want him to have his own family-his own career. So, the best thing really is to bring [child’s name] up to speed, self-sufficient, independent fullstop.

STUDY ONE: RESULTS & DISCUSSION § 113

Some parents (i.e., Cindy and Jane) would like their children to be happy and live a meaningful life as they were aware that their children with ASD would not be able to hold a job in the future. The “meaningful” life that they mentioned included doing some daily activities instead of not doing anything at home. There are other dimensions of happiness which parents had mentioned. For instance, both Adrian and Betty wanted his children with ASD to be happy and find acceptance from others. The goal of these parents was to pursue a life with dignity for their children with ASD. Adrian expressed that “I hope they will be happy with themselves as adults. Two of course is that they will find acceptance you know …with the people around them.” Since the time of their children’s ASD diagnosis, six parents (i.e., Adrian, Betty, Cindy, Elaine, Gina & Jane) decided to become a better parent. There were at least three dimensions of what parents meant by being a better parent. First, being a better parent meant being around more to guide the child’s learning process and bring up their children the best they can (i.e., Betty and Adrian). Second, being a better parent meant the parent should be the one who understands their child best, even better than the expert (i.e., Elaine and Cindy). Third, being a better parent also meant the parent undergoes some character changes, for instance, being more patient and more responsible to their child with ASD and their family. In short, being a better parent meant having the capability to teach and relate to their child the best they could. Betty summarized her idea of being a better parent in this way: I hope that along the way I will become better and better mother (laughter) yeah. I will become wiser and calmer and not get angry when [child’s name] get agitated. I hope I can live with it, God-like, calmly and wisely.

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Obstacles. The theme itself was self-explanatory. It constituted several obstacles to parent’s goals and dreams for their child of ASD and themselves. These obstacles, namely, limited and insufficient services, financial strains, emotional strains, and struggling to become a therapist, represented both constraints within the families and/or within the larger ecosystem that provides ASD intervention. In the interviews, parents had identified the key intervention agents such as the therapists, professionals and teachers in schools and early intervention centers, as well as themselves. They also identified other key players for ASD intervention such as the school administrators and some government agents. However, for the purpose of this study, we only focused on those aspects of structural barriers in both microsystems and mesosystems which directly contributed to understanding of parents’ personal journey of intervention. Other aspects such as parents’ perspectives on child’s connection with key intervention agents such as teachers or therapists in the microsystem were not systematically explored. Limited and insufficient services. Participants reported limited and insufficient intervention services in Singapore. Intervention services could be available but were limited. Therefore, participants usually waited for the intervention services and received few intervention hours. In other cases, there was a complete lack of a particular type of intervention service or therapists. The parents’ views on the theme limited and insufficient services are summarized in Table 6.4. Table 6.4 Limited and Insufficient Services Parent’s initial A B   Wait for ASD services   Lack services/ therapists

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STUDY ONE: RESULTS & DISCUSSION § 115

Eight participants described the long wait for various ASD services. These limited services were in diverse settings. For instance, it took Cindy and Fen at least 4 months to get a hospital appointment to see a pediatrician for advice and diagnosis. Betty waited 2 years and Fen waited 3 months for speech and/or occupational therapy sessions in local hospitals. For five participants (i.e., Cindy, Elaine, Fen, Gina and Iris), their wait to enroll their child in the early intervention services or special schools ranged from 6 months to 2 years. After they began the early intervention service, Fen and Gina found that these subsidized early intervention services were limited as her child was only given 6 hours of intervention per week. Gina said: This has been a point I have been trying to tell the principal at AAS. I said I understand that it’s not your issue it’s not your organization issue but since the government has made it public that they want to help out maybe this is areas where we need to call for feedback. This is what parents need a daily school because now you do twice a week, you leave 3 days a week. What are we going to do with these kids? Six participants expressed that there was a lack of ASD-related services in various settings (see Table 6.4). Adrian, Cindy, Fen and Jane mentioned that there was a lack of educational or intervention services for their children beyond secondary education or after they reached 18 years old. Five parents (i.e., Adrian, Betty, Cindy, Elaine and Fen) felt that there was an acute shortage of speech therapists, especially in the subsidized service sectors. For instance, the early intervention center that Cindy’s child attended did not have a speech therapist for 6-9 months. Some parents (i.e., Adrian, Elaine, and Fen) felt that there was a lack of integrated services that provided crucial information to parents, especially information that helps parents make decisions on

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school selection or transition, for instance, from early intervention to a mainstream school. Fen felt that there was a shortfall in services for caregivers, especially in the area of coaching or supervising them to do intervention (i.e., “ABA training”), or providing them relief from caregiving. Let’s say I want to now go for ABA training there’s none. I can only learn indirectly by watching but if I want to go for something with Autism Resource Center, they have some useful classes but it’s only for educators so I raise why can’t parents do it … Yeah so I think some of these courses we need the coaching and supervision by the side but there is none because there are already not enough resources to help a child, who will have time to help you right. In essence, the limited and insufficient ASD services prompted parents to find other avenues to pursue their goals and dreams for their children with ASD. When the external resources seemed to be spare, they depended upon their own resources to achieve their goals. However, they also experienced deficiency in their own resources. One of which was their financial strains. Financial strains. Parents reported that the costs of intervention services were heavy. Not only was there the cost of paying expensive intervention fees, but there was also the strain of feeling financially burdened and worrying about their financial future. The parents’ views on the theme financial strains are summarized in Table 6.5. Table 6.5 Financial Strains Parent’s initial “Expensive” intervention Financially burdensome Worry for financial future

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STUDY ONE: RESULTS & DISCUSSION § 117

Six participants said intervention fees are “expensive.” These “expensive” ASD interventions include general educational therapies, public intervention/ special school fees, private speech therapy, therapy of applied behavioral analysis (ABA), and parent training sessions. These parents felt that these intervention fees were hard to afford and constituted a significant portion of their income. For instance, Cindy quoted that a private speech therapy session costs SGD$150 and was “expensive” for the middle income family. Similarly, Gina noted that, “This is what they call the ABA. It’s not cheap. Any parent will tell you that the cheapest which is what I am committed-it’s anything around 1800 to 2000 per month. Okay. But they have more expensive ones”. Gina used her savings to pay for the ABA therapy and “felt financially strapped.” Dean paid roughly SGD$2500 per month for his child’s intervention and felt “financially ruinous.” The amount was an “appreciable fraction” of what he earned. Likewise, five other participants expressed that they felt financially burdened because of paying intervention fees. The extent of the problem ranged from feeling “quite hard” financially (i.e., Cindy) to having a significant financial crisis. Jane faced possible bankruptcy and reported: We are looking for a miracle. We hope that something will work for them and then my child is okay already. It's that kind of hope. …. So, I cannot pay back my credit card bills. … I am faced with two children with condition, faced with a lot of bad debts and then a lot of stress for family also …. with so much debt. More than a hundred K. In the end, Jane overcame the financial crisis caused by oversubscribing private educational therapies for her children with ASD. Nevertheless, in the long run, parents projected a poor financial prospect for their families. Six participants verbalized their

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worry about their financial future for their retirement or for their child with ASD. For instance, Dean and Fen felt that they could not save to secure their retirement. Dean said, “Retirement? No. (laughter). No, if I get to the end of the month when I got more than a hundred dollars left on my account. It’s surprising I am walking. Uh, so financial support would be huge.” Elaine, Gina, Iris and Jane worried about the financial future of their child with ASD especially when they passed away or were ill. Thus they put aside funds for their children’s future. In summary, nine parents (except Hannah) experienced financial strains resulting from paying for intervention services and expected poor financial prospects in their future. They felt their financial resources were exhausted. In addition, some parents also experienced emotional exhaustion. Emotional strains. The emotional strains experienced by parents were from themselves and the public. Parents were emotionally burdened by their child’s challenging behaviors and lack of progress. They were also bothered by reactions from the public to their child’s behaviors and symptoms of ASD. The parents’ views on the theme emotional strains are summarized in Table 6.6. Table 6.6 Emotional Strains Parent’s initial Burdened by child’s conditions Bothered by public reactions

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Five parents (i.e., Betty, Dean, Elaine, Fen and Gina; see Table 6.6) felt that they were burdened by their child’s conditions emotionally. In their own words, individual parents felt stressed (Betty), emotionally overloaded (Dean), frustrated (Elaine),

STUDY ONE: RESULTS & DISCUSSION § 119

emotionally spent (Fen), and even suicidal and drained out (Gina) as a result of their child’s behaviors or developmental progress. Some of the emotional burden arose from managing the child’s ASD-related behaviors. For instance, Betty found it hard to cope with her child’s chanting and felt that it was driving her crazy. She mentioned: Chanting has a very agitating effect on people I realize after I have this child. The child keeps saying the same thing over and over again. It’s hard to cope you know… He will drive you crazy just you hear this kind of chanting all the time. Gina was depressed and felt suicidal when she experienced her son’s ASD symptoms and traits. She said “I was like near suicidal because he cries so much and he has so much of the traits the arm-flapping the all these, then a lot of people I spoke to I said why my son like that.” Gina was affected by her child’s developmental progress. She expressed, “In fact mentally I am affected and emotionally I am affected. When I look at my child and he still has not improved I am affected. I am affected every time.” Elaine was also greatly affected emotionally by her child’s progress. Her child’s behavioral improvement or decline was linked to her emotional well-being. Elaine said: If I were to visualize I always see myself in a spiral as in I will go up and then it will come down but what determines my movement up and down the spiral would be my son. So, if he is having a good day, I will feel good. If he is having a bad day, I will feel bad. So I only see my identity in connection with my son. Parents felt emotionally overloaded and spent as a result of managing their child’s conditions and developmental progress. Besides, they were bothered by the reactions of the public to their child’s atypical behaviors.

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Seven parents were bothered emotionally by public reactions to their child’s behaviors. Many people seemed to have little acceptance toward their child with ASD and reacted negatively. Some parents avoided going to public places because of that. Elaine and Fen had little expectation that the public would accept and receive their child behaviors. Fen could not have ‘peace of mind’ that others would help his child in public places. Elaine walked off with her child as her child bumped into others. Betty and Cindy felt tired and stressed when they had to deal with other people’s negative reactions to their child. For instance, Betty’s child was scolded by an outsider because his child misbehaved. In Cindy’s case, someone ‘told her off’ when her son was with her in a public place. She shared that, “It’s already very stressful and your child misbehaves in public. So without people you know you are strangers passing judgment and making comments. I have heard so many comments from people you know.” Both Hannah and Iris witnessed their child being rejected by peers because of his behavioral traits. Hannah felt pained when her child was not accepted by other children in the playground. She noted: Of course it’s very painful … there was this once incident at the playground and ... this group of boys because my son was just mumbling to himself. These school boys were actually talking about my son and I was just nearby then one boy was telling the other boy eh don’t talk to him, he’s crazy. These parents were emotionally strained from within and from without. As a result, as Betty expressed, they could feel quite helpless. Some of them chose to become a therapist for their child so to achieve their goals by themselves, as they had exhausted other resources (i.e., limited services and financial resources). However, many of them struggled to become one.

STUDY ONE: RESULTS & DISCUSSION § 121

Struggle to be a therapist. Some parents desired and made an effort to be a therapist but they were faced with obstacles. This theme was characterized by several dimensions, namely, little knowledge of ASD, difficulty knowing where to get information to help their child, and not knowing how to translate knowledge into practical interventions. The parents’ views on the theme struggle to be therapist are summarized in Table 6.7. Table 6.7 Struggle to Be a Therapist Parent’s initial A  Little knowledge on ASD  ‘Don’t know where to get info’  ‘Don’t know how to translate knowledge’

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Four parents (i.e., Adrian, Fen, Hannah and Iris) knew very little about ASD at the early stage of their intervention journey. Iris said: Because we don't have any of such history in our family so we don't know much about autism that time. So, that’s why we were shocked. What is autism you know? It’s so new to us. We didn't know anything about it. Consequently, some parents (i.e., Betty, Elaine and Fen) continued to struggle in making sense of the associated ASD symptoms and behaviors and felt that ASD was a mystery to them. Betty mentioned: I used mystery because he doesn't express himself well. And I guess because it’s a mystery why he behave this way maybe that’s probably a trigger but I don't know what’s the trigger you see. He doesn't tell us … so I always prefer to give him benefit of the doubt.

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Betty felt that her son’s behaviors and tantrums were mysteries for she did not understand how they came and went. His communication was “not a problem you can solve with a certain kind of formula.” Similarly, when asked, Elaine felt she was very limited in ASD knowledge and did not know what her child needed even though she wanted to help him. Fen felt that she could not do very much with him and did not know what training course to go for. Adrian, Elaine and Hannah attempted to seek information but had difficulty knowing where to go to get information on ASD, especially to know where to find a credible source of information. Adrian had this to say: The tricky part is knowing where to go when you have a question or you need to find out something even now professionally there are certain things that I’m trying to get access to but again it’s not always available. Fen did not know where the credible sources for ABA therapy were in Singapore and was confused about whether her child was receiving the right kind of intervention. Some participants used the internet and books to expand their understanding of ASD and intervention (i.e., Adrian, Betty, and Hannah) but they did not know how to translate and apply the knowledge they got. Adrian felt that the intervention strategies might not be localized and were not sure how relevant they were in the Singapore context. Betty got ‘lots of tips’ from books and experienced “information overload” but she did not know what to do with it. Hannah went online and experienced: If I type in the word autism I will be reading the same thing elsewhere in other website but you know you don’t really get pointers like how to deal in this kind of situation you know like you don't get that much.

STUDY ONE: RESULTS & DISCUSSION § 123

Some parents (i.e., Elaine and Fen) actively found ways to learn from professionals on intervention but they were left on their own with little guidance to do intervention work. Fen said: I feel that just going for the course and after that being left on my own I wouldn't be able to do the job right. … We just go for workshop once or twice or whatever and then we are left on our own, there’s no one to supervise us or correct us. These parents felt lost about how to use the knowledge and information they had and translate or generalize them into “pointers” (Hannah’s words) to be used in their real life situations with their children with ASD. Parents had little knowledge about ASD at the beginning of the intervention journey. However, the problem persisted as parents had difficulty getting credible information and sources for ASD intervention. Even when they had the relevant knowledge they struggled to use what they knew. They did not know how to translate and apply what they knew to teach their child to accomplish their goals. Strengths. The theme identified four strengths which occurred in the microsystem, mesosystem and exosystem. They are spouse as an anchor, families with cohesion, support from social network and cultivate optimism. There was one common characteristic among these strengths. Parents’ strengths or resources here were not financial or material, but mental, moral and emotional support, within themselves or from their spouses, family members or their friends/ social network. Spouse as an anchor. Four parents (mothers in particular; i.e., Betty, Elaine, Gina and Hannah; see Table 6.8) found that their husbands acted as a strong anchor for them.

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Table 6.8 Spouse as An Anchor Parent’s initial A Spouse as an anchor

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I

J

Whenever they felt weak and were affected by the child’s conditions deeply, their husbands would be there to support them. Their husbands’ traits were described as being calmer, logical, patient and supportive. These qualities helped mothers cope with their child’s conditions. For instance, Elaine found that her husband was more objective and hopeful and able to see what they could do for their child. She mentioned, “My husband is the T [thinking person] so to him it’s very logical as long as there’s something that it’s not that we are just helpless. To him as long as there’s a next step it’s not helpless.” Hannah was glad that her husband was able to cope with her son. She said: My husband I must say that I am glad he’s a very positive person you know. He took this very calmly and he’s more patient, he’s always take things at a time … he has this more patience to cope with my son. Yet spouses’ support might not be always directly related to coping with the behaviors of their child with ASD but the support could be helps with other areas of their daily life. For instance, they shared responsibilities for other household burdens. Gina’s husband helped Gina by being more independent and did little things for himself so that he could support his wife and free her to take care of their child with ASD. Gina expressed: I must say that my husband has improved. A lot of things he does himself like small little things like his button came off, he don't even dare bother me you

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know. That day he was sewing on his own. Usually in the past -straight away he would call for me. Family cohesion. Five parents (i.e., Adrian, Elaine, Fen, Hannah and Jane; see Table 6.9) reported that they drew strength from having a cohesive family. Each parent said that their families became more cohesive after the child’s ASD diagnosis. Table 6.9 Family Cohesion Parent’s initial Family cohesion

A 

B

C

D

E 

F 

G

H 

I

J 

For Fen, Hannah and Jane, the cohesion among the family members came from sharing the same goal of helping their child with ASD. For instance, Fen felt that her family became stronger because there is a common mission to help her child with ASD. She mentioned, “Although there were some negative aspects but I think it also actually made the family stronger. Yeah because there’s a common mission which is to help [child’s name].” Adrian, Elaine, and Jane found that their families units were strengthened and closer because they relied on one another for emotional support when they withstood the difficulties together. Jane said: No matter how hard so long we stick as one unit we still don't find it so hard to cope. So, so actually these 2 girls because of the condition ah it really tighten you … unite the family what you call bringing about cohesion. The cohesion and the extra support that came within the family helped strengthen these parents as they moved toward the goals together as a family unit. Support from social network. Seven parents (i.e., Adrian, Elaine, Fen, Gina, Hannah, Iris and Jane; see Table 6.10) received support from their social network

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outside of their families. The main supports were from friends who did not have family members with ASD and from other parents who did have children with ASD. Table 6.10 Support from Social Network Parent’s initial A  Support from social network

B

C

D

E 

F 

G 

H 

I 

J 

Parents were encouraged by supportive families who were willing to accept their child with ASD. For instance, Hannah felt grateful when her friends with typical children encouraged their children to play with her son. She felt grateful. She said, “I’m glad that my circle of friends they will try to get their children to mingle with my son. They try … the best thing is that they treat my son as if he is normal and everything.” Parents were also strengthened by the emotional support and information provided by other parents who were in similar situations. For instance, Fen felt supported and encouraged by another parents who also had a child with ASD. She said, It helped that there were other parents out there, so we got connected and all that and so the emotional support actually came from all these parents who actually were strangers. We met on the forum and they would just pour in encouragement and whatever. ‘Cultivate optimism.’ Six parents (i.e., Betty, Dean, Elaine, Gina, Hannah and Jane; see Table 6.11) saw the benefit of cultivating optimism. It gave them personal strength when the going got tough. Table 6.11 ‘Cultivate Optimism’ Parent’s initial A ‘Cultivate optimism’

B 

C

D 

E 

F

G 

H 

I

J 

STUDY ONE: RESULTS & DISCUSSION § 127

For instance, Betty told herself to cultivate optimism when her expectations were not met and she got frustrated because of the child’s temper tantrum. She said, “We learned to expect very little you know because when we expect a lot then we get frustrated you know so we cultivate optimism.” Gina felt that she needed a good sense of humor and to stay positive when her child did something silly. She noted that, “When he does silly things you just have to have good sense of humor. Just being positive … look at the funny side of it. You laugh it off then it’s easier to cope.” In addition, parents saw the strengths of the little things or achievements that their child did and took these opportunities to be positive about life. For instance, Hannah’s child performed on the stage in his school. She explained, “Little things even though he was just performing for a mere few minutes, to me that’s an achievement … a big achievement, it probably brings you go a long way on that … just be positive.”

Discussion The aim of the study was to explore the parental perception of their intervention journey with their child with ASD. The study filled the parent-as informant gap as there has been an absence of parents’ voices in the local research base to investigate their concerns and difficulties in coordinating and doing intervention for their child with ASD. Three main themes illustrated what parents’ goals and dreams were for their child with ASD as well as for themselves, the kind of obstacles they encountered, and the strengths they found from within and without to endure the pursuit of their goals and dreams. The current findings revealed themes that were present in the existing literature, as well as themes that have not been widely considered in previous studies. The

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perspectives and experiences across parents who participated in this study offered several valuable insights regarding intervention and supports in Singapore. Goals & dreams. Under the theme goals and dreams, parents’ goals for their children with ASD were diverse and illustrated the reality that parents pursued goals that were strongly associated with the developmental needs of their child at that point of time. The results confirmed the common shared knowledge that parents had behavioral, social and communication concerns for their children with ASD (Fong et al., 1993) and these concerns were related to the core deficits of ASD (American Psychiatric Association, 2013). Similarly, parents’ aspirations for their children to be independent and happy replicated the qualitative findings in the literature (DePape & Lindsay, 2015). But interestingly, parents’ conception of their child’s independence only encompassed two areas: holding a job and being able to provide for themselves; none of the parents mentioned a desire for their child with ASD to live on their own in future as a sign of independence. This finding coincided with Poon (2013) viewpoint. He reasoned that the number of parents who expected their adults with ASD to live with them were proportionally high among Asian populations. This can be due to the cultural heritage of parent-adult child co-residence which is common in Asia (Glick & Van Hook, 2002). The theme also reflected the current status of the field in ASD intervention which lacks a unified, systematic method to tackle the symptoms of ASD. Parents did not describe any long term plans to link their current goals with their far reaching dreams in their interviews. Parents were not informed about how they could have long term plans or move their child from achieving current goals to reaching their distant dreams such as getting independence and happiness for their child. The goals remained

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“here-and-now” without any long term strategies to guide them throughout the intervention journey. The variety of parents’ goals also clearly indicated the fact that ASD is a spectrum disorder. Individuals with ASD have same core symptoms but their symptoms are variable in severity and manifestations (American Psychiatric Association, 2013). The variability of symptoms and manifestations precludes a standardized treatment plan for all children with ASD. Added to that, there is no etiology-based intervention for autism spectrum disorder (Francis, 2005). There are a considerable number of evidencebased education interventions but with different goals and parameters for treatment. It further explained the reason why there was an absence of the long term plan or linkage between the current goals and the far reaching dreams. The findings implied the need of a more individualized approach to interventions for children with ASD and a continuous support for families with children with ASD throughout the intervention journey (Duffy & Healy, 2011). To be better parents. To be better parents was a refreshing theme which has not been given much attention in previous qualitative studies. Parents’ desire to be around their child with ASD more and bring them up the best they could, to understand their child best, and to be more patient and responsible for their child and their families could be shaped by the social environment (i.e., the exosystem and the macrosystem) they were in. Singapore, situated in Asia, together with China, Japan, South Korea, Vietnam, Taiwan, and Hong Kong, is considered to be influenced by the cultural heritage of Confucianism (Yum, 1988). One facet of Confucianism concerns how people in society ought to relate to one another. The five basic relationships in life (五 伦), i.e., ruler-subject, father-son, husband-wife, elder brother-younger brother, and

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friend-friend, constitute the basic social structure in a Confucius society. One of the Chinese classic texts, the Three Character Classic, exemplifies the expectations for parents and teachers alike, “养不教 父之过 教不严 师之惰” – “To feed without teaching is the father's fault. To teach without severity is the teacher's laziness” (Giles, 1900). The cultural expectation for a parent is to be able to teach their child. This can explain parents’ desire to be better parents in our current study. Parents’ aspiration to be better parents for their child with ASD can be further attributed to the parenting concept and goal found among the ethnic Chinese, who are different from their western counterparts. In her influential paper, Chao (1994) found that Asians, especially among the immigrant Chinese in the United States have a different concept of parenting from European Americans. Chinese parents endorse guan (管) as their parenting goal. The word has the composite meanings of care, control, look after and manage (Manser, 2003). Chao (1994) argued that this notion of guan involves the concept of “training” as a parenting goal. The training emphasizes the role of parents as teachers to manage their children with appropriate behaviors or a standard of conduct. This kind of training involves devotion and sacrifice on the part of the parent and takes place in a highly involved and supportive context which promotes parentchild closeness. This training ideal explains what parents meant to be better parents in our study. The components such as being around more to guide the child’s learning process, understanding their child best and being willing to undergo character change for their child with ASD, matched well with the training ideal described by Chao (1994). Thus, desiring to be better parents is a special theme found in our local context as parts of the parents’ intervention journey for their children with ASD.

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Struggle to be a therapist. Parents desired to be better parents, but the key obstacle to their aspiration was their struggle to be a therapist. The findings supported the themes of difficulties in encounter with professionals and parents as rational entrepreneurship which dominated in qualitative studies from the 1960s until now (Green et al., 2013; Ludlow et al., 2012). Although the findings were similar to other studies, they provided the details of the exact obstacles parents encountered in the local Singapore context. The analysis traced parents’ persistent actions of pursuing information and intervention for their child with little avail. The problem of knowing little about ASD persisted beyond the early stage of the intervention journey – parents did not know where to go for the information and how to translate and apply the knowledge they got. The results suggested that ASD services in Singapore, like in many countries, have yet to fill the service gap of providing an integrated program or a one stop service to disperse credible ASD information to parents and a platform to help them translate the intervention knowledge in a meaningful way. Therefore, parents’ struggle to be a therapist is more than a personal matter because it is an issue of how parents work with other establishments in the microsystem, for example, school or government agency, to improve the development of their children. Limited and insufficient services & financial strains. These two obstacles were clearly linked with one another, representing obstacles in both the microsystem and exosystem. Limited and insufficient services for children with ASD and their families is a phenomenon in Singapore, as well as in many parts of the world (Boe, 2014; Sun et al., 2013). This study is one of the first studies that used conversations with parents themselves to understand the extent of the concerns and difficulties they

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faced in the local context. For instance, parents waited 4 months for a pediatric appointment in a local hospital, waited from a few months to 2 years for speech therapy sessions and, waited from 6 months to 2 years for enrolment in early intervention centers. In addition, there was an absence of certain services, such as an advisory service for parents who contemplated school transition for their child with ASD. With limited supply but great demand, ASD intervention, as a commodity, has an inflated price in our market economy. The amount of money paid for intervention sessions constituted a substantial amount of family income and led many families into financial hardships and poor financial prospects (Cidav, Marcus, & Mandell, 2012). The health care and educational systems have difficulty keeping pace because of the increasing number of ASD diagnoses worldwide (Centers for Disease Control and Prevention, 2009). Zablotsky, Kalb, Freedman, Vasa, and Stuart (2014) suggested that improving health care quality and infrastructure such as reducing wait time and increasing the number of professionals with specialized training can help improve the financial strains experienced by parents of children with ASD. However, problems in infrastructure and constraints are established systems that may be hard to transform. Therefore, there is a need to innovate new and effective ways to disseminate interventions in order to circumvent the shortage of professionals and relieve the financial burdens of parents. Parents’ strengths. Parents’ strengths were characterized by the support from within (i.e., cultivate optimism) and support from without (i.e., spouse as an anchor, family cohesion, support from social network). Parents’ strengths could be a strong counterweight against emotional strains caused by their perception of child’s condition and the public reactions to their child’s behavior.

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Strength from within: cultivate optimism. One of the strengths found was parents’ trait of cultivating optimism when they encountered poor behavioral outcomes resulting from their unmet goals or expectations for the child. They adjusted their expectations or attempted to reap the benefits of seemingly undesirable situations by using a sense of humor. The deliberate cognitive shift or cultivation of optimism can combat the emotional strains caused by managing the child’s condition. Parents’ optimism was a special theme which was not considered widely in other qualitative studies, although it is related to the general theme of thinking positively about their situations (DePape & Lindsay, 2015). Optimism is closely related to hope, because both concepts relate to the positive appraisal of a coping strategy (Snyder, 2002). Optimism focuses on goal-directed cognitions which aim at distancing oneself from negative outcomes. Our parents focused on adjusting or lowering their expectations to keep themselves from feeling negatively about the child’s behavior. However, hope involves more proactive thinking and focuses on reaching future positive goal-related outcomes (Snyder, 2002). According to hope theory (Snyder, 2002), a high hope person is good at engaging plausible alternate routes and self-encouraging thought such as “I can do this” to motivate oneself to work toward specific goals in a positive way. While it is good that parents cultivate the human strength of optimism, it would be ever better to help parents instill hope in their goal pursuit because hope is also positively correlated to problem solving skills (Snyder, 2002). The cognition of hope is proactive, instead of passive, and generates more positive future outcomes for their child with ASD. Strengths from without. Parents revealed that they sought support apart from themselves, from their spouses, their families and their social support network. These

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social support systems in the mesosystem still affected their intervention on their child as well as their intervention pathways, though indirectly. These support systems within and outside of the families were widely recognized and considered as part of the family experiences in the existing literature (e.g. DePape & Lindsay, 2015; Luong, Yoder, & Canham, 2009), although the kind and the level of family or social support may vary from one family to another. When parents receive strong support from their spouse and cohesive families and their social network, they can cope with the emotional strains caused by public reactions toward their child better. Spousal support & family cohesion. Our mothers reported that their husbands offered emotional support when they were deeply affected by their child’s condition or behavior. Family members also grew in emotional bonding as they shared the same goal of helping the child with ASD. Contrary to some studies that suggested poor martial relationships and family cohesion resulting from the ASD diagnosis (Higgins, Bailey, & Pearce, 2005), the current study found spousal support and family cohesion were important resources among families raising children with ASD. According to the Circumplex Model of Marital and Family Systems (Olson, 2000), family cohesion, defined as the emotional bonding that exists between family members, has many contributing variables such as “emotional bonding, boundaries, coalitions, time, space, friends, decision-making and interests and recreation” (p. 145). Understanding the pathways of how families of children with ASD develop spousal support and family cohesion will be beneficial as these are important family resources that would strengthen them to pursue their goals and dreams. Support from social network. Parents reported that they benefited from the social support received from their circle of friends. These friends could be other families with

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typical children who offered acceptance by sharing time together or other families of children with ASD who offered useful information and emotional support. These findings supported numerous studies which reported the benefits of social support to combat stress and enhance the coping of parents with children of developmental disabilities and ASD (e.g. Banach, Iudice, Conway, & Couse, 2010; Guralnick, Hammond, Neville, & Connor, 2008). In addition, the kinds of support parents described in our study coincided with the support found in Guralnick et al. (2008) – general and parenting support among the parents of children with disabilities. General support, consisting of time availability and general emotional support, arises from four sources: imitate, friend, extend family and community. Parenting support is identified as the advice and help specific to the child or caretaking needs. Guralnick et al. (2008) found that parenting support, regardless of the sources, yielded the most unique variance to various dimensions of parents’ stress, whereby general support, had less effects on parent stress. Giving general support, especially from intimates and friends, could benefit parents to a certain degree, but it was the parenting support, the specific advice for caretaking needs to parents that can be utmost important and helpful to them (Banach et al., 2010). The theme of support from social network reinforced the needs for professionals to give parenting advice for parents of children with ASD. In addition, it pointed to the possible extension of the professional’s role in providing general support to parents, a level of support which is beyond the parenting support. It also indicated the need for professionals to be equipped with clinical skills and knowledge about counseling families in order to provide the emotional support they needed. As observed, this kind of general support given to parents is lacking among the teachers and therapists.

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Implications for Study Two and Beyond The qualitative results justified the use of the innovative use of a mobile app parent training program, gave insights for the design components in the mobile app parent training program, and provided directions beyond the current study to the wider area of providing care and intervention for the families of children with ASD. First, the findings justified the need and plausibility for using a mobile app parent training program as an intervention for parents and children with ASD. Locally, parents’ desires to be better parents in our unique Confucian culture provided a strong motivation for parents to engage in a parent training program because they want to know how to teach their child with ASD. The mobile app parent training program can also solve the obstacles and barriers that parents had mentioned in the study, for instance, their struggle to be a therapist, limited and insufficient services, and their financial strains. The mobile app can serve as a platform for parents to access intervention information. It can be designed to help parents translate the intervention knowledge into applied skills using the mobile app platform. In view of the lack of professionals and insufficient services, recruiting parents as their child’s therapists expands the intervention manpower. It can relieve parents’ financial strains as they do not need to hire professionals. The mobile app can provide a low cost therapy option as well as help resolve the long waiting time. Second, the findings inspired the concept of having a strengths-based approach to parent education and training (Dunst & Trivette, 2009a; Steiner, 2011). Parents’ selfhelp cognition of cultivating optimism in our study was observed but considered to promote to a better channel of fostering hope in them. The design of the mobile app training program can involve components that help parents focus on reaching future

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positive goal-related outcomes. As discussed, helping parents focus on engaging plausible alternative routes to solve the problem can instill hope and in turn, boast their strength to pursue their goals and dreams. In addition, the findings suggested there is a need for social support which can be realized through professional engagement with the parents. The future program can include components for the professionals to give general support (i.e., emotional support) in addition to the specific parenting support that professionals usually give. Third, the diversity of parents’ goals suggested the need for a more individualized approach to ASD intervention (Humphrey & Parkinson, 2006). The mobile app parent training program can provide an evidence-based, systematic curriculum that targets a general goal which is common to many parents of children with ASD of a particular age and stage. The specific goal for each child can be tailored and personalized according to the child’s level and needs via coaching and consultation with parents on the mobile app platform. In this way, parents use the same fundamental curriculum but have tailored personal goals for their child with ASD according to their child’s needs, their preference and perceived importance of the goal.

Limitations There are a few limitations in the current study. First, the qualitative research is a conceptual study which has little power for generalization. The minority or divergent views that were expressed in this study did not lead to further sampling and analysis. The convenience sample was overly represented by well-educated Chinese Singaporeans who belong to the higher socio-economic status in the society. Therefore, the study was limited by its capability to generalize in the context of Singapore.

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Second, the qualitative analysis was limited to the one general group of parents of children with ASD. This group had a majority of parents having children in special education settings. These parents represented only part of the views of the parents of children with ASD in Singapore. Little is known about the number of important subgroups which existed in this big group. For instance, the experience of parents with children of classical autism may possibly be different in some important ways from the experience of parents with children of Asperger’s Syndrome or high functioning autism. Therefore, caution is needed when interpreting the data and applying the implication in professional practice. There is a need for further research on other groups of parents of children with similar profiles of ASD. Third, the current study only captured parents’ experience at one point in time. It did not track how parents’ experiences changed over time as their child grows through different developmental stages. Further research can focus on investigation of parents’ experience in relation to their child’s developmental or educational stage. Further studies could also be supplemented with ethnographic observations or document (e.g. blog) analysis of parents’ experiences. Finally, the study did not investigate gender differences between the parental responses of fathers and mothers. Our study, like other studies in this area, is lacking focus on the gender difference because it is mothers who are represented predominately in most of the studies on disabilities (Green et al., 2013). Intentional studies on parent gender differences could be useful to understand how mothers and fathers respond differently to the birth of a child with ASD.

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Chapter 6 Summary This chapter presents the results and discussion of the qualitative study which investigated the parental experience of intervention journey of their child with ASD. Three themes emerged: goals and dreams, obstacles and strengths. Parents had diversified goals and far reaching dreams for their children and themselves. The current goals for children were closely related to the developmental needs of their child, namely, goals for improving communication, social and interpersonal relationships and behaviors. The dreams of parents included desiring their child to be independent, to be happy, and desiring themselves to be better parents. However, there were obstacles that affected their pursuit of goals and dreams, namely, limited and insufficient services, financial strains, emotional strains and struggle to be a therapist. Strengths were found from parents within and without to boost them in pursuing their goals and dreams, namely, cultivate optimism, spouse as an anchor, family with cohesion and support from social network. The results replicated some findings in the existing literature but also revealed new themes which were not previously known, such as parents’ desire to be better parents and their optimism. These had implications for the design and the development of the mobile app parent training program in three ways: instilling hope in parents by encouraging future positive outcomes, providing emotional support from professionals and an individualized approach to ASD intervention.

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CHAPTER SEVEN STUDY TWO: DESIGN OF THE MOBILE APP PARENT TRAINING PROGRAM

There are three key conceptual foundations that forge the current mobile application. First, the results of Study 1 justified the need and informed contextual details for such a program. Second, a compact version of the naturalistic language intervention formed the intervention content of the program. Third, the adult training framework behavioral modeling training (BMT) informed the instructional design and andragogy framework for the mobile app parent training tool. The development process of the mobile app parent training program is elucidated in Appendix 7.1.

Contribution of Study One Results The results of the Study 1 contributed to the design of the mobile app parent training program in several ways. First, a strengths-based approach was adopted for the mobile app parent training program. The program would involve components that helped parents focus on reaching future positive goal-related outcomes. The curriculum used was divided into appropriate learning portions so that it would help parents focus on reaching goal-related outcomes step-by-step. In this way, it intended to instill hope in parents by encouraging what they could do to achieve their immediate goal in a positive way. Second, the program also included a coaching component which involved giving feedback to parents on their intervention skills. In addition to this specific parenting support given to parents, the coach would be intentional in giving social emotional support to parents. That was to provide parents’ needs for social support found in the

141

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qualitative study. Social and emotional support was recommended to be given by the professionals in addition to the specific parenting support. Third, the diversity of parents’ goals in the qualitative study revealed the need for a more individualized approach to ASD intervention. In the mobile app program, a standardized curriculum would be introduced to all parents of children with ASD with similar developmental concerns, i.e., learning to request using words or gestures. However, the coach would give individual consultations to parents to discuss the appropriate individualized goals for each child. In addition, a personalized intervention plan was made according to the child’s level and family needs. For example, physical and gesture prompts were taught as a standard package in the mobile app but some parents might not need to use these skills because of the child’s level or their acceptance of these intervention skills. Adjustments were made accordingly upon the consultation with the coach.

Intervention Content of the Mobile App The program introduces naturalistic language intervention (NLI) (CharlopChristy & Carpenter, 2000; Ingersoll & Dvortcsak, 2010; Koegel, O'Dell, & Koegel, 1987) to all participating parents. The current program adopted and utilized a compact curriculum with a key goal of eliciting functional communication from young children with ASD. The selection and adoption of key naturalistic strategies for the curriculum was a thoughtful process which involved consideration of not only what was minimally essential to be effective, but also implementation feasibility and local customization (Neta et al., 2015). The current intervention originated from the behavioral approach and was shaped by some developmental elements. It adopted developmental elements by prompting intervention within the context of the child’s daily routine and

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environment, setting goals with reference to typical child development and, increasing parent’s responsiveness to the behaviors of children with ASD. It also utilized techniques based on applied behavior analysis which emphasize promoting language via direct prompting with the use of natural reinforcement embedded in children’s choice for activity or object. The goals of the program were to help children with ASD with little speech to (a) increase social engagement and initiations in play; (b) increase spontaneous speech; and (c) request an object/activity using gestures or words. When designing the program curriculum, only those NLI techniques that were considered to be absolutely necessary for achieving the goals were incorporated. Other peripheral techniques in the naturalistic language paradigm that do not directly advance to these goals were abandoned. Thus, the curriculum used in this program was short and pivotal. It included a set of procedures to teach parents how to create opportunities to elicit communication responses from the child and how to directly prompt and reinforce for language targets. There are four key parts in the curriculum: (a) follow your child’s lead; (b) imitate and animate; (c) make moments for togetherness; and (d) prompt, reward and expand. The curriculum summary is elucidated in Table 7.1. The target intervention skills were introduced in the above sequential order and were accumulative in order to accomplish the goals of the program. The written instructional content of the program is in Appendix 7.2. Table 7.1 Curriculum Summary Sections Introduction Part One: Follow your child’s lead Part Two: Imitate and animate

Contents How to set a predictable routine. How to create a play area with your child’s favorite toys. How to wait and let your child choose the activity he likes to play. How to join in your child’s play and be interested in what he does. How to imitate your child’s play, gestures and body movements, vocal sounds and words. How to get animated. How to expand your child’s language

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Part Three: Make moments for togetherness Part Four: Prompt, reward and expand Summary

How to increase your child’s social engagement by using techniques such as playful obstruction, balance turn taking and communication temptations. How to prompt your child to use words or gestures effectively. How to reward your child effectively. How to expand your child’s language further. How to apply the four parts of the techniques sequentially.

Instructional Design and Andragogy Parents were trained to use the intervention procedure within the framework of the Behavior Modeling Training (BMT) (Decker & Nathan, 1985) in the following sequential process: (a) modeling; (b) retention; (c) behavioral rehearsal and feedback; and (d) transfer of training. BMT is based on social learning theory (Bandura, 1976). It is widely used for adult skill training and is effective in producing long lasting behavioral change and skill improvement after training (Taylor et al., 2005). This andragogical sequence established the framework of the training procedure as well as the mobile app interface structure for teaching and learning. Modeling. The purpose of this learning component was twofold. First, it introduced the rationale and application of the techniques in naturalistic language intervention (NLI). Second, it modeled the NLI techniques for parents as they acquired the skills by observing how a psychologist (portrayed as a parent) demonstrated them in videos (Bandura, 1976, 1986; Decker & Nathan, 1985). The modeling display facilitated the attentional process of learning in the BMT framework. To train parents via modeling, a series of videos were produced in order to showcase how a parent could apply the NLI techniques to interact with their child with ASD. The videos were accompanied with narration explaining the concept of NLI. There were different scenarios of parent-child interactions illustrating child’s typical communication attempts and parent’s typical reactions. Upon the basis of these

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scenarios, the videos captured both parent’s and child’s behaviors closely and highlighted how the NLI techniques were applied. Parents acquired the intervention techniques by modeling and imitation. Retention. The purpose of this learning component was to help parents retain the details of modeled behaviors through two cognitive learning processes – symbolic coding and symbolic rehearsal (Decker & Nathan, 1985). Symbolic coding is defined as “the process of organizing the diverse elements of the modeled performance into symbols in order that the material can be stored, retrieved, and used efficiently to guide performance at a later date” while symbolic rehearsal is defined as “the process of mentally rehearsing the modeled performance” (Decker & Nathan, 1985, p. 31). Symbolic coding was facilitated by special features added during postproduction of the videos. Special visual supports (e.g. highlighted images, key words on video screen, fast/slow motion, zoom in/out) emphasized key behavioral features and created ‘learning moments’ for participants; they facilitated the remembering of steps in a series of modeled behaviors. In order to help parents differentiate the target intervention skills from typical parental reactions, negative modeling examples were provided in contrast to the correct intervention techniques (Decker & Nathan, 1985). The process of symbolic coding was also facilitated by online quizzes given after each instructional video. In the form of multiple choice questions, parents were tested on their cognitive retention and understanding of the key techniques of NLI. In any particular stage, parents were given unlimited access to the video and the online quiz until they obtained 100% accuracy in the quiz. Then they would be directed to the next learning component.

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The learning process of symbolic rehearsal was about “mentally rehearsing the modeled performance” (Decker & Nathan, 1985, p. 31). The researcher related this learning process with a modern and common activity in this era and time – engaging in a digital interactive game. There were strong reasons that a digital interactive game was considered to help participants rehearse the modeled behaviors mentally. A digital game that was arranged with scenarios could provide opportunities for parents to practice modeled performance with a virtual child. Mental rehearsal was plausible because parents could actively visualize or imagine themselves using strategies or make appropriate actions to engage with the virtual child in the digital game (Decker, 1980; Lowdermilk et al., 2012). This special feature presented a virtual child in a digital game with a particular communication situation that corresponded to each part of the curriculum. Parents entered the game as first persons and were presented with different options in each scene, e.g. choosing between using a physical prompt or a gesture prompt to facilitate the virtual child’s communication. In this way, they practiced the skills mentally in these digital scenarios and were asked to respond most appropriately with the given options. The distractor options were some typical parental responses dealing with common childhood communication challenges. If parents chose the right option, they proceeded to the next scene and continued the game with more options. But if they did not choose the right option, they continued to choose one option from the remaining ones until they got the right answer. Thus, parents learned to apply the right techniques using a trial-and error method. But they could take as long as they liked to complete the game until they had practiced enough to know what the right strategies were in response to the child’s particular communication need at a given point of time. Parents tried the

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techniques first on the virtual child and made moment-by-moment decisions cognitively in the interactive games before they implemented the intervention techniques on their own child in real life situations. Thus, that might minimize their future mistakes and increased their confidence in intervention. Automated data recorded the number of their unsuccessful and successful attempts with the game. When parents managed to get all the correct responses in all the scenes of the game, they gained access to the next learning component. Behavioral rehearsal & feedback. This learning component supported parent’s rehearsal of the modeled behaviors with their own child. After which, they received feedback from the trainer. Intervention sessions at home were video recorded and sent to the trainer via the app. The trainer viewed the videos and gave diagnostic feedback for areas of improvement via videoconferencing. Social reinforcements in the form of praise and affirmation were given to parents when they applied timely intervention skills (Taylor et al., 2005). In any particular stage, parents continued to use the intervention procedure with their own child until they obtained 90% accuracy with the intervention techniques consecutively for two times as indicated in the recorded sessions. Fidelity of implementation had to be established (90-100% accuracy) in each part of curriculum before parents could be approved by the trainer to proceed to the next part of the curriculum or onto their completion of the training package. Transfer of training. Parents implemented the intervention procedure after training. They continued to record their intervention sessions with their child and sent their videos to the trainer via the app for at least two weeks and strived to achieve the goal of pre-determined communication targets for the child.

148 § CHAPTER SEVEN

Chapter 7 Summary This chapter describes the design and the development of the mobile application used in this research. Results from Study 1 informed the design of the mobile app with the choice of intervention curriculum of naturalistic language intervention (NLI) and the adult training framework of behavioral modeling training (BMT). The goal of the program was to train parents of children with ASD to improve their spontaneous speech, and increase their social engagement and communication requests. The mobile app was empowered with key features (i.e., instructional video, quick check, interactive game, practice video and feedback). These app features were designed to correspond with the BMT learning sequence so that parents could acquire intervention skills in a progressive manner. The mobile app was on iOS7 and linked with the institutional server. It was enabled to collect automated and manual data input from the end users. The mobile app, named MAP4SPEECH, was prepared for examination of its efficacy and effectiveness in real life situations for several parents in a single case experimental design. The methods of the experiment are reported in the next chapter.

CHAPTER EIGHT STUDY TWO: METHODS

In Study 2, the newly developed mobile app was evaluated for its effectiveness with a multiple baseline single case design. There were five phases in this experiment: baseline phase, parent training phase, post training intervention phase, novel setting phase, and 1 month follow up phase (Figure 8.1). This chapter reports the participants, settings, materials and procedures. Specific experimental aspects, i.e., independent and dependent measures, data collection and inter-observer reliability, social validity and acceptability, and data analysis are also outlined in the current chapter.

Phase 1 Baseline

Phase 2 Parent Training

Phase 3 Post Training Intervention

Phase 4 Generalization

Phase 5 1 Month Follow Up

Figure 8.1. The five phases in Study 2.

Participants Three children with ASD and their parents participated in all phases of the study (i.e. Phase 1 to Phase 5). All participating parents were mothers. Their children were diagnosed with autism spectrum disorder following the Diagnostic and Statistical Manual of Mental Disorders: DSM-5 (American Psychiatric Association, 2013) and met the cut-off for autism on the Autism Diagnostic Observation Schedule: ADOS-2 (Lord et al., 2012). Details of participant characteristics can be found in the tables below (Table 8.1 & 8.2). Pseudonyms are used in the report of the findings.

149

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Table 8.1 Parent Participant Characteristics at Intake Assessment Parent Age Ethnicity Language Educational level used at home Dyad 1 35 Chinese English University degree Esther Dyad 2 41 Malay English & Post-secondary Ruth Malay Dyad 3 32 Indian English Post-secondary Deborah

Occupation

Homemaker Homemaker Allied Educator

Average monthly household income per member in SGD1 $2,001-$3,660 (51st – 80th percentile) $0-$850 (1st – 20th percentile) $851-$2000 (21st – 50th percentile)

Note. 1 The range of figures refers to the household income from work divided by the total number of members in the household. The percentile ranges of household income per family member extract from the statistics of Singapore collected in 2012 (Department of Statistics, 2013).

Table 8.2 Child Participant Characteristics at Intake Assessment Child ChronoAdaptive Behavior Receptive and logical Composite (Expressive) Age (Standard Score) Language (Age on Vineland1 Equivalent) on Vineland Dyad 1 4 years 4 66 (Low)2 1 year 2 months2 David months (1 years 5 months)2 Dyad 2 3 years 8 63 (Low) 1 year 1 month Aaron months (9 months) Dyad 3 2 years 6 70 (Low) 6 months Anna months (1 year 1 month)

Language Age (MacArthur CDI)3

ADOS-2 Classification

25 months

Autism

11 months

Autism

14 months

Autism

Note. 1 Sparrow, Cicchetti, and Balla (2005) 2 The scores were acquired from an earlier diagnostic assessment administered at 4 years of age. 3 Fenson et al. (2007)

Based on parents report during the intake assessment, all child participants exhibited limited verbal repertoires. David usually requested items by pulling his mother’s hand or pointing to things he wanted. Occasionally he would scream or cry when he did not get what he wanted. He labelled things using single words. His longest phrase was “I want Milo.” Aaron was nonverbal. He pulled his mother’s hand to indicate what he wanted. Anna was the youngest among the three child participants. She had a few words which she used inconsistently. She too pulled her mother’s hand to indicate what she wanted. She also cried to indicate her wants. All parents used a smartphone or a tablet daily to access a variety of apps and rated that they felt quite competent or very competent in using these digital devices. David received speech therapy sessions after receiving an ASD diagnosis but stopped all therapies before and during all phases of the study. Both Aaron and Anna

STUDY TWO: METHODS § 151

received intermittent occupational therapy (i.e., 3-4 sessions) at local hospital during the study. All participating children were not receiving any formal early intervention services or therapies during the course of parent training and intervention.

Settings All sessions during baseline, parent training, post-training intervention, and 1 month follow up (Phase 1, 2 ,3,5) were conducted at the apartment homes of the parents. During the intake assessment, parents were instructed to prepare a play area free from distraction for intervention with their child. All three parents chose their living room as their play area. For Phase 4, novel settings were the playground and the home dining area (i.e., Dyad 2: Ruth/Aaron & Dyad 3: Deborah/Anna) or the dining area of a holiday apartment in Indonesia (i.e. Dyad 1: Esther/David). Parent feedback sessions in Phase 2, 3, & 4 were conducted on skypeTM video chat interface. To ensure confidentiality and privacy, the researcher always conducted the skypeTM feedback sessions at the research office. Parent participants were free to choose where they wanted to conduct the feedback sessions. Parents chose to talk with the researcher from the comfort of their homes most of the time, but there were occasions when parents chose to conduct their session at public places or their office to suit their busy schedules.

Materials For all phases, each parent was given an iPad as a loan with the MAP4SPEECH mobile app which was developed by the researcher (see Chapter 7 for the development and the details of the mobile app). In addition, the iPad was installed with skypeTM,

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which is an application software for free video chat and voice call, for the purpose of conducting video feedback sessions during the course of the program. All iPads were subscribed with 3G mobile data plans so that participants could assess the mobile app and skypeTM anywhere in Singapore. In Phase 1, each parent was given a unique set of toys which was tailored for their use during baseline, parent training and post training intervention (Phase 1, 2 & 3). The research team had prepared an identified set of eight toys which were developmentally appropriate and stimulating for each child participant. At the time of intake assessment, these toys were used for the preference assessment on each child. Parents also chose some highly preferred toys that the child engaged with regularly at home during Phase 1 of the intervention. Table 8.3 shows the toys used for intervention for each parent-child dyad. Table 8.3 Toys Used for Each Parent-Child Dyad in Phase 1,2 & 3 Parent and Child Dyad Toys used Dyad 1 Blocks, Bubbles, Balloon, Train Set, Animal Shooting Ball, Windmill Esther - David (6 toys) Dyad 2 Blocks, Bubbles, Balloon, Playdoh, Toy Cars, Fruits and Tea Set, Ruth – Aaron Animal Shooting Ball, Windmill (8 toys) Dyad 3 Blocks, Toy Cars, Playdoh, Fruits and Tea Set, Windmill, Spinning Deborah - Anna Toy, Book, Drawing Pad and Crayons (8 toys)

In Phases 4 and 5, parents were free to choose any toy materials that were highly preferred by their child for intervention in novel settings. Table 8.4 shows the toys used for novel settings for each parent-child dyad. In order to facilitate recording in the playground setting, each parent was given a tripod with an iPad mount so that they could independently record sessions. They were also given a wireless microphone. The microphone was attached to parent’s or child’s clothes to ensure audio clarity of parent-child communication and freedom in parentchild interactions.

STUDY TWO: METHODS § 153

Table 8.4 Materials Used for Each Parent-Child Dyad in the Novel Settings (Phase 4) Parent and Child Materials used in Setting 1: Materials used in Setting 2: Dyad Playground Snack Time Dyad 1 Swing, Sand Play Molds, Skyshooting Chocolate, Gummy Bear, Mentos, Esther - David Toy, Bubbles Cheese, Coco Crunch, Baby Doll Dyad 2 Swing, Heliballoon, Bubbles, Balloon and Noodles, Orange Juice, Coco Crisp, Ruth - Aaron Pump Crackers, Water Dyad 3 Swing, Balloon and Pump, Bubbles, Chicken Nuggets, Almonds, Deborah - Anna Tricycles, See-Saw, Scooter Chocolate, Water, French fries

Experimental Design and Procedure A multiple baseline single case design, with multiple settings, was conducted across three parent-child dyads (Kazdin, 2011). Ethics approval for the study was obtained from the Institutional Review Board (IRB) at Nanyang Technological University (reference number: IR-2013-05-035). There were five phases in this experiment, namely, baseline phase, parent training phase, post training intervention phase, novel setting phase, and 1 month follow up phase. The experimental design controls for behavioral change due to factors such as developmental maturation, and changes in settings, therapists, and materials. Phase 1, 2 and 3, a concurrent design, examined the intervention effects from the use of the mobile app on both parent and child participants during the parent training phase and the post training intervention phase (maintenance). All baseline, parent training and post training intervention sessions were conducted in the same settings (selected home living area), with the same therapist (child’s parent) and materials (the set of toys selected after preference assessment and consultation with the researcher). Phase 4 and Phase 5, a non-concurrent design, examined how parents generalized skills learned in the parent training program in different contexts, with an additional change of toy materials. A non-concurrent design was utilized starting from the novel setting phase due to a parent’s request. At the completion of Phase 3, dyad 3

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(Deborah-Anna) requested a one month break to accommodate the renovation of their home. Therefore, dyad 3 took one month break from the experiment while the other two dyads continued Phase 4 and 5 as planned. Figure 8.2 shows the overview of the research design and procedure. Recruitment. The parent-child dyads were recruited via several early intervention centers and an informal parent network in Singapore. Participating early intervention centers disseminated the information of the research study to parents with young children (aged 2-6) who were on waitlist in respective early intervention centers. These invited parents and their children were not receiving any government subsidized early intervention service at the time of recruitment and were perceived to receive little help after their diagnosis. Interested parents contacted the researcher for participation. Initial assessment. These were conducted over the phone to screen parents and their children and determine their eligibility for the research program. The admission criteria included: (a) a child who had a formal/ provisional diagnosis of ASD from professionals; (b) a child who was between 2 and 6 years of age; (c) a child’s expressive language was less than 18 months on the Vineland Adaptive Behavior Scales (Sparrow et al., 2005); (d) a child was currently not receiving any early intervention service. Parents were excluded if: (a) they were from a non-English speaking background; (b) they did not have prior experience or good knowledge on using mobile phones or apps; and (c) they had prior exposure to training and intervention of applied behavior analysis (ABA). Seventeen parents inquired about the research study for possible participation. Four parents and their children fulfilled the inclusion and the exclusion criteria. Two parent-

STUDY TWO: METHODS § 155

Recruitment of Parent and Child Participants at Early Intervention Centers and Informal Parent Network

Seventeen parents inquired. Four parents fulfilled criteria and were selected.

Initial Assessment to Determine Participant’s Eligibility Intake Assessment at Parent’s Home for Data Collection and Preference Assessment for Toys

Baseline Data Collection (5-14 sessions)

One Parent dropped out. Three parents continued.

Start of Mobile App Program (Orientation of using MAP4SPEECH & SkypeTM)

Parent Training (5 to 7 weeks)

Post Training Intervention/ Maintenance (5-10 days)

Novel Setting 1: Playground (5-10 days)

Novel Setting 2: Snack Time (5-10 days)

End of Program Assessment

1 Month Follow Up (3 sessions) Figure 8.2. An overview of Study 2 research design

One ParentChild Dyad Selected for Pilot Study

156 § CHAPTER EIGHT

child dyads selected only received a provisional diagnosis of ASD. They were referred to the university training and counselling center (NIE Wellness Centre: http://www.ps.nie.edu.sg/WELLNESS.htm) for an ASD assessment by registered psychologists. These two children received a formal ASD diagnosis there. A copy of the Initial Assessment Checklist is in Appendix 8.1. Pilot study. Before the formal launch of the mobile app study, one parent-child dyad was selected to test the utility of the mobile app and the feasibility of the experimental design. The parent withdrew from participating in the pilot study before completing Stage 4 of the parent training phase of the program due to a busy work schedule. This information is not included due to an incomplete data set. Intake assessment. Selected parent-child dyads attended two intake assessment sessions at their home. The sessions consisted of collecting demographic data of the parent and child, signing of administrative/consent forms, conducting a preference assessment on each child to identify highly preferred toys for the intervention program, collecting baseline data and orientating parents to the MAP4SPEECH mobile app program. Collecting demographic data. First, written consent for participation in the study was obtained from each parent. Then parents were informed of the time schedule of the program and the expectations for the study. At the first session, they were asked to complete: (a) an Intake Assessment Form (i.e. demographic details of parent and child, and parent’s mobile usage and habit; (see Appendix 8.2 for the Intake Assessment Form); (b) the MacArthur-Bates Communicative Development Inventories: Words and Gestures/Words and Sentences (Fenson et al., 2007); and (c) Reinforcer Assessment for Individuals with Severe Disabilities (RAISD, Fisher et al., 1992, see Appendix 8.3).

STUDY TWO: METHODS § 157

Parent participants signed the loan agreement for borrowing the iPad. They were also asked to complete the Treatment Acceptability Rating Form – Revised (TARF-R; Reimers, Wacker, & Cooper, 1991; Appendix 8.4) after the orientation of the MAP4SPEECH program. Preference assessment. The preference assessment used the multiple stimulus without replacement method (DeLeon & Iwata, 1996). It was conducted with each child to identify preferred toys that could be used during the baseline, parent training and post training intervention phases of the study (i.e., Phase 1, 2 & 3). The research team prepared an identical set of eight toys which were developmentally appropriate and stimulating for each child. Parents were also asked to contribute any toys that the child regularly engaged with at home towards the preference assessment. During the preference assessment all toys were presented to the child at the same time for the first trial of item presentation. The child was asked to select an item and was later allowed to play with the selected item for 1 minute. After a brief play period with the item selected, the next trial of item presentation was initiated during which, the previously selected item was not available. Trials of presentation following the above mentioned steps continued until there were two items left. The items were then ranked from the least preferred to the highly preferred toys based on the order of toy selection. The researcher also observed and judged the child’s level of engagement with each toy and considered parent suggestion when preparing the final list of toys that would be used in the various phases of the study. See Table 8.3 for the preferred toys selected for individual child participant. Phase 1 baseline. The purpose of Phase 1 Baseline was to collect baseline behavioral data from both parent and child participants. After that, parents were oriented

158 § CHAPTER EIGHT

on the MAP4SPEECH mobile app program and set a communication goal for their child for intervention. Baseline. Baseline sessions for each parent-child dyad were chosen a priori between 5 and 14 probes (i.e., 5, 8, 11, & 14 probes accordingly). However, participants were assigned to different number of baseline sessions according to their time preferences for home appointments and availability. During baseline, parents were asked to play with their child using selected toys in a manner that they would usually interact at home. These sessions were held in the designated home play area chosen by the parent. Each session was two-minute long and was recorded via the MAP4SPEECH “Record Video” facility. The baseline period started from the 8th September 2014 and ended on 18th September 2014. The shortest baseline period lasted for 1 day with 5 sessions and the longest baseline period lasted 7 days with 14 sessions. Orientation of MAP4SPEECH program and goal setting. After collection of baseline data, parents were given a username and password to log into the mobile app. Then parents were led to rehearse the use of mobile app with the researcher (Stage 1 in the MAP4SPEECH app), including how to watch the instructional video, how to participate in the quick check and the interactive game, how to record and send a practice video, and how to use skypeTM to participate in a feedback session with the researcher. They were also asked to produce a practice video on hand and send it to the research team via the 3G network. Any issues on the use of the mobile app raised were addressed by the researcher. A user guide of the mobile app was provided to all parent participants (Appendix 8.5). Communication goals for each parent-child dyad were discussed and set during Phase 1 of the study. The communication goal for dyad 1 Esther-David was to help

STUDY TWO: METHODS § 159

David independently request using two-word phrases (e.g. want bubbles). The communication goal of dyad 2 Ruth-Aaron was to help Aaron independently request using gestures (i.e., pointing with index finger) and/or single words (e.g. bubbles). The communication goal of dyad 3 Deborah-Anna was to help Anna request independently using gestures (i.e., pointing with index finger) and/or single words (e.g. bubbles). Phase 2 parent training. The purpose of Phase 2 Parent Training was to train parents to implement the naturalistic language intervention in a progressive and sequential manner, utilizing the mobile app features (i.e., Instructional Video, Quick Check, Interactive Game, Practice Video and Feedback). During Phase 2, the effect of the mobile app training was evaluated as parent and child behaviors were consistently scored to monitor their progress. Feedback was given to parents after each submission of the practice videos. Parent training. Parents learned naturalistic language intervention (NLI) using the MAP4SPEECH mobile app program in a sequential order. There are four parts of the curriculum but they are organized into eight mobile app stages (Stage 1 to Stage 8; see Table 7.2 for a review). Each stage has the learning sequence of Instructional Video - Quick Check - Interactive Game - Practice Video - Feedback (Please refer to Chapter 6 for the MAP4SPEECH curriculum details). This learning sequence was fixed in the mobile app program. Parents could not skip any learning component until they had completed each requirement to unlock the next learning component (e.g. watched the entire Instructional Video in order to unlock the Quick Check icon; attained 100% accuracy in Quick Check in order to get access to the Interactive Game). Each parent participated and rehearsed the learning sequence in Stage 1 under the researcher’s guidance during the orientation.

160 § CHAPTER EIGHT

Parent training started at Stage 2, immediately after the orientation. In each stage, parents participated in the learning sequence independently in their self-directed pace, but were encouraged to complete watching the Instructional Video and checking their knowledge using the Quick Check and the Interactive Game within 1-2 days. There was no limit to the number of times parents could view the Instructional Video or use the Quick Check and the Interactive Game as long as they fulfilled the passing requirement to go to the next component/stage (100% usage or 100% of correct entries). Then they were asked to practice their learned intervention skills for each stage by engaging with their child in play for 15 minutes per day (Monday-Friday), out of which two to three 2minute video clips were produced each day and sent to the researcher via the 3G mobile data network (Practice Video). Under parent’s self-directed pace, the average parent training period was around 6.7 weeks (33 weekdays). On average, each parent produced 1.55 videos per weekday, with the range of 1 – 4 videos per weekday. Esther produced 52 parent training videos in 23 weekdays (4.4 weeks; M= 2.26 video/weekday). Ruth produced 43 parent training videos in 36 weekdays (7.4 weeks; M= 1.19 video/ weekday). Deborah produced 48 parent training videos in 40 weekdays (8.2 weeks; M= 1.20 video/ weekday). Once the researcher received the video clips for that day, she scored and provided feedback to parents over skypeTM for improvement and strengthening their intervention skills. The researcher followed a standard procedure in giving feedback to each parent after each submission of practice videos. The key components of a feedback session include having scored parent’s practice videos, using the ‘share screen’ function in skypeTM to watch the practice videos together with parents, affirming parent’s rightful application of skills and, highlighting and demonstrating the missing skills. The

STUDY TWO: METHODS § 161

feedback was occasionally facilitated using PowerPoint summarizing key points of the program which was viewed by parents using the ‘share screen’ function in skypeTM. In this way, parents were able to experience both formal and informal presentation of intervention knowledge and feedback. All feedback sessions over skypeTM were video recorded for scoring and maintaining the researcher’s treatment integrity on feedback administration. The set criteria for conducting each feedback session are shown in Appendix 8.6. The average feedback sessions in Phase 2 that were given across three parents were 19 sessions. Esther received 22 feedback sessions (M = 20 mins; Range = 10 – 36 mins). Ruth received 18 feedback sessions (M = 16 mins; Range = 6 – 25 mins). Deborah received 17 feedback sessions (M = 14 mins; Range = 7 – 22 mins). In order to proceed to the next stage in parent training (Stage 2 to Stage 7), each parent needed to present and attain 90-100% of intervention skills in two consecutive practice videos. Upon passing the stage, they began the learning sequence again in the next stage. The intervention skills across stages were cumulative, i.e., parents had to be fluent with skills in the previous stages and apply them with the new learned skills. At the completion of Phase 2 Parent Training, parents were required to achieve at least 90% of fidelity of implementation for the intervention procedure over two consecutive trials. Dropout. One parent-child dyad withdrew during Phase 2 Parent Training before completing Stage 3 due to some domestic issues. Their information has not been presented due to incomplete data set. Phase 3 post training intervention. The purpose of Phase 3 Post Training Intervention was to evaluate how parents maintained the learned intervention after the completion of the parent training program. The research team continued to record and

162 § CHAPTER EIGHT

monitor each child’s functional communications. Feedback was only given to parents when their intervention skills fell below 80% in practice videos. Post-training intervention (Maintenance). During the post-training intervention, parents continued to implement the intervention procedure with their child independently and recorded their sessions using the MAP4SPEECH app on the iPad. The average maintenance period was around 9 days. Esther produced 21 intervention videos. Ruth produced 20 intervention videos. Deborah produced 15 intervention videos. In terms of feedback, it was only given when parent’s intervention skills fell below 80%, or upon parent’s request to discuss particular intervention sessions, or when the researcher assessed the practice videos and decided that parent’s intervention skills needed to be fine-tuned. In this phase, the researcher also utilized the short message service (SMS) and the message facility in skypeTM to communicate with parents. The average feedback sessions in Phase 3 that were given across three parents were 2 sessions. Esther received 3 feedback sessions (M = 26 mins; Range = 18 – 38 mins). Ruth received 2 feedback sessions (M = 12 mins; Range = 10 – 14 mins). Deborah received 1 feedback session of 12 minutes. Phase 4 novel settings. The purpose of Phase 4 novel settings was to evaluate how parents generalized the learned intervention skills in other settings and with other toy materials and how child’s functional communication changed in response to these experimental manipulations. Feedback was only given to parents when their intervention skills fell below 80% in practice videos. Novel settings. Parents were invited to participate in Phase 4 upon their completion of Phase 3 Post Training Intervention (maintenance). All three parents agreed to participate in the novel setting phase immediately after Phase 3 except

STUDY TWO: METHODS § 163

Deborah. She participated in Phase 4 after taking a one month break. For feedback, it followed the protocol in Phase 3 Post Training Intervention, i.e., feedback was only given when parent’s intervention skills fell below 80% or upon parent’s or the researcher’s request. To prepare and determine novel settings for each parent, the researcher discussed with each parent over skypeTM on possible home or community settings that were suitable for generalization of intervention skills. Parents were asked to record trial sessions in possible new settings (e.g. different playgrounds nearby parent’s house). The purpose of these trial sessions was for the researcher to evaluate if parents needed more support in transferring their skills, if there were enough stimulating materials or play equipment for the child and if there were any technical issues in video recording. The researcher reviewed these video clips to assess each setting’s suitability such as the noise level, the potential play equipment, and the number of people present in these public settings that could hinder the quality of the sessions. Upon discussion over skypeTM and the agreement of the participating parent, the researcher determined the novel setting that seemed to be best for the parent and child dyad. The sites that were picked for generalization were judged to be highly interesting to their child, i.e., the playground and the setting for snack time. In order to prepare parents to apply intervention skills in the novel setting settings, the researcher discussed the following issues with each parent on skypeTM: (a) the purpose of generalization; (b) the choice of materials (i.e., toys, the play equipment or food items); (c) how to extend the skills in the novel settings; and (d) the words or phrases which could be used for prompting and expanding the child’s language in each setting.

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Novel setting 1 – playground. All parents chose a playground near their home with stimulating play equipment or highly motivating toys provided by parents. The play materials used in this setting are shown in Table 8.4. Parents continued to implement the intervention procedure with their child independently and recorded their sessions using the MAP4SPEECH app. The average intervention period on the playground was around 8 days. Esther produced 20 intervention videos. Ruth produced 17 intervention videos. Deborah produced 20 intervention videos. Novel setting 2 – snack time. The novel setting for snack time were the home dining area (i.e., for Dyad 2: Ruth/Aaron & Dyad 3: Deborah/Anna) and the dining area of a holiday apartment in Indonesia (i.e. for Dyad 1: Esther/David). The snacks used in this setting are shown in Table 8.4. For Dyad 1 Esther/David, a baby doll was involved in the play and request for food. Esther was advised to use a baby doll so that the parent, David and the baby doll could take turns trying the food. This allowed practice with turn taking skills, instead of only direct requests for food (i.e., for Dyad 2 & 3). Parents continued to implement the intervention procedure with their child independently and recorded their sessions using the MAP4SPEECH app on the iPad. The average intervention period in the snack time setting was around 7 days. Esther produced 18 intervention videos. Ruth produced 20 intervention videos. Deborah produced 15 intervention videos. The average feedback sessions for two novel settings that were given across three parents were 3.3 sessions. Esther received 4 feedback sessions (M = 16 mins; Range = 4 - 26 mins). Ruth received 4 feedback sessions (M = 15 mins; Range = 12 – 17 mins). Deborah received 2 feedback sessions (M = 10 mins; Range = 8 – 12 mins).

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Phase 5 one month follow up. The purpose of Phase 5 One Month Follow Up was to evaluate if parents maintained their intervention skills and to assess the level of each child’s functional communication after the one month break. The phase also included the end of program assessment which aimed to evaluate social validity, treatment acceptability and the mobile app usability. One-month follow up. One month after parents had completed Phase 4, they were asked to record three intervention sessions using the mobile app with their child at the same home setting and to upload these sessions via 3G mobile data network. The researcher was not present or available to give feedback in these follow up sessions. End of program assessment. At the conclusion of the mobile app program, the researcher made a visit to individual parent participant’s home to administer the end of program assessment. Parents’ acceptability and satisfaction regarding the mobile app parent training program were collected via a written questionnaire after the completion of Phase 5.The assessment included (a) the MAP4SPEECH Parent Satisfaction Questionnaire; (b) the survey on other interventions during the MAP4SPEECH program; (c) the modified version of TARF-R; (d) the modified version of System Usability Scale; and (d) the MacArthur-Bates Communicative Development Inventories: Words and Gestures/Words and Sentences (Fenson et al., 2007). A copy of the questionnaire items (a) to (d) is in Appendix 8.7. The details of these assessment forms are elucidated in the later section Social Validity, Treatment Acceptability and Usability. In addition to parent’s ratings on these questionnaires, verbal feedback on the use of the mobile app was also acquired from each parent in the form of a semi-structured interview by the research supervisor.

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Independent and Dependent Measures Study 2 is a multiple baseline single case design but it is also a study-withinstudy design because of the interactions and characteristics of the independent and dependent variables. While the mobile app parent training program was an independent variable, parent’s intervention behaviors were seen both as a product of mobile app parent training program and an independent variable to child’s functional communications. The child’s functional communications were the dependent products of both parent’s intervention behaviors and the mobile app parent training program. Figure 8.3 illustrates the relations between the independent (IV) and dependent variables (DV) in Study 2.

DV: Child's communication

DV: Parent's behaviors > IV: Parent's behaviors

IV: Mobile App Parent Training Program

Figure 8.3. An illustration of the relations between independent and dependent variables (IV &DV) in Study 2

The independent variable: Mobile app parent training program. There are five key mobile app components in this independent variable (i.e., the training components of the mobile app program). They are (a) instructional videos; (b) online

STUDY TWO: METHODS § 167

quizzes; (c) interactive game; (d) practice videos and (e) psychologist’s feedback. All parents followed a standardized procedure with the same contents and sequence of training which was pre-programmed into the mobile app. Therefore, treatment integrity across participants was assured in these learning components. Program utilization and declarative knowledge of the intervention skills were the outcome measures that are related to the first three components. The usage of these training components was captured by automated data collection through the mobile app that was sent to a designated server in the format of an excel sheet. The researcher could access these data via a password-secured website. The data included (a) participant’s use of instructional video (yes/no); (b) frequency, duration and the scores of online quizzes; and (c) frequency, duration and the scores of the games. Parent’s intervention behaviors that were captured in the practice videos were the product of the mobile app parent training program. All feedback sessions (the fifth training component), occurred on the skypeTM interface, were video recorded for the purpose of scoring and maintaining treatment integrity of the researcher’s feedback. Table 8.5 summarizes the components and the outcome measures for the mobile app parent training program. Table 8.5 Components and Outcome Measures of Independent Variable: Mobile App Parent Training Program Components of IV Outcome Measures 1 Instructional Videos Participant’s use of instructional video (yes/no) 2 Online Quizzes Frequency, duration and the scores of online quizzes 3 Interactive Game Frequency, duration and the scores of the games 4 Practice Videos Parent’s intervention behaviors 5 Psychologist’s Feedback Treatment integrity of the researcher’s feedback

Dependent/independent variables: Parent’s intervention behaviors. Parent’s intervention behaviors are both components of independent and dependent variables. For clarity in understanding the results of Study 2, parent’s fidelity of implementation will be presented in the results chapter. The ten parent behavior variables are: (a) wait

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and follow; (b) face to face; (c) join in play; (d) give comments; (e) imitate play/gestures/sounds or words; (f) animate; (g) expand language; (h) playful obstruction/balance turn-taking/ communicative temptations; (i) use verbal/gesture/physical prompt; and (j) reward/ praise. These 10 response definitions are listed in Table 8.6. Behavioral dimensions of these intervention behaviors were developed after discussion among three research team members. For instance, the research team discussed and determined the key behavioral qualities that constitute the variable ‘stay face to face with child.’ These definitions were then tested rigorously using the data in the pilot study and refined after discussion on the variations in scoring among the research team members. Each parent behavior variable was measured in discrete categorization of occurrence/nonoccurrence in each two minute practice video (i.e., yes/no). A summary score in percentage (0%-100%) indicated the extent of application of the ten parent intervention behaviors in each practice video. For example, if the parent only waited and followed her child and stayed face to face with her child but did not show other intervention behaviors, she would attain 20% for the summary score for that particular session. Parents were required to reach 90-100% in fidelity of implementation over two consecutive trials at the end of each stage in order to proceed to the next stage in parent training (Stage 2 – Stage 7). Dependent variables: Child’s functional communication. The dependent variables are child’s behaviors in functional communication (i.e., functional speech and gestures). The five child behavior variables are: (a) spontaneous utterances (mands); (b) spontaneous utterances (tacts); (c) prompted utterances (mands); (d) prompted utterances (tacts); (e) spontaneous pointing gestures; and (f) prompted pointing gestures. These 6 response definitions are listed in Table 8.6. Again, behavioral dimensions of

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STUDY TWO: METHODS § 169

Table 8.6 Parent and Child Behavior Variables and Definitions Parent Variables Definitions 1 Wait and follow the child Parent waits for the child to choose his activity as long as the child is taking time to choose his toys or activities. Parent must wait for child to start playing with his preferred toy or activity first before he joins in, especially at the beginning of the play session. 2 Stay face to face with Parent stays within child’s line of sight (from child’s perspective, parent should position in front of the child (within his visible your child angle left to right and top to bottom). Parent may need to sit at child’s level and orientates himself towards the child so that he may make eye contact with him occasionally for at least 45 seconds. 3 Join in child’s play Child initiates to play with the preferred item or activity and parent joins in and facilitates child’s play as he/she engages in these items/ activities. E.g. parent can hand play items to child or add something to his play. 4 Give comment Parent says something related to the toys child is playing (e.g. say “bubbles”), child’s actions (e.g. “up”), comments on his/her own actions (e.g. “daddy stacks”), or the situation (“We are having so much fun”)for at least once in 2 mins. It can be a sentence. 5a Imitate child’s play Parent imitates what child is doing with a toy (excluding imitating inappropriate behavior) for at least 12 seconds intermittently (Note: not the child imitating the parent). 5b Imitate child’s gestures/ Parent imitates and exaggerates child’s gestures or body movements (excluding imitating inappropriate behavior) for at least once body movements in 2 mins. 5c Imitate child’s word or Parent imitates child’s vocalizations or words (excluding imitating inappropriate behavior) at least once in 2 min. vocal sounds 6 Animate in play Parent exaggerates her gestures (e.g. point with a bigger movement), facial expressions (e.g. make smiles more obvious and bigger) or vocal quality (e.g. by increasing the volume, or the tone) to attract child’s attention, for at least 12 seconds intermittently or 4 distinctive instances. (E.g. say “uh-oh”, “oh-no”, “Wow” sound effects, audible gasps 7 Expand child’s language Parent uses the predetermined set goals and words which are suggested by the psychologist to model and expand child’s language for at least once in 2 mins. 8a Use playful obstruction While child is actively playing with a toy, parent triggers child’s communication using the following steps 1. Use the same anticipatory phrase (e.g. “1-2-3-stop”) 2. “Playfully” obstruct his play 3. Pause and provide a target word before letting child resume his play 8b Use balance turn taking While child is actively playing with a toy, parent triggers child’s communication using the following steps 1. Say “ Child name’s turn” while child is playing with the toy 2. Use an anticipatory phrase to get a turn (e.g. “Mummy’s turn) 3. Take a turn for a few seconds 4. Pause and provide a target word before returning the toy to child (e.g. it can be Johnny’s turn) 8c Use communicative Parent triggers child’s communication using the following steps temptations 1.Put child’s favorite item within his visual sight but out of his reach (out of reach) OR 1.Withhold parts of toys (e.g. fruits without knife)(Missing portion)OR 1. Hold toys up in front of her own face (control access)OR

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Use verbal prompt

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Use physical prompt Reward child Praise child

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Child uses a meaningful speech sequence consisting of one or more words spontaneously without parental prompts to request an object or an activity. Must be in context and directed to parent. Examples can be “give me”, “please”, “(name of object)”. Exclude echolalia Child uses a meaningful speech sequence consisting of one or more words spontaneously without parental prompts to label an action, an emotion, or an object. Must be in context and meaningful. Examples can be “oh-no”, “don’t”, “yes”. Exclude echolalia. Child uses a meaningful speech sequence consisting of one or more words within 5 seconds after parental prompts to request an object that will be delivered by the parent. Must be in context and directed to parent. Exclude echolalia Child uses a meaningful speech sequence consisting of one or more words within 5 seconds after parental prompts to label an action, an emotion, or an object. Must be in context and meaningful. Exclude echolalia. Child uses his/her index finger to point to a preferred object/activity spontaneously for the purpose to request the object/activity. It must be self-initiated without parental prompts. Exclude gestures such as giving an object to an adult, but grabbing a toy, taking things from others, reaching, pulling adult’s hand to a certain direction, and showing. Child uses his/her index finger to point to a preferred object/activity with parental prompts for the purpose to request the object/activity. The prompted pointing gesture must be done after one of the parental prompts (physical prompt, gesture prompt, verbal prompt [e.g. Johnny, point to bubbles]). Exclude gestures such as giving an object to an adult, but grabbing a toy, taking things from others, reaching, pulling adult’s hand to a certain direction, and showing.

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9a

1. Provide materials/opportunities child needs to help to play(Assistance) then 2. Pause, provide a target word before giving the child the favorite item/activity Parent prompts by using words or phrases for child to imitate for request. Verbal prompts can include verbal modelling (e.g. “say bubbles”), verbal delay (e.g. parent pauses, gasps and delays in saying the target word, “I want ……… bubbles”), verbal choice (e.g. “do you want blue or red?”), verbal instruction (e.g. “point!”), or verbal question (e.g. what do you want?). This is different from giving comments as parent will continue to give prompts (e.g. verbal prompt, physical prompt) to pursue child’s response to use the target word or gesture. Parent prompts by showing a gesture to child (within his line of sight) so that he will imitate for request (e.g. pointing to an object) Parent prompts by holding the child’s hand to produce a gesture for request (e.g. shape his hand to point to an object) Parent rewards child immediately with what he asks for (i.e. give the tangible item within 5 seconds). Parent praises the child immediately (within 5 seconds) after he has made a request (prompt or without prompt) with much enthusiasm and animation, like “yay!”, “well done”. Praise can be given to spontaneous requests of the child.

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these child behaviors were developed after discussion among three research team members. These definitions were tested and refined after repeated measures on the pilot study’s data between the researcher and the research assistant. Observation codes and measurement techniques were refined to a final protocol after repeated viewing and discussions among three research team members on both parent and child behaviors. Child behavior variables were measured in frequency for prompted/spontaneous utterances and pointing gestures in each of the two-minute practice videos. For instance, a child used one single word and one two-word phrase to request for an object spontaneously in a two-minute practice video. There should be two frequency counts in the child variable - spontaneous utterances (mands).

Data Collection Automated data collection. The mobile app collected automated data input from the end users. It included automated data on the usage and/or scores on instructional videos, quick check (quiz), and interactive game (See Table 7.2). These data were scored in excel sheets on a secure website and accessed only with a user name and password. Behavior data. The researcher and a research assistant manually observed and scored the parent and child behaviors in all practice videos uploaded by parents. Pre-experiment training. The researcher and a research assistant served as the observers for recording and scoring the independent and dependent variables: parent intervention behaviors and child’s functional communications. The researcher administered the main scorings and conducted feedback sessions during the mobile app parent training program. She is an educational psychologist with more than 10 years’

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experience in ASD intervention and ABA. Both team members were given training on project management issues such as confidentiality, proper data storage and reporting, ongoing event journal recording and maintenance of record accuracy. They were also trained to become familiar with the variable definitions, use of the recording system and recording medium for scoring. They independently scored the practice videos from the pilot study until they reached 85% inter-observer agreement before they started scoring all the sessions in the five phases of Study 2. Observation and recording procedure. The sessions in all phases were video recorded by parents using iPads and sent via 3G mobile data network. These sessions were retrieved from a password-secured website for scoring and analysis. A paper-andpencil system was used to record parent and child behaviors. The coding sheets for parent and child variables are in Appendix 8.8. All the scores were summarized in tables and presented in graphs for comparison and analysis. Intake and end of program assessments. The researchers met each parent at their homes and collected data from the questionnaires with a face-to-face interview.

Fidelity of Implementation Maintaining a high level of fidelity of implementation for independent variables is an essential way to manage the desired effects of intervention on program outcomes, especially for multi-level interventions such as the current ASD parent training program (Wainer & Ingersoll, 2013). There are two groups of independent variables in this study: the mobile app parent training program and parent’s intervention behaviors. Parent training (MAP4SPEECH program). During Phase 2 Parent Training, the first three mobile app features (i.e., Instructional Video, Quick Check and

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Interactive Game) were presented to all parent participants in standardized formats. Therefore, fidelity of implementation in these training components was assured. Further details on the instructional content and design can be found in Chapter 6. Also, the fidelity of implementation for these components is reported in Chapter 8, Parent’s Declarative Knowledge on Intervention Strategies. The fourth mobile feature is the Practice Video. Fidelity of parent’s intervention behaviors via the practice videos is expounded in the next section and the results of these behaviors will be presented in chapter 8. For the fifth mobile app feature (i.e., feedback), the researcher was involved in giving feedback in order to instruct parents on their missing intervention skills. A consistent level of feedback quality was assured because of the researcher’s experience and background in ASD intervention. In addition, all feedback sessions were conducted in skypeTM and were video recorded. After each feedback session, the researcher evaluated her own feedback performance by scoring it according to the criteria which were set by the research team. The set criteria for feedback sessions included the correct execution of administrative aspects (e.g. scoring of practice videos and using share screen function in skypeTM), positive reinforcement for correct intervention behaviors, highlighting or demonstrating the missing intervention skills for parents, and using a responsive interaction style to facilitate interactions with parents. There were eight criteria for scoring each feedback session and they were measured in a discrete categorization of occurrence/ nonoccurrence (Appendix 8.6). The sum of the occurrences were divided by eight and converted into percentage for each feedback session. Table 8.7 shows the average percentages of the researcher’s treatment fidelity of feedback sessions in Phases 2, 3, & 4 across the three parent participants.

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Table 8.7 Treatment Fidelity on Feedback Sessions Phase 2 Parent Training (Number of feedback sessions) Parent 1: Esther 99% (22) Parent 2: Ruth 100 % (18) Parent 3: Deborah 98% (17)

Phase 3 Post Training Intervention (Number of feedback sessions) 95% (3) 93% (2) 57% (1)

Phase 4 Novel Settings (Number of feedback sessions) 96% (4) 90% (4) 86% (2)

Parents as therapists (Parent’s intervention behaviors). Parents were the key intervention agents to their children with ASD in this program, therefore their fidelity of implementation needed to be assured. Parents learned intervention skills progressively and sequentially over the 8 stages during Phase 2 Parent Training. By instructional design, they needed to attain 90-100% of required intervention skills over two consecutive practice sessions in order to proceed to the next stage. At the completion of Phase 2 Parent Training, the same rule applied – parents were required to attain 90-100% of all required intervention behaviors over two consecutive practice sessions. In Phase 3 Post Training Intervention, the researchers set the goal for parent’s level of intervention behaviors at 80% or above. If parents did not attain 80% of intervention skills at any practice session at Phase 3, they were contacted to discuss the missing intervention skills and how to attain them. The same rule of following up with parents applied to Phase 4 Novel Settings. In Phase 5 One Month Follow Up, no feedback session was given as the purpose was to see how well parents could retain intervention skills after the one month break, in the absence of any feedback from the researcher. As the levels of parent’s intervention skills in the mobile app program are the key results in Study 2, they are reported in detail in Chapter 9: Study 2 Results. A summary table on parents’ fidelity of implementation is presented in Chapter 9 (Table 9.2, p. 211).

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Inter-Observer Agreement (IOA) The purpose of acquiring inter-observer agreement was to ensure the accuracy of the main observer’s (i.e. the researcher) scoring on all independent and dependent variables. After pre-experiment training, the research assistant served as the second observer on the following: feedback sessions (25% of all feedback sessions), parent’s intervention behaviors (33% of all practice videos) and child’s functional communications (33% of all practice videos). Feedback sessions. The inter-observer agreement on the set criteria for feedback sessions was obtained for at least 25% for all feedback sessions. The IOA feedback sessions were randomly selected from the pool of feedback sessions at the completion of Phase 4. Table 8.8 shows the summary of the IOA percentages on fidelity measures of feedback sessions. Table 8.8 Inter-Observer Agreement on Fidelity Measures of Feedback Sessions Parent 1: Esther Parent 2: Ruth Phases 2, 3 & 4 97% 88% Range (88%-100%) Range (75%-100%)

Parent 3: Deborah 85% Range (88% -100%)

Parent’s intervention behaviors. The IOA for parent’s intervention behaviors was obtained for at least 33% of all practice videos. The sessions for IOA were randomly selected for each phase. Table 8.9 summarizes the figures of inter-observer agreement for parent’s intervention behaviors. Child’s functional communications. The IOA for child’s functional communications was obtained for at least 33% of all practice videos. The sessions for IOA were randomly selected for each phase. Table 8.10 summarizes the figures of interobserver agreement for child’s functional communications.

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Table 8.9 Inter-Observer Agreement for Parent’s Intervention Behaviors Parent Participant / Parent1: Esther Parent 2: Ruth Phases Phase 1Baseline 86% 93% Range (76%-94%) Range (82%-100%) Phase 2 Parent Training 91% 90% Range (75%-100%) Range (75%-100%) Phase 3 Post Training 89% 89% Intervention Range (82%-94%) Range (82%-100%) Phase 4 Novel Setting 1: 96% 90% Playground Range (88%-100%) Range (76%-100%) Phase 4 Novel Setting 2: 90% 87% Snack Time Range (82%-100%) Range (76%-94%) Phase 5 One-month 88% 94% Follow-up

Table 8.10 Inter-Observer Agreement for Child’s Functional Communications Child Participant / Child 1: David Child 2: Aaron Phases Phase 1Baseline 100% 100% Range (100%-100%) Range (100%-100%) Phase 2 Parent Training 88% 91% Range (71%-100%) Range (71%-100%) Phase 3 Post Training 87% 88% Intervention Range (80%-100%) Range (75%-100%) Phase 4 Novel Setting 1: 86% 87% Playground Range (75%-93%) Range (71%-100%) Phase 4 Novel Setting 2: 86% 92% Snack Time Range (71%-100%) Range (86%-100%) Phase 5 One-month 86% 100% Follow-up

Parent 3: Deborah 96% Range (88%-100%) 88% Range (71%-100%) 85% Range (76%-94%) 92% Range (82%-100%) 89% Range (82%-94%) 94%

Child 3: Anna 100% Range (100%-100%) 94% Range (71%-100%) 93% Range (80%-100%) 96% Range (83%-100%) 96% Range (80%-100%) 80%

Social Validity, Treatment Acceptability and Usability A program can be empirically supported to be effective, but if it is not considered as socially appropriate or acceptable, the likelihood of utilization can be low. Social validity is a multidimensional construct that comprises at least two general constructs (i.e., social acceptability and importance) relating to the areas of treatment goals, procedures and outcomes of a program (Foster & Mash, 1999; Wolf, 1978). Treatment acceptability, an important component in social validity, is defined as the actual or potential consumers’ judgments of the treatment, especially of the social acceptability of the treatment procedures (Kazdin, 1980). Within the tradition of applied

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behavior analysis, the evaluation of treatment acceptability using questionnaires to determine the appropriateness of treatment procedures is more common than using other methods such as direct observation or interviews (Carter, 2007; Kazdin, 1980). Beyond treatment acceptability, more comprehensive aspects of social validity were considered for evaluation in the current study: (a) the importance and the acceptability of treatment goals; (b) acceptability of treatment procedures, including consumer satisfaction; and (c) social importance or clinical significance of treatment outcomes. Since the mobile app parent training program is a newly developed program that has not been used before, it is pertinent to measure these three aspects of social validity in both general and specific ways. General. To evaluate the changes in social acceptability ratings of the mobile app parent training program, parents completed the modified version of Treatment Acceptability Rating Form Revised (TARF – R; Appendix 8.4 & Appendix 8.7; Reimers et al., 1991) before they started the mobile app parent training program and at the point of completion. TARF- R is commonly used to measure treatment acceptability in clinical settings and consists of 21 items, using a Likert-type seven point scale. It has an internal consistency of 0.92, with items about understanding of treatment and clinical problem severity (Carter, 2007). Specific. The researcher devised a questionnaire with the aim to evaluate overall program satisfaction, consumer’s perception of usefulness of the specific intervention techniques, and the BMT training format. The specific aims were addressed in three sections of the MAP4SPEECH questionnaire. Part A assessed the client’s perception of the usefulness and satisfaction of the overall program. Part B evaluated the client’s perception of the usefulness in each of the NLI intervention techniques. Part C assessed

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the client’s perception of usefulness of each of the mobile app features for training purpose. All items are given a Likert- Scale from 1-7 (i.e., extremely useless to extremely useful). The copy of MAP4SPEECH: Mobile App Parent Training Program Satisfaction Questionnaire is in Appendix 8.7. Parents completed the questionnaire at the conclusion of the experimental study (i.e., Phase 5). In an effort to obtain as much information as possible regarding the social validity of the program, a brief interview was conducted with each parent at the close of the program. The interview was conducted by the researcher’s supervisor to ensure greater objectivity of response by the parents. Parents in the study had formed such strong rapport with the researcher that there was a concern they might be reluctant to make any negative comments. The interviewer reviewed and discussed parents’ responses on the TARF-F and the self-devised social validity questionnaire as well as invited them to share any additional perspectives and suggestions about the program. Participants’ verbal descriptions were recorded using pen and paper for further analysis. Mobile app usability. Mobile system evaluation is one important process to assess any mobile application as a product, for its effectiveness in carrying out its intended purpose. Nielsen (2012) evaluates usability in five attributes – learnability, efficiency, memorability, errors and satisfaction of a system. Unlike Nielsen’s model, the International Organization of Standardization (ISO) identifies three key areas in evaluating usability: the user, the goal, and the context of use. It also defines usability as the “extent to which a product can be used by specified users to achieve specified goals with effectiveness, efficiency and satisfaction in a specified context of use.” (Baber, et al., 2009 as cited in Harrison, Flood & Duce, 2013) There are overlapping elements in terms of what are included in the evaluation of usability but there is no general

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consensus on the definition parameter, given the rapid speed of mobile product development in recent years. It is easier to recognize that usability is not a one way, single dimensional quality of a product but includes multi-dimensional attributes. There are various methods of doing usability assessments, but usability testing and usability evaluation are the two main ways (usability.gov, 2012). Usability testing can occur in a laboratory or natural field settings. However, collecting ongoing laboratory or field data for mobile app usability was beyond the scope of the current study. Instead, subjective usability evaluation was administered in the form of a questionnaire at the end as part of the program evaluation. System Usability Scale (SUS) developed at Digital Equipment Corporation in 1986 (Brooke, 2013) offers a “quick and dirty” yet reliable tool for measuring usability (www.usability.gov; Bangor, Kortum & Miller, 2008). It is a 5-point Likert scale consisting of ten questions with responses ranging from ‘strongly disagree’ to ‘strongly agree. In the interest of the current study, some words in the original questionnaire were changed to improve understanding of some statements, for instance, the word ‘system’ was replaced in every question with ‘mobile app’, and the word ‘cumbersome’ was replaced by the word ‘awkward.’ Previous studies have confirmed that the change of words did not alter the results (Brooke, 2013). Subjective assessment of usability is only one aspect of evaluating user experience of a mobile app. According to Nielsen and Norman (2015), user experience (UX) is an even broader concept which encompasses components of the constructs of utility, usability, desirability and brand experience. For the current study, additional follow up questions were asked regarding technology acceptance and intention to use (Devito Dabbs et al., 2011), including questions about participants’ acceptability of the

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mobile technology to help their training experiences, their perception of satisfaction, and the most helpful and least helpful aspects of the app program. Again, the researcher’s supervisor collected verbal reports of these questions and verified the answers in SUS.

Data Analysis Automated data. The automated data including the usages and/or scores on instructional videos, quick check and interactive games were analyzed using simple descriptive statistics. They provided information on parent’s declarative knowledge on intervention strategies. Behavior data. The behavior data for parent and child behaviors in all practice videos were collected, graphed, and analyzed on a continuous basis until the experiment was completed. The data was analyzed by visual inspection of graphs to determine the functional relations between the variables, which is a standard and commonly accepted method for multiple-baseline single case designs (Kazdin, 2011). First, the baseline pattern of both parent and child data was documented. Second, the data within each phase of the study was examined (i.e., analysis of within phase pattern of the five phases in terms of level, trend, and stability). Third, the data from each phase was compared with the data in the adjacent (or a similar) phase to determine an effect. Fourth, the analyzed results from all phases of the study were integrated to determine the overall effects and patterns. The process of the analysis followed the latest What Works Clearinghouse (WWC) evidence based single-case designs (SCDs) standards (Kratochwill et al., 2013).

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In addition, outcome-measure features (i.e., the level, trend, and variability within/between phases and non-overlap data between phases) were used to facilitate the process of data analysis. The non-overlap methods are the most recognized approaches to determine the size of the differences between phases because there are no currently agreed standards for effect sizes in single case research (Gage & Lewis, 2012). Selected non-overlap methods such as percentage of non-overlapping data (PND), non-overlap of all pairs (NAP), and improvement rate difference (IRD) were utilized. These statistics were found to be reliable non-parametric indicators to determine the size of the differences between phases (Parker & Vannest, 2009; Parker, Vannest, & Brown, 2009; Parker, Vannest, & Davis, 2011). Data from intake and end of program assessment. Simple descriptive statistics was utilized for data analysis on the questionnaires of social validity, treatment acceptability and mobile app usability. Verbal feedback from parents on these questionnaires was summarized and reported.

Chapter 8 Summary This chapter elucidated the methods of Study 2. Three parents and their child with ASD participated in a multiple baseline single case experiment to evaluate the effectiveness of the mobile app parent training in both parent’s intervention behaviors and child’s functional communication. There were five phases in Study 2, i.e., baseline, parent training, post training intervention, novel settings and 1 month follow up. The researcher saw each parent-child dyad face-to-face only twice: before they started to use the mobile app parent training program at Phase 1 and at the end of Phase 5. The rest of the communications between the parents and the researcher were on skypeTM. After

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baseline (Phase 1), parents used the mobile app to learn naturalistic language intervention with a specific communication goal that was suitable to their child and applied the intervention on their child at their home settings in Phase 2 & 3 (parent training & post training intervention). They recorded their practice videos and sent them to the research team via the network. They were regularly given feedback on their intervention skills over skypeTM during Phase 2 Parent Training. Then parents applied the intervention skills in a more independent manner in Phase 3 Post Training Intervention. They transferred and generalized their intervention skills to other settings, i.e., playground and snack time setting in Phase 4. After that, the researcher followed up after a 1 month break on parent’s intervention behaviors and child’s communication. Evaluation of social validity, satisfaction and mobile app usability was administered with a package of end of program questionnaires and a short interview. The results of Study 2 are reported in the next chapter.

CHAPTER NINE STUDY TWO: RESULTS

The results are presented in four sections according to the four groups of research questions and hypotheses presented in Chapter 3. Thus, the hypotheses are answered and presented in the following order: (a) parent’s declarative knowledge on intervention strategies – analysis of the automated data of parents’ usage of the mobile app; (b) parents’ intervention behaviors – analysis of how the use of mobile app affected the parent behavior variables; (c) child’s functional communication – analysis of how parents’ behaviors affected child behavior variables; and (d) reports of social validity, mobile app usability & the use of BMT learning model. The mobile app was designed to contain four parts of the intervention curriculum in eight mobile app stages. Therefore, parent’s declarative knowledge is reported according to the mobile app stages but parent and child behavior variables are reported in accordance to the four parts of the intervention curriculum to better reflect the changes of behaviors with respect to the intervention content (See Table 7.2 for the catalog of the mobile app interface). Parent’s Declarative Knowledge on Intervention Strategies All parent participants completed the learning sequence embedded in the mobile app in each stage, i.e., instructional video – quick check– interactive game –practice video – feedback. The automated data collected from the mobile app on instructional video – quick check– interactive game were analyzed and presented in this section. There were multiple data sets collected from the two mobile components practice video – feedback. The frequencies of participation on these two mobile app components are

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presented in this section. Fidelity of implementation for feedback sessions are presented in Chapter 8: Fidelity of Implementation. Overall, all parent participants watched all instructional videos, attained 100 % on all quick check quizzes and interactive games in different numbers of attempts. Instructional Video. According to the automated data collected from the app, all parent participants watched the instructional video in each of the eight stages at least once. Quick Check. Each participant eventually obtained 100% correct in each quiz after different numbers of attempts. They attempted at least one time, and at most times five times to achieve a perfect score. Figure 9.1 shows the number of attempts and the percentage of correct responses for each quiz across the three participants. The average number of attempts to pass each quiz for each participant are as follows: Esther (M= 2.5, SD=1.6), Ruth (M=2.4, SD=1.3), Deborah (M=1.3, SD=0.7). For the quizzes which were undertaken more than once in some stages, all the scores show an increasing trend, indicating parents’ increase in correct knowledge of the intervention curriculum over the number of attempts. Figure 9.2 shows the total minutes spent on completing each quiz across the parent participants. The average time spent on passing each quiz across three participants are as follows: stage 1 (M= 2 min), stage 2 (M= 2min 27s), stage 3 (M= 21s), stage 4 (M=52s), stage 5 (M = 2 min 21s), stage 6 (M = 4 min 5s), stage 7 (M = 2 min 47s) & stage 8 (M= 46s). The average time for Stage 6 quiz (M = 4 min 5s) needs to be interpreted with caution as there was an outlier in Stage 6. Ruth spent 11 minutes and 2 seconds completing the quiz in one attempt. It was possible that she had left the

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100

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80 60 40 20

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Figure 9.1. Percentage of correct quiz responses across parent participants. Note: S1= Stage 1, and so forth. Esther

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Figure 9.2. Total minutes spent on completing each quiz across parent participants. Note. Number of questions in each quiz: S1= 4, S2 =5, S3= 2, S4=2, S5= 4, S6= 5, S7= 4, S8= 2.

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quiz on idle and did not spend the whole time period to answer the five multiple- choice questions. The differences in the amount of time spent in each quiz may also have been due to the fact that each quiz has a different number of multiple-choice questions, ranging from two to five. Nonetheless, the results show that, overall, each participant spent approximately 33s in completing each multiple-choice item. Interactive Game. There were no games in Stage 1 and Stage 8. Each game repeated the content of the earlier game and added new content. All parent participants played at least once and at most 7 times to pass a game. Figure 9.3 shows the counts for passing each game across parent participants. Most users passed a game in one trial (N = 18, Mdn = 1). Some outliers were observed. Esther played the game in Stage 2 for 6 times consecutively and passed it. Deborah played 7 times to pass the game at Stage 4. She played the game for five times consecutively. Her situation was noted by the automated system. The researcher discussed with Deborah over skypeTM and assisted her with some tips on passing the game in Stage 4. She played for another two times before she passed the game. Figure 9.4 shows the total minutes spent passing each game across parent participants. The total time spent on passing all the games for each participant was approximately between 30 and 50 minutes. Esther spent a total of 40 minutes 30 seconds to complete all interactive games. Ruth spent 49 minutes 1 second. Deborah spent 32 minutes 19 seconds. On average, parent participants spent 6 minutes 46 seconds to pass a game (Range 1:29 – 13:48).

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7 6

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Figure 9.4. Total time spent to pass each game across parent participants.

Practice Videos & Feedback. Table 9.1 shows the summary of the number of practice videos and the average time spent for each parent-child dyad. These details are elaborated in Chapter 8: Experiment Design and Procedure. As the feedback sessions were important components in the mobile app as an independent variable, the frequency statistics on these sessions can be found in Chapter 8: Fidelity of Implementation.

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Table 9.1 Number of Practice Videos Produced and the Time Spent by Each Parent Across Phases Number of Practice Days/weeks Used Average number of Videos produced videos per day Phase 2 Parent Training Parent 1- Esther 52 23 days/ 4.4 weeks 2.26 Parent 2- Ruth 43 36 days/ 7.4 weeks 1.19 Parent 3- Deborah 48 40 days/ 8.2 weeks 1.2 Phase 3 Post Training Intervention Parent 1- Esther 21 10 days/ 2 weeks 2.1 Parent 2- Ruth 20 13 days/ 2.4 weeks 1.54 Parent 3- Deborah 15 4 days/ 0.6 weeks 3.75 Phase 4 Novel Setting - Playground Parent 1- Esther 20 12 days/ 2.1weeks 1.66 Parent 2- Ruth 17 7 days/ 1.3 weeks 2.43 Parent 3- Deborah 20 8 days/ 1.9 weeks 2.5 Phase 4 Novel Setting – Snack Time Parent 1- Esther 18 8 days/ 1.4 weeks 2.25 Parent 2- Ruth 20 9 days/ 1.7 weeks 2.22 Parent 3- Deborah 15 7 days/ 1.3 weeks 2.14 Phase 5 One Month Follow Up Parent 1- Esther 3 2 days 1.5 Parent 2- Ruth 3 1 day 3 Parent 3- Deborah 3 2 days 1.5

Parents’ Intervention Skills The results of the visual analysis for parents’ intervention skills are presented in this sequence: (a) analysis of the within- and across phase pattern for each parent participant; (b) integrating the analyses from all phases to determine effects; and (c) summary of the overall analysis. Figure 8.5 presents the percentages of intervention skills attained across three parent participants in the multiple baseline single case design. Within- and Across-Phase Patterns. The results are presented first for Esther (top panel), followed by Ruth (middle panel), and then Deborah (bottom panel), according to Figure 8.5. The report of the results in this section was supported by the detailed statistical analyses on (a) the levels within phases; (b) the trend direction and stability within phases; (c) changes in level or trend across phases; and (d) data nonoverlap between phases (i.e., percentage of nonoverlapping data [PND], nonoverlap of all pairs [NAP], and improvement rate differences [IRD]). The definitions and

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Figure 9.5. Percentages of intervention skills attained across three parents from Phase 1 to Phase 5. Note. PT1= Part 1: Follow Your Child’s Lead; PT2 = Part 2: Imitate and Animate; PT3= Part 3: Make Moments for Togetherness; PT4= Part 4: Prompt, Reward & Expand; // = 1 month break.

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calculation of the statistics for within and between phase patterns are in Appendix 9.1.These statistics of within- and between phase analyses of parent intervention behaviors for each parent are recorded in Appendix 9.2. Phase 1 Baseline. Across the three participants, intervention skill levels were at moderately low levels (Range of means 35%-38.2%). Esther’s intervention skills were variable and at a low level (M = 35%, Mdn = 30%, SD= 10.7%, Range 20%-50%). Ruth’s baseline data showed slight variability at the beginning and ended with a stable pattern across 11 sessions (M = 38.2%, Mdn = 40%, SD= 7.5%, Range 30%-50%). Deborah’s baseline data showed a stable baseline with little variability across 14 sessions (M = 37.1%, Mdn = 40%, SD= 4.7%, Range 30%-40%). All participants demonstrated consistent presentation of some intervention skills across baseline sessions. Some of these intervention skills were techniques from developmental approaches and some were ‘common-sense’ skills. They showed consistent skills like ‘face to face’ (Esther: 88%; Ruth: 82%; Deborah: 100%), ‘give comments’ (Esther: 100%; Ruth: 100%; Deborah: 100%), and ‘expand language’ (Esther: 100%; Ruth: 91%; Deborah 100%) across their baseline sessions. However, all participants consistently lacked intervention skills which are derived from naturalistic/ behavioral approaches. They lacked skills in the following areas, such as ‘animation,’ ‘playful obstruction/ balance turn-taking/ communication temptations,’ ‘verbal/gesture/physical prompts,’ and ‘reward/praise.’ This information revealed that parents had been practicing some basic intervention skills when interacting with their child but had yet to acquire core intervention skills in naturalistic language intervention.

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Phase 2 Parent Training. PT1. In parent training part 1, parents were directed to learn four intervention skills, i.e., wait and follow their child, stay face to face with their child, join in child’s play and give comments appropriately. By the end of PT1, parents were expected to demonstrate all four skills over two consecutive sessions. Across the three participants, they showed similar patterns in the first part of parent training. Each parent participant used a few sessions to acquire these intervention skills (Esther: 5 sessions; Ruth: 2 sessions; Deborah: 4 sessions). Esther’s skills were stable with a slightly upward trend (M = 38%, Mdn = 40%, SD= 4.5%, Range 30%40%). Ruth’s data remained stable without any change from baseline (M = 40%, Mdn = 40%, SD= 0%, Range 40%-40%). Deborah’s skills also remained stable with little change from baseline (M = 47.5%, Mdn = 40%, SD= 5%, Range 40%-50%). There was a slight increase of skills in PT1 from baseline across three participants (Esther: +3% ; Ruth: +1.8%; Deborah: +10.4% of mean change). PT1 did not have an immediate effect on participants’ intervention skills. This was anticipated as parents were already observed to have some basic play skills with their child during baseline without knowing that these were useful intervention skills (e.g. staying face to face with child; giving comments). The program intended to introduce more skills progressively. PT2. In parent training part 2, parents learned three extra skills i.e., imitate child’s play, gestures or words, get animated and expand child’s language. For the technique imitate child’s play, gestures, or words, participants were required to show their imitations in each of these areas (i.e., child’s play, gestures, or words) at least once in PT2. Intervention skills were cumulative. Participants were expected to practice skills

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of the earlier phases. Therefore, by the end of PT2, parents were expected to demonstrate all seven skills over two consecutive sessions. There was a substantial increase in skills compared to PT1 (Esther: +19.5%; Ruth: +10%; Deborah: +11.8% of mean change). Across all parent participants, they exhibited skill increase to 70% at the conclusion of PT2. Esther’s data showed a stable upward trend indicating a substantial increase in skills of at least 20% from PT1 (M = 57.5%, Mdn = 60%, SD= 10.4%, Range 40%-70%). Ruth’s data also indicated an upward stable trend in intervention skills, rising from 40% to 55% (M = 55%, Mdn = 55%, SD= 10.8%, Range 40%-70%). Deborah’s data showed a variable substantial upward trend (M = 59.3%, Mdn = 60%, SD= 10.3%, Range 40%-70%). There was an increase of 11.8% on average from PT1. PT3. In parent training part 3, parents learned one level of skill with various techniques with the aim of triggering child’s communication attempts, Techniques like playful obstruction, balance turn-taking and communicative temptations were introduced. Again, participants were required to show respective techniques at least once in PT3. Therefore, parents were expected to use more sessions to show the respective techniques. In particular, these techniques required more efforts from parents as they needed to present a series of intervention behaviors sequentially (see Table 7.4). By the end of PT3, parents were expected to demonstrate all eight accumulative skills over two consecutive sessions. Each participant showed slightly different patterns in their skill acquisition, obtaining the skills over with different number of sessions (Esther: 22 sessions; Ruth: 11 sessions; Deborah: 14 sessions). Esther spent more sessions than other participants in completing PT3. Her data showed a variable upward trend (M = 69.1%, Mdn = 70%,

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SD= 11.5%, Range 50%-90%). As anticipated, her PT3 data showed a slight increase in skills of at least 10% (median change). The variability in the data explained her struggle in acquiring these skills as this was also observed in her practice videos and feedback sessions. Ruth’s data showed a steady and substantial upward trend (M = 78.2%, Mdn = 60%, SD= 11.3%, Range 50%-80%). There was an increase in 23.2% in mean and 5% in median from PT2. Deborah’s data showed a stable but slightly downward trend (M = 73.6%, Mdn = 80%, SD= 7.5%, Range 60%-80%). There were two sessions with scores falling below where PT3 had started. But overall Deborah’s PT3 data increased by 1020% from PT2. PT4. In parent training part 4, parents learned two levels of skills, i.e., prompts (i.e., verbal, gesture, or physical prompt), and rewards (i.e. giving reward or praise). Participants were expected to use verbal, gesture or physical prompt at least once on their child in PT4. Thereafter, they were advised to concentrate on using the kind of prompt (verbal/gesture) which was most appropriate to their child. Participants would be given credit when they either gave a reward or praise their child. However, they were always encouraged to give both reward and praise in response to each child’s prompted/spontaneous request. By the end of PT4, parents were expected to attain 90100% of the ten accumulative skills over two consecutive sessions. Parents used 15-20 sessions to concentrate the ten intervention skills in PT4 (Esther: 17 sessions; Ruth: 20 sessions; Deborah: 15 sessions). Esther’s data showed a highly variable upward trend (M = 84.7%, Mdn = 90%, SD= 14.6%, Range 60%-100%). Her PT4 data showed a slight increase in skills of at least 15%. Ruth’s scores in PT4 showed a stable upward trend (M = 85.5%, Mdn = 90%, SD= 9.5%, Range 70%-100%). There was an increase in 7.3% in mean and 30% in median from PT3. Deborah’s data

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also showed a stable and substantial upward trend (M = 82%, Mdn = 80%, SD= 9.4%, Range 70%-100%). On average, she showed a little increase in skills in PT4 from PT3 (mean change = 8.4%). Overall parent training. Across the three participants, the range of scores within parent training rose from 40% to 100%, showing that they had learned to use six or seven new intervention skills during the course of parent training. Increment of skills at the initial introduction of each part of parent training was not immediate but gradual. This observation of gradual increment of skills (rather than immediate) shows that all three participants needed to learn the skills in multiple trials with the feedback support from the researcher in order to apply the skills rightfully in their settings. They needed to practice the intervention until they were more fluent in skill application. Esther had 52 parent training sessions with a highly variable upward trend (M = 67.9%, Mdn = 70%, SD= 18.3%, Range 30%-100%). Ruth’s parent training lasted for 43 sessions with a highly variable upward trend (M = 71.2%, Mdn = 70%, SD= 17.6%, Range 40%-100%). Deborah’s parent training contained 48 sessions with a stable substantial upward trend (M = 69%, Mdn = 70%, SD= 15.9%, Range 30%-100%). Compared to baseline, all participants had a substantial increase in intervention skills in Phase 2. The PND for three participants showed substantial data non-overlap between parent training phase and baseline (Esther: 75%; Ruth: 79%; Deborah: 90%) and indicated that parent training was effective (Scruggs & Mastropieri, 1998). NAP for the three participants were high and the p-values were all less than .05 (Esther: 94%; Ruth: 95%; Deborah: 92%, P