The Phenomena of Decreasing Distress in Parents

The Phenomena of Decreasing Distress in Parents whose Children had Cancer

By

Marcia Baker PhD

ii Abstract Cancer treatment for children is a challenging medical procedure that impacts children and their parents. The emotional distress of parents during the cancer treatment of their child is an important consideration that could impact the treatment of the child as well as the outcome. Explanations about how reframing of beliefs decreases parental distress has been limited to summative assessment processes using multiple interventions rather than formative assessment. The problem occurs when examining the lived experiences of parents after their beliefs have been reframed, we do not know what lived experiences of parents are and are unable to develop emerging themes for further study. The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress. Participants included eight parents whose children are completed with treatment or within one month of completion. Findings of the study revealed that all participants felt the worksheet exercise of reframing beliefs was helpful and how their feelings of adversity went from negative to positive. Additional findings included information on the adverse events and how distress was experienced. Afraid of death was a theme that was broken out into two sub-themes of afraid for child and school environment. Afraid of losing their own child was a theme that was a lived experience response from all participants. The theme had to be strong was the response to the question about how the participants experienced distress, three sub-themes emerged. Had to be strong for child, had to be strong for self and another parent and communication with

iii the staff for direction were identified with importance. The last sub-theme of communication with staff for direction was a lived response that is important for healthcare professionals to be aware of. The findings of this study identified emerging themes from the lived experiences of parents whose children had been in cancer treatment and or were in the last month of completion of treatment. Future research should involve an additional understanding of how a reframing beliefs exercise could affect and benefit parents whose children are in cancer treatment.

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Table of Contents Chapter 1: Introduction ....................................................................................................... 1 Background ................................................................................................................... 1 Statement of the Problem .............................................................................................. 2 Purpose of the Study ..................................................................................................... 3 Theoretical Framework ................................................................................................. 4 Research Questions ....................................................................................................... 6 Nature of the Study ....................................................................................................... 7 Significance of the Study ............................................................................................ 10 Definition of Key Terms ............................................................................................. 10 Summary ..................................................................................................................... 11 Chapter 2: Literature Review ............................................................................................ 13 Documentation ............................................................................................................ 13 Historical Need ........................................................................................................... 13 Current Research on the Impact of Families’ During Pediatric Cancer Treatment .... 15 Timing of Distress....................................................................................................... 25 Mechanisms and Theoretical Framework with Family-Based Interventions ............. 32 Summative Versus Formative Assessment ................................................................. 41 Summary ..................................................................................................................... 46 Chapter 3: Research Method ............................................................................................. 53 Research Method and Design ..................................................................................... 56 Population ................................................................................................................... 57 Sample......................................................................................................................... 58 Materials/Instruments ................................................................................................. 58 Data Collection, Processing, and Analysis ................................................................. 59 Assumptions ................................................................................................................ 59 Limitations .................................................................................................................. 60 Delimitations ............................................................................................................... 60 Ethical Assurances ...................................................................................................... 61 Summary ..................................................................................................................... 62 Chapter 4: Findings ........................................................................................................... 65 Results ......................................................................................................................... 66 Evaluation of Findings ................................................................................................ 77 Summary ..................................................................................................................... 82

v Chapter 5: Implications, Recommendations, and Conclusions ........................................ 84 Implications................................................................................................................. 86 Recommendations ....................................................................................................... 91 Conclusions ................................................................................................................. 93 References ......................................................................................................................... 96 Appendices ...................................................................................................................... 106 Appendix A: Participant Exercise ................................................................................... 107 Appendix B: Informed Consent Form ............................................................................ 109 Appendix C: Permissions to Use Figures ....................................................................... 111 Appendix D: Interview Protocol ..................................................................................... 115 Appendix E: Script for Physician ................................................................................... 116

vi List of Tables

Table 1 Research Questions, Themes, and Sub-themes ................................................. 67

vii List of Figures Figure 1: Model of medical traumatic stress..................................................................... 26 Figure 2: Meta-analysis of treatment outcome and moderators........................................ 35 Figure 3: Model by Kazak and Noll (2015). ..................................................................... 36 Figure 4: Essential approaches to formative program evaluation. .................................... 44 Figure 5: Sub-themes of theme one, by participant. ......................................................... 69 Figure 6: Sub-themes of themes two and three, by participant......................................... 72 Figure 7. Sub-themes of theme four, by participant ......................................................... 75 Figure 8. Strength of themes ............................................................................................ 77 Figure 9. Lived experiences cloud .................................................................................... 83

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Chapter 1: Introduction Parents of children with chronic or acute disorders experience distress greater than parents of healthy children (Cousino & Hazen, 2013). Cousino and Hazen (2013) concluded that parents’ distress was associated with responsibility for their actions to assist in the medical treatment. Cancer treatment for children is a challenging medical procedure that impacts the children and the parents. Williams, McCarthy, Eyles and Drew (2013) stated there is limited information on the parenting impact with children in cancer treatment. Parents are often the caregivers of their children during cancer treatment protocols; these treatments last for months and sometimes years. Parents with children receiving cancer treatment are at risk for developing stress-related disorders, which could ultimately affect treatment reactions of their children (Hildebrand, Clawson, Alderfer, & Marsac, 2011). Pediatric Cancer is different than other illnesses; the longterm treatment regimen and the uncertainty of the outcomes, including death, make distress greater for families than those families who experience other illnesses with their children (Landolt, Ystrom, Sennhauser, Gnehm, & Vollrath, 2011). Background Researchers (Meyler, Guerin, Kiernan, & Breatnach, 2010; Peek & Melynk, 2010) examined psychosocial family interventions for behavioral issues as well as the effects of these interventions that were implemented between 1980 and 2008. These researchers agree that understanding the routes by which interventions effect and reduce distress of parents is an important focus although those routes have not been researched (Meyler et al. 2010). Understanding how interventions effect change and how they work to produce change is the next level of research needed to understand how to develop

2 interventions that maximize the reduction of parental distress (Shields, Finley, Chawla, & Meadors, 2012). If investigation of change is the next level of research for interventions, an assessment of change in that response is necessary (Shields, Finley, Chawla, & Meadors, 2012). Summative assessment is the standard method used when assessing intervention outcomes; formative assessment is used to develop and improve the current techniques of an intervention (Geonnotti, Peikes, Wang, & Smith, 2013). This study proposes the use of formative assessment to understand the pathways that effect and reduce the distress of parents and perhaps improve the techniques used in interventions. Statement of the Problem Cancer treatment for children is a medical procedure that influences physical and emotional responses of the children and their parents (Landolt et al., 2011). Available interventions designed to decrease parental distress have been outcome-focused (Kleim, et al., 2013). Researchers (Kazak et al., 1999; Kazak, 2005) focused on family intervention studies using cognitive behavioral techniques with a reframing of beliefs tool and other interventions: they measured the summative outcomes of the interventions at completion (Warner, et al., 2011). Reframing beliefs is classified as cognitive restructuring method (Dobson, 2009). The reframing of (core) beliefs is the approach that begins the process of cognitive restructuring (Beck, 2011). The problem is that we do not know what lived experiences of parents are when their beliefs are reframed, and therefore are

3 unable to develop emerging themes for further study (Shields, Chawla & Meadors, 2012). Up to now summative evaluations of interventions have not been grouped by the type of intervention (Kleim et al., 2013). Because of summative evaluations not being grouped by intervention, there is no information about how specific interventions, such as reframing beliefs, may result in the reduction of parental distress (Shields, Chawla & Meadors, 2012). If information about how specific interventions, such as reframing beliefs reduce distress then reducing parental distress with specific interventions will continue to be a gap in literature. Purpose of the Study The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress (Reeder, 2010). Participants included eight volunteer parents whose children are completed with cancer treatment or close to completion. Semi- structured interviews were conducted and recorded by the researcher. The participants’ responses were used to explore the phenomenon of their lived experience while using the reframing beliefs tool (Englander, 2012). The semi-structured interviews took place at the University of Texas Medical Branch Pediatric Cancer Center, Dickinson, Texas. Recordings were transcribed, and qualitative analysis software was used to evaluate participant responses to explore the phenomenon of their lived experience and identify emerging themes concerning the route by which beliefs change and distress is reduced (Englander, 2012).

4 Theoretical Framework The area of focus for this study was cognitive behavioral theory, specifically the technique of reframing of beliefs. Cognitive behavioral theory is an extension of behaviorism that started in 1913 as a way of considering human behavior (McLeod, 2014). Ivan Pavlov was the first to experiment with animals and discovered behaviors could be changed with specific methods being implemented (McLeod, 2014). In 1920, Watson and Rayner experimented with a small child to show that stimuli could also change behaviors in humans (McLeod, 2014). Watson discussed behaviorism as a physical response not an unconscious activity (Hupp, Reitman and Jewell, 2008). Classical conditioning theory developed by Pavlov was further discussed by Watson as an important connection to behavior (Hupp, Reitman and Jewell, 2008). B. F. Skinner described behavioral theory with operant conditioning (Skinner, 1938). Skinner (1938) provided indepth information on behavior and how stimulus could change behaviors to occur and become extinct. Skinner’s work was an important contribution to the study of behaviorism (Hupp, Reitman and Jewell, 2008). Ellis (1962) developed rational emotive behavior therapy to help change behaviors and thoughts. Rational emotive behavior therapy, cognitive behavioral modification, and cognitive therapy is described as the beginning of cognitive behavior theory approaches (Beck, 2011; Ellis, 1962). The three primary theoretical perspectives explaining cognitive behavioral theory are: 1) how cognition affects behavior, 2) how cognitive activity can be monitored and altered, and 3) how the desired behavior change can be accomplished through cognitive activity (Dobson, 2009).

5 That cognition affects behavior has been demonstrated by researchers and we now know that how a person thinks about an event can change the behavior (Dobson, 2009). Researchers continue to work on specific changes that can alter a cognitive process and ultimately change behaviors (Dobson, 2009). That cognitive activity can be monitored and altered implies that when we have the ability to understand our thinking we can change our thinking (Dobson, 2009). Researchers continue to work on understanding cognitive activity and interventions to alter thinking (Dobson, 2009). Desired behavior change can be accomplished through cognitive activity. Desired behavior change can happen because of the change in thinking. Cognitive behavioral theorists understand that there are several ways to change behavior and change in thinking is one of those ways (Dobson, 2009). Cognitive behavioral theory explains the reframing of beliefs for those under extreme levels of stress (Kleim et al. 2012). The reframing of beliefs is classified as a cognitive restructuring method that changes emotion and behaviors (Dobson, 2009). The reframing of (core) beliefs begins the process of cognitive restructuring which changes emotion and behavior (Beck, 2011; Dobson, 2009). The reframing of beliefs is utilized for many types of disorders to improve the emotional status and behaviors of patients (Hofmann et al., 2012). A study using reframing beliefs with adolescents experiencing anxiety attempted to identify the symptom change that occurred with each session utilizing growth modeling and shape of change (Chu et al. 2013). The researchers were able to determine change with each session although the conclusions of the study found that the study of change was much more complex and that a greater sample size and youth factors need to be included to have meaningful outcomes that indicate specific session changes. A study of the

6 reframing of beliefs for adults with PTSD was an active therapeutic mechanism which occurred as the sessions were happening not after the sessions had been delivered (Kleim et al., 2013). Clark (2013) describes reframing of beliefs and cognitive restructuring as a method that helps to change beliefs and thinking and has research studies conducted that have demonstrated effectiveness. There are still unanswered questions; researchers need to conduct additional studies to determine the efficacy and how much change is made to effect outcome (Clark, 2013). This study will investigate the manner in which cognitive-behavioral theory explains changes in beliefs and common themes that could lead to beneficial outcomes such as understanding if and how reframing beliefs provide specific relief of distress. The significance of this study will provide the lived experiences of parents who have experienced reframing beliefs. The results of this research may determine emerging themes for further study (Shields, Chawla, & Meadors, 2012). Research Questions The research questions for this qualitative interpretive phenomenological study helped the researcher to discover emergent themes from the participant responses. Emergent themes may help future researchers to improve the understanding of the lived experience using reframing beliefs in reducing the distress of parents whose children are receiving cancer treatment (Reeder, 2010). Q1: What are the lived experiences of parents of pediatric cancer patients when using the reframing beliefs exercise (Appendix A) from Kazak study (Kazak, 2005)?

7 Q2: What were the parents’ adverse events? Q3: How did they experience distress? Nature of the Study The research study design is qualitative methodology utilizing interpretive phenomenological inquiry to discover emergent themes through the participants’ stated lived experiences and their perceptions of phenomena of participants using a reframing beliefs exercise developed by Kazak (2005; Reeder, 2010). Qualitative research is utilized to seek the subjective phenomena of a lived experience (Georgi, 2009). A modified five-step process has been developed by Georgi (2009) focusing on (1) understanding of phenomenological attitude, (2) comprehending fully all the documentation of the participants’ descriptions, (3) developing themes, (4) utilizing the statement of participants to create meaningful psychological documentation describing the lived phenomena, and (5) integrating the lived experiences of the participants into a psychological framework. Credibility, dependability, transferability, and trustworthiness are all concerns within qualitative research. Researchers, Ali, and Yusof (2011) reviewed multiple qualitative research studies; they stated that credibility in qualitative research refers to the efforts that are taken to test an emerging theory (Ali, & Yusof, 2011). Dependability refers to the method used to ensure that a study could be replicated with similar results. If an instrument or research design could be used for other populations than the original one, the study is said to have transferability. Trustworthiness refers to the adherence of researcher to a method of study and an unbiased approach (Ali, & Yusof, 2011). Every effort was made in this proposed study to maintain credibility, dependability, transferability, and trustworthiness.

8 Participants included eight parents whose children completed or are close to completion of cancer treatment. The significance of the data from the participants was the primary focus; the sample size is second, the participant information is the most important information (Englander, 2012). Semi-structured interviews were conducted with the participants and recorded by the researcher. Data collected was used to discover the phenomenon of the stated lived experience. The parents’ responses were synthesized through the textual display of the data and the structural descriptions of emergent themes. Saturation refers to the number of similar responses of the participants and when enough similar data has been obtained through the interview process. Emphasis is placed on the researcher to determine when data has been obtained to acquire transparency is a mark of quality in qualitative methodology (O’Reilly & Parker, 2013). A reframing beliefs exercise (Appendix A) was developed for use by health professionals (Kazak, 2005). Parents were provided the tool that was adapted from the Surviving Cancer Competently-Newly Diagnosed manual (Kazak, 2005). Immediately following the participant reading of the exercise, the interview questions were utilized to obtain responses of their lived experience of the phenomena of experiencing the reframing beliefs tool. This researcher adhered to several ethical concerns, beneficence, nonmaleficence, fidelity, responsibility, integrity, justice, respect for people’s rights and dignity. Beneficence and nonmaleficence are designed to take the concept of do no harm and make sure the clients are receiving services always with this in mind. The researcher worked with the data collection site where participants were interviewed and had the nurse available if participants need additional assistance; participants were given one

9 evidenced-based exercise to review if clients decide to not participate they can do so at any time during the interview. Fidelity and responsibility commit the psychologist to maintain standards for his or her clients, research, community, and society. The researcher kept the commitment to the APA standards, the client, the research project, in which the community was served, and to society. Integrity is defined according to the APA standards (APA, 2014) as the psychologist will not cheat, steal or act in a fraudulent manner. This principle was adhered to within the development and implementation of this writers’ study. The research was monitored, and data was handled in a consistent manner to provide validity to the outcomes. Respect for People's Rights and Dignity refers to protecting the client and by considering their human rights, to protecting their right to confidentiality, and to taking into consideration their circumstances such as socio-economic status, their culture, and environment. The researcher used clients as participants and protected their rights and dignity by adhering to confidentiality and considering their socioeconomic status, culture, and the environment. The means to address ethical concerns in this research study was accurate. Human subjects were utilized in this study (Cozby, 2012). Confidentiality and consent forms (Appendix B) were developed. Participants were provided with informed consent which they reviewed with this researcher prior to signing and they had the right to not answer questions or to end participation at any time without penalty. The researcher ensured that participants understood that their participation or decision not to participate will not affect any treatments or services they or their children receive, and they will be provided with debriefing at the end of the study. The researcher applied to the IRB of Northcentral University the researcher’s dissertation committee for approval before the research is

10 implemented. The site where this study was implemented did not require an IRB only the IRB of the approving institution; per site discussions and written consent. Significance of the Study This study provided the lived experiences of parents of pediatric cancer patients who have experienced reframing beliefs. The results of this research may determine emerging themes for further study (Shields, Chawla, & Meadors, 2012). Parents of children receiving cancer treatment are the principal caretakers of their children. If parents are distressed without appropriate interventions, then their symptoms can worsen they cannot be the support that the child needs during their treatment. Geest, et al. (2014) stated that parents who are under distress could increase their child’s distress and treatment fears. Harper et al. (2013) state that parents who do not have support systems during their child’s treatment could develop a debilitating diagnosis of PTSD. The significance of this study is that exploring the lived experiences of parents when using the reframing beliefs tool enhances understanding of the processes of distress reduction. Additional research efforts could be spent on developing interventions and expanding on theories utilizing reframing beliefs for effective intervention strategies to reduce parental distress, which would reduce long term mental health issues such as PTSD (Harper et al., 2013). Definition of Key Terms Definitions have been provided to assist the reader in understanding various concepts mentioned in this study. Anxiety. Anxiety refers to emotions causing feelings of stress or troubled ideas. These feelings can, in turn, cause additional problems if left untreated (Moore, 2014).

11 Cognitive Behavioral Therapy. Cognitive Behavioral Therapy is a therapeutic approach combining the cognitive emphasis on the role of thoughts and attitudes influencing motivations and response with the behavioral emphasis on changing performance (Norberg, Poder, & Essen, 2012). Distress. Distress refers to sadness, nervousness or hopelessness (Rodriquez et al., 2012). Formative Assessment. The process of measuring the smaller actions that occur during an intervention (Testa and White, 2013). Summative Assessment. The process of measuring the larger outcomes of an intervention (Testa and White, 2013). Reframing of Beliefs. Reframing beliefs are reducing intrusive thoughts by introducing different methods of looking at them (Kazak et al., 1999). Resilience. Resilience refers to an ability to recover from or adjust to misfortune or change (Norberg, Poder, & Essen, 2012). Stress. Stress refers to any environmental or physical pressure that elicits a response (Cohen et al., 2012). Summary The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress. Participants included eight parents whose children are completed with treatment or close to completion. Semi-structured interviews were conducted with the participants and recorded by the researcher. Data collected were used

12 to discover the phenomenon of the experience from reading the reframing beliefs exercise (Appendix A) (Kazak, 2005) given during the interview. The responses of parents were synthesized through the textual portrayal of the data. Structural descriptions of the responses of the parents lived experiences may produce themes (Reeder, 2010).

13 Chapter 2: Literature Review The purpose of this qualitative study using interpretive phenomenological inquiry was to discover if use of reframing beliefs tool produces emergent themes from the parents lived experiences which indicate and explain a reduction in distress (Reeder, 2010). This chapter will provide in the literature review, information on historical need, current research on the impact of families’ during pediatric cancer treatment, timing of distress, mechanisms and theoretical framework for family-based interventions, and summative versus formative assessment. Each section of the literature review provides information that justified need and relevancy to the purpose of the proposed study. Documentation Multiple databases such as ProQuest, EBSCOhost, SAGE Journals, APA, ScienceDirect, Refworks, Springerlink, JAMA, PubMed, Taylor and Francis Online, Wiley Online Library, along with, various books in the subject area. In all sections of the proposed study with the exception of historical need, information cited was published during 2010-2014. Key words and phrases used when searching for scholarly relevant information were as follows: parents of children with cancer, oncology, stress and parents, PTSD and parents whose children are in cancer treatment, interventions for families of children with cancer, cognitive behavioral theory, reframing beliefs, summative assessment, and formative assessment. Historical Need In the early 1980s and 1990s, doctors in the field of pediatric oncology began realizing that the reactions of parents to the treatment of their children had an impact of increasing their distress (Morrow, Hoagland, & Carnicke, 1981). In 1980, the

14 psychosocial adjustment of parents whose children had cancer was assessed (Morrow, Hoagland, & Carnicke, 1981). The hypothesis was parents who have children with childhood cancer have several different emotional challenges, which could be assisted by a supportive system (Morrow, Hoagland, & Carnicke, 1981. Morrow, Hoagland, and Carnicke (1981) found different patterns of association between social support and adjustment. The researchers’ stated in the findings that for those children still in treatment the perceived social support was significant. Parents identified treatment of their child as a time of needed support. Parents’ ability to handle the stressors and issues during their child’s treatment was determined to be dependent on perceived social support. Not only are social supports necessary for the parents but the child and parent relationship during treatment began to be identified as an important area of concern for researchers (Morrow, Hoagland, & Carnicke, 1981). Two sets of researchers Jacobsen et al. (1990) and McMurty et al. (2010) studied child and parent behaviors during painful medical procedures, in relationship to demographics, medical, and psychological factors. The researchers looked at the relationship of the parental behaviors to the child’s distress. The researchers’ found that the parents’ explanation of the procedure to their child before the procedure and the parents’ perception of how their child was going to react had a great impact on the overall procedure. Parents’ reactions in the 1990 and 2010 studies were similar; the researchers concluded parental perception affects their children. In 1995 Noll, et al. looked at two different aspects of parental perception, which were: family functioning and parental distress. The two groups in the study consisted of parents whose children had and did not have cancer. The researchers concluded that there

15 was not a difference in the comparison groups. The exception in the study by Noll et al. (1995) was that the mothers showed a greater level of stress than the fathers, and when the treatment was, active social support may have had a significant impact on the parental distress. The gender of the parent did make a difference with their emotional reactions. Social support of the parent reduced the effect of the stress the parent experienced. Social support, gender, and parents’ perception appear to have been important considerations when looking how to assist them. These findings suggested that parents’ ability to help their children during cancer treatment may be aided by interventions focusing on building supports and assisting with perceptions of their child’s treatment. A historical review of studies that researchers (Jacobsen et al., 1990; Morrow, Hoagland & Carnicke, 1981; Noll et al., 1995) have conducted has led to the importance and development of family-based interventions in the field of pediatric oncology. It is important to emphasize that without this early research, researchers would still only be working with the child during pediatric cancer treatments. Also, the role of, and impact on the family would not be considered (Williams, McCarthy, Eyles, and Drew, 2013). Current Research on the Impact of Families’ During Pediatric Cancer Treatment Current research will add to the readers understanding and rationale in the development of family based interventions. Pediatric cancer researchers would still only be working with the child during pediatric cancer treatments (Jacobsen et al., 1990). Also, the role and impact on the family would not be considered (Jacobsen et al., 1990). Williams, et al., (2013) stated, “Further research is needed in this area to ensure the understanding of the experiences of parents and how to best support them.” (p. 264). Williams, Williams and Williams (2013) discussed the family systems theory and the

16 effects of their child’s cancer on the entire family system. Williams, Williams and Williams (2013) study was focused on nursing interventions during pediatric cancer treatment and how to assist both children and their families. The need for evidenced based practice across many areas of care for parents and their children in cancer treatment was indicated in the study implemented (William, Williams and Williams, 2013). Even though there has been historical information (Noll et al., 1995) that parents develop stress during their child’s cancer treatment, research is still needed (Williams, McCarthy, Eyles, and Drew, 2013). Researchers’ studies focused on establishing that parental distress was high during their child’s cancer treatment (Noll et al., 1995). Specific indicators of the stressors and the kinds of parents that experienced the stress were found, although interventions were not discussed (Noll et al., 1995). Researchers earlier showed that parents of children in cancer treatment needed further assistance (Morrow, Hoagland & Carnicke, 1981). Researchers as pointed out by Williams et al., (2013) have shown that parents experience distress although the understating of what parent’s experience and how to support them is missing. Sulkers et al., (2014) studied the impact of stress of parents and caregivers during their child’s first year of cancer treatment. The study measured caregiving stress, depressive symptoms, anxiety, health and demographic and other medical issues. At diagnosis stress for the caregiver was at its highest and over time this began to decease (Sulkers et al., 2014). As in other studies not all mothers experienced decreased stress, single mothers were a group that did not experience decreased stress (Sulkers et al., 2014). Those parents that had other children in the family that were healthy did decrease their stress and it was mentioned that it might have been because they were able to assist the parent and be a distraction from the ill child (Sulkers

17 et al., 2014). Sulkers et al. (2014) mentions in the conclusion that screening may be assist in the health care providers giving needed preventative and specific care to those that are in need at diagnosis and during treatment. Pierce et al. (2016) studied psychosocial screening and the usability of screenings to determine resources needs. Several tools were used to measure psychosocial concerns, electronic tools were user friendly by parents and the researchers concluded that screenings are helpful and can be used to provide resources to the families during their child’s cancer treatment (Pierce et al., 2016). Noll et al. (1995), Caroli and Sagone (2014) studied the emotions of mothers with children in cancer treatment. The mothers’ emotions were measured against a control group who did not have children in cancer treatment. The mothers of the children in cancer treatment demonstrated higher level of stress and multiple feelings of low selfworth based on their inability to help their children with the treatment experiences (Caroli and Sagone, 2014). Mothers stated that the support of the medical professionals was important, the support increased their self-efficacy and improved their self-worth. Emotional states of parents whose children were in cancer treatment were described; and the importance of the support of the medical professionals was found by Caroli and Sagone (2014) to improve the mother’s distress. In 2014, Geist et al. studied how parents’ emotional states was related to child behavior problems. One hundred twenty-three parents whose children were newly diagnosed, 58 fathers and 65 mothers, were given questionnaires independently to evaluate their emotions, and stress, and the emotions and stress of their children. The researcher’s (Geist et al., 2014 and Pierce et al., 2017) conclusions indicated high levels of parent’s stress resulted in child behavior issues. The stress level and negative feelings

18 of the parents were indicators of the child’s behaviors during treatment. Geist et al. (2014) also indicated that there was a need to look at early assistance to work on helping to decrease parental stress. If parents’ stress during their child’s cancer treatment results in child behavior issues, how could the parent’s reactions be different than the population of parents who had healthy children? Hoekstra-Weebers et al. (2011) identified and compared characteristics of optimistic parents whose children had cancer to parents of healthy children. Both groups responded to questionnaires regarding psychological distress and the use of seven coping styles, active problem focusing, palliative and passive reaction patterns, avoidance, social support seeking, expression of emotions, and comforting responses. The researcher’s concluded parents of children with cancer had higher support-seeking behaviors than healthy parents. The parents’ coping was associated with the increases in emotional expression in the first year, which was associated with distress (Hoekstra-Weebers, Wijnberg-Williams, Jaspers, Kamps & Weil, 2011). In a follow-up study five years later, there was no difference in the parenting behaviors or coping (Hoekstra-Weebers et al., 2011). The five-year follow-up study was significant because the researchers found the more recent the diagnosis, the more stress the parent experiences. Timing of the support seeking behavior in the first year of cancer treatment is important, and as the treatment continues or ends during a five-year period, the stressors are not that important. Additionally, researchers concluded that optimism has a relationship to psychological distress and that interventions needed to be targeted to assist parents in effective coping strategies (Hoekstra-Weebers et al., 2011). Researchers, Hoekstra-Weebers et al., (2011) found optimism to have a direct relationship to distress.

19 Hoekstra-Weebers et al., (2011) compared healthy children’s parents and those of children in cancer treatment and established there was a difference in how parents respond to specific stressors. Behaviors of support seeking, and coping were two additional areas related to distress in the Hoekstra-Weebers et al., (2011) and Harper et al. (2016) studies. Rodriquez et al., (2011) studied genders of parents and their reactions to having children in cancer treatment. Mothers of these children in cancer treatment had higher stress levels than fathers. The physical effects of the cancer treatment on their children were found to be more stressful for both parents (Rodriquez et al., 2011) gender issues is interesting, mothers were the specific focus of stress-related symptoms. Rodriquez et al., (2011) found that the fathers’ reactions were related to their child’s physical status and not the overall diagnosis and treatment of cancer. Rodriquez et al. (2011) provided information that indicated both parents experienced stress during their child’s cancer treatment this information clarifies interventions that target both parents. Rodriquez et al. (2011) concluded both parents experienced stress although that was not the conclusion in a previous study by Noll et al., (1995). Fathers and mothers experience their child’s cancer treatment differently, but both have stress. Interventions need to be able to address the gender differences to assist parents with their symptom relief (Rodriquez et al., 2011). Compas et al. (2015) focused on mothers and fathers coping internally through emotions and externally with behaviors. Compas et al. (2015) focused on increasing multiple coping skills, and both parents should be targets of those coping skills. Compas et al. (2015) also suggested if one parent could learn new coping skills, those could benefit both and be a positive support. Caroli, and Sagone (2014) compared mother of

20 children who were in cancer treatment versus those of healthy children. Higher levels of stress were found in the mothers with children in cancer treatment. Mothers of children in cancer treatment also expressed lower levels of self-image as a parent than those in the healthy group (Carolli and Sagone, 2014). Experiential avoidance is a new term in the last three years which is used to describe how parents of children newly diagnosed with cancer deny their current situation. Distress has been linked to experiential avoidance in different populations and may be a focus for interventions that help decrease parental stress (Cernvall et al., 2012). Cernvall et al. (2011) coined the term of experiential avoidance as the denial of the experience and the focus on other less stressful events or occurrences. Experiential 0000avoidance is common with many people during stressful situations and has been linked to how a person copes with stress (Bardeen, Fergus, & Orcutt, 2013). If experiential avoidance is a coping strategy experienced by people in stress, then parents who have children in cancer treatment may be more vulnerable to experiential avoidance (Bardeen, Fergus & Orcutt, 2013). Cernvall et al. (2011) studied parents who had children in cancer treatment and found those who experienced higher levels of stress had more potential to use experiential avoidance as a coping strategy. Interventions that address the high levels of stress that parents feel during their child’s cancer treatment could help them to cope with the stress and not avoid the experience. Cancer is considered a chronic illness and a study was designed by Gannoni and Shute (2010) to look at how children and parents adapt to chronic childhood illness. Several different chronic illnesses were chosen as part of the study, including cancer. Gannoni and Shute, (2010) found themes that included:

21 1) The impact of the illness on life activities, 2) The understanding, coping, and social functioning of the disease, 3) The outlook and, 4) The psychosocial interventions. Cancer was found to have more of an impact on the parental reactions than other illnesses (Gannoni & Shute, 2010). The diagnosis of cancer in the past meant no cure when a parent of a child was told “Your child has cancer”; and despite treatment improvements, these feelings prevail. The diagnosis of cancer produces high levels of parental stress (McCarthy, Ashley, Lee, & Anderson, 2012). McCarthy, Ashley, Lee, and Anderson (2012) found that several characteristics predicted acute stress disorder among parents of child cancer patients: female gender, predetermined psychological problems, anxiety diagnosis, family life, and the type of cancer diagnosis of the child. Stress can affect parents differently, which puts them at a greater risk for emotional and health-related problems (McCarthy, Ashley, Lee, & Anderson, 2012). Granek et al. (2012) compared mothers in single-parent families with two-parent families in pediatric cancer treatment. Granek et al. (2012) concluded that single parents were more prone to stress because of multiple factors such as financial strain, job concerns and lack of support system. McCarthy et al. (2012) concluded being female was an indicator of a higher likelihood of developing acute stress disorder, and being single parent increased the stress. Distress of parents associated with stressors during pediatric cancer treatment does occur frequently. Hildebrand et al., (2011) identified four areas of stressors, 1)

Cancer treatment and its side effects,

22 2)

Distressing emotions,

3)

Disruptions in daily routines, and

4) Social challenges. Mullins et al. (2012) reviewed studies between 1997-2007 on parental stress following the diagnosis of and treatment of their child. Sixty-seven different studies were evaluated Mullins et al. (2012) found that defining parental stress and timing of the assessment were common themes. The time of diagnosis and the maternal symptoms appeared to be significant. Mullins et al. (2012) concluded that the parents were resilient although a certain percentage of them reported stress nearly five years later. The researchers (Mullins et al., 2012) found that defining parental stress and assigning fixed points during treatment would assist therapists in helping during the assessment process. Williams, McCarthy, Eyles and Drew (2013) parenting changes during a child’s cancer treatment due to the stressors, and psychosocial challenges associated with the treatment of the child. Parenting becomes more intensified, relationships with the child deepened, a strong protective response occurs, and corrective behavior of the child may decrease (Williams, et al., 2013). Williams et al., (2013) emphasized the challenges that occurred with parenting a child in cancer treatment and discussed the positives that occurred. Caroli and Sagone (2014) found that mothers experienced higher levels of support than mothers of healthy children, this support could be a protective factor for reducing the mothers stress level. Mothers reported more stress if they did not receive support from the health care provider and specialists seeing their child (Caroli and Sagone, 2014).

23 A longitudinal study with 62 parents that had children in current treatment for cancer was conducted by Norberg and Boman (2013). Norberg and Boman (2013) reported loss of control as a finding from a questionnaire, Parental Psychosocial DistressCancer Questionnaire. The parental as the caregiver role was found to be a problem. Norberg and Boman (2013) suggested interventions of information, involvement in treatment, and assistance from people in a support role. Norberg and Boman (20130 indicated that the inability to be in control as a parent was an indicator for Post-Traumatic Stress Symptoms after his or her child’s treatment had ended. The gender issue was another factor although the fathers increased level of depression was a major concern in the test results. Rosenberg et al. (2014) suggested that if interventions were not implemented to assist parents with their stress, then negative treatment outcomes for their children and their families would occur (Rosenberg et al., 2014). Parental experiences whose children are in cancer treatment have been studied by Rosenberg et al. (2014) with a variety of results. Caes et al. (2014) studied parents of children in treatment for Leukemia. Children who have Leukemia often go through invasive procedures such as Lumbar punctures and bone marrow evaluations. Parents and children’s emotions were the focus of the study. The fatal thinking of the parents and the children were evaluated as they were undergoing invasive procedures. The parents fatal thinking was assessed during the first procedure then ongoing with both parent and child before and after each procedure (Caes et al. 2014). The results of the study confirmed that parents who initially had low fatal thinking continued to have low fatal thinking along with their children. Those parents that had high fatal thinking at the first test continued to have high fatal thinking during the treatments and their children’s distress increased

24 (Caes et al., 2014). Caes et al. (2014) concluded that assisting parental distress in the beginning of treatment is important to the overall distress experienced by both parent and child. Klassen et al. (2012) studied immigrant and single parents of children with cancer. Two separate studies were conducted; Klassen et al. (2012) explored the caregiving experiences of immigrants and single parents of children who had cancer. Klassen et al. (2012) concluded that these parents experienced several issues impacting their quality of life; and these were similar to what other parents experienced. These were: 1) Difficulty sleeping, 2) Tired during the day, 3) Increase or decrease in weight, and 4) Emotional symptoms of anxiety, depression, guilt and anger. Klassen et al. (2012) used a qualitative approach with stated lived experiences of the parents. There were negative and positive outcomes that the parents experienced with their child in cancer treatment. Positive outcomes include having a greater appreciation for their familial experiences, and increases in patience, empathy, and appreciation of how others had helped them during their struggles (Klassen et al., 2012). Tremolada, Bonichini, Schizvo and Pillon (2012) stated that parents can have severe emotional problems that later become mental health issues. Parents whose children are in cancer treatment experience post-traumatic stress disorder and post-traumatic symptoms more often than by parents whose children are not in cancer treatment (Tremolada, et al., 2012).

25 Gibbins, Steinhardt, and Beinart (2012) wanted to explore, using a qualitative design, studies on parents’ experiences of having a child in pediatric cancer treatment. Gibbins, Steinhardt, and Beinart (2012) concluded parents wanted to have a sense of control, be able to adjust as new symptoms occur, learn new coping methods, and feel valued and accepted. Gibbins, Steinhardt, and Beinart (2012) found the health care professional’s role to be crucial. Health care professionals could provide to the parents’ clear directions, help parents feel in control, and acknowledge the cultural and gender roles. Thus, research demonstrates that having a child with cancer results in multiple stressors, enhanced feelings of distress, and experiences of loss of control and experiential avoidance. Certain characteristics including parent gender and family structure (e.g.one parent family) were related to higher levels of distress. Researchers found support, information, and involvement in treatment to be important concerns. Assisting parents at particular times during their child’s treatment may be another important consideration. (Gibbins, Steinhardt, & Beinart, 2012) Timing of Distress Families are impacted by the cancer treatment of their children, and distress/stress seems to be a common theme (Compas, et al., 2015. At the time of diagnosis parents of children in cancer treatment experience stress that continues throughout the treatment (Compas et al., 2015). Three stress phases have been developed to explain effects of children’s cancer diagnosis and treatment on parents by Tremolda et al., (2012), who also described pediatric medical traumatic stress (PMTS). The phases are as follows: 1) Diagnosis and events directly after diagnosis,

26 2) Treatment and its additional concerns including side effects and parental decisions, and 3) Results of long-term challenging treatment experiences of the child and parent. The model provided in the research of Tremolada, et al. (2012) (see below) displays the levels of stress and the potential symptoms of children and their parents. Tremolada, et al. (2012) also provided the focus of interventions in each phase to assist parents and their children in the reduction of problems post-treatment.

Note: Reproduced from Post-traumatic stress symptoms in mothers of children with leukemia undergoing the first 12 months of therapy: Predictive models, by Tremolada, M., Bonichini, S., Schiavo, S., & Pillon, M., 2012, Psychology & Health 27, p. 1449. Copyright (2012), with permission from Routledge, Taylor & Francis Group.

Figure 1: Model of medical traumatic stress. Professionals in hospital settings have concerns with timing for their patients and caregivers receiving information; medical information is necessary for parents to have although how and when to offer the information is of concern. Distress can be decreased by giving medical information to caregivers but can also be increased. Interventions to

27 deliver information are a new focus of researchers (Ringner, Jansson, & Graneheim, 2010). The chart provided earlier by Tremolada et al., (2012) utilized within their research may serve as a guide to deliver information at critical times. Information given by caregivers can successfully impact the parents and their children to reduce their emotional issues thus leading to more favorable treatment outcomes. Dunn et al. (2012) reviewed three different studies and found timing in treatment played a significant role of stress experienced by parents. Dunn et al. (2012) focused on Posttraumatic Stress Disorder (PTSD) with parents in pediatric oncology treatment. Dunn et al. (2012) found that mothers experienced more symptoms of PTSD during the treatment of their children. When mothers were tested for stress during the period of early treatment, if the score was borderline PTSD existed by the later treatment (Dunn et al., 2012). The second study reviewed by Dunn et al., (2012) was a meta-analytic review of the influence that childhood cancer had on the parent and overall family. The time periods for children in treatment also were crucial when looking at interventions to decrease parental distress levels. Time since diagnosis was important when Dunn et al. (2012) compared the psychological functions of the family unit challenges arose when Hocking et al., (2013) conducted a randomized clinical trial of a psychological intervention for parents or caregivers of children diagnosed with cancer shortly after diagnosis. Low retention rates and lack of participation were found by Hocking et al., (2013) as an indicator that timing is essential for effective intervention. In the third study, Schweitzer, Griffiths, and Yates (2012) focused on the general experience of the parents when their child was diagnosed with cancer. The authors used an Interpretive Phenomenological Analysis to understand more completely the parents’

28 lived experiences. Nine families participated in the study, and each had a child diagnosed with cancer. The families were questioned two different times six months apart. At the initial diagnosis parents expressed high-stress. The themes parents expressed at the high stress times were as follows: emphasis of time, the change that occurred, support, values, selflessness, and positive attitude. Helping parents continue a normal life even though their children were in cancer treatment was expressed as an important factor. Schweitzer, Griffiths, and Yates (2012) stated that although a trauma-based model was the most commonly used when working with parents, they felt that a more adaptive model would be more appropriate. An adaptive model would aid the family in handling different situations as they arose rather than diminishing the events (Schweitzer, et al., 2012). Each of the three studies, Rodriquez et al. (2012), Hocking et al. (2013), and Schweitzer et al., (2012) placed emphasis on timing of the stress experienced by parents during their child’s cancer treatment. For parents to decrease their stress in an efficient manner, they needed to be introduced to medical information when the child was initially diagnosed with cancer. Understanding how information can be received by parents was another concern studied by Kastel, Enskar, and Bjork (2011). Akado et al. (2016) studied how time changes the distress of the parent and child. Upon diagnosis families report express increased stress related to the many changes that need to take place during early treatment of their child. Child behavioral and emotional issues may increase depending on the parents’ adjustment to the stress they feel during their child’s treatment (Akado et al.,2016). Parent and child distress usually decreases over time as adjustments to treatment occur. The results of the Akado et al. (2016) study indicated that the children reported lower levels of distress even though their parents

29 distress continued. The parent’s emotional status in the study results was often linked to the child’s emotional status (Akado et al., 2016 and Sultan et al. 2016). Even one year later parents and the child’s emotional status was similar. The results of the link between child emotional status and parent emotional status was a concern by the researchers Akado et al. (2016). If the parents of the child who is receiving treatment are prone to anxiety or another emotional issue this presents a concern for the child’s emotional status during and after treatment (Akado et al.,2016). Researchers Akado et al. (2016) determined that looking at the similarities of how parents adjust to their child’s treatment over time may help those that are not adjusting (Akado et al.,2016). Kastel et al., (2011) and Schweitzer et al., (2012) used a qualitative study design to gain the perspectives of parents and how they received information during early treatment. Kastel, Enskar, and Bjork (2011) conducted the study in a small cancer unit with eight families of varying ethnic backgrounds. Kastel, et al., (2011) mentioned when and how information was delivered, and by whom. Kastel, et al., (2011) concluded parents needed information to feel confident and secure with their child’s treatment. Caregivers in hospitals did not give explicit information and did not take the time to help parents when they had questions. Understanding the sensitive situation, the parent was in and how information needed to be given by health care providers could assist the parents in decreasing their stress and feeling confident with their child’s treatment (Kastel, Enskar & Bjork, 2011). Kilicarslan-Toruner and Akgun-Citak, (2013) utilized a qualitative design to look at families of children in cancer treatment and how they began to seek and need information. The researchers wanted to answer the following:

30 1. What sources of information about cancer and its treatment are sought by the parents of children with cancer? 2. What information do the parents of children with cancer find after the cancer diagnosis and during the treatment process? 3. What factors affect parents’ search for information about cancer and treatments? 4. What decision-making situations do families face about cancer treatment? 5. What factors affect the decision-making process of parents whose children have cancer? 6. What is the health team’s impact on information-seeking and the decision- making process (Kilicarslan-Toruner & Akgun-Citak, 2013)? The emergent themes were as follows: information providers, information concerns, considerations impacting obtained information, processing of information, considerations impacting how the information was processed, and what the parents wanted from the health care providers (Kilicarslan-Toruner & Akgun-Citak, 2013). The information gained from the qualitative study by Kilicarslan-Toruner & Akgun-Citak (2013) confirmed that parents need information, how the information is given is important and the specifics of what health care providers need to offer to parents. Seeking and needing information from health care providers is one of the protective factors in decreasing distress of parents (Kastel, Enskar & Bjork, 2011). The researchers found that parents see their health care providers as the information center. The parents indicated that the health care providers were the key information providers and did not seek out information from other sources in the same manner as they would other concerns. Parents in the study were found to need assistance

31 in information seeking and decision-making during treatment of their children. Mothers of children in cancer treatment had been identified as having more depressive symptoms than the fathers. Rodriguez et al. (2012) studied the mothers’ levels of depression and determined that it increased after diagnosis and relapse of cancer. Mother-child communication has been found to affect the child’s ability to handle treatment (Jaser & Grey, 2010). When studying diabetes Jaser and Grey (2010) found that if the mother had higher symptoms of depression and anxiety, the parenting style was affected. The more anxiety and depression the mother experienced, the more the likelihood that communication style would change. The mother’s communication style with his or her child about cancer was either positive with warm responses thereby allowing the child to discuss his or her feelings or negative with less discussion and more control of the conversation (Rodriquez et al., 2013). Rodriquez et al., (2013) indicated the importance of examining the communication about cancer between the parent and the child and how to assist parents in effectively communicating. The more the mother experienced anxiety and depression the more likely the child might not be able to handle their treatment because of the mother’s communication style and its impact on the child. Understanding the level of distress in the family can assist the caregiver in determining when intervention is necessary and can be most effective. Timing of distress has been determined by Kastel, et al., (2011) to occur at diagnosis and within the first several months of treatment. Parents expressed the need to be in more control, understand the diagnosis of their child, and have support (Kilicarslan-Toruner & Akgun-Citak, 2013). Caroli and Sagone (2014) found that mothers experienced higher levels of support than mothers of healthy children, this support could be a protective factor for reducing

32 the mothers stress level. Mothers reported more stress if they did not receive support from the health care provider and specialists seeing their child (Caroli and Sagone, 2014). Helping health care professionals provide the needed information and support could assist the parents from developing additional stress-related issues and ultimately be more supportive for their child receiving treatment. Mechanisms and theoretical frameworks for family-based interventions were not developed until the 1980’s after a foundation of research existed to identify that interventions were necessary for parents and their children in pediatric cancer treatment. Mechanisms and Theoretical Framework with Family-Based Interventions The cognitive behavioral theoretical mechanisms and framework using cognitive behavioral treatment for family-based interventions were first used in 1999. (Kazak et al., 1999). Earlier, Morrow, Hoagland and Carnicke (1981) concluded that parents of children in cancer treatment needed interventions that decreased their stress. As early as 1999, a family-based intervention program called Surviving Cancer Competently Intervention Program (SCCIP): A Cognitive-Behavioral and Family Therapy Intervention for Adolescent Survivors of Childhood Cancer and Their Families was developed (Kazak et al., 1999). The goals of the intervention were to reduce symptoms of distress and improve family functioning. Data from a pilot study of 19 families were evaluated before the intervention was implemented and six months after the intervention was over (Kazak et al., 1999). Kazak et al. (1999) concluded that symptoms of posttraumatic stress and anxiety had decreased upon completion of the intervention. The specific cognitivebehavioral theory utilized in the SCCIP intervention was Adversity-BeliefsConsequences. The framework of Adversity-Beliefs-Consequences was used by

33 Seligman (2011) to develop a term called learned optimism. Learned optimism if taught to parents of children in cancer treatment, can create a coping skill to decrease the stress that a parent is experiencing during his or her child’s treatment. Kazak et al. (1999) found that developing both resilience and learned optimism was important in their family- based intervention program. Specific skills to create resilience have been identified which utilize cognitive behavioral strategies. If resilience skills were taught to parents and children, skill development would decrease the distress of parents and children in coping with stressful situations (Rosenberg et al., 2014). Seligman (2011) and Rosenberg et al. (2014) used cognitive behavioral tactics to increase learned optimism and resilience and decrease distress of parents and children. In a study of sexual abuse and trauma with children Deblinger, Mannarino, Cohen, Runyon, and Steer (2011) used cognitive behavioral theory with the child and the parents along with narrative therapy. Deblinger et al., (2011) found a reduction in the diagnosis of posttraumatic stress disorder with the use of cognitive behavioral theory and narrative therapy. Norberg, Poder, and Essen (2012) found cognitive behavioral techniques to increase resiliency and reduce anxiety-producing perceptions of pediatric oncology treatment procedures thereby reducing distress in parents and of children. CBT has also been demonstrated to effectively reduce health anxiety. Health anxiety is a term that is used by Hofmann, Asmundson, and Beck (2013) to describe people who experience health symptoms and feel stress from the symptoms or emotions stemming from the treatment procedures. Hofmann, et al., (2013) discussed cognitive behavioral theory and the decrease of anxiety related to the health symptoms. Hofmann, et al., (2013) stated that more work was needed to determine how cognitive behavioral

34 theory explains changes in perceptions of health anxiety. Health anxiety and hypochondriasis are conditions that often go together with people who are experiencing health issues (Olatunji et al., 2014). Hypochondriasis is a condition defined by Olatunji et al. (2014) as an inaccurate preoccupation with a person’s health. The persistent focus on an incorrect health concern can create anxiety and depression (Olatunji et al., 2014). Olatunji et al. (2014) conducted a meta-analysis on Cognitive Behavioral Therapy (CBT) techniques to determine the effectiveness of decreasing symptoms of anxiety and hypochondriasis. Olatunji et al. (2014) reviewed 15 studies with total of 1081 participants; conclusions revealed CBT to be effective in reducing anxiety and hypochondriasis. Olatunji et al. (2013) found the longer versions of the CBT intervention produced more useful results although Olatunji et al. (2013) concluded further research is indicated. The following diagram shows how the number of CBT sessions increased the effectiveness of the techniques being used in the studies. The number of CBT sessions is in direct correlation to the increase in effectiveness of the intervention. Olatunji et al., (2014) suggests that health anxiety can be decreased with CBT with adults exhibiting health concerns and hypochondriasis. Using similar strategies, Kazak and Noll (2015) developed a model to assist the family in reducing stress during their child’s cancer treatment. The following diagram shows how the number of CBT sessions increased the effectiveness of the techniques being used in the studies. The number of CBT sessions is in direct correlation to the increase in effectiveness of the intervention.

35

Reprinted from Cognitive-behavioral therapy for hypochondriasis/health anxiety: A metaanalysis of treatment outcome and moderators, by Olatunji, B. O., Kauffman, B. Y., Meltzer, S., Davis, M. L., Smits, J. A., & Powers, M. B. Behavior research and therapy, 58, p. 71. Copyright 2014, with permission from Elsevier.

Figure 2: Meta-analysis of treatment outcome and moderators Kazak and Noll (2015) describe a model (diagram see below) developed by Kazak (2006) from evidence on adaptive behaviors of families. Kazak (2006) used public health guidelines to assist in the determination of family’s concerns; and developed interventions that would be useful during the child’s illness. The universal level in the diagram is for all families that have minimal risk there is still need for education. Families can be screened to determine if further interventions need to be completed. When the family’s stress reaches the targeted level, the family is experiencing more stress; this level is designed to alert a health care provider that the child and family need to be monitored and provided assistance to minimize stress. The clinical/treatment level, in the diagram is the highest level of concern for the health care provider. At the clinical/ treatment level specific providers need to be obtained to work with the family. The following diagram is the model developed by Kazak and Noll (2015).

36

Reproduced from the integration of psychology in pediatric oncology research and practice: Collaboration to improve care and outcomes for children and families, by Kazak, A. E., & Noll, R. B., 2015, American Psychologist. 70, p.152. Copyright 2015 with permission from American Psychological Association.

Figure 3: Model by Kazak and Noll (2015). Eccleston et al., (2015) reviewed therapies that included parents of children with chronic illnesses. Three therapies were reviewed for effect out of 13 studies that used cognitive behavioral therapy, family therapy, problem-solving therapy, and multisystemic therapy and comparing them with all chronic illnesses of the child. The researchers found minimal effect for psychological therapies with parents and their children who have chronic illnesses except for diabetes and cancer (Eccleston et al. 2015). Cognitive behavioral therapies and problem-solving therapies were found to have beneficial effects on parent’s emotional concerns (Eccleston et al. 2015). Cognitive behavioral therapy that included parents and children was found to decrease the child’s major issues while problem-solving therapies modified and improved the parent’s behaviors (Eccleston et al., 2015).

37 Sahler, et al., (2013) developed a problem-solving skills training program to improve anxiety, depression, and post-traumatic symptoms with mothers whose children have just been diagnosed with cancer. Sahler, et al., (2013) included many English and Spanish speaking mothers whose children were in early diagnosis as the participants. The program consisted of eight 1-hour sessions focused on the coping skills adaptive behaviors. The individuals who participated and completed the program demonstrated increased coping skills. At program follow-up, the mothers reported having continued to improve their skills even though the program had ended. Sahler et al. (2013) reported that not including the fathers and other caregivers was a mistake and that; in the future, the researchers would recommend including the entire family. The length of the program caused concern for Sahler et al. (2013). Sahler et al. (2013) concluded the shortened sessions and computer-based programs could help the program reach more families. Computer-based programs improve accessibility to parents whose children are in current cancer treatment. Cernvall, Carlbring, Ljungman, and von Essen, (2015) developed an internet-based ten-session program using CBT. The researchers concluded that the program was promising although there was a high amount of attrition. The authors determined via the pre/post-test results that the program was successful in decreasing post-traumatic stress of anxiety, and depression. Cernvall, et al., (2015) stated replication is important to the future of the program. Gearing et al. (2011) defined valid and reliable interventions as being able to replicate with fidelity achieving similar results and future researchers adding or decreasing a portion of the original intervention to develop new interventions. The Surviving Cancer Competently Intervention Program has been replicated and modified by

38 Warner et al. (2011) to a shorter version of the curriculum, resulting in a modified 4session version of Surviving Cancer Competently Intervention Program–Newly Diagnosed (SCCIP-ND) in a pediatric outpatient oncology clinic. The results of the intervention were positive, and the levels of distress and anxiety of parents were decreased (Warner et.al, 2011). Warner et al. (2011) used Cognitive-behavior theory to guide development of two tools for the SCCIP-ND that were made available to health care providers for parents of children. Warner et al., (2011) used Cognitive-behavior theory to develop the tools. Reframing beliefs utilizes the Cognitive-behavior theory of Adversity-BeliefsConsequences framework originally developed by Ellis (1962), the theory on which cognitive behavioral therapy is based (Epp & Dobson, 2010). Cognitive behavior theory is the foundation of the family-based intervention, Surviving Cancer Competently Intervention Program. An intervention developed by Kazak et al. (1999) used the Surviving Cancer Competently Intervention Program with adolescent cancer survivors. This intervention utilized the theory of cognitive behavior change and reframing beliefs around the adversities of the pediatric trauma (Kazak et al., 1999). Kazak et al. (1999) used family therapy approaches in a four-session one-day intervention. Kazak et al. (1999) concluded that there was a reduction in intrusive thoughts of parents, and more distressed families might have had greater benefits (Kazak et al., 1999). Families within the first year of cancer treatment were recognized by Mullins et al. (2012) to experience more stress; and the intervention targeted at adolescent cancer survivors and their families did not fit the designation of newly diagnosed. Mullins et al. (2012) stated symptoms and symptom relief for families from an intervention need to occur within the

39 first year of their children’s cancer treatment and would have a greater impact on reducing stress related symptoms. In 2015 a group of researchers and experts came together to address the critical gap in psychosocial services offered to pediatric cancer patients and their families (Weiner et. al.,2015). The group of researchers and experts named the project the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC). The Mattie Miracle Center Foundation funded the project, their mission is to “address the psychosocial needs of children and families living with childhood cancer as well as educating healthcare providers on the impact of such a diagnosis on children and their families.” (Werner et al., 2015). There were 15 standards of care developed by the PSSCPCC group for psychosocial care of parents and their children who were in cancer treatment. The 15 standards are described below: 1. Regular assessments of social/emotional needs should occur for children and their family members. 2. Children affected by brain and other neuro cancers need to be assessed during and after treatment for neurological issues. 3. Yearly and long-term screenings should occur for child and teen survivors in the areas of education, vocation, social, relational, stress and other at-risk behaviors. 4. Psychosocial support for children and their families should be provided during and after treatment along with psychiatric care. 5. Families with children in cancer treatment often experience financial hardship, assessment and assistance for financial issues need to be provided during treatment and beyond.

40 6. Mental health assessments and support should be provided at diagnosis and ongoing through the treatment process. 7. Support, information from the medical staff should be provided to the parents and caregivers of the children who are in cancer treatment. Individualized information should be provided to assist the parents and caregivers in the care of their children. 8. Appropriate information about medical procedures should be given to children during treatment with methods to intervene in stress-related symptoms about the procedure. 9. Social communication for children and their parents need to be evaluated and opportunities for interactions to occur throughout the treatment process. 10. The brothers and sisters of the child receiving cancer treatment are at risk and need to be provided services to assist them during the time their brother or sister receives treatment. Parental assistance in understanding how to assist their other children in the family is an important consideration. 11. Professional assistance from the medical staff treating the child for cancer assists the parents as their child is ready for re-entry to school. 12. Follow through from the parents and their child during treatment needs to be monitored regularly. 13. Palliative care concepts need to be introduced during the treatment process to both the parents and the children. Age appropriate information needs to be a priority when delivering education.

41 14. After a child’s death the medical team that treated the child is to contact the family, evaluate status and further assistance. 15. Working as a team in the medical setting is crucial. All providers, medical and psychosocial, when working together can provide the child and family the care they need during and after treatment. The standards provided above by the PSSCPCC group, (Werner et al., 2015) can assist cancer centers in developing services for children and their families during and after the treatment process. Summative Versus Formative Assessment Limited formative assessment explanations how reframing of beliefs decreases parental distress is available (Price, Carroll, O’Donovan, & Rust 2011). Summative assessment processes using multiple interventions rather than formative assessment is more of the standard (Price, et al., 2011). The general problem is the lack of formative assessment on the phenomena of the lived experiences of parents after receiving reframing of beliefs (Shields, Chawla, & Meadors, 2012). The interventions in the previous section use multiple techniques. The outcomes of the interventions mentioned earlier are not individual techniques such as cognitive behavior or reframing beliefs being utilized independently within SCCIP (Kazak et al., 1999). Multiples interventions and the interventions effectiveness are measured on the summative versus formative assessment. Hosp (2010) studied the importance of formative evaluation to plan instruction for exceptional children. The researcher stated, “Formative evaluation is for learning, and summative evaluation is of learning” (Hosp, 2010, p.5). To learn about the consequences when a technique is administered, formative evaluation immediately following an

42 assessment of the technique could aid us in understanding what learning took place. If the learning that was gained were effective, then the learning could be utilized to build on the technique, or other techniques could be added to it (Hosp, 2010). Frohbieter, Greenwald, Stecher, & Schwartz (2011) were interested in looking at how formative assessment could help teachers understand how students received their work. Frohbieter et al., (2011) describe formative assessment as being an ongoing improvement while summative assessment is providing cumulative judgments after an intervention has taken place. When providing instruction in a classroom, teachers often evaluate their students on cumulative work from a standardized test at the end of a semester. Formative assessment after each learning technique could aid a teacher to understand the level of comprehension of their students and aide in the overall summative assessment results (Frohbieter, et al., 2011). In education, formative assessment is crucial to understand how to improve learning (Price, Carroll, O’Donovan, & Rust, 2011). Educational focus on formative assessment provides teachers the information needed to enhance student learning. If information in multiple forms is given to students, an educator would not know which form of information was the one that provided the most impact and learning. Formative assessment may provide more information on specific scientific processes (HermannLigen et al., 2014). When looking at formative assessment, Coulon et al., (2012) wanted to know more about implementation and overall outcomes of a program they were attempting to start. How to implement formative assessment was important to understand the outcome. Once implementation was completed if the outcomes were not as planned, formative

43 assessment would have been helpful. Coulon et al., (2012) state summative assessment provides overall results although multiple pieces are missed. Formative assessment has been used to understand an issue that needed further information. Peterson et al. (2014) wanted to know what participants thought about support they were given and used formative assessment within a qualitative study to understand their perceptions. The information gained from the participants’ thoughts were positive and could aid in further supportive services. Understanding participants’ lived experiences Peterson et al., (2014) found formative assessment to be helpful with specific techniques and tools to produce overall change. Researchers Akin, Byers, Lloyd, and McDonald (2015) found that by using formative evaluation with translational science certain measures can be assessed for effectiveness before an intervention was completed. Often summative evaluation is utilized at the end of an intervention and specific measures are not evaluated until the end result has been completed. By performing formative evaluation during the implementation of an intervention additional research questions can be answered (Akin, Byers, Lloyd, and McDonald 2015). Formative evaluation is often underutilized during the development of programs due to lack of knowledge (Hall, Freeman, & Roulston, 2014). The key components of formative assessment are the approach, the characteristics, and the desired outcomes (Hall, et al., 2014). The participatory approach is an essential component of formative evaluation, all involved in development of programs or interventions communicate with each other. Developers and all involved in the program or intervention responses are all taken into consideration during the evaluation. When the responses of all concerned

44 parties in the program are considered by the evaluator the depth of the evaluation will be enhanced (Hall, Freeman, & Roulston, 2014). Hall et al., (2014) found when a qualitative methods approach is used with formative assessment; the outcomes provide a clearer and more in-depth assessment of the results. Hall et al., (2014) developed a table that breaks out the formative program evaluation process into approaches with definitions. See Figure 4 below: Essential Approaches to Formative Program Evaluation Approach

Purpose

Participatory

Educative Qualitative To foster communicative To build exchanges that rapport, promote To demonstrate collaborative learning about cultural and To participate in discovery and meaning decision program and contextual making as it is occurring making, and evaluation that receptivity common informs development ground and implementation Dialogical

Responsive

Illuminative

Emergent

Characteristics Collaborative Reflexive

Analytic

Naturalistic

Mutually beneficial

Judicial

Experiential

Engaged

Desired Outcome

Genuine, authentic partnership

Attentive

Aware

Transformative Interpretive Methodological Mutual revision, understanding adaptation and of program and flexibility to evaluation that respond to fosters capacity emergent issues building

Thick descriptions of program and evaluation implementation and practice that yield complex understandings of phenomena

Note: Reprinted from Right timing in formative program evaluation, by Hall, J., Freeman, M., & Roulston, K., 2014, Evaluation and program planning, 45, p.153. Copyright 2014, with permission from Elsevier.

Figure 4: Essential approaches to formative program evaluation. Another area of interest is formative assessment and how the educational assessments are being administered and the administration of the assessment has implications for the overall learning (Weurlander, Söderberg, Scheja, Hult, & Wernerson,

45 2012). Weurlander et al., (2012) designed a qualitative study that explored students’ perceptions of the assessments they received. Weurlander et al., (2012) found the students’ perceptions helped determine motivation to learning and interest in the assessment approaches. Weurlander et al., (2012) concluded students found innovative approaches, such as group assessment, more interesting and informative than the standard pen and paper assessments. Formative assessment is useful in classrooms with students and can be practiced in other areas that are similar such as evidenced-based programs in public settings (Katz et al., 2013). Evidenced-based programs are implemented via multiple approaches, and people are unaware of how each one functions or interacts with participants. Katz et al., (2013) utilized, Formative Evaluation Consultation and Systems Technique, (FORECAST) which could be reinvented to work within a community setting and provide valuable information to increase effectiveness in evidenced-base programs. Katz et al., (2013) used FORECAST to evaluate new methods to advance evidencedbased collaboration theories and to assist with collaboration program methods and outcomes. Katz et al., (2013) used FORECAST and described a need to understand the outside variables that affect outcomes. Rigid methods of implementation can ultimately harm the effectiveness of a program or method (Katz et al., 2013). Ongoing systems to help provide a feedback loop structure are needed to adjust to the current considerations for implementation in social settings (Katz et al., 2013). The FORECAST model is useful to evidenced-based programs that are delivered in public settings. The ongoing formative assessment process of the FORECAST model is essential to theory development and understanding (Katz et al., 2013).

46 When a program is implemented in a public setting, there are many variables that interact within the setting. Using a formative approach to measure each procedure can help identify the problems and successes. Katz et al., (2013) developed a feedback loop model, which they identified as problems associated with theory and implementation. A public setting can help those implementing the program produce favorable positive results. Using formative assessment to examine the lived experiences of participants while using being given tools for learning or changing of behaviors helps researchers understand the process of attitude and behavior change. Formative assessment will provide information about what parents need to experience when successfully reducing distress. Summary The historical need was documented to understand the focus of this study and support that not only was a child undergoing stress during cancer treatment, but stress occurs for parents as well (Morrow, Hoagland, & Carnicke, 1981). In 1995, Hawkins, Vannatta, Garstein, Davies, and Bukowski (1995) examined two different aspects of parental perception: which were family functioning and parental distress. Hawkins et al., (1995), stated that gender of the parents does make a difference in stress experienced by the mother and father, and parents’ perception of their child’s illness was an important consideration in looking at how to assist them. Gibbins, Steinhardt, and Beinart (2012) explored current information for the last five years was to determine the continuing emphasis on parents’ experiences during their child’s cancer treatment. Williams, McCarthy, Eyles and Drew (2013) stated, “Further research is needed in this area to ensure the understanding of the experiences of parents

47 and how to best support them.” (p. 264). Research began in 1981, and 32 years later there is still limited understanding of the impact of childhood cancer on parenting. In 2014 Geist et al., (2014) were interested in looking at how parents’ emotional states correlated with behavior problems of their children. Authors (Geist et al., 2014) concluded the significance of this study is on the outcomes that indicated that high levels of parental stress are referenced to child behavior issues. If the parents could be assisted by reducing their stress, then the less desirable behaviors of the children could be decreased (Geist et al., 2014). Different areas of concern for parents were researched with the emphasis on how to impact the parents during their child’s cancer treatment. Hoekstra-Weebers et al., (2011) studied optimistic parents. Hoekstra-Weebers et al. (2011) found that when compared to parents of healthy children parents of children with cancer had higher support-seeking behaviors. The parents coping was associated with the increases in emotional expression in the first year, which was associated with distress. A 5-year follow-up study was done comparing both parents Hoekstra-Weebers et al. (2011); stated there was no difference in the parents’ behaviors or coping. The closer to the diagnosis of cancer the more parents experienced problematic behaviors and coping concerns (Hoekstra-Weebers et al., 2011). Akado et al. (2016) studied how time changes the distress of the parent and child. Upon diagnosis families report express increased stress related to the many changes that need to take place during early treatment of their child. The parent’s emotional status in the study results was often linked to the child’s emotional status (Akado et al.,2016). Even one year later parents and the child’s emotional status was similar. Researchers Akado et al. (2016) determined that looking at

48 the similarities of how parents adjust to their child’s treatment over time may help those that are not adjusting (Akado et al.,2016). Caroli and Sagone (2014) found that mothers experienced higher levels of support than mothers of healthy children, this support could be a protective factor for reducing the mothers stress level. Mothers reported more stress if they did not receive support from the health care provider and specialists seeing their child (Caroli and Sagone, 2014). Caes et al. (2014) studied parents of children in treatment for Leukemia. Parents and children’s emotions were the focus of the study. The fatal thinking of the parents and the children were evaluated as they were undergoing invasive procedures. Those parents that had high fatal thinking at the first test continued to have high fatal thinking during the treatments and their children’s distress increased (Caes et al., 2014). Caes et al. (2014) concluded that assisting parental distress in the beginning of treatment is important to the overall distress experienced by both parent and child. Williams, Williams and Williams (2013) concluded in their nursing study review of parents and how they cared for their children who were in cancer treatment that there was a need for evidenced based practices for health care providers. Evidenced based practices needed to focus on how to provide appropriate parent education, resources, and assistance to other members of family (Williams, Williams and Williams, 2013). Timing of information given to families can decrease distress (Rodriquez et al., 2012). An intervention to deliver information from caregivers in hospital settings is a new focus of study. Ringner et al., (2010) stated the role of the health care professional is important for the caregivers. Giving clear directions, helping parents feel in control, and acknowledging cultural and gender roles were the specific elements that health care

49 professionals could provide to the parents (Gibbins et al., 2012). Tremolada et al., (2012) developed Phases I, II and III that described pediatric medical traumatic (PMTS), stress of children and their parents’. The levels of the stress and the potential symptoms of children and their parents were defined by Tremolada et al., (2012) with interventions. Healthcare professionals within hospital settings can utilize the model Tremolada, et al., (2012) developed to perform their daily tasks and assist parents and children to whom they are providing services who experience (PMTS) (Tremolada et al., 2012). Hoekstra-Weebers, et al., (2011) found that timing during a child’s cancer treatment was an important consideration, Dunn et al., (2012) focused on Posttraumatic Stress Disorder (PTSD) with parents in pediatric oncology treatment. PTSD was a diagnosis made later in treatment with mothers if they scored high on experiencing stress in early treatment (Dunn et al., 2012). Time-since-diagnosis was critical to the psychological functions of the family unit (Kazak, 2005). Challenges with timing also affected retention rates of parents’ abilities to participate in interventions (Hocking et al., 2014). An interesting outcome by researchers Schweitzer, Griffins, and Yates (2012) concluded that a trauma-based model is usually the most common when working with parents. The trauma-based model was not a conclusion stated by Schweitzer, et al., (2012) they felt a more adaptive model was appropriate. Kastel, Enskar, and Bjork (2011) conducted research on timing and how information was delivered and by whom. Caregivers in hospitals found by Kastel, et al., (2011) did not give explicit information thus did not help the parents decrease their stress. If the information were clear to the parents on their child’s treatment, their level of stress would have decreased, and the parents would have felt more confident with the treatment plan (Kastel, et al., 2011).

50 As early as 1999, a family-based intervention program called SCCIP: A Cognitive-Behavioral and Family Therapy Intervention for Adolescent Survivors of Childhood Cancer and Their Families was developed (Kazak et al., 1999). The goals of the intervention were to reduce symptoms of distress and improve family functioning. The first family-based intervention, Surviving Cancer Competently Intervention Program, was discussed, and Kazak et al., (1999) concluded it was effective in decreasing distress for parents. Kazak et al., (1999) used in SCCIP cognitive behavioral theory as an intervention with emphasis on reframing beliefs which produces optimism and resilience. Learned optimism was a concept that Seligman (2011) utilized with a cognitive behavioral approach to assist people to develop the ability to become optimistic. Rosenberg et al. (2014) used a cognitive behavioral approach that increased resilience to assist parents and children coping with stressful situations. Cognitive behavioral therapy that included parents and children was found to decrease the child’s emotional issues while problemsolving therapies modified and improved the parent’s behaviors (Eccleston et al., 2015). Other family-based psychological based therapies did not influence outcomes of children with chronic illness and their families. Children with chronic illnesses of cancer and diabetes had similar responses to cognitive behavioral therapy and problem-solving therapy (Eccleston et al., 2015). Hofmann, Asmundson, .and Beck (2013) defined health anxiety as stress during health-related concerns. Hofmann, et al., (2013) discussed cognitive behavioral theory and the decrease of anxiety related to the health anxiety symptoms. Olatunji et al., (2014) suggest that health anxiety can be decreased with Cognitive Behavioral Therapy for

51 adults experiencing health concerns. Kazak and Noll (2015) developed a model using a public health guideline to assist healthcare providers’ in determining family’s needs and what interventions would be useful during a child’s illness. The model is prescriptive to the level of services needed for the parent and child. Cognitive behavioral interventions could be used at any level in the model to assist the family with their health concerns. Warner et al., (2011) explored cognitive behavioral theory literature to support the concept that reframing beliefs may reduce parental distress. There is limited understanding of decreasing parental distress with reframing of beliefs, Shields, Chawla, and Meadors (2012) were unable to determine whether reframing of beliefs reduces the impact of decreasing parental distress. A focus on family-based interventions using reframing of beliefs can assist pediatric oncology doctors and nurses to understand how to promote positive outcomes in reducing parental distress and continue to develop effective interventions (Meyler et al., 2010). In 2015 a group of researchers and experts came together to address the critical gap in psychosocial services offered to pediatric cancer patients and their families (Weiner et. al.,2015). The group of researchers and experts named the project the Psychosocial Standards of Care Project for Childhood Cancer (PSCPCC). There were 15 standards of care developed by the PSSCPCC group for psychosocial care of parents and their children who were in cancer treatment. The 15 standards of care are comprehensive and a beginning to the development of evidenced-based practices for cancer centers (Weiner et. al.,2015). The PSCPCC group worked to identify needs, resources and effective evidenced methods that assisted families and children during treatment and after (Weiner et. al.,2015).

52 Formative evaluation is often underutilized during the development of programs due to lack of knowledge (Hall, Freeman, & Roulston, 2014). The key components of formative assessment are the approach, the characteristics, and the desired outcomes (Hall, et al., 2014). Summative and formative assessments were discussed in the study by Hosp (2010). The emphasis by Hosp (2010) was on how formative assessment can aid learning that was gained immediately following the technique. Information could be utilized to build upon the technique, or other techniques could be added once formative assessment was implemented (Hosp, 2010). Harper et al., (2014) stated formative assessment is used in qualitative studies that seek to understand participants’ lived experiences. Researchers, Akin, Byers, Lloyd, and McDonald (2015) found that by using formative evaluation with translational science certain measures can be assessed for effectiveness before an intervention was completed. Using a formative approach to measure each procedure can help identify the problems and successes. A feedback loop model can assist researchers as they are implementing interventions and provide valuable information about the successes of the specific exercise or tool being used (Katz et al., 2013). Using formative assessment texamine the lived experiences of participants while using being given tools for learning or changing of behaviors helps researchers understand the process of attitude and behavior change. Formative assessment will provide information about what parents need to experience when successfully reducing distress.

53 Chapter 3: Research Method Cancer treatment for children is a medical procedure that has a physical and emotional effect on the children and their parents (Landolt et al., 2011). Available interventions designed to decrease parental distress have been outcome-focused (Kleim, et al., 2013). Researchers (Kazak, et al., 1999; Kazak, 2005) focused on studies involving family interventions using cognitive behavioral techniques, reframing of beliefs; they measured the summative outcomes of the intervention at completion, which reduced parental distress (Warner, et al., 2011). Explanations about how reframing of beliefs decreases parental distress has been limited to summative assessment processes using multiple interventions rather than formative assessment. The problem occurs when examining the lived experiences of parents after their beliefs have been reframed, we do not know what lived experiences of parents are and are unable to develop emerging themes for further study (Shields et al., 2012). A study that investigates whether reframing beliefs reduces parental distress with formative assessment could remedy this situation. Summative assessments are not separated by intervention; researchers have limited understanding of them (Kleim et al., 2013). Because of the limited understanding of researchers, which reduces parental distress with reframing of beliefs (Shields et al.,2012), it is unknown whether the reframing of beliefs reduces the impact of decreasing parental distress. These researchers’ findings of the study may help readers gain a more nuanced understanding of the issues and or recommendations. Furthermore, the results of this study may provide future researchers knowledge and usability to improve

54 interventions designed to reduce parental distress in parents whose children receive cancer treatment. The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress (Reeder, 2010). Participants included eight volunteer parents whose children were completed with cancer treatment or within one month of completion. The physician at the site recruited participants by using a script (Appendix E) developed for the study. Once potential participants expressed interest the names and telephone numbers were given to this researcher, a call was placed to the potential participants, information was discussed about the study, an appointment was made if they agreed to participant, for the interview at the study site. Semi-structured interviews were conducted with the interview questions and recorded by this researcher. The participants’ responses were used to explore the phenomenon of their lived experience while using the reframing beliefs tool (Englander, 2012). The semi-structured interviews took place at the University of Texas Medical Branch Pediatric Cancer Center, Dickinson, Texas. Recordings were transcribed, and qualitative analysis software, Dedoose, was used to evaluate participant responses to explore the phenomenon of their lived experience and identify emerging themes concerning the route by which beliefs change and distress is reduced (Englander, 2012). Dedoose software was chosen by this researcher because of the secure encryption technologies used, the design for qualitative data and the usability of the product. The lived experiences of the participants responses to the interview questions were recorded in Dedoose. Once the responses were recorded

55 themes were identified. Protecting participant safety (APA, 2014) was the focus throughout this study; collaboration with social work staff or behavioral health personnel at the study locations was established during the initial approval of this study. Participant distress was monitored in collaboration with the staff at the study site. Participant availability was determined by the study site. Efforts were made to record the responses of participants accurately and obtain enough data to achieve saturation or when nothing new is being stated. To reach saturation or when nothing new is being stated, responses were grouped and compared (Kerr, Nixon, & Wild, 2010). Participant responses were used to discover the phenomenon of their lived experiences. Their lived experience was the critical focus for this interpretive phenomenological design (Englander, 2012). This study examined the lived experiences of the parents whose children are in the first six months of cancer treatment when they use a belief reframing tool. Responses from the parents of their lived experiences upon receiving a exercise based on reframing beliefs were recorded. Data was collected, and the responses were used to discover the phenomena of the lived experiences of the parents. The research questions for this qualitative interpretive phenomenological qualitative study were developed to assist the researcher in discovering emergent themes. Emergent themes may improve the understanding of the lived experience using reframing beliefs to reduce distress in parents whose children are receiving cancer treatment (Reeder, 2010). Q1: What are the lived experiences of parents of pediatric cancer patients when using the reframing beliefs exercise (Appendix A) from Kazak study (Kazak, 2005)?

56 Q2: What were the parents’ adverse events? Q3: How did they experience distress? Participants in this proposed research study were asked interview questions, and the responses assisted in the development of the lived experiences. The phenomena of the parents lived experiences through their responses were used to define emergent themes. Research Method and Design The research is a qualitative methodology utilizing interpretive phenomenological inquiry to discover emergent themes through the lived experiences and the perceptions of those experiences using a reframing beliefs tool developed by Kazak (2005). Qualitative research is utilized to seek the subjective phenomena of a lived experience (Georgi, 2009). Qualitative research would aid in the understanding of human action utilizing reframing beliefs thru the lived experiences and perception is of those experiences (Freeman, Gergen, & Josselson, 2015). A modified five-step process has been developed by Georgi (2009) focusing on, (1) understanding of phenomenological attitude, (2) comprehending fully all the documentation of the participants’ descriptions (3) developing themes, (4) utilizing the statement of participants to create meaningful, psychological documentation describing the lived phenomena, and (5) integrating the lived experiences of the participants into a psychological framework. Georgi’s (2009) process was used by 1) understanding the lived experiences of the participants was the focus, 2) transcribing the participants descriptions accurately, 3) using the participants descriptions of their lived experiences and finding themes, 4) using the statements of the participants and how they relate to the interview and research questions, and 5) integrating the lived experiences of the participants into the psychological framework of

57 reframing beliefs. Credibility, dependability, transferability, trustworthiness are all concerns within qualitative research. Researchers, Ali and Yusof (2011) reviewed multiple qualitative studies, the findings of the studies indicated credibility in qualitative research refers to the efforts that are taken to test an emerging theory (Ali, & Yusof, 2011). Dependability refers to the method that is utilized to ensure a study could be replicated with similar results. If an instrument or research design could be used for other populations than the original one, the study is said to have transferability. Trustworthiness refers to the adherence of researchers to methods and an unbiased approach (Ali, & Yusof, 2011). Efforts of this researcher used to maintain credibility and dependability were to adhere to the steps described in the study implementation procedures. Trustworthiness by this researcher maintained by adhering to the research methods described in the study and to implement and document the lived experiences in an unbiased environment and manner. Every effort was made in this study to maintain credibility, dependability, transferability, and trustworthiness. Population The participants were eight parents whose children had completed cancer treatment or were within one month of completion at University of Texas Medical Branch, Bay Colony Pediatric Clinic, Dickinson, Texas. Ages of the parents ranged from 25-56 and over. Demographic information of age, gender, and marital status was collected but not used in the study. Diagnosis and treatment are described by researchers, Hocking et al., (2014), as the most stressful time for parents of children in treatment. The participants in this study experienced lived phenomena from the reading of a reframing beliefs exercise that is related to the study questions. Stress has been found to be

58 decreased by information given to caregivers during medical treatment (Ringner et al., ,2010). In this study the researcher gave information to the participants and explored the lived experiences of the participants’ responses. Sample The sample size for the study was eight parents. The significance of the data from the participants was the primary focus; the sample size is secondary (Englander, 2012). Interpretive phenomenological analysis is carried out with a small sample due to the indepth look at each participant and his or her responses (Smith & Shinebourne, 2012). The population in the study was selected from a specific group that has the experiences related to study focus. Purposive sampling was used to obtain participants because of the unique perspective that is needed for this study. Purposive sampling refers to a nonrandom selection to ensure the category of participants is represented (Robinson, 2014). Materials/Instruments Semi-structured interviews were conducted with the participants and recorded by the researcher. A reframing beliefs exercise (Appendix A) has been developed for use by health professionals (Kazak, 2005), and was utilized in a semi-structured interview with parents. Dr. Kazak gave approval in May 2015 to utilize the reframing beliefs tool for this proposed study. Parents were provided the tool that was adapted from the Surviving Cancer Competently-Newly Diagnosed manual (Kazak, 2005) and an interview took place utilizing the framework of reframing beliefs as the focus of the phenomena. Interview questions (Appendix D) were asked during the semi-structured interview that allow for original and additional information to come up (Pietkiewicz & Smith, 2014).

59 Data Collection, Processing, and Analysis Data collected was used to discover the phenomenon of the stated lived experience. Parents’ responses were synthesized through the textual portrayal of the data and descriptive themes. Participants’ abilities to speak about their lived experiences without limitations was the focus of interpretative phenomenological analysis during the semi-structured interviews (Smith & Shinebourne, 2012). Saturation refers to the number of like responses of the participants and when enough data have been obtained through the interview process. Emphasis was placed on the researcher to determine when sufficient data had been obtained to acquire an indication of saturation that is a mark of quality in qualitative methodology (O’Reilly & Parker, 2013). Recordings were transcribed, and qualitative analysis software Dedoose was used to evaluate participant responses to explore the phenomenon of their lived experience and identify emerging themes concerning the route by which beliefs change and distress is reduced (Englander, 2012). Participants responses to the interview questions were recorded in the Dedoose software. Themes began to emerge as the participants responses were coded and analyzed by this researcher. The analysis software within Dedoose was used by this researcher to understand and evaluate the information recorded. Assumptions The primary assumption in this study was, parents with children receiving cancer treatment are at risk for developing stress-related disorders, which could ultimately affect treatment (Hildebrand et al., 2011). Pediatric cancer is different than other illnesses; the long-term treatment regimens and the uncertainty of the outcomes, including death, make

60 distress greater than for family members (Landolt, et al., 2011). The second assumption was in this study, participants will answer the interview questions honestly by the researcher explaining that anonymity and confidentiality will be a priority and that they can withdraw from the study at any time without consequences (Simon, 2011). Limitations The methods included precautions to minimize limitations of potential threats from the capturing of the data and synthesizing the results (Creswell, 2012). One of the important considerations is how much weight should be given to the qualitative data? The approach of philosophical and methodological pragmatism (Creswell, 2013) was used in this qualitative research and everything in the findings were considered. Potential limitations included limitations to the completeness of the responses to the semi-structured interview questions. Conditions occurring at the time of the interview could limit the responses given. Conditions that could occur are unexpected weather disturbances causing hardship on participants, unexpected medical emergencies that could cause additional stress. The researcher asked, as a part of the semi-structured interview, if any other stressors are happening in their lives. If the participant expressed one of the mentioned stressors, then he or she had the option of continuing the interview with comments on the stressor taken by the interviewer, delaying the interview, or discontinuing participation. No additional stressors were indicated by the participants at the time of the semi-structured interview. Delimitations The delimitations of this study are reflected in the purpose statement, problem statement, participants, research design, research questions, and theoretical perspectives,

61 which provide this study with controllable variables and specific intentions (Simon, 2011). The strengths and boundaries of the design add to the foundation of empirical studies in literature on cognitive behavioral theory and the model of reframing beliefs to decrease parental distress. The participants in this study were delimited to adult parents who had children in cancer treatment or were within one month of completion. The findings of this study could not be transferred to other populations that did not experience children in cancer treatment. The research is delimited to the eight parents of children who had completed cancer treatment or were within one month of completion and provided their lived experiences using an exercise of reframing beliefs Ethical Assurances This study adhered to several ethical concerns, beneficence, nonmaleficence, fidelity, responsibility, integrity, justice, respect for people’s rights and dignity. Beneficence and nonmaleficence are designed to take the concept of do no harm and make sure the participants are receiving services always with this in mind. The researcher adhered to do no harm; participants were given one evidenced-based tool and were explained they could stop the interview at any time if they were uncomfortable. If participants had become uncomfortable and needed further services this researcher had the ability to refer to the department physician, nurse or social worker for further assistance. Fidelity and responsibility commit the psychologist to maintain standards for his or her clients, research, community, and society. The researcher maintained the commitment to the APA standards, the client, the research project, in which the community is being served, and to society. Additionally, the researcher adhered to

62 fidelity and responsibility by utilizing volunteer hours with no compensation. Integrity is defined according to the APA standards (APA, 2014) as the psychologist will not cheat, steal or act in a fraudulent manner. This principle was adhered to within the development and implementation of this writers’ study. The research was monitored, and data was handled in a consistent manner to provide validity to the outcomes. Justice is defined according to the APA guidelines, as psychologists providing fair and just services to their clients. Respect for People's Rights and Dignity refers to protecting the participant by considering the participants human rights, protecting their right to confidentiality, and taking in consideration their circumstances such as socio-economic status, their culture, and environment. This study used participants and protected their rights and dignity by adhering to confidentiality and considering their socioeconomic status, culture and the environment. The means to address ethical concerns in this research study were rigorous. Human subjects were utilized in this study (Cozby, 2012). The need to develop confidentiality and consent forms were necessary (Appendix B). Committee and IRB of Northcentral University approval were obtained before any research was implemented. Summary This chapter provides the research design, questions, method, population, sample, materials, instruments and data collection and processing and analysis of this proposed study. Assumptions, limitations, and delimitations were provided to help to validate the researcher’s intentions of the study. Ethical assurances were discussed in-depth as was maintaining strict ethical considerations thorough out the study.

63 This study used interpretative phenomenological analysis, to discover emergent themes, derived from the parents lived experiences using reframing beliefs to reduce their distress while their children receive cancer treatment (Reeder, 2010). The research questions for this qualitative interpretive phenomenological qualitative study were developed to assist the researcher in discovering emergent themes. Emergent themes that were discovered could improve the understanding of the lived experience using reframing beliefs to reduce distress in parents whose children are receiving cancer treatment (Reeder, 2010). The participants included eight parents whose children completed cancer treatment or were within one month of completion. Interpretive phenomenological analysis is carried out with small sample sizes due to the in-depth look at each participant and their responses (Smith & Shinebourne, 2012). Semi-structured interviews were conducted with the participants and recorded by the researcher. A reframing beliefs exercise (Appendix A) has been developed for health professionals (Kazak, 2005), which was utilized in a semi-structured interview with parents. The data collected was used to discover the phenomenon of the stated lived experience. Participants’ ability to speak about their lived experiences without limitations was the focus of interpretative phenomenological analysis during the semi-structured interviews (Smith & Shinebourne, 2012). Immediately following the participant reading of the exercise, interview questions (Appendix D) were utilized to obtain responses to their lived experience of the phenomena. The primary assumption that the researcher used was parents whose children are undergoing cancer treatment are at risk for developing stress-related disorders; these disorders could affect treatment (Hildebrand et al.,2011). The researcher took precautions to minimize limitations of potential threats from the capturing of the data and

64 synthesizing the results (Creswell, 2012). The delimitations of this study are the choices made by this writer to the purpose statement, problem statement, participants, research design, research questions, and theoretical perspectives that provide controllable variables and specific intentions (Simon, 2011). Ethical assurances from the APA (APA, 2014) were provided by this study that applied to the proposed study.

65 Chapter 4: Findings The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can efficiently be used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress. Eight parent interviews were completed, male and female from a pediatric oncology clinic whose children have completed treatment or in the final month of treatment. The ages of the parents ranged in age from 26-55, they were selected for the study after the physician from the clinic utilized the flyer for recruitment. Data collection consisted of semi-structured interviews with parents and transcribed using the lived experiences verbal and written responses. Themes were identified using the procedures described by Pietkiewicz and Smith (2014) as intensive and taking the time to evaluate the information received during the interviews. Reframing beliefs was the theoretical perspective used in this study. The results of the phenomenological analysis will be presented in this chapter. Research questions and participants lived experience excerpts will be reviewed to assist in the identification of themes and coding activity. Evaluation findings will describe the meaning of the data and if the reframing beliefs exercise could result in changing perceptions and beliefs. Recordings of the participants were transcribed, and qualitative analysis software was used to evaluate participant responses to explore the phenomenon of their lived experience and identify emerging themes concerning the route by which beliefs change, and distress is reduced (Englander, 2012). Protecting participant safety (APA, 2014) was the focus throughout this study; collaboration with social work staff or behavioral health

66 personnel at the study locations was established during the initial approval of this study. Participant distress was monitored in collaboration with the staff at the study sites. The study site determined participant availability. Efforts were made to record the responses of participants accurately and obtain enough data to achieve saturation or when nothing new is being stated. To reach saturation or when nothing new is being stated, a comparison and grouping of similar responses were completed (Kerr, Nixon, & Wild, 2010). Participant responses were used to discover the phenomenon of their lived experiences. Their lived experience is the critical focus of this interpretive phenomenological design (Englander, 2012). Results Eight parents out of ten referred whose children have completed cancer treatment or were within one month of completion were interviewed using a semi-structured format. The parents lived experiences after being given a reframing beliefs tool to complete or review was the focus of the interview. The questions during the interview process provided the researcher with data from the responses to the research questions for the study. A table is provided below to show the research questions, the themes and subthemes from the data collected:

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Table 1 Research Questions, Themes, and Sub-themes Research Questions Q1: What are the lived experiences of parents of pediatric cancer patients when using the reframing beliefs exercise (Appendix A) from Kazak study (Kazak, 2005)? Q2: What were the parents’ adverse events? Q3: How did they experience distress? Themes

Sub-themes

Theme 1: Worksheet was helpful

Did read it Didn’t read it Went from negative to positive

Theme 2: Afraid of death

Afraid for child School Environment

Theme 3: Afraid of losing child themselves

Theme 4: Had to be Strong

Had to be strong for child Had to be strong for self and another parent Communicated with the staff for direction

The research question and themes are presented along with an overview of the participants’ responses that were associated with the themes determined from the data collected (Table 1): Research question 1: What are the lived experiences of parents of pediatric cancer patients when using the reframing beliefs exercise (Appendix A) from Kazak study (Kazak, 2005)? One theme emerged with three sub-themes that are listed in order from most frequently occurring to least frequently occurring; did read it, didn’t read it and went from negative to positive. The participants’ statements are provided to document how the themes were determined and how their lived experiences were interpreted. Theme 1: Worksheet was helpful. All participants stated that worksheet was helpful, all but one read the worksheet and stated they could see the consequences of their

68 thoughts and actions. The participant that reported not reading the worksheet had the worksheet read to the participant, when the participant stated that s/he could not read it. One participant stated that having the exercise in front of you helps to see the progression of negative to positive. Because this interview was having participants look back during the time their child was in cancer treatment the participants stated that at the time they did not realize what they were doing but if someone had given them this exercise it would have been helpful to them. The last interview was with a participant whose daughter was in her final month of completing treatment. This participant stated she experienced help from the worksheet by talking about her experiences. The diagnosis and treatment protocols were stated by the participants to have happened very fast which did not give them a lot of time to think about what to do next. Participants indicated that if someone had talked to them about their experiences it would have helped. The table below has each participant with their lived experiences in graph format. The worksheet was helpful is a response that all participants stated, the sub-themes were identified as important considerations although were not found to be common in the responses.

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Figure 5: Sub-themes of theme one, by participant. The following are excerpts from the interviews for Theme one. When asked if the worksheet was helpful Participant 1 stated: People need to be educated, they get stuck on their emotions and need help to understand what they are thinking about. The worksheet is something for everyone to learn from. You can have the exercise in front of you and look at the changes. It makes you broaden your horizon, you got other options, you don’t have to get stuck if the consequences are something you don’t desire. Participant 2 said: After I read the worksheet I realized that I just did what the doctor said, I was told to not let my child get exposed to germs so for two years I just kept my son inside as the doctor said. I felt that if I did not do what the doctor said that the

70 consequence would be bad. I don’t want it to happen again, but I would still do what I did because it worked out and my son lived. Participants 3 and 4 had very similar responses, stating “it would have helped.” Participant 5 noted: If someone would have talked to me, it would have helped to take the burden off and changed my thoughts. When I found out my Granddaughter did not want to live I got really scared. Having someone to talk to would have helped me know what to do. Participant 6 said: Parents can investigate rules for their children. With my daughters 504 stipulations at school, I was able to specify and write the protocols to keep her safe. I thought the school was going to follow the protocol initially but then realized it was not going to happen. I moved her three times until the last school understood what needed to happen. My daughter got sick 3 times in first 3 months of going back to her first school. I can see where it went from negative to positive experiences. Participant 7 stated, “The worksheet was helpful and looking back I can see I would talk with my sister about what was going, and she would help her understand. My sister was always there.” And, participant 8 stated: It was helpful to get it off my chest. It has been building up for a long time. I am feeling better being able to talk about it, feels like I kept my emotions bottled up in-side and still tears up. (she was tearful as she was talking about this)

71 The narratives that were provided for the first research question identified a common theme about how talking to someone and looking at their adversity could change their emotions about their experience of having their child in cancer treatment. The children of participants 1-7 had completed treatment within 1-3 years, and participant 8’s child was in the last chemotherapy session. The seven that had children who completed treatment had to look back on their behaviors and emotions while the final participant still had reactions and emotions ongoing. The researcher noticed that the participants that had children who completed treatment were less emotional during the interview and the participant whose child was close to completion was more emotional and expressed assistance during the interview. Research question 2: What were the parents’ adverse events? Two themes emerged from the interview questions the first theme was afraid of death, with two subthemes, afraid for the child and school environment. The second theme was afraid of losing child themselves. Two participants were afraid of death, five parents were afraid for their child and their fear of death, one was afraid of the school environment and her child dying due to the length of her child’s treatment and needing to attend school while receiving treatment. The parent that expressed the school environment as fear of death did so because her daughter got very ill within the first three months of attending school due to their not adhering to the protocols that were to be followed. All eight participants expressed being afraid of losing their child as their adversity. The researcher noticed that all participants expressed an overwhelming concern about their child dying from cancer and knowing that they could not show this fear to their child. The table below has each theme, sub-themes and participant response in graph format:

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Figure 6: Sub-themes of themes two and three, by participant The following are excerpts from the interviews for Theme two and three when asked about their adverse event the following are the responses: Participant 1 stated, “I was afraid of my son passing away or getting sicker, it made her feel weak as a parent. I felt weak and realized that I had to think positive and be a strong parent.” Participant 2 said: I was scared he was going to die, he is my only biological son, I was also scared for him as well, what was he going to think about it. We also had to move from our house to an apartment because it was too expensive with the medical bills. We just moved to a house about a year ago. Participant 3 stated, “I was very scared and depressed, I was mad at God” and Participant 4 noted that, “I was afraid he would die of cancer; my wife was more scared than I was.”

73 Participant 5 stated: I was afraid she would die, especially when she was first diagnosed, I had a strong faith which helped me. I was mad at my daughter and am still angry with her, she was using drugs and should have thought about her daughter. I was worried, stressed about how I was going to get to the clinic, I lived in Beaumont at the time. I was not working and was in cancer treatment myself at the same time. Finances were hard I did not have the income to pay for much except trying to eat healthily. And participant 6 said, “The school environment for my child was my adversity, she got sick three different times within three months and had to change schools three times until the last school finally adhered to the protocols for her being in school.” Participant 7 stated: I was only worried about what the next step was. I have had so many things happen to me that year that I just thought about god and that she was going to pull through. I thought that it could be worse, and a parent never thinks that their child is going to die. I was not planning on her dying, I had to see her go through it and cry alone in the shower. Participant 8 stated: My adversity was I had to stop working and move back with my mother and father to take care of my daughter. I shut down at first, I was home by myself, cried a lot and did not know what the outcome was going to be. It was so hard to watch her lay in her bed so sick and not be able to play with other kids.

74 All the participants’ adversities had to do with their fear of their child dying, one participant stated the adversity was the school environment although that was still because of their fear of their child getting sick and dying. Three participants discussed their change in living due to their child’s treatment either because of the location of treatment or from the amount of money it took. The overwhelming concern of their child’s impending death after their diagnosis of cancer reached saturation. Research Question 3: How did they experience distress? One theme emerged, had to be strong, with three subthemes, had to be strong for their child, had to be strong for self and another parent and communicated with the staff for direction. The participants’ statements are provided to document how the themes and sub- themes were determined and how their lived experiences were interpreted.

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Figure 7. Sub-themes of theme four, by participant The following are excerpts from Theme four, with the three sub-themes when asked about how they experienced this adverse event: Participant 1 stated, “I did not want to be weak, I know I had to be strong for my child, if you are negative you create negative cells, if you are positive you create positive cells, I had to be positive.” Participant 2 stated, “Treatment lasted two years, I just did what the Dr. and staff told me to do. I knew that if I did not do what the Dr. and staff said bad consequences would happen. Participant 3 said, “I was very scared and depressed, I was mad at God.” Whereas participant 4 stated, “My wife was more scared, I was scared but not like my wife.” Similarly, participant 5 noted, “I was angry, worried, stressed, I was worried when my granddaughter did not want to live anymore” and participant 6 stated: Her illness and how she was at treated at school was my focus. She had to go back to school because her treatment lasted so long. I was a teacher and did not

76 understand how schools could not follow protocols. I was expecting for things to go well, but they did not until I changed schools for the third time. Participant 7 noted: It could have been worse; more people are going through a lot worse than I was. My family was there for me., my sister helped me, and the Drs. were supportive, I never got a bad vibe. The Dr. would talk to her privately which made her feel better. Participant 8 stated, “My feelings are still all over the place; I cry every time I talk about it. I keep my feelings bottled up inside. I am still emotional every time I talk about it is hard.” Had to be strong is theme four although had to be strong for child was a much stronger sub-theme that occurred six times in the participants’ statements, had to be strong for themselves occurred four times. Communication with staff was the third subtheme and only occurred three times although still was an important consideration. Figure 8 below is an accumulation of all themes with their strength, showing the grouping and how this researcher used the data to determine the importance of the lived experiences of the participants (Kerr, Nixon, & Wild, 2010).

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Figure 8. Strength of themes Evaluation of Findings The findings of the study are reported in this section of the chapter. Eight participants who were parents of children that had cancer or were within a month of cancer treatment completion provided the lived experiences for this study. Eight participants are an appropriate number for an interpretive phenomenological analysis (Smith & Shinebourne, 2012). Participants’ were recruited through the site with the physician handling the participant referral information for this researcher. Ten potential participants were contacted by this researcher and eight made their scheduled appointments with several attempts to reschedule the two missing participants although neither showed for their rescheduled appointments. The results of this study were interpreted in light of the theoretical framework of cognitive behavioral theory specifically the techniques of reframing beliefs. The three primary theoretical perspectives explaining cognitive behavioral theory are:

78 1) how cognition affects behavior, 2) how cognitive activity can be monitored and altered, and 3) how the desired behavior change can be accomplished through cognitive activity (Dobson, 2009). How cognition affects behavior has been demonstrated by researchers, and we now know that how a person thinks about an event can change the behavior (Dobson, 2009). Researchers continue to work on specific changes that can alter a cognitive process and ultimately change behaviors (Dobson, 2009). How cognitive activity can be monitored and altered implies that when we can understand our thinking, we can change our thinking (Dobson, 2009). Researchers continue to work on understanding cognitive activity and interventions to alter thinking (Dobson, 2009). Desired behavior change can be accomplished through cognitive activity. Desired behavior change can happen because of the shift in thinking. Cognitive behavioral theorists understand that there are several ways to change behavior and change in thinking is one of those ways (Dobson, 2009). Cognitive behavioral theory explains the reframing of beliefs for those under extreme levels of stress (Kleim et al., 2012). The reframing of beliefs is classified as a cognitive restructuring method that changes emotion and behaviors (Dobson, 2009). The reframing of (core) beliefs begins the process of cognitive restructuring which changes emotion and behavior (Beck, 2011; Dobson, 2009). The reframing of beliefs is utilized for many types of disorders to improve the emotional status and behaviors of patients (Hofmann et al., 2012). Themes. The participants lived experience responses to the interview questions as parents of children who had cancer or within one month of completion provided four

79 important themes. The findings were assessed through the theoretical framework of cognitive behavioral theory specifically reframing beliefs. A reframing beliefs exercise (Appendix A) was developed for use by health professionals (Kazak, 2005). Parents were provided the exercise to complete and or review that was adapted from the Surviving Cancer Competently-Newly Diagnosed manual (Kazak, 2005). Immediately following the participant reading of the exercise and or completing, the interview questions were utilized to obtain responses to their lived experience of the phenomena of experiencing the reframing beliefs exercise. The four significant themes were: the worksheet was helpful with sub-themes of; did read it, didn’t read it and went from negative to positive. The theme afraid of death had two sub-themes of afraid for child and school environment. The theme afraid of losing child themselves did not have a sub theme. The theme had to be strong had three sub-themes of; had to be strong for child, had to be strong for self and another parent and communicated with the staff for direction. Cognitive behavioral theory specifically reframing beliefs is described by Clark (2013) as a reframing of beliefs and cognitive restructuring as a method that helps to change beliefs and thinking and has research studies conducted that have demonstrated effectiveness. The reframing of (core) beliefs begins the process of cognitive restructuring which changes emotion and behavior (Beck, 2011; Dobson, 2009). The reframing of beliefs is utilized for many types of disorders to improve the emotional status and behaviors of patients (Hofmann et al., 2012). In a search of ProQuest, EBSCOhost, Sage Publications, and PsychoInfo databases from 2009 to 2016 did not find peer-reviewed articles about the lived experiences of parents with children who had cancer or within one month of completion

80 who has completed or read a reframing beliefs exercise. In the study by Kazak (2005) the reframing beliefs exercise was used although was not reported separately or with a lived experiences methodology. The worksheet was helpful. All participants stated this similar statement when asked about their experience with the exercise. This finding is supported by the intervention of Surviving Cancer Competently Program with adolescent cancer survivors (Kazak et al., 1999). This intervention utilized the theory of cognitive behavior change and reframing beliefs around the adversities of the pediatric trauma. Kazak et al. (1999) concluded that there was a reduction in intrusive thoughts of parents, and more distressed families might have had more significant benefits. The participants lived experiences indicated that if they had gotten this exercise earlier in their child’s treatment, they could have benefited from it. The sub-theme of went from negative to positive indicated that the participant could see how over time as their child improved the adversity and their actions changed the adversity from a negative to a positive. Mullins et al. (2012) stated symptoms and symptom relief for families from an intervention need to occur within the first year of their children’s cancer treatment and would have a greater impact on reducing stress-related symptoms. Afraid of death. Over half, 63% of the participants responded that they were afraid of death, although the two sub-themes divided the responses into; afraid for their child and school environment. The afraid for their child was about how their child would react and be fearful of death and the school environment was still focused on being afraid of death because of the school environment and their child dying from the schools’ lack of adherence to protocols to keep their child safe. Hildebrand et al. (2011) discussed four

81 areas of stressors that parents experienced, the cancer treatment and its side effects, distressing emotions, disruptions in daily routines and social challenges. The study participants responses were indicators of how their stressors were manifested. Afraid of losing child themselves. All participants responded that they were afraid of losing their child. The theme of being afraid of losing their child is different from the other theme about their child experiencing fear of death. The diagnosis of cancer in the past meant no cure when a parent of a child was told “Your child has cancer”; and despite treatment improvements, these feelings prevail. The diagnosis of cancer produces high levels of parental stress (McCarthy, Ashley, Lee, & Anderson, 2012). Had to be Strong. This theme had to be strong was divided up into three subthemes of strong for self, strong for child and communicated with staff for direction. The theme had to be strong, had 25% responses, the sub-theme of strong for child 75% responses and strong for self-had 50% and the communicated with staff for direction 38%. Participants statements indicated that they felt they had to be strong for their child. The researcher found this theme to be interesting because these participants had children who survived cancer or were in remission and almost completed with treatment. Geist et al. (2014) discussed how parents’ emotional states were related to child behavior problems. The stress level and negative feelings of the parents were indicators of the child’s behaviors during treatment (Geist et al., 2014). Hoekstra-Weebers et al., (2011) found optimism to have a direct relationship to distress. The communicated with staff for direction is associated with Gibbins, Steinhardt, and Beinart (2012) who found the healthcare professional’s role to be crucial. Health care professionals could provide the

82 parents’ clear directions, help parents feel in control, and acknowledge the cultural and gender roles. Analysis of the information provided by the lived experiences of the participants’ cognitive behavioral theory specifically reframing beliefs was helpful and could have been helpful earlier in their child’s cancer treatment. The adverse event for all participants was the fear of losing their child. All participants felt they had to be strong. The exercise helped the participants look at their adverse event and see how their actions changed their beliefs as expressed by their responses. The results obtained were expected, the one area that was unexpected was the theme of afraid for child and how they would react. Geist et al. (2014) discussed how parents’ emotional states were related to child behavior problems although this researcher did not find literature about the parents’ fear of how their child would react to their treatment. Summary The findings of this study emphasize the significance of the adversity that a parent experiences with the fear of losing their child who is in cancer treatment. Landolt et al., (2011) stated that pediatric cancer is different than other illnesses; the long-term treatment regimen and the uncertainty of the outcomes, including death, make distress greater for families than those families who experience other illnesses with their children. The participants lived experiences provided their adversities and how they experienced the cognitive behavioral exercise using reframing beliefs. All participants lived experience responses stated they benefited from the exercise. Beck (2011) and Dobson (2009) noted that reframing of (core) beliefs begins the process of cognitive restructuring which changes emotion and behavior.

83 The following figure is the lived experiences of all the participants’ themes and subthemes in a qualitative cloud format, the larger the font the more occurrences:

Figure 9. Lived experiences cloud

84 Chapter 5: Implications, Recommendations, and Conclusions Cancer treatment for children is a medical procedure that influences physical and emotional responses of the children and their parents (Landolt et al., 2011). Available interventions designed to decrease parental distress have been outcome-focused (Kleim, et al., 2013). Reframing beliefs are classified as cognitive restructuring method (Dobson, 2009). The reframing of (core) beliefs is the approach that begins the process of cognitive restructuring (Beck, 2011). The problem is that we do not know what lived experiences of parents are when their beliefs are reframed, and therefore are unable to develop emerging themes for further study (Shields et al.,2012). Up to now summative evaluations of interventions have not been grouped by the type of intervention (Kleim et al., 2013) and as a result, there is no information about how specific interventions, such as reframing beliefs, may result in the reduction of parental distress (Shields et al.,2012). The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress (Reeder, 2010). Participants included eight volunteer parents whose children are completed with cancer treatment or close to completion. Semi-structured interviews were conducted and recorded by the researcher. The participants’ responses were used to explore the phenomenon of their lived experience while using the reframing beliefs tool (Englander, 2012). The semi-structured interviews took place at the University of Texas Medical Branch Pediatric Cancer Center, Dickinson, Texas.

85 Participants included eight volunteer parents whose children are within the first six months of cancer treatment. Semi- structured interviews will be conducted and recorded by the researcher. The participants’ responses were used to explore the phenomenon of their lived experience while using the reframing beliefs tool (Englander, 2012). The semi-structured interviews took place at the University of Texas Medical Branch Pediatric Cancer Center, Dickinson, Texas. Potential limitations included limitations to the completeness of the responses to the semi-structured interview questions. Conditions occurring at the time of the interview could limit the responses given. Conditions that could occur are unexpected weather disturbances causing hardship on participants, unexpected medical emergencies that could cause additional stress. The researcher asked, as a part of the semi-structured interview, if any other stressors are happening in their lives. If the participant expressed one of the mentioned stressors, then he or she had the option of continuing the interview with comments on the stressor taken by the interviewer, delaying the interview, or discontinuing participation. No additional stressors were indicated by the participants at the time of the semi-structured interview. Recordings were transcribed, and qualitative analysis software was used to evaluate participant responses to explore the phenomenon of their lived experience and identify emerging themes concerning the route by which beliefs change and distress is reduced (Englander, 2012). Protecting participant safety (APA, 2014) and ethical standards within APA (2014) standards and Northcentral University IRB guidelines was the focus throughout this study; collaboration with social work staff or behavioral health personnel at the study locations was established during the initial approval of this study.

86 Written and verbal information was given to participants about the study, consents were read and signed prior to the interviews. Participants were told that they could stop at any time during the interview, ask questions or discontinue the interview. Information about anonymity was discussed and participants were told their information would have no distinguishing features. Participants were told that all information would be stored on a password-protected computer and locked inside a file cabinet that only the researcher had access too. Participant distress was monitored in collaboration with the staff at the study sites. The site determined participant availability. Efforts were made to record the responses of participants accurately and obtain enough data to achieve saturation or when nothing new is being stated. To reach saturation or when nothing new is being stated, I compared and grouped similar responses (Kerr, Nixon, & Wild, 2010). Participant responses were used to discover the phenomenon of their lived experiences. Their lived experience is the critical focus of this interpretive phenomenological design (Englander, 2012). A brief review of the problem statement, the purpose, method, limitations, and ethical dimensions were discussed in this chapter. Specific participant information was discussed which applied to each of the areas reviewed in this chapter. Implications Cancer treatment for children is a medical procedure that influences physical and emotional responses of the children and their parents (Landolt et al., 2011). Interventions available to decrease parental distress have been outcome focused and measured the summative outcomes of the interventions at completion and not the specific outcomes of a theory or technique (Warner, et al., 2011). This study added to the literature of what is known about the lived experiences of parents who had children in cancer treatment and

87 their experiences with a cognitive behavior theory of reframing beliefs. Williams, McCarthy, Eyles and Drew (2013) stated, “Further research is needed in this area to ensure the understanding of the experiences of parents and how to best support them.” (p. 264). Three research questions were created to direct this study and used to evaluate the information collected during the participant interviews. Evaluation of the information provided four themes that were derived from the participants’ lived experience during the interview. The identified themes serve as the foundation for the implications. Research Question 1 What are the lived experiences of parents of pediatric cancer patients when using the reframing beliefs exercise (Appendix A) from Kazak study (Kazak, 2005)? The participants’ discussed their lived experiences after reading or completing the reframing beliefs exercise which participants focused on their experiences during their child’s cancer treatment. One theme was identified: the worksheet was helpful. Three sub-themes were identified, did read it, didn’t read it and went from negative to positive. Implication 1: The worksheet was helpful. All participants found the reframing exercise helpful, Kazak et al., (1999) used the exercise reframing beliefs as part of the intervention to assist parents and children and concluded that symptoms of posttraumatic stress and anxiety had decreased upon completion of the intervention. Participants discussed their child’s adversity during their lived experiences, one participant who had their child completing treatment the day of the interview stated that if they would have had this exercise used with them they would have felt better, they felt that they have had to keep all their emotions bottled up inside. Participants found the exercise to help them

88 look at the adversity and see what they did to change their emotions from negative to positive. The reframing of (core) beliefs begins the process of cognitive restructuring which changes emotion and behavior (Beck, 2011; Dobson, 2009). All but one participants’ child had completed treatment one year and beyond, even after that time frame they all stated they were surprised that they were still emotional about that period in their life. The length of the time between completion of treatment and this study may have produced a limitation due to the memory of the emotions and events. The subthemes identified from the lived experiences of the parents were used to reveal any additional data that might have added to the central theme. All but one parent read the exercise, that one parent may not have been able to read English although did not state this during the interview. The negative to positive was stated by participants who were able to look at the exercise overall and realize that they had changed their own thoughts about their experience with their actions to the adversity they were experiencing. Hofmann et al. (2012) stated that reframing of beliefs is utilized for many types of disorders to improve the emotional status and behaviors. The reframing beliefs exercise is a useful tool in helping parents decrease and reframe their perception of their adversity experienced during their child’s cancer treatment. Research Question 2 What were the parents’ adverse events? The first interview question was; what was the adverse event you chose that is related to you being a parent of a child with cancer? This specific question gave the participants’ the opportunity to look at their own experiences and reflect on their adverse event. Two themes were identified, the first theme afraid of death was identified from the

89 lived experiences of the participants’ responses with two sub-themes, afraid for child and school environment. The second theme afraid of losing child themselves was a theme that was stated by all participants. Implication 2: Afraid of Death and Being afraid of losing their child themselves. Parents expressed their adverse event as afraid of death, pediatric cancer is different than other illnesses; the long-term treatment regimen and the uncertainty of the outcomes, including death, make distress greater for families than those families who experience other illnesses with their children (Landolt, et al.,2011). Participants continued to give different lived experience responses that were indicating that another theme was emerging. Two sub-themes were found to be significant from the lived experience responses of the participants, afraid for child and school environment. The sub-theme afraid for child related to the parent is afraid that their child would begin to think that they would die and not know how to respond back to their child. The school environment was the adversity due to the parent needing to protect their child when they returned to school. The protocols the parent outlined to help keep their child safe from germs at school due to a compromised immune system were not followed. The parent had to move their child to three schools until one was able to meet their child’s needs. The theme afraid of death was related specifically to the reactions of the child and the parents’ responsibility to assist them. Bally et al., (2014) found that the ups and downs of treatment were common and created a chaos narrative that parents had to learn to cope with, one of those was the unknown. Being afraid of losing their child themselves was expressed by all participants. McCarthy et al. (2012) found that the diagnosis of cancer in the past meant no cure.

90 Because of the high levels of stress that parents feel, this creates high levels of parental stress even though treatment improvements exist today. This fear of the participant losing their child was a significant theme. Research Question 3 How did they experience distress? The second interview question, how did you experience this adverse event, produced one theme, had to be strong and three sub-themes that emerged from the participants lived experiences of how they experienced their distress. The sub-themes that emerged were, had to be strong for child, had to be strong for self and another parent and communicated with the staff for direction. Implication 3: Had to be strong. Had to be strong for child was supported by participants ‘statements indicating that they felt they had to be strong for their child. The sub-themes had to be strong for the child and had to be strong for self and another parent was directly associated with concern for their emotional states and understanding that this would impact their child. Geist et al. (2014) discussed how parents’ emotional states were related to child behavior problems. The stress level and negative feelings of the parents were indicators of the child’s behaviors during treatment (Geist et al., 2014). HoekstraWeebers et al., (2011) found optimism to have a direct relationship to distress. The communication with staff for direction is associated with Gibbins et al. (2012) who found the healthcare professional’s role to be crucial. Healthcare professionals could provide to the parents’ clear directions, help parents feel in control, and acknowledge the cultural and gender roles.

91 Analysis of the information provided by the lived experiences of the participants’ cognitive behavioral theory specifically reframing beliefs was helpful and could have been helpful earlier in their child’s cancer treatment. The adverse event for all participants was the fear of losing their child. All participants felt they had to be strong. The exercise helped the participants look at their adverse event and see how their actions changed their beliefs as expressed by their responses. Geist et al. (2014) discussed how parents’ emotional states were related to child behavior problems although this researcher did not find literature about the parents’ fear of how their child would react to their treatment. The findings of this study help to identify the main problem of not knowing what the lived experiences of parents are when their beliefs are reframed (Shields, Chawla & Meadors, 2012). The purpose of the study to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress was directly associated with research question 1. Current literature and researchers have examined interventions with parents of children who had cancer treatment although a gap existed with the lived experiences when their beliefs are reframed. The significance of the study addresses the gap in the literature and provides an opportunity to examine parents who had children in cancer treatment lived experiences after experiencing a reframing beliefs exercise. Recommendations The qualitative interpretive phenomenological analysis focused on the lived experiences of parents who had children in cancer treatment or within one month of

92 completion and their lived experiences after completing a reframing beliefs exercise. This researcher’s analysis of the findings suggested that the reframing beliefs exercise produced changes in the perceptions of the parents’ adverse event and assisted them in looking at their actions and outcomes. Up to now, there has been no specific information about how reframing beliefs could result in decreasing parental distress (Shields, Chawla & Meadors, 2012). Practical applications. The findings of this study may provide several practical applications. The discovery of the themes from this study may provide information that will help researchers in understanding how to assist parents in decreasing their distress. The findings of this study may provide researchers knowledge and usability to improve interventions designed to reduce parental distress in parents whose children receive cancer treatment. Theoretically, the results from this study may contribute to an understanding of the processes by which reframing of beliefs can alter cognitive perspectives resulting in the reduction of emotional distress that accompanies the original beliefs (Shields, Chawla & Meadors, 2012). Recommendations for future research. Based on the findings of this study, continued research on the phenomenon of parents whose children are in cancer treatment using a reframing beliefs tool is needed. The parent whose child was in the last treatment stated that using the reframing beliefs exercise helped her feel better during the interview, and she felt as if she had had all her emotions bottled up. The parents whose children were completed with treatment one year and beyond acknowledged that they had to look back at that time frame in their lives

93 which was hard to do, many stated they had forgotten how important those feelings were. Another recommendation would be to use these study findings to implement outcome measurement utilizing the reframing beliefs exercise for parents of children in cancer treatment (Nilsen, 2015). Gaining the information using an outcome measurement would provide quantitative data to understand the significance of the reframing beliefs exercise further. Conclusions The purpose of this interpretive phenomenological inquiry was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress. The study focused on the lived experiences of parents whose children had been in cancer treatment and or were in the last month of completion of treatment after completing a reframing beliefs exercise. The participants’ responses were used to explore the phenomenon of their lived experience while using the reframing beliefs tool (Englander, 2012). Themes were identified using the procedures described by Pietkiewicz and Smith (2014) as intensive and taking the time to evaluate the information received during the interviews. Reframing beliefs was the theoretical perspective used in this study. The study consisted of eight parents whose children had been in cancer treatment and or were in the last month of completion of treatment. Findings of the study revealed that all participants felt that the worksheet exercise of reframing beliefs was helpful and how their feelings of adversity went from negative to positive. The findings of this study were in congruence with literature on how cognition affects behavior. Dobson (2009)

94 demonstrated that how a person thinks about an event can change the behavior. Additional findings were found which included information on the adverse events and how distress was experienced. Afraid of death was a theme that was broken out into two sub-themes of afraid for child and school environment; both were like the fear of the unknown as described by Bally et al., (2014). Afraid of losing their own child was a theme that was a lived experience response of all participants, even though treatment advanced in child pediatric cancer treatment has advanced the old thought of no cure still impacted the participants in this study (McCarthy, Ashley, Lee and Anderson, 2012). The theme had to be strong was the response to the question about how the participants experienced distress, three sub-themes emerged. Had to be strong for child, had to be strong for self and another parent and communication with the staff for direction were identified with importance. The stress level and negative feelings of the parents were indicators of the child’s behaviors during treatment (Geist et al., 2014) which helped to understand how being strong for the child, self and another parent was supported by the lived experiences. The last sub-theme of communication with staff for direction was a lived response that is supported by Gibbins, Steinhardt, and Beinart (2012) who found the healthcare professional’s role to be crucial. This interpretive phenomenological analysis was to discover how formative assessment can be effectively used to understand the route by which a reframing beliefs exercise could result in changing perceptions and beliefs, which is a strategy that might reduce distress. The findings identified emerging themes from the lived experiences of parents whose children had been in cancer treatment and or were in the last month of completion of treatment. This study contributed to a gap in the literature which may aid

95 in future research that will affect the additional understanding of how a reframing beliefs exercise could change and benefit parents whose children are in cancer treatment.

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106 Appendices

107 Appendix A: Participant Exercise

Adversities – Beliefs - Consequences (ABC) Worksheet Instructions: Without realizing it, our thoughts and beliefs about a distressing problem often determine how we feel, what we do, and how we interact with others. When we are upset, it is often helpful to slow down and understand this process. Select a problem or adversity that is upsetting you. Identify and list the thoughts or beliefs that you tell yourself (in your head) about the problem. Next, identify the impact (consequences) of the adversity and your thoughts / beliefs on your feelings (about yourself and others), on your actions and behaviors, and on your relationships. Once you have done this, see if you can identify other, more helpful thoughts or beliefs about the problem. If you can, do the new, more helpful beliefs improve how you feel, what you do, and how you interact with others? Reprinted with permission from Center for Pediatric Traumatic Stress (CPTS). Copyright (2014).

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Appendix B: Informed Consent Form Consent My name is Marcia Baker. I am a doctoral student at Northcentral University. I am conducting a research study which looks at strategies that parents whose children were in cancer treatment might use to assist them. I am completing this research as part of my doctoral degree in Health Psychology. I invite you to participate. Activities: If you participate in this research, you will be asked to: 1.

Read a document and answer a few questions, 30-45 minutes.

Eligibility: You are eligible to participate in this research if you: 1. Are an adult parent of a child, 0-18 years of age that has been diagnosed with cancer and has completed treatment or is within one month of completion. You are not eligible to participate in this research if you: 1.

Have not had a child in cancer treatment.

2. Your child has not completed treatment or is not within one month of completion of treatment. I hope to include 10 participants in this research. Risks: There are greater than minimal, risks in this study. Some possible risks include: distressful feelings. To decrease the impact of these risks, you can: stop participation at any time, and/or, refuse to answer any interview question. You will be given resources and referrals if you need further support after the interview. Benefits: If you decide to participate, there is no direct benefit from participating in the study. The potential benefits to others are: the findings of this study could help other parents in the future. Confidentiality: The information you provide will be kept confidential to the extent allowable by law. Some steps I will take to keep your identity confidential are:

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The people who will have access to your information are: myself, my dissertation chair, and my dissertation committee. I will secure your information with these steps: locking it in a filing cabinet, locking the computer file on my computer with a password. I will keep your data for 7 years. Then, I will delete electronic data and destroy paper data. Contact Information: If you have questions for me, you can contact me at: [email protected] My dissertation chair’s name is Dr. Nancy Lees, [email protected]. She works at Northcentral University. You can contact her at: 602-920-7521. If you have questions about your rights in the research, or if a problem has occurred, or if you are injured during your participation, please contact the Institutional Review Board at: [email protected] or 1-888-327-2877 ext. 8014. Voluntary Participation: Your participation is voluntary. If you decide not to participate, or if you stop participation after you start, there will be no penalty to you. You will not lose any benefit to which you are otherwise entitled. Signature: A signature indicates your understanding of this consent form. You will be given a copy of the form for your information. Audiotaping: I would like to use a voice recorder to record your responses. You can still participate if you do not wish to be recorded. Please sign here if I can record you:

Participant Signature

Printed Name_________________Date________

Researcher Signature

Printed Name_________________Date________

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Appendix C: Permissions to Use Figures Figure 1 22 October 2015 Dear Marcia Baker, Material requested: Figure 1 from Marta Tremolada , Sabrina Bonichini , Simone Schiavo & Marta Pillon (2012) Post-traumatic stress symptoms in mothers of children with leukaemia undergoing the first 12 months of therapy: Predictive models, Psychology & Health, 27:12, 1448-1462 Thank you for your correspondence requesting permission to reproduce the above-mentioned material from our Journal in your printed thesis and to be posted in your university’s repository - Northcentral University. We will be pleased to grant entirely free permission on the condition that you acknowledge the original source of publication and insert a reference to the Journal’s web site: www.tandfonline.com Please note that this license does not allow you to post our content on any third-party websites or repositories. Thank you for your interest in our Journal. Yours sincerely Lee-Ann Lee-Ann Anderson – Permissions & Licensing Administrator, Journals Routledge, Taylor & Francis Group 3 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN, UK. Tel: +44 (0)20 7017 7932 Fax:+44 (0)20 7017 6336 Web: www.tandfonline.com e-mail: [email protected]

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Figure 2 TERMS AND CONDITIONS Oct 09, 2015 This is a License Agreement between Advanced Training Third Coast Marcia Baker ("You") and Elsevier ("Elsevier") provided by Copyright Clearance Center ("CCC"). The license consists of your order details, the terms and conditions provided by Elsevier, and the payment terms and conditions. All payments must be made in full to CCC. For payment instructions, please see information listed at the bottom of this form.

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Supplier Elsevier Limited The Boulevard,Langford Lane Kidlington,Oxford,OX5 1GB,UK Registered Company Number 1982084 Customer name Advanced Training Third Coast Customer address 50 Eagle ct. SPRING, TX 77380 License number 3724971213870 License date Oct 09, 2015 Licensed content publisher Elsevier Licensed content publication Behaviour Research and Therapy Licensed content title Cognitivebehavioral therapy for hypochondriasis/health anxiety: A metaanalysis of treatment outcome and moderators Licensed content author Bunmi O. Olatunji,Brooke Y. Kauffman,Sari Meltzer,Michelle L. Davis,Jasper A.J. Smits,Mark B. Powers Licensed content date July 2014 Licensed content volume number 58 Licensed content issue number n/a Number of pages 10 Start Page 65 End Page 74 Type of Use reuse in a thesis/dissertation Intended publisher of new work other Portion figures/tables/illustrations Number of figures/tables/illustrations 1 Format both print and electronic Are you the author of this No 10/9/2015 RightsLink Printable License https://s100.copyright.com/App/PrintableLicenseFrame.jsp?publisherID=70&publisherName=ELS&publication=00057967& publicationID=10389&rightID=1&ty… 2/6

Elsevier article? Will you be translating? No Original figure numbers Figure 4 page 71 Title of your thesis/dissertation The Phenomena of Decreasing Distress in Parents whose Children are in Cancer Treatment Expected completion date Feb 2016 Estimated size (number of pages) 140 Elsevier VAT number GB 494 6272 12 Permissions price 0.00 USD VAT/Local Sales Tax 0.00 USD / 0.00 GBP Total 0.00 USD

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Figure 3 Reprinted from American Psychologist. 70/2, 148-158, Kazak, A. E., & Noll, R. B. The integration of psychology in pediatric oncology research and practice: Collaboration to improve care and outcomes for children and families. Page 152 Copyright (2015) with permission from American Psychological Association no written permission needed. Figure 4 Evaluation and program planning Order detail ID: 69396851 Order License Id: 3778341057912 ISSN: 0149-7189 Publication Type: Journal Publisher: PERGAMON Permission Status: Granted Granted Permission type: Republish or display content Type of use: Thesis/Dissertation Hide details Requestor type Academic institution Format Print Portion chart/graph/table/figure Number of charts/graphs/tables/figures 1 Title or numeric reference of the portion(s) Figure 1 Title of the article or chapter the portion is from Updating the FORECAST formative evaluation approach and some implications for ameliorating theory failure, implementation failure, and evaluation failure Editor of portion(s) N/A Author of portion(s) N/A Volume of serial or monograph N/A Issue, if republishing an article from a serial 38 Page range of portion 14 Publication date of portion 2013 Rights for Main product Duration of use Life of current edition Creation of copies for the disabled no With minor editing privileges no For distribution to United States In the following language(s) Original language of publication With incidental promotional use no Lifetime unit quantity of new product Up to 499 Made available in the following markets education The requesting person/organization Marcia Baker Order reference number Author/Editor Katz, J., Wandersman, A., Goodman, R. M., Griffin, S., Wilson, D. K., & Schillaci, M The standard identifier 1

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Title Updating the FORECAST formative evaluation approach and some implications for ameliorating theory failure, implementation failure, and evaluation failure Publisher Elsevier Expected publication date May 2016 Estimated size (pages) 1

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Appendix D: Interview Protocol The interview questions are designed to be used as guidelines to elicit rich descriptions of the participant’s lived experience and will serve as a tool to encourage discussion. Probing for specific examples may be necessary to reveal more information about the participant’s views of what their lived experience was upon completing the tool. (e.g., “Can you tell me more about that? Or how did you feel about that?”)

Interview Questions What was the adverse event you chose that is related to your being a parent of a child with cancer? How did you experience this adverse event? What thoughts did you have after you completed the worksheet? How was the worksheet helpful or not helpful? Can you tell me more about that? What did you think about as you were reading the worksheet, were there any other feelings that you had? What surprised you about this worksheet? Did the exercise change the way you viewed the adversity you were thinking about during the exercise? If so, how?

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Appendix E: Script for Physician

I am handing you a flyer about a study you might be interested in. The study will only take 30-45 minutes. It is up to you if you want to do it. It could help other parents in the future. Please call the person on the flyer or email if you want to find out more about it.