Interventions to Promote Well-Being in Parents of ...

Rev J Autism Dev Disord https://doi.org/10.1007/s40489-017-0123-3

REVIEW PAPER

Interventions to Promote Well-Being in Parents of Children with Autism: a Systematic Review Rebecca Frantz 1

&

Sarah Grace Hansen 2 & Wendy Machalicek 3

Received: 25 September 2016 / Accepted: 27 October 2017 # Springer Science+Business Media, LLC 2017

Abstract Parents of children with autism spectrum disorder (ASD) experience unique challenges in performing their caregiving roles, often experiencing greater levels of parental stress than other parents. A systematic review of the literature on interventions to improve parental well-being among parents of children with ASD was conducted using three electronic databases (ERIC, PSYCHINFO, Medline) and a combination of key terms. Forty-one of the included studies were coded according to participant characteristics, intervention characteristics, outcome measures, and study quality. The following research questions were examined: (1) What type and format of interventions have been used to improve parental outcomes among parents of children with ASD? (2) What interventions have been most effective in improving parental outcomes? (3) How strong is the evidence base for interventions aimed at improving parental outcomes? Gaps in the literature, future directions for research, and implications for practice will be considered.

Electronic supplementary material The online version of this article (https://doi.org/10.1007/s40489-017-0123-3) contains supplementary material, which is available to authorized users. * Sarah Grace Hansen [email protected]

1

Department of Special Education, University of Illinois at Urbana-Champaign, Champaign, IL 61820, USA

2

Department of Educational Psychology, Special Education and Communication Disorders, Georgia State University, 852 CEHD, 30 Pryor St., Atlanta, GA 30303, USA

3

Department of Special Education and Clinical Sciences, University of Oregon, Eugene, OR 97403, USA

Keywords Parental stress . Parental well-being . Caregiver burden . Parental self-efficacy . Parental depression . Autism spectrum disorder

Raising a child is uniquely rewarding and challenging for any parent (Crnic and Greenberg 1990; Cameron et al. 1991). The unique demands related to the parenting role can often lead to parental stress (Deater-Deckard 1998; Plant and Sanders 2007). Stressed parents are less able to engage in positive coping strategies to maintain adaptive family functioning (Blackledge and Hayes 2006; Higgins et al. 2005). Parent surveys indicate that the responsibility of caring for a child may have an additive effect to any other stressors in an adult’s life. In addition to balancing other social roles and obligations, parents must cope with the economic and emotional requirements of being a parent (Abidin 1990; Deater-Deckard 1998). Although parents of children with disability note positive experiences related to raising a child with special needs, parents of children with developmental disabilities experience higher levels of child-related stress than parents of typically developing children (Baker et al. 2002; Dumas et al. 1991; Rodrigue et al. 1990; Tomanik et al. 2004). These parents may experience additional stress due to unique demands such as scheduling multiple appointments with various professionals, having to commit time and energy to parent-implemented intervention, and the economic burden of providing special resources for their child (Lavelle et al. 2014; Sawyer et al. 2010; Sharpe and Baker 2007). Parents of children with significant disabilities such as autism spectrum disorder (ASD) face additional challenges not experienced by other parental groups (Falk et al. 2014). When compared to parents of typically developing children and children with other developmental delays, parents of children with ASD often experience more parenting stress (Hayes and

Rev J Autism Dev Disord

Watson 2013; Hoffman et al. 2009; Eisenhower et al. 2005; Estes et al. 2009; Pisula 2007), higher reported frequencies of depression and anxiety (Dumas et al. 1991; Eisenhower et al. 2005; Olsson and Hwan 2001), reduced overall well-being (Blacher and McIntyre 2006), and diminished perceived parental competency (Hastings and Taunt 2002; Giallo et al. 2013; Kuhn and Carter 2006). Additionally, increased parental stress tends to be chronic (Dyson 1993; Rodrigue et al. 1990), negatively impacting overall parental health and well-being. Moreover, mothers and fathers may experience comparable levels of stress (Hastings and Brown 2002; Noh et al. 1989), suggesting that having a child with ASD may significantly impact both parents. Comorbid and associated behaviors of an ASD diagnosis can intensify stress among parents. For example, severe challenging behaviors have been identified in numerous studies as a risk factor for parental stress and mental health problems (e.g., Baker et al. 2002; Hastings et al. 2006; Lecavalier et al. 2006; Tomanik et al. 2004; Wolf et al. 1989). Parents have also reported social communication difficulties (Davis and Carter 2008) and restricted and repetitive behaviors (Gabriels et al. 2005) as characteristics contributing to their stress. Mothers and fathers report elevated stress linked to an inability to relate to their children (Dyson 1993; Koegel et al. 1992), suggesting that the characteristic social deficits associated with autism significantly impact parents. In addition, children with ASD are at greater risk for anxiety and depression, especially as they get older (Leyfer et al. 2006; Mayes et al. 2011; White et al. 2009). This may be an additional stressor for parents. The relationship between parental stress and child behavior appears to be bidirectional (Hastings and Johnson 2001; Hastings et al. 2006; Neece et al. 2012; Orsmond et al. 2003). High levels of challenging behavior contribute to increases in parenting stress over time and high levels of parenting stress contribute to increases in challenging behavior, implying that the two variables have a reciprocal effect on each other (Baker et al. 2002; Hastings and Johnson 2001; Orsmond et al. 2003; Neece et al. 2012). Parental stress has also been connected to less positive and sensitive parenting behavior, which is associated with greater challenging behavior among children (Abidin 1990; Crnic et al. 2005; Deater-Deckard et al. 2006). Parental stress among parents of children with ASD has significant clinical and research implications, since it can contribute to potential treatment outcomes (e.g., Davis and Carter 2008; Hastings and Brown 2002; Kuhn and Carter 2006; Lecavalier et al. 2006; Osborne et al. 2008). In previous research, stress among mothers has been associated with failure to participate in services (Brinker et al. 1994; Gavidia-Payne and Stoneman 1997) and fewer beneficial behavioral and developmental outcomes for children in early intervention programs (Osborne et al. 2008; Strauss et al. 2012). The relationship between parental well-being and both treatment participation and adherence is critical to the success of parent-

mediated interventions and parent-delivered services (Strauss et al. 2012). For the aforementioned reasons, it is critical to target parental stress in behavioral interventions for children with ASD and their families. Parents and caregivers are often the most consistent presence in a child’s life and therefore may have the greatest opportunity to influence the child’s development (Bruder 2000). Family-centered practices that focus on family outcomes in addition to child outcomes are associated with greater engagement with services, family satisfaction with services, family well-being, positive parenting practices, and improved health and developmental outcomes for children (Bailey et al. 2012). However, most behavioral interventions for children with ASD focus primarily on child outcomes, with minimal focus on parental outcomes such as stress and depression (Bailey et al. 1998; Mahoney et al. 1998). Although parent training has become common practice for providing intervention for children with ASD, the emphasis of this training is often singularly focused on managing child challenging behavior (Blackeledge and Hayes 2006). These services frequently center on the child’s support needs, and parents are typically taught specific strategies to support their child’s development with emphasis on the core characteristics of the syndrome. Parent training can lead to modest benefits in reducing parental stress through support and advice (e.g., Pisterman et al. 1992; Feldman and Werner 2002; however, most training programs are not developed to directly target parental outcomes, such as improved mental health (Dykens and Lambert 2013). Fortunately, there is a growing body of evidence for interventions to reduce parental stress and enhance parental wellbeing. Previous literature reviews (e.g., Hastings et al. 2006; Singer et al. 2007) have examined the literature on psychological interventions for parents of children with disabilities. For example, Hastings et al. (2006) considered the evidence for psychological interventions to remediate stress in parents of children with disabilities and suggested that standard service models (i.e., respite care, case management) contribute to decreased parental stress. In this selective review, the authors found the strongest evidence base for cognitive behavioral therapy (CBT), especially for the reduction of stress in mothers. Reviewed studies also indicated the possible value of parent-led support networks. Singer et al. (2007) conducted a meta-analysis of group intervention research in an effort to characterize the efficacy of treatments in reducing depressive symptoms and other forms of psychological distress in parents of children with developmental disabilities. The authors suggested that CBT was consistently effective in reducing parental stress in the six studies reviewed. In addition, multicomponent interventions were found to be more effective than behavioral parent training or CBT alone. In another systematic literature review, Cachia et al. (2016) evaluated the efficacy of mindfulness-based interventions for reducing stress and increasing psychological well-being in


parents of children with ASD but did not review the evidence for other types of interventions. To the authors’ knowledge, there are no current systematic reviews with a more comprehensive focus on psychological interventions for parents of children with autism specifically. Therefore, the purpose of the present review is to examine the evidence base for any type of intervention that targets parental well-being as a primary outcome. The present systematic literature review addresses the following a priori research questions: (1) What type/format of interventions has been used to improve parental outcomes among parents of children with ASD? (2) What interventions have been most effective in improving parental outcomes among parents of children with ASD? (3) How strong is the evidence base for interventions aimed at improving parental outcomes among parents of children with ASD?

Methods Search Procedures The first and second authors conducted systematic searches using three electronic databases: PsychInfo, Education Resources Information Center (ERIC), and Medline. First, exploratory searches were run to gather search terms. The returned articles were reviewed for common terms, and these terms were discussed with professionals working with families with young children with special needs to create the final search term list. The following search term combinations were entered: (autism, autism spectrum disorder, PDDNOS, Aspergers) AND (parental stress, parental self-efficacy, maternal stress, paternal stress, maternal depression, paternal depression, burden). These searches yielded studies that addressed all types of interventions targeting parental outcomes. The following search terms were then added to the above combinations: (acceptance and commitment therapy, cognitive behavior therapy, mindfulness-based stress reduction, mindfulness, parent education). These search terms were added to the initial search terms in an effort to identify any studies that were potentially missed in the initial search; they were chosen based on exploratory searches and discussions with professionals. The term Bchallenging behavior^ was also added to the previous search combinations to identify any further studies, since challenging behavior is commonly associated with parental stress and several studies measure both challenging behavior and parental stress. However, studies did not have to measure challenging behavior to be included in the present review. The authors did not restrict the literature search by year to capture a range of literature in a growing field. The abstracts of 281 returned studies were read to determine the research method. Single-case studies, quasi-experimental, and randomized group designs were retained for

further examination of the methods section for determination of inclusion. Thirty-five studies were retained from the initial 281 studies. An ancestral search of the literature was conducted with each article to identify additional research for possible inclusion. The references of all 35 included studies were read to identify any additional studies. Six studies were identified through an ancestral search of the literature. A total of 41 studies are included in the current review. Gray literature, literature reviews, and descriptive studies were not included in the analysis, but informed the discussion. Inclusion Criteria Requirements for inclusion in this review were as follows: (a) publication in an English language peer-reviewed journal and (b) included at least one parent of a child with autism spectrum disorder (birth through 12). The age range of birth through 12 was used to capture the particular stress levels of parents of young children. Inclusion of an ASD diagnosis or educational classification was based on the diagnostic criterion outlined in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV-TR), which included children with a diagnosis of Asperger’s syndrome, pervasive developmental disorder-not otherwise specified (PDD-NOS), and autistic disorder, or the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-V). However, this review excluded participants with a diagnosis of Rett syndrome or childhood disintegrative disorder (CDD); (c) investigated the effects of an intervention that aimed to decrease parental stress and parental depression or improve parental self-efficacy as a primary outcome; and (d) utilized single-case, quasi-experimental, or randomized group design to evaluate the impact of the intervention on parent (and where relevant child) outcomes. All interventions targeting parental outcomes were included in the current review. Exclusion Criteria Studies were excluded based on the following criteria: (a) reduced parental stress, and/or parental depression and/or parental self-efficacy were not primary outcome variables, or (b) studies did not focus on results of an intervention (i.e., were descriptive or correlational in nature). For example, Lecavalier et al. (2006) examined the effects of child behavior on caregiver stress in a sample of children with ASD, but caregiver stress was examined as a secondary variable. In another study, the authors examined how child characteristics influence parenting behavior and psychological stress among parents of young children with ASD and other developmental disabilities (Estes et al. 2009). Although maternal stress was measured as a primary outcome variable, this study did not focus on the results of an intervention. A total of 246 studies were


excluded. A list of all studies excluded from the final review is available from the first author upon request. Coding and Data Extraction

measure of reliability. Reliability was also calculated for coding surveys for 30% of the included studies resulting in 23 items where the first and second authors could agree or disagree. Reliability was calculated by dividing the total number of agreements by the total number of coded items (agreements + disagreements) and multiplying by 100 to obtain a percentage. Reliability for literature searches was 89.4% and reliability for coding was 93%. Any disagreements were discussed with the third author and a consensus model was used to determine inclusion of a study or recoding of extracted data.

Data was initially extracted by the first author through an online form created for this review using Qualtrics survey software. Qualtrics is a platform for survey and questionnaire design available to students and faculty at REDACTED. The following variables were extracted: (a) research methodology, (b) child participant information (i.e., age and diagnosis), (c) parent participant information (i.e., age, gender, marital status) and family information (i.e., number of children in the household, ethnicity), (d) intervention (i.e., type, group or individual), (e) results (i.e., outcome measures, effect sizes), and (f) design rigor. Resulting articles were further categorized by targeted dependent variable and intervention type. Dependent variables were categorized as (a) parental stress, which included all studies which measured parent stress or anxiety levels; (b) parental depression; and (c) parental self-efficacy, which included all studies which measured parental self-efficacy or self-competence. Intervention types were categorized as (a) behavioral interventions, or interventions using behavioral teaching strategies (e.g., Early Start Denver Model; CBT); (b) psychoeducational interventions, defined as interventions that provide psychoeducational support around the child’s disability; (c) mindfulness-based interventions (e.g., mindfulness-based stress reduction); and (d) interventions that did not fall under the preceding categories (e.g., massage therapy). Additionally, a coding sheet was developed by the first author to assess the quality and rigor of group (experimental and quasi-experimental) studies according to What Works Clearinghouse Design standards (What Works Clearinghouse 2008). No single-case studies were included in the current literature review. Group design studies were reviewed according to the following criteria: (a) description of participants, (b) sampling procedures, (c) use of control group, (d) random assignment, (e) identifiable intervention components, (e) description of treatment conditions, (f) fidelity procedures, (g) appropriateness of measures, (h) appropriateness of data analysis techniques, (i) and effect size. Studies were coded as high quality if they met all required indicators, acceptable quality if they met all but two of the required indicators, and does not meet standards if they did not meet more than two of the required indicators. A copy of coding procedures is available from the first author upon request.

The current review includes a total of 2147 parent participants with 1622 (75.55%) mothers and 525 (24.45%) fathers. The number of participating mother and father participants was not reported for 5 of the 41 studies. Twenty-one (1.22%) of the 41 studies did not report parent age. Of the studies that reported marital status, 9.16% of parents were single parents. Over half of the studies (28 studies) did not report information on marital status. Of the studies that reported number of children in the family, there was an average of 1.52 children (range of 0–6). The number of children in the family was only reported in 18 of the 41 studies. Participants came from diverse ethnic backgrounds, with 77.31% white/Caucasian participants. Other participants were Black/African American, Asian, Hispanic/ Latino, Native American, Hawaiian/Pacific Islander, Middle Eastern, and East Indian. A few of the reviewed studies only included participants from specific ethnic backgrounds. For example, Chiang (2014) only included Chinese American participants, Kucuker (2006) only included Turkish participants, Leung et al. (2013) only included Chinese participants, Magaña et al. (2015) only included Latino/Hispanic participants, and Izadi-Mazidi et al. (2015) and McConkey and Samadi (2013) only included Iranian participants. Race or ethnicity was not reported in 20 of the 41 studies. Child participant ages in the reviewed studies ranged from 21 months to 23 years, with a mean age of 5.17 years. Mean child age or range was not reported in 1 of the 41 studies, but the methods reported the study included preschool children. Studies included 77.44% children with ASD. The number or percentage of children with an ASD diagnosis was not reported for 2 of the 41 studies, although both studies reported that children with ASD were included. Child and parent characteristics are reported in Table 1.

Interrater Reliability

Outcome Measures

The first and second authors independently completed 50% of database searches previously carried out by the other to obtain a

Data were extracted on the measurement tools used and results for the following dependent variables: stress/anxiety,

Results Participant Characteristics

Rev J Autism Dev Disord Table 1

Parent and child characteristics Study

Child demographics

Intervention

Ages

Parent demographics % with ASD

N

Role

1 1 mother

Age

Anclair and Hiltunen, 2014)

CBT

12 years

100

Al-Khalaf et al. (2014)

Psychoeducational

Preschool age

100

47

Barlow et al. (2008)

Other

M = 6.5 years

20


Other

M = 6.5 years

17

Bendixen et al. (2011)

Behavioral

M = 4.41 years

100

Benn et al. (2012)

MBSR

5–23 years

75

Braiden et al. (2012)

Behavioral

M = 3 years

100

Bristol et al. (1993) Budd et al. (2011) Chiang (2014)

Behavioral Behavioral Psychoeducational

M = 3.82 years 5 years 3–11 years

50 100 100

Cullen and Barlow (2004)

Other

M = 6 years

61.7

Dababnah and Parish (2016) Behavioral

M = 3.7 years

100

D’Elia et al. (2014) Dunn et al. (2012)

Behavioral Other

M = 4.1 years M = 6.5 years

100 100

Dykens et al. (2014)

MBSR vs other

M = 10.85 years

94

Estes et al. (2014)

Behavioral

M = 1.75 years

86

Farmer and Reupert (2013)

Psychoeducational

2 years and older

100

Ferraioli and Harris (2013)

Behavioral vs MBSR

3–18 years

100

Gika et al. (2012)

Other

4.5–17 years

100

Hodgetts and McConnell (2013) Izadi-Mazidi et al. (2015) Keen et al. (2007)

Behavioral

4–12 years

100

CBT

M = 7.5 years

100

Behavioral

M = 3.05 years

100

Kirkham et al. (1986) Kucuker (2006)

Other Behavioral

7–9 years M = 3.88 years

NR NR

Leung et al. (2013)

Behavioral

M = 4.17 years

61.7

Magana et al. (2015)

M = 5.78 years

100

McAleese et al. (2014)

Psychoeducational and behavioral Psychoeducational and other

15 10 mothers 5 fathers 16 16 mothers 76 39 mothers 37 fathers 4 4 mothers 57 29 mothers 28 fathers 74 66 mothers 8 fathers 19 19 mothers

100

55 NR

NR

McAleese et al. (2014)

Psychoeducational

Majority of children 5–11 years 3–17 years

100

Minjarez et al. (2012)

Behavioral

M = 3.11 years

94

Majority of parents 31–50 years NR

Neece (2014)

MBSR

2.5–5 years

86

Patra et al. (2015) Samadi et al. (2012)

Psychoeducational Psychoeducational


100 100

28 17 mothers 11 fathers 24 15 mothers 9 fathers 46 33 mothers 13 fathers 10 NR 37 24 mothers

10 10 mothers NR M = 38 188 165 mothers 23 fathers 95 84 mothers M = 38 11 fathers 38 19 fathers M = 34.75 19 mothers 25 23 mothers M = 47 2 fathers 31 18 mothers NR 13 fathers 28 28 mothers M = 30.47 1 1 mother NR 11 9 mothers NR 2 fathers 79 70 mothers M = 37 9 fathers 17 16 mothers NR 1 father 30 NR NR 20 19 mothers NR 1 father 243 243 M = 40.87 mothers 82 77 mothers M = 33.8 5 fathers 98 63 mothers NR 35 fathers 15 10 mothers NR 5 fathers 11 11 mothers M = 44 NR M = 37.7 NR NR M = 31.45 NR M = 33.16

M = 34.5 NR 54% (30–39)

Rev J Autism Dev Disord Table 1 (continued) Study

Child demographics

Parent demographics

Intervention

Ages

% with ASD

Sorfronoff and Farbotko Behavioral (2002) Suzuki et al. (2014) Psychoeducational Tellegan and Sanders (2014) Behavioral

M = 8 years

100


100 100

Todd et al. (2010)

M = 7 years

NR

Other

Tonge et al. (2006)

Behavioral and other

M = 3.88 years

100

Williams et al. (2005)

Other

M = 7 years

18.3

Whitney and Smith, 2015

Other

Majority 3–18 years

52.2

Whittingham et al. (2009)

Behavioral

M = 5.9 years

100

Wong and Kwan (2010)

Behavioral

M = 2.21 years

100

depression, and self-efficacy. The dependent variables for each individual study are reported in Table 2. Stress Thirty-two studies examined parent stress. Eleven different measurement tools were used across studies. The Parental Stress Index-Short Form (PSI-SF; Abidin 1990) was the most commonly used measure (52.38% of studies). The PSI-SF is a screener for dysfunctional parent-child stress or relationship factors, including parent behavior problems and child adjustment problems. One study (i.e., Dykens et al. 2014) used this measure to assess outcomes of a randomized control trial comparing a mindfulness-based stress reduction (MBSR) program to a positive psychology-based practice. Five studies (i.e., Barlow et al. 2006; Barlow et al. 2008; Cullen and Barlow 2004; Todd et al. 2010; Williams et al. 2005) used the Hospital Anxiety and Depression Scale (HADS; Zigmond and Snaith 1983), a 14item questionnaire used to determine the levels of anxiety and depression. For example, Barlow et al. (2006) used the HADS to assess the outcomes of a randomized control trial evaluating massage therapy. Depression Seventeen of the included studies measured parent depression as a dependent variable. Eight different measures were used across studies. Three studies used the HADS (i.e., Barlow et al. 2006, 2008; Todd et al. 2010), previously described above. For example, Todd et al. (2010) used the HADS in a quasi-experimental design to evaluate the effects of CBT and behavioral intervention. Three of the studies (i.e., Brinker et al., 1994; Magana et al. 2015; Neece 2014) used the Center for Epidemiological Studies Depression scale (CES-D; Radloff 1977). The CES-D is a short self-assessment for

N

Role

13 fathers 89 45 mothers 44 fathers 72 72 mothers 64 61 mothers 3 fathers 22 19 mothers 3 fathers 105 NR 80 76 mothers 4 fathers 156 156 mothers 58 54 mothers 4 fathers 17 NR

Age

NR M = 35.14 M = 38.35 NR NR M = 38 M=1 NR NR

depressive symptoms designed for use by the general population. For example, Magana et al. (2015) used the CES-D in a quasi-experimental design to evaluate the effects of a psychoeducational and behavioral intervention. Parental Self-Efficacy Studies that measured self-efficacy (or self-competence) measured parents’ perceived ability to deal with the everyday challenges of parenting, as well as their perceptions of competence in the delivery of specific interventions. Fifteen of the included studies examined parental selfefficacy, all using a range of tools. One tool, the Parental Sense of Competence Scale (PSOC; Gibaud-Wallston and Wandersmann 1978) was used in three studies (i.e., Dunn et al. 2012; Estes et al. 2014; Keen et al. 2007). The PSOC looks at two dimensions of parenting, satisfaction and efficacy. One study (i.e., Estes et al., 2014) used this scale to examine changes in perceptions of self-efficacy after intervention with a parent-implemented ESDM intervention. Interventions Interventions were delivered through various formats. Individual format interventions were delivered to one or both parents at a time, and group format interventions were delivered to a larger group of parents. Some interventions used both a group and individual format, usually consisting of group sessions followed by individual sessions. Of the interventions included in this review, 47.60% used an individual format, 35.71% used a group format, and 16.69% used both a group and individual format. One study (i.e., Bristol et al. 1993) did not specify the type of intervention format used. A variety of

Rev J Autism Dev Disord Table 2

Intervention characteristics and outcome measures

Study

Intervention type

Format

Dosage

Measures

Outcomes

Anclair and Hiltunen (2014) Al-Khalaf et al. (2014)

CBT

Individual

18 (1-h) sessions

Shirom-Melamed Burnout Questionnaire (SMBQ)

Reduced symptoms of depression

Psychoeducational

Group

4 (4-h) sessions

Parenting Stress Index (PSI) Coping Strategy Indicator (CSI)


Other/massage therapy Individual

8 (1-h) sessions



8 (1-h) sessions

Bendixen et al. (2011)

Behavioral

Individual

2 sessions

Benn et al. (2012)

Mindfulness

Group

10 sessions

Braiden et al. Behavioral (2012)

Individual

10 (2–3-h) sessions

Bristol et al. (1993) Budd et al. (2011) Chiang (2014)

Behavioral

Individual

NR

Behavioral

Individual

13 (90-min) sessions

Psychoeducational

Group


Cullen and Barlow (2004) Dababnah and Parish (2016) D’Elia et al. (2014) Dunn et al. (2012)

Statistically significant reductions in parental stress Statistically significant increases in parents’ coping skills Hospital Anxiety and Significant improvements in Depression Scale (HADS) anxiety and depressive symptoms No significant improvements in HADS anxiety and depressive Generalized Self-Efficacy symptoms Scale (GSES) Significant improvements in Parent’s Self-Efficacy Scale parental self-efficacy (PSES) Parenting Stress Index-Short No statistically significant Form (PSI-SF) improvements in parental stress Significant decreases in stress at follow-up Significant decreases in anxiety PSS State Subscale of the postintervention and follow-up State-Trait Anxiety Significant decreases in depression Inventory for Adults postintervention but not (STAI) Everyday Parenting follow-up Scale PSI No significant increases in parent self-efficacy Significant decreases in parental stress Community Epidemiologic Significant reduction in depressive Depression Scale (CES-D) symptoms PSI-SF Significant decreases in parental stress World Health Organization Significant improvements in Quality of Life parental stress and depression Questionnaire (WHOQOL) HADS Significant improvement in parental anxiety and depression


8 (1-h) sessions

Behavioral

Individual

12 (2-h) sessions

PSI

Behavioral

Individual

3 sessions (duration NR)

PSI

Other/occupational therapy

Individual

10 (1 h) sessions

Dykens et al. Mindfulness vs (2014) psychotherapy

Group

6 (1.5 h) sessions

Estes et al. (2014)

Behavioral

Individual

13 (1-h) sessions

Farmer and Reupert (2013)

Psychoeducational

Group

6 (2-h) sessions

Group

8 (2-h) session

Significant decreases in parental stress

Significant decreases in parental stress PSI-SF Significant decreases in parental Parenting Sense of stress Competence Scale (PSOC) Significant increases in parental self-efficacy Significant reduction in depression Beck Depression Inventory and anxiety for both groups (BDI) following intervention and Beck Anxiety Inventory(BAI) follow-up PSI Mothers participating in psychotherapy had greater improvements in depressive symptoms than mothers participating in MBSR Questionnaire on Resource Significant decreases in parental and Stress (QRS-F) PSOC stress No significant improvements in self-efficacy Self-constructed Significant reduction in parental questionnaire/Likert scale anxiety Significant increase in parental confidence PSI-SF


Intervention type

Ferraioli and Behavioral vs Harris mindfulness (2013) Gika et al. Other/progressive (2012) muscle relaxation Hodgetts and Behavioral McConnell (2013)

Format

Dosage

Measures

Individual

4 sessions

PSI-SF

Individual

10 (1-h) sessions

Depression-Anxiety Stress Scale (DASS) Parental Self-Efficacy Questionnaire PSI-SF

Izadi-Mazidi et al. (2015) Keen et al. (2007)

CBT

Group

7 (90-min) sessions

Behavioral

Group/individual vs individual

PSI 2-day group workshop and 10 home-based PSOC consultations vs 6 weeks individual use of instructional DVD and workbook

Kirkham et al. (1986) Kucuker (2006)

Other

Group

8 (2-h) sessions

QRS-F

Behavioral

Individual

2 h/week for 4 weeks

QRS-F BDI

Outcomes Significant decrease in parental stress among participants in MBSR group Significant decrease in parental stress Significant improvement in parental well-being Significant increase in parental self-efficacy Significant decrease in parental stress Significant decrease in parental stress Increase in self-efficacy among parents in professional supported intervention compared to self-directed video-based intervention Decreased stress for 3 of 4 participants

No significant decrease in parental stress for mothers or fathers Significant decrease in depression for both mothers and fathers PSS Significant decrease in parental stress Caregiver burden, satisfaction, No significant improvement in and efficacy scale (i.e., depression and caregiver burden Likert scale w/ 20 items) Significant improvement in parental from Heller et al. (1999) self-efficacy and CES-D Wright and Williams Significant increase in parental self-efficacy Questionnaire (2007)

Leung et al. Behavioral Group (2013) Magana et al. Psychoeducational and Individual (2015) behavioral

8 (2-h) sessions and 2 follow-up phone sessions 8 (2-h) sessions

McAleese et al. (2014) McConkey and Samadi (2013) Minjarez et al. (2012)

Psychoeducational and Group other/psychotherapy

3 (3-h) sessions

Psychoeducational

Group

3 (60–90-min) sessions

PSI

Behavioral

Group


PSI Family Empowerment Scale

Neece (2014) Mindfulness

Group

8 (2-h) sessions

CES-D PSI

Patra et al. (2015)

Psychoeducational

Group

12 (2-h) sessions

Samadi et al. (2012)

Psychoeducational

Group and individual


Family interview for stress and coping in mental retardation (Likert scale) developed for study GHQ

Sorfronoff and Farbotko (2002) Suzukiet al. (2014)

Behavioral

Group vs individual

1-day group workshop vs 6 individual sessions

Psychoeducational

Group


Behavioral

Individual


Self-constructed, 15-item BParental Self-Efficacy in Management of Asperger Syndrome Questionnaire^ GHQ-28

Significant decrease in parental stress immediately following intervention but not at 3 months follow-up Significant decrease in parental stress Significant decrease in parental self-efficacy Significant decrease in depressive symptoms Significant decrease in parental stress Significant decrease in parental stress

Significant improvement in parental stress with maintenance at follow-up Significant increase in self-efficacy for both group and individual participants No significant improvement in depressive and anxiety symptoms


Intervention type

Format

Tellegan and Sanders (2014)

Group

Dosage

Measures

Outcomes

Depression, Anxiety and Significant improvement in parental Stress Scales-21 anxiety and stress (DASS-21) Parenting Scale No significant improvement in parental depression Significant increase in parenting confidence 9 or 10 (2-h) sessions HADS Significant reduction in parental Behavior Management depression Questionnaire (BMQ) Significant reduction in parental anxiety Significant improvement in parental self-efficacy No significant difference in parental 20 (90-min small group) ses- GHQ-28 sions and 10 (60-min) depression between groups family sessions immediately following treatment Significant improvement in parental depression for both groups at follow-up Greater improvement in anxiety for the psychotherapy group in comparison to the behavioral group 8 (2-h) sessions HADS Significant improvement in PSES depressive symptoms and parental stress Significant improvement in parental self-efficacy 8 (15-min) sessions PSI Significant increase in parental self-efficacy

Todd et al. (2010)

CBT and behavioral

Tonge et al. (2006)

Behavioral vs Individual and other/psychotherapy group

Williams et al. (2005)


Whitney and Smith (2015) Whittingham et al. (2009) Wong and Kwan (2010)

Other/online journal writing

Group

Behavioral

Individual and group

9 sessions

Being a Parent Scale

Significant increases in parental self-efficacy

Behavioral

Individual


PSI-SF

Significant reductions in parental stress

different interventions were used to target parent outcomes, including psychoeducational programs, CBT, mindfulnessbased stress reduction, behaviorally based programs, and others. Intervention type and format for each individual study is reported in Table 2. Psychoeducational Programs Psychoeducational programs were defined as any programs that provide parents with psychoeducational information, support, and problem solving specifically around the child’s disability. For example, a psychoeducational intervention might educate parents on the symptoms of ASD (e.g., social communication difficulties) and provide suggestions for parents on responding to child symptoms. Nine of the included studies, representing 340 parents, measured the effectiveness of psychoeducational programs on improving parental outcomes (i.e., Al-Khalaf et al. 2014; Chiang 2014; Farmer and Reupert 2013; Magana et al. 2015; McAleese et al. 2014; McConkey and Samadi 2013; Patra et al. 2015; Samadi et al. 2012; Tonge et al. 2006). For example, AlKhalaf et al. (2014) examined the effects of a psychoeducational

program on decreasing parental stress and improving coping skills among mothers of children with ASD in Jordan. The psychoeducational program included 4-h sessions each week for 4 weeks delivered by a licensed psychologist at a private center for children with disabilities. The program was designed to help mothers understand their child’s behaviors (e.g., rigid and repetitive behaviors and communication difficulties) and focused on generating strategies to cope with typical daily events specific to raising a child with ASD. Chiang (2014) examined the effects of a psychoeducational program on decreasing parenting stress and increasing parental confidence and quality of life among parents of Chinese American children with ASD. The psychoeducational program involved ten weekly group sessions. During each 120-min session, the first author lectured on one of ten topics chosen based on parents’ interests and facilitated group discussions and role plays connected to weekly topics. Farmer and Reupert (2013) examined the effects of a group psychoeducational program on parental stress and self-efficacy among parents of children with ASD in rural Australia. The 6-week program included 2-h weekly sessions


focused on information about ASD, behavioral differences and practical strategies for raising a child with ASD. Program information was presented using multiple media and a 72-page manual. Participants were encouraged to share their stories, listen to others, and provide mutual support. Findings from studies evaluating the outcomes of psychoeducational interventions reflect promising results for remediating parental stress and improving self-efficacy. Seven studies evaluated the impact of psychoeducational interventions on parental stress (i.e., Al-Khalaf et al. 2014; Chiang 2014; McConkey and Samadi 2013; Patra et al. 2015; Samadi et al. 2012; Suzuki et al. 2014). Six (85.71%) of these studies reported significant decreases in parental stress. Four studies evaluated the impact of psychoeducational interventions on parental self-efficacy (i.e., Chiang 2014; Farmer and Reupert 2013; Magaña et al., 2015; McAleese et al. 2014) and all four studies reported significant increases in parental selfefficacy. Only two studies examined the impact of a psychoeducational intervention on depression among parents (i.e., Magaña et al., 2015; Suzuki et al. 2014). Both studies reported no significant decreases in parental depression. Cognitive Behavioral Therapy Cognitive behavioral interventions were defined as interventions that include behavior analytic perspectives on thought processes, with a focus on understanding the relationship between thoughts, behaviors, and feelings. CBT is designed to teach individuals to modify dysfunctional patterns of thinking in order to improve coping skills (National Association of Mental Illness [NAMI], n.d.). For example, a psychologist employing CBT would teach a parent to distinguish between different emotions, identify automatic thoughts (i.e., thoughts and feelings that enter the mind automatically in response to external events), and link thoughts to emotions and behavior. The psychologist would teach parents how to engage in more adaptive and positive alternatives to negative thoughts and modify problematic core beliefs about themselves or the world (e.g., challenging the belief, BI am a bad mother^). Three of the reviewed studies, representing 17 parents, used CBT to improve parental well-being in parents of children with ASD (i.e., Anclair and Hiltunen 2014; Izadi-Mazidi et al. 2015; Todd et al. 2010). For example, Anclair and Hiltunen (2014) examined the use of CBT for remediating stress-related problems in a mother of a 12-year-old child with ASD. The treatment included eighteen 1-h sessions and treatment targets were individualized based on presenting problems and assessment, with a focus on exhaustion, depression, and sleeping difficulties. Izadi-Mazidi et al. (2015) examined the effects of group CBT on parenting stress in mothers of children with ASD. The intervention consisted of seven 90min sessions with individual and group activities. Educational techniques such as role playing, group discussion, and homework assignments were used. In another study, Todd et al.

(2010) examined the effects of a group-based intervention on depression, anxiety, and self-efficacy in parents of children with disabilities. The program consisted of nine or ten 2-h sessions co-facilitated by a clinical psychologist and community nurses or specialist teachers. The program incorporated CBT and behavioral techniques. In addition to learning strategies for managing child behavior and facilitating child communication, parents learned CBT strategies for managing parental stress. Parents were taught through modeling, home practice, problem-solving, and role play. Findings from studies evaluating the effects of participating in CBT indicate promising findings regarding decreases in stress and depressive symptoms and increases in selfefficacy among parents of children with ASD. Two studies (Izadi-Mazidi et al. 2015) evaluated the impact of CBT on parental stress and both studies reported significant decreases in parental stress. Two studies examined the impact of CBT on parental depression (Anclair and Hiltunen 2014; Todd et al. 2010) and both studies reported significant decreases in depression. Only one study (Todd et al. 2010) examined the impact of CBT on parental self-efficacy and reported significant increases in parental self-efficacy. Mindfulness-Based Interventions Mindfulness-based interventions teach and promote the practice of Bmindfulness,^ or Bpaying attention in a particular way: on purpose, in the present moment, and nonjudgmentally^ (Kabat-Zinn 1994, p. 4) throughout daily activities and routines. In application to parents of children with ASD, mindful parenting involves paying attention in an intentional and nonjudgmental way to one’s own parenting behavior (Beer et al. 2013). Mindfulnessbased interventions teach parents to adjust negative thought patterns related to how they organize and interpret their experiences, while engaging in a compassionate approach to selfreflection and parenting (Cachia et al. 2016). Three of the 41 studies, representing 329 parents, examined the effects of mindfulness-based interventions on parent outcomes (i.e., Benn et al. 2012; Dykens et al. 2014; Ferraoli and Harris 2013; Neece 2014). For example, Benn et al. (2012) examined the effects of mindfulness training on anxiety and depression among parents and educators of children with special needs. They used a manualized instructional curriculum (SMART-in-Education) developed by the Impact Foundation (Cullen and Wallace 2010). The curriculum includes practices from the MBSR program developed by Kabat-Zinn and Santorelli (1999) and includes additional content focused on emotion theory and regulation, forgiveness, kindness and compassion, and application of mindfulness to parenting and teaching. The program included ten 2.5-h group sessions and home practice. Mindfulness practices included mental training exercises, daily sitting practice, and monitoring emotional and behavioral responses. Parents experienced significant decreases in anxiety immediately following intervention and at


later follow-up. Parents also experienced significant decreases in depression immediately following intervention, but not at later follow-up. Dykens et al. (2014) compared the effects of a MBSR program to a positive adult development program (PAD; positive psychology practice) on parent stress, depression, anxiety, sleep, and well-being. There were a total of sixweekly group sessions. Each 1.5-h session, led by peer mentors, focused on teaching specific breathing, meditation, and movement techniques. Parents in both intervention groups experienced significant decreases in depression and anxiety immediately following intervention and at later follow-up. In another study, Neece (2014) examined the effects of a group MBSR program on parent depression and stress. The program consisted of eight 2-h sessions. The intervention followed the manual outlined by Kabat-Zinn and Santorelli (1999). It consisted of didactic material, group and individual mindfulness exercises, and group discussion or discussion in pairs. Parents experienced significant decreases in depressive symptoms and parental stress following intervention. Findings from studies evaluating the effects of participating in mindfulness-based interventions indicate promising findings regarding decreases in parental stress and depression. Four studies (i.e., Benn et al. 2012; Dykens et al. 2014; Ferraoli and Harris 2013; Neece 2014) examined the impact of mindfulness-based interventions on parental stress. All four studies reported significant decreases in parental stress. Three studies (i.e., Benn et al. 2012; Dykens et al. 2014; Neece 2014) examined the impact of mindfulness-based interventions on depression. All three studies reported significant decreases in depressive symptoms among parents. There are no studies included in this review that examined the impact of mindfulness-based interventions on parental self-efficacy. Behaviorally Based Programs Behaviorally based programs included interventions that trained parents to use behavior analytic teaching strategies to manage their child’s behavior. Behaviorally based interventions included unpackaged behavioral parent training programs (i.e., Bendixen et al. 2011; Ferraoli and Harris 2013; Keen et al. 2007; Magaña et al., 2015; Sorfronoff and Farbotko 2002) and packaged interventions including the TEACHH Autism Program (i.e., D’Elia et al. 2014), Parent Child Interaction Therapy (i.e., Budd et al. 2011), the Early Start Denver Model (i.e., Estes et al. 2014), the Stepping Stones Triple P Program (i.e., Hodgetts and McConnell 2013; Whittingam et al. 2009), the Small Steps Early Intervention Program (i.e., Kucuker 2006), the Triple P Positive Parenting Program (i.e., Leung et al. 2013), the Primary Care Stepping Stones Triple P Program (i.e., Tellegan and Sanders 2014), and pivotal response training (i.e., Minjarez et al. 2012). Nineteen of the 41 studies, representing 840 parents, evaluated the effects of behaviorally based interventions on parental outcomes (i.e., Bendixen et al. 2011; Braiden et al. 2012;

Bristol et al. 1993; Budd et al. 2011; Dababnah and Parish 2016; D’Elia et al. 2014; Estes et al. 2014; Ferraoli and Harris 2013; Hodgetts and McConnell 2013; Keen et al. 2007; Kucuker 2006; Leung et al. 2013; Magaña et al. 2015; Sorfronoff and Farbatko 2002; Tellegan and Sanders 2014; Todd et al. 2010; Tonge et al. 2006; Whittingham et al. 2009; Wong and Kwan 2010). In one study, Braiden et al. (2012) examined the effects of a TEACCH-based Early Intervention Program on parental stress and self-efficacy among parents of children with ASD. The intervention was a 10-week program consisting of one-to-one support sessions with an accredited TEACCH facilitator. Sessions focused on teaching parents to understand their child’s autism and implement behaviorally based methods to support their child’s selfhelp and independence, play, and early social skills. Estes et al. (2014) examined the effects of parent-implemented Early Start Denver Model (ESDM) on parental stress and self-efficacy in parents of young children with ASD. Parents participated in thirteen 1-h individual, center-based sessions and were taught principles associated with ESDM (i.e., Dawson et al. 2010), including gaining the child’s attention, principles of behavior change, and language facilitation strategies within daily activities and routines. In another study, Whittingham et al. (2009) examined the effects of the Stepping Stones Triple P program (SSTP) on stress and depressive symptoms among parents of children with ASD. SSTP focuses on teaching parents to provide their child with positive attention and consider the function of the child’s behavior to appropriately adapt parenting practices. The intervention included a group format of six sessions that involved teaching parenting strategies and an individual format of three sessions involving observation practice and direct feedback. Behaviorally based interventions show promising findings for remediating parent stress and depression, as well as remediating parental self-efficacy. Eighteen of the included studies examined the impact of behaviorally based interventions on parental stress and 89.47% of those studies found significant reductions in parental stress. Fourteen of the included studies examined the impact of behaviorally based interventions on parental depression and 92.85% of those studies found significant decreases in parental depression. Eighteen studies examined the impact of behaviorally based interventions on parental self-efficacy and all 18 studies found significant increases in parental self-efficacy. Other Interventions Other interventions were categorized as any interventions that did not fit into any of the previously described categories. Several other types of interventions were used to promote positive parental outcomes, including parent training in massage therapy (i.e., Barlow et al. 2006, 2008; Cullen and Barlow 2004), contextual intervention based in occupational therapy (i.e., Dunn et al. 2012), progressive muscle relaxation (i.e., Gika et al. 2012), psychotherapeutic


intervention (Dykens et al. 2014; Kirkham et al. 1986; McAleese et al. 2014; Tonge et al. 2006), and online journal writing (Whitney and Smith 2015). Eleven studies, representing 815 parents, examined the effects of other interventions on parental outcomes. Participation in psychotherapy has promising outcomes among parents of children developmental disabilities, including reduced stress and depression and increased self-efficacy. Four studies examined in this review examined the impact of various types of psychotherapy on parental outcomes (Dykens et al. 2014; Kirkham et al. 1986; McAleese et al. 2014; Tonge et al. 2006). All four studies examined the impact of psychotherapy on parental stress and reported significant decreases in parental stress. One study (i.e., Tonge et al. 2006) compared psychotherapy with behavioral parent management training and reported greater decreases in parental stress among parents participating in psychotherapy compared to behavioral parent management training. Two studies (i.e., Dykens et al. 2014; McAleese et al. 2014) examined the impact of psychotherapy on depressive symptoms among parents and both studies reported significant decreases in depressive symptoms. In addition, (Dykens et al. 2014) reported greater decreases in depressive symptoms among parents participating in psychotherapy based in positive psychology compared to parents participating in MBSR. Two studies (Kirkham et al. 1986; McAleese et al. 2014) examined the impact of psychotherapy on parental self-efficacy and reported significant increases in parental self-efficacy. Studies included in this review suggest promising outcomes for parents that have participated in massage therapy, including reduced parental stress and depression and increased self-efficacy. Four studies examined the influence of massage therapy on parental outcomes (i.e., Barlow et al. 2006, 2008; Cullen and Barlow 2004; Williams et al. 2005) among 442 parents of children with developmental disabilities. All four studies examined the effects of massage training on parental stress and depression. Three studies (75%) reported positive outcomes and one study (i.e., Barlow et al. 2008) did not report significant improvements in parental stress or depression. Two studies examined the effects of massage training on self-efficacy (i.e., Cullen and Barlow 2004; Barlow et al. 2008) and both studies reported significant improvements in self-efficacy. Only one study included in this review examined the outcomes of training parents in an intervention based on occupational therapy (i.e., Dunn et al. 2012). This study examined the effects of participation in the intervention on parental stress and self-efficacy among 20 parents of children with ASD. The authors reported significant reduction in parental stress and significant increases in self-efficacy. Only one study in this review examined the impact of progressive muscle relaxation training on parent outcomes (i.e., Gika et al. 2012). This study evaluated the effects of progressive muscle relaxation training on parental stress among 11

parents of children with ASD. The authors reported significant decreases in parental stress. Only one study in this review examined the impact of online journal writing (i.e., Whitney and Smith 2015) on parents of children with developmental disability. This study examined the impact of online journal writing on parental selfefficacy among 156 mothers of children with developmental disabilities. The authors reported significant increases in parental self-efficacy. Study Rigor and Effect Size Reporting Since over half (71.43%) of the included studies used a quasiexperimental research method, few studies met quality standards. Only one of the included studies (2.45%) received a rating of high quality, seven studies (17.07%) were found to be of acceptable quality, and the remaining 33 studies (80.5%) were rated does not meet standards. A small number (19.51%) of the included studies reported effect size. Using Cohen’s standards for effect size calculation, a small effect is 0.2, a medium effect is 0.5, and a large effect is 0.8 or higher (Cohen 1977). Three of these studies (19.04%) reported a small effect size, one study (12.50%) reported a medium effect size, two studies (25%) reported large effect sizes, and two studies (25%) reported medium to large effect sizes. Most studies measured multiple dependent variables and, so in some cases, reported different effect sizes within the same study. Regarding the effectiveness of psychoeducational interventions, only one study (Chiang 2014) reported effect sizes. The mean effect size was 0.91, indicating a large effect size. Regarding the effectiveness of behavioral interventions, four studies reported effect sizes (i.e., Braiden et al. 2012; Dababnah and Parish 2016; Leung et al. 2013; Tellegan and Sanders 2014). The mean effect size for behavioral interventions is 0.54, indicating a medium effect. Regarding the effectiveness of CBT, none of the included studies reported effect sizes. Regarding the effectiveness of mindfulness-based interventions, two studies reported effect sizes (i.e., Neece 2014; Dykens et al. 2014). The mean effect size for mindfulness-based interventions was 0.84, indicating a large effect. Regarding the effectiveness of other interventions, effect sizes were reported for one study examining the effects of massage therapy (i.e., Barlow et al. 2006). The mean effect size for massage therapy was 0.21, indicting a small effect. Reported effect sizes, rigor of research, and design of studies are available in Table 3. Overall, studies examining the effects of behaviorally based interventions and mindfulness-based interventions on parental outcomes were of the highest quality. With regard to studies examining the effects of psychoeducational interventions on parental outcomes, 100% of studies did not meet standards. With regard to studies examining the effects of CBT on parental outcomes, 100% of studies did not meet standards. With regard to studies examining the effects of

Rev J Autism Dev Disord Table 3 Study, design, and quality and effect sizes

Study

Design

Tau-u/effect sizes d

Quality

Anclair and Hiltunen (2014) Al-Khalaf et al. (2014) Barlow et al. (2006) Barlow et al. (2008) Bendixen et al. (2011) Benn et al. (2012) Braiden et al. (2012) Bristol et al. (1993) Budd et al. (2011) Chiang (2014) Cullen and Barlow (2004) Dababnah and Parish (2016) D’Elia et al. (2014) Dunn et al. (2012) Dykens et al. (2014) Estes et al. (2014) Farmer and Reupert (2013) Ferraioli and Harris (2013) Gika et al. (2012) Hodgetts and McConnell (2013) Izadi-Mazidi et al. (2015) Keen et al. (2007) Kirkham et al. (1986) Kucuker (2006) Leung et al. (2013) Magana and Lopez (2015) McAleese et al. (2014) McConkey and Samidi (2013) Minjarez et al. (2012) Neece (2014) Patra et al. (2015) Reed et al. (2013) Samadi et al. (2012) Sorfronoff and Farbotko (2002) Suzuki et al. (2014) Tellegan and Sanders (2014) Todd et al. (2010) Tonge et al. (2006) Williams et al. (2005) Whitney and Smith (2015) Whittingham et al. (2009) Wong and Kwan (2010)

Quasi-experimental Quasi-experimental Randomized group design Randomized group design Quasi-experimental Randomized group design Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Randomized group design Randomized group design Quasi-experimental Randomized group design Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Randomized group design Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Quasi-experimental Randomized group design Quasi-experimental Randomized group design Quasi-experimental Randomized group design Randomized group design Randomized group design

Not reported Not reported 0.12–0.30 Not reported Not reported Not reported 2 = 0.41 Not reported Not reported 0.88–1.0 Not reported 0.79 Not reported Not reported 0.81–0.98 Not reported Not reported Not reported Not reported Not reported Not reported Not reported Not reported Not reported 0.43 Not reported Not reported Not reported Not reported 0.70–0.87 Not reported Not reported Not reported Not reported Not reported 0.16–0.91 Not reported Not reported Not reported Not reported Not reported Not reported

Does not meet standards Does not meet standards Acceptable quality Does not meet standards Does not meet standards Acceptable quality Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Acceptable quality Does not meet standards Acceptable quality Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Acceptable quality Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards Does not meet standards High quality Does not meet standards Acceptable quality Does not meet standards Does not meet standards Acceptable quality Acceptable quality

mindfulness-based interventions on parental outcomes, 50% of studies did not meet standards and 50% of studies were of acceptable quality. With regard to studies examined the effects of behaviorally based interventions on parental outcomes, 63.15% of studies did not meet standards, 31.58% of studies were of acceptable quality, and 5.27% were of high quality. With regard to studies examining the effects of other interventions on parental outcomes, 90% of studies did not meet standards and 10% were of acceptable quality.

Discussion The current literature review provides a comprehensive and critical examination of the existing research on all types of

interventions targeting the improvement of parental outcomes in parents of children with ASD, including depression, parental stress, and parental self-efficacy. Due to the increased likelihood of experiencing stress among parents of children with ASD and the bidirectional relationship between parent and child outcomes, it is vital to target parental well-being of parents of children with ASD. This review identified 41 studies evaluating different types of interventions for remediating parental stress and/or depression and/or improving parental selfefficacy. Our findings suggest a variety of future research questions related to our a priori research questions: (a) What type/format of interventions has been used to improve parental outcomes among parents of children with autism spectrum disorder (ASD)? (b) What interventions have been effective in improving parental outcomes among parents of children


with autism spectrum disorder (ASD)? (c) How strong is the evidence base for interventions aimed at improving parental outcomes among parents of children with ASD? (d) What are the gaps in the literature, future directions for research, and implications for clinical practice? Several different interventions were represented in the current review, including psychoeducational programs, CBT, mindfulness-based interventions, behaviorally based interventions, and other interventions including massage therapy, psychotherapeutic intervention, occupational therapy-based intervention, online journal writing, and progressive muscle relaxation therapy. Behaviorally based interventions were the most commonly evaluated (19 studies), followed by psycho educational interventions (nine studies) and mindfulness-based interventions (five studies). Interventions included both individual and group formats, with a majority of studies examining the effects of interventions delivered to a group of parents. Many of the studies included in this review found positive effects on parental outcomes, including depression, parental stress, and parental self-efficacy. Some studies (i.e., eight studies) did not find positive effects for some parental outcomes (i.e., Barlow et al. 2008; Bendixen et al. 2011; Braiden et al. 2012; Estes et al. 2014; Kucuker 2006; Magana et al. 2015; Suzuki et al. 2014; Tellegan and Sanders 2014; Tonge et al. 2006). For example, Estes et al. (2014) found significant improvements in parental stress, but no significant improvements in parental self-efficacy, and Suzuki et al. (2014) did not find any significant improvements in depression or anxiety. Only eight studies reported effect size. In a previous metaanalysis on interventions targeting parental stress as a primary or secondary variable (Singer et al. 2007), the weighted effect size of included interventions was 0.29, indicating small effects, reflecting the overall efficacy of interventions. In regard to the current review, effect sizes reported for psychoeducational interventions were large, effect sizes reported for behavioral interventions were medium, effect sizes reported for mindfulnessbased interventions were large, and effect sizes reported for massage therapy were small. However, not enough studies reported effect sizes to adequately compare the effectiveness of intervention types. Overall, the results of this review indicate that there are promising interventions to support parents of children with ASD. However, researchers and clinicians should interpret these findings with caution. The majority of studies included in this review used a quasi-experimental research design; therefore, inferences about the functional relation between the intervention and the dependent variables cannot be definitively made. Over half of the included studies (76.19%) did not meet standards of rigor as coded according to What Works Clearinghouse Standards (2008); therefore, the strength of the findings is compromised. For example, many of the included studies lacked important demographic data and information

about intervention components, weakening their rigor. Of further importance, only three of the studies (i.e., Estes et al. 2014; Magana et al. 2015; Tellegan and Sanders 2014) measured and reported adequate treatment fidelity. Without strong treatment fidelity, it is unclear whether changes in outcomes were the result of the intervention or some other variable, such as increased time for a parent to emotionally process an ASD diagnosis or make positive adaptations to family functioning. Few intervention studies have targeted parent outcomes and even fewer studies have evaluated specific interventions such as MBSR or CBT. The narrow breadth of extant research limits the findings. Nevertheless, a majority of the research included in this review was published within the last ten years (i.e., 2006–2016). This may reflect a promising shift in focus toward emphasizing parent outcomes among families of children with ASD. Limitations The present literature review has several limitations. The included studies evaluated several different types of interventions, but due to the limited available research on similar interventions, the authors are unable to compare the effectiveness of the various types of interventions. For example, there is not enough evidence to determine whether CBT or MBSR is more effective at improving parental well-being. Additionally, the authors included articles that met specific inclusion criteria, including children birth–12 years with a diagnosis of ASD. Although all of the included studies included participants that met this criteria, several of the studies also included participants that did not meet the aforementioned criteria. The authors were unable to extract data for individual participants, and overall data may not accurately reflect data for the specified population of interest. However, most of the participants from the included studies met the inclusion criteria, with 77.44% of participants with an ASD diagnosis and a mean age of 5.7 years. Future Directions for Research Although this review included 2147 parents across 41 studies, few studies met criteria for rigorous experimental research. Therefore, more research is clearly needed to determine the effectiveness of interventions to promote parental well-being among parents of children with ASD. Future studies should utilize randomized control group designs and incorporate measurement of treatment fidelity to improve rigor, thereby strengthening the available evidence for the effectiveness of interventions on improving parental outcomes. Additionally, the reporting of essential demographic data will assist in determining which programs are most effective for individual families and their specific needs. Researchers should also


provide greater detail about intervention components for replicability in future studies. An important future direction for research is examining the relationship between parent and child outcomes. Previous research (e.g., Hastings and Johnson 2001; Hastings and Brown 2002; Hastings et al. 2006; Neece et al. 2012; Orsmond et al. 2003) has suggested that there is a bidirectional relationship between parent and child outcomes. However, most of this research is correlational or descriptive in nature and does not evaluate the experimental effects of an intervention on parent and child variables. Some previous studies have measured both parent and child outcomes (e.g., Braiden et al. 2012; Budd et al. 2011; D’Elia et al. 2014; Gika et al. 2012; Wong and Kwan 2010), although many of these studies used a quasiexperimental design. One of the aims of this review was to evaluate research where reduction of stress improved overall family outcomes. However, there is currently insufficient research to establish a functional relation between decreases in parental stress and child outcomes. Future research should examine the covariance between parent and child outcomes. It may also be of benefit to measure the relationship between treatment adherence and parental well-being. Although there is a strong evidence base for the effectiveness of parentimplemented behavioral interventions for children with ASD (e.g., McConachie and Diggle 2007; Warren et al. 2011), treatment adherence has been cited as a barrier to parentimplemented intervention (Allen and Warzak 2000). Previous research indicates that parents of children with ASD have less treatment adherence to behavioral treatment recommendations than medical treatment recommendations (Moore and Symons 2009). The effectiveness of behavioral interventions is dependent upon consistent implementation of essential features (Albin et al. 1996; Detrich 1999; Moore and Symons 2009). Parents who experience less stress and depression and greater self-efficacy may be better able to deliver behavioral interventions with greater treatment adherence, although this relationship has not been explored. Moreover, a limitation of the current literature is that it relies on parent report data to measure parent outcomes. Participation in an intervention alone can lead to better ratings on self-report measures (e.g., Fisher and Katz 2008; Howard 1980; Van de Mortal 2008), leading to potential type II errors. Measuring the biomarkers of stress, such as cortisol levels, heart rate, or blood pressure, in addition to self-report may provide more comprehensive data on parental outcomes. For example, cortisol dysregulation has been associated with parental stress and depression in previous research (e.g., Dykens and Lambert 2013; Seltzer et al. 2010) and may provide an additional measure of improvement in parental stress symptoms following intervention. Finally, the current review evaluated the effectiveness of various interventions. It is still unclear which interventions are most effective in improving parental well-being. Future

research should compare the effectiveness of different types of interventions. It is also worthwhile to compare the effects of group interventions versus individual interventions on parent outcomes. Participating in group interventions may provide parents with the necessary social support needed to enhance parental well-being. Parents of children with ASD may experience social isolation due to the high demands of raising a child with a disability and limited opportunities to participate in social events because of their child’s challenging behavior. Research indicates that socially isolated mothers may experience greater stress and have fewer socially satisfying interactions with their children (e.g., Lee et al. 2008; Heiman and Berger 2008). In addition, Bromley et al. (2004) identified unmet needs among mothers of children with disabilities such as having someone to talk to (85% of mothers) and meeting other parents in socially satisfying situations (69% of mothers). If social isolation and lack of social support is an issue, participating in group interventions may be beneficial for parents of children with ASD because it provides them with an opportunity to connect with other parents who are having similar experiences. Some parents, however, may differentially benefit from or prefer more targeted, intensive, and individualized supports. Practical and Clinical Implications The current literature review provides several clinical implications for working with families of children with ASD. For example, due to the bidirectional relationship between parentchild outcomes, it is important to concurrently target parent outcomes such as stress, depression, and self-efficacy while teaching parents skills they can use to support their child’s development and manage challenging behavior. It may be especially constructive to provide wraparound services for families, in which resources and supports are provided (i.e., parent training, therapeutic services, respite care, social services, family counseling) in addition to developmental and behavioral services for the child. For example, early intervention agencies should collaborate with mental health professionals to provide concurrent referrals upon diagnosis in order to address both parent and child outcomes. It may also be beneficial for early intervention professionals to receive training in the use of assessments (e.g., PSI-SF; PSES; HADS) at intake that directly assess parental well-being prior to intervention in order to inform the appropriate delivery of services for each family. Of particular interest is the relatively large proportion of culturally diverse participants included in this review. Research on the cultural adaptation of interventions indicates that it is important not only to identify evidence-based practices but also to identify which practices work for whom and how to adapt evidence-based practices across diverse cultural, ethnic, and socioeconomic groups (Bernal 2006; Bernal and


Saez-Santiago 2006; Lau 2006). Although parental stress is a common experience across various cultures (e.g., McConkey et al. 2008; Shin et al. 2006; Wang and Day 2011), psychological experiences like stress, depression, and well-being may be especially specific to culture (e.g., Asner-Self et al. 2006; Kirameyer 2001; Ryder et al. 2008; Yen et al. 2000). In addition, parenting practices greatly vary across cultural, ethnic, and socioeconomic groups (e.g., Bradley and Corwyn 2002; Kelley and Tseng 1992; Kotchick and Forehand 2002; Julian and McKelvey 1994; Varela et al. 2004), possibly requiring cultural adaptations to interventions related to parenting. Further research is needed that examines the effects of parent-stress interventions for targeted cultural and ethnic groups.

Conclusion The importance of supporting parental well-being among parents of children with ASD cannot be overemphasized. Parents of children with ASD often experience increased stress, due to the unique challenges of raising a child with ASD. Parental stress may be further exacerbated by specific characteristics associated with ASD, such as poor social communication skills and often high levels of challenging behavior. Parents who experience increased stress or depression or low levels of self-efficacy may be less effective in managing their child’s challenging behavior and implementing interventions to support their child’s development. This review of the literature suggests several promising interventions for improving parental well-being in parents of children with ASD. Overall, the included studies suggest that parent participation in psychoeducational programs, behaviorally based programs, CBT, mindfulness-based programs, and a variety of other interventions may benefit from reduced parental stress and depression and increased self-efficacy. However, there is very little research meeting quality standards that examine on the effectiveness of interventions to support parental well-being in this population. Although there appears to be a shift in focus toward supporting parent outcomes, more research in this area is greatly needed and should be a priority for researchers. Compliance with Ethical Standards This research did not involve any human subjects. Conflict of Interest The authors declare that they have no conflicts of interest.

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