Published as:

Shochet, I., Saggers, B., Carrington, S., Orr, J., Wurfl, A., & Duncan, B. (2019). A Strength-Focused Parenting Intervention May Be a Valuable Augmentation to a Depression Prevention Focus for Adolescents with Autism. Journal of Autism and Developmental Disorders, 1–21. https://doi.org/10.1007/s10803-019-03893-6

A Strength-Focused Parenting Intervention may be a Valuable Augmentation to a Depression Prevention Focus for Adolescents with Autism

Abstract

High depression rates for adolescents with autism indicate a need for a comprehensive prevention approach. Parents can promote parent-child factors that buffer adolescents from depression. However, parenting adolescents with autism presents challenges which can diminish parental self-efficacy and mental wellbeing with potential negative sequelae for their adolescents. This proof-of-concept study investigated the value of adding a strength-focused parenting intervention to a depression-prevention intervention for adolescents with autism. A Consensual Qualitative Research framework analysed 15 parents’ intervention experience. Parents reported that feeling isolated and unsupported by existing services motivated their participation, and they valued interacting with other parent participants. They also reported that the program enhanced wellbeing and parenting efficacy, reduced isolation, increased ability to parent calmly, and improved parent-adolescent relationships.

Keywords: autism spectrum disorder; autism; multilayered school-based intervention; parenting young adolescents with autism; parent self-efficacy and mental wellbeing; Resourceful Adolescent Parent Program RAP-P-ASD

A Strength-Focused Parenting Intervention may be a Valuable Augmentation to a Depression Prevention Focus for Adolescents with Autism

Autism Spectrum Disorder (ASD) is a heterogeneous neurodevelopmental disorder defined in the Diagnostic and Statistical Manual of Mental Disorders (5th ed.; DSM-5; American Psychiatric Association [APA], 2013) as occurring across a spectrum of severity of pervasive symptoms that appear in early childhood and endure across the lifespan, with individuals varying greatly in terms of symptom expression and level of functioning. With the high rate of depression for young adolescents with autism (Mayes, Calhoun, Murray, & Zahid, 2011), and the likelihood that suicidality is more common in adolescents with autism than in adolescents with neurotypical development (Chen et al., 2017; Culpin et al., 2018; Hannon & Taylor, 2013), there is a pressing need for a comprehensive approach to depression prevention in this population. Previous research in this area has highlighted the importance of adding a parent focus to the prevention approach because caregivers (referred to as parents from hereon) offer a crucial resource to promote protective factors for young adolescents with autism (Mackay, Shochet, & Orr, 2017). However, parents of young adolescents with autism face increased challenges themselves which diminish their parental self-efficacy and mental wellbeing (Derguy, Michel, M’Bailara, Roux, & Bouvard, 2015; Karst & Van Hecke, 2012; Pottie & Ingram, 2008;

1

Strength-Focused Parenting Intervention

2

Weiss, Tint, Paquette-Smith, & Lunsky, 2016; Zablotsky, Bradshaw, & Stuart, 2013), with potential negative consequences for their adolescents’ mental wellbeing (Kuhn & Carter, 2006; Weiss, Cappadocia, MacMullin, Viecili, & Lunsky, 2012; Weis et al., 2013). Furthermore, parents with the broader autism phenotype (BAP) or sub-threshold characteristics of autism that may be present in parents of adolescents with autism (Losh, Childress, Lam, & Piven, 2008) may struggle to support their adolescent to overcome difficulties that they themselves encounter. Hence, interventions that enhance parental self-efficacy, diminish the risk factors associated with the challenges of parenting, and help parents to promote core protective factors for the mental health of their adolescents with autism are needed to prevent depression in young adolescents with autism. We report here on the qualitative findings of a proof-of-concept study that uncovered the potential value of adding a strength-focused parenting intervention as an additional layer of a depression-prevention and psychological wellbeing promotion program that targeted young adolescents (defined herein as children aged 11 – 13 years).

Limitations of Depression Prevention Research for Adolescents with Autism

The prevalence of autism is increasing (Centers for Disease Control and Prevention, 2014). Symptoms of autism endure across the lifespan and are complicated by psychosocial difficulties such as depression and reduced psychological wellbeing that emerge in adolescence (APA, 2013), and when left untreated, are likely to extend into adulthood, reducing prospects of engaging in and completing tertiary education, and finding jobs and remaining employed (Taylor, Henninger, & Mailick, 2015). As prevalence estimates for depression in young adolescents with autism are as high as 54% (Mayes et al., 2011), effective interventions to prevent depression in adolescents with autism are important. Programs targeting depression prevention in children with neurotypical development have tended to intervene in early adolescence, as this is the developmental period immediately preceding the age of peak incidence (see Gladstone, Beardslee, & O’Connor, 2011 for review). School-based depression prevention programs for children with neurotypical development have been found to achieve a modest positive effect in depression prevention which increases when targeting adolescents at risk (Corrieri et al., 2014; Merry et al., 2011; Stice, Shaw, Bohon, Marti, & Rohde, 2009; Stockings et al., 2016). However, despite the increased risk of mental health problems in adolescents with autism, there has been a paucity of research on school-based depression prevention programs specifically for this population.

Recent research has implemented an adapted version of an effective depression program for adolescents (the Resourceful Adolescent Program (RAP-A); Shochet & Wurfl, 2015a, 2015b; Shochet, Holland, Osgarby, & Whitefield, 1998). RAP-A is used widely throughout Australia and internationally. Post-session integrity checklists completed by program facilitators, and post-implementation surveys and semi-structured interviews that gathered program evaluations from participants, indicate that RAP-A is well accepted by participants (e.g., Merry, McDowell, Wild, Bir, & Cunliffe, 2004; Shochet et al., 2001; Shochet & Ham, 2004). The adaptation (RAP-A-ASD) aims to improve coping skills, promote depression protective factors, and build resilience so as to foster mental health and wellbeing in young adolescents with autism (Shochet, Mackay, & Wurfl, 2011). RAP-A-ASD is delivered over 11 x 50-minute weekly sessions in schools by a trained facilitator with one young adolescent with autism at a time (for details see Mackay et al., 2017; Shochet et al., 2016). The Mackay et al. (2017) pilot randomised control trial (RCT) of RAP-A-ASD showed significant intervention effects on parent reports of adolescent coping self-efficacy (maintained at 6 month follow-up). In addition, qualitative outcomes reflected perceived improvements from the intervention for adolescents’ coping self-efficacy, self-confidence, social skills, and affect regulation. While these

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results were encouraging, there were no effects on depressive symptoms as reported by either the adolescents (on the Child Depression Inventory (Kovacs, 2003)) or their general mental health functionality as reported by the parents (on the Strengths and Difficulties Questionnaire (Goodman, 1997)). Consistent with Francis (2005) who argues the importance of considering the adolescent with autism within the family context, the authors concluded that a multilayered intervention at both the individual and parent level may increase effectiveness. Such an approach may provide the best opportunity to capitalise on the vital protective factors that parents provide for their young adolescents with autism in order to promote positive mental health and prevent depression for adolescents with autism (see Shochet et al., 2016 for multilayered conceptual model).

Vital Role of Parents in Adolescent Depression Prevention

Important parental factors have been found to buffer adolescents from depression. These include parent self-efficacy, parent affect regulation, parental expressions of caring and warmth, reduced parent-adolescent conflict, and parents’ ability to support their adolescents to develop increasing autonomy while maintaining close parental relationships (see Restifo & Bögels, 2009 for review).

Supporting parents’ self-efficacy (their perceived competency to meet the demands of caring for their adolescent (Coleman & Karraker, 1998)) plays a role in buffering their adolescents from depression. As documented extensively in the literature, parents with high self-efficacy are more likely to feel confident that they can adopt effective parenting skills and exert a positive influence during the adolescent years of their children with neurotypical development, with a reduction in adolescents’ depressive symptoms being one of many optimal psychosocial outcomes reported (e.g., Côté et al., 2009, Jones & Prinz, 2005; Steca, Bassi, Caprara, & Fave, 2011). Parents of adolescents with autism are at increased risk of diminished self-efficacy because caring for these adolescents presents additional parenting challenges compared to the challenges encountered when parenting adolescents with neurotypical development (Kogan et al., 2008; Siklos & Kerns, 2006; Weiss et al., 2016).

Parents’ affect regulation, their ability to regulate their own negative arousal, is closely linked to their self-efficacy as parents, and also plays a role in buffering their adolescents from depression. Parents’ perceived competence to respond in an adaptive manner to their own emotions, and to model this process to their adolescents with neurotypical development, has been found to impact on their adolescents’ ability to regulate distressed affect (e.g., Gross, 2015; Sheeber, Allen, Davis, & Sorensen, 2000). Parental mental wellbeing has been found to have a reciprocal positive effect on the mental health of the young adolescent with autism as well (Kelly, Garnett, Attwood, & Peterson, 2008). However, the additional parenting challenges experienced by many parents of adolescents with autism can have a detrimental effect on parents’ mental health, with parents who are struggling with their own mental health less able to regulate their negative arousal (Derguy et al., 2015; Karst & Van Hecke, 2012; Pottie & Ingram, 2008; Zablotsky et al., 2013). Parents of children with autism are at greater risk of developing anxiety and depressive disorders than parents of children with neurotypical development (Barker et al., 2011; Gau et al., 2012; Piven & Palmer, 1999). This risk is compounded by parents’ heightened susceptibility to social isolation due to time demands associated with caring for a child with autism, and parents’ diminished confidence to connect with others because of fears that their child will be judged unfavourably and/or rejected (Divan, Vajaratkar, Desai, Strik-Lievers, & Patel, 2012; Gray, 2001).

Parental expressions of caring and warmth towards their adolescents with neurotypical development, and parental involvement in pleasant interactions and activities with their adolescents

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convey a sense of acceptance, emotional closeness, availability and responsiveness to the adolescent, with higher levels predicting lower levels of depression in adolescents with neurotypical development (see Yap, Pilkington, Ryan, & Jorm, 2014 for review). Similarly, parental warmth and close parent-child relationships have been associated with improved outcomes for adolescents with autism (Woodman, Smith, Greenberg, & Mailick, 2015). However, the difficulties with socio-emotional reciprocity that young adolescents with autism experience, coupled with the high incidence of challenging behaviours they display, reduce opportunities for spontaneous adolescent-parent shared enjoyment (Seltzer et al., 2010).

Reduced parent-adolescent conflict is another parental factor that can buffer adolescents with neurotypical development from depression (Hale, van der Valk, Akse, & Meeus, 2008; Rueter, Scaramella, Wallace, & Conger, 1999). Challenging parental authority is a normative function of adolescence, with resulting parent-adolescent disagreements facilitating adaptive redefinition of family roles and responsibilities as adolescents mature (Laursen & Collins, 2009; Smetana, 2011). However, parent-adolescent disputes that result in protracted hostility are associated with diminished adolescent wellbeing and increased stress in the family system (Tucker, McHale, & Crouter, 2003). Adolescents who are securely attached to their parents are more likely able to disagree amicably with their parents, to view their parents through a realistic rather than idealizing lens, and to feel supported and understood by their parents (Allen et al., 2003). Conversely, those who are insecurely attached to their parents tend towards behaviours such as excessive reassurance seeking, and are more at risk of exhibiting depressive symptoms (Restifo & Bögels, 2009). The socio-communicative impairments experienced by young adolescents with autism, coupled with their increased susceptibility to disruptive and impulsive behaviour, increase the risk of parent-adolescent misunderstandings and conflict (Brereton, Tonge, & Einfeld, 2006; Orsmond, Seltzer, Greenberg, & Krauss, 2006). Furthermore, compared to children with neurotypical development, significantly fewer children with autism form secure attachment relationships with their parents (see Teague, Gray, Tonge, & Newman, 2017 for review), possibly due to the child’s interpersonal relatedness difficulties disrupting the understanding of the other’s needs and intentions in parent-child interactions (Cortina & Liotti, 2010; Stern, 2004).

Parents’ ability to support their adolescents to develop increasing autonomy while maintaining close parental relationships is yet another important parental factor that has been found to buffer adolescents with neurotypical development from depression. The adolescent developmental tasks of individuation and identity formation require simultaneous closeness and separation from parents and typically co-occur with increased conflict in the parent-adolescent relationship, adolescents’ greater reliance on peer relationships to satisfy their attachment needs, and adolescent cognitive advances such as increased perspective-taking abilities (Allen, 2008; Short & Rosenthal, 2008; Steinberg & Morris, 2001). Difficulties with peer relationships, emotion regulation and meta-cognition experienced by many young adolescents with autism have the potential to make these developmental tasks especially challenging for young adolescents with autism, thereby increasing their risk of depression (Brereton et al., 2006; Mayes et al., 2011; McPheeters, Davis, Navarre, & Scott, 2011). Furthermore, these difficulties can erode parents’ ability to support their adolescents with autism to develop increasing autonomy while maintaining close parental relationships, with the resulting stress impacting on parental mental health (Zablotsky et al., 2013).

Hence, parenting an adolescent with autism presents additional challenges for parents compared to the challenges encountered when parenting adolescents with neurotypical development (Kogan et al., 2008; Siklos & Kerns, 2006). These challenges to parents’ self-efficacy, affect regulation and mental health, combined with the social and emotional difficulties experienced by young

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adolescents with autism, can lead to heightened stress and conflict in the family system (Duarte, Bordin, Yazigi, & Mooney, 2005; Ghaziuddin, Ghaziuddin, & Greden, 2002; Hayes & Watson, 2012; Hoffman, Sweeney, Hodge, Lopez-Wagner, & Looney, 2009). Thus, it would appear that a program for parents that can facilitate the factors of parent self-efficacy and affect regulation, parental expressions of caring and warmth, reduced parent-adolescent conflict, and parents’ ability to support their young adolescents with autism to develop increasing autonomy while maintaining close parental relationships would be beneficial for preventing depression and suicide in these young adolescents.

Supporting Parents of Adolescents with Autism

Despite parents of young adolescents with autism struggling with their own self-efficacy (Weiss et al., 2016) and mental health (Barker et al., 2011; Derguy et al., 2015; Gau et al., 2012; Karst & Van Hecke, 2012; Piven & Palmer, 1999; Pottie & Ingram, 2008; Zablotsky et al., 2013), and parents identifying a need for parenting resources and support (Hartley & Schultz, 2015; Siklos & Kerns, 2006), the majority of interventions focus on the young adolescent with autism, with scant knowledge of, or attention to, the unique needs their parents encounter during their child’s transition from childhood to adolescence (Karst & Van Hecke, 2012). Parent interventions that run alongside adolescent depression-prevention programs can play an important role in boosting parents’ self-efficacy and mental wellbeing, and helping them to assist their adolescents to navigate their challenging teenage years with greater composure, affect regulation and connectedness (Shochet et al., 2001; Shochet & Ham, 2004). The lack of such interventions for parents of young adolescents with autism prompted the consideration of existing programs that have been developed for parents of young adolescents with neurotypical development. One such intervention is the Resourceful Adolescent Program for Parents (RAP-P; Shochet & Wurfl, 2016a, 2016b). RAP-P is a strength-based, parent-child focused, non-blaming resilience-building program that strives to harness parents’ strengths, promote their self-efficacy and help them to promote protective factors for the mental health of their adolescents.

A recent RCT of suicidal adolescents and their parents in an Australian outpatient clinic (N = 48) (Pineda & Dadds, 2013) indicates that RAP-P may be particularly effective when used with selective populations to help parents to manage their stress and to maintain empathy for their adolescents in difficult circumstances. The study compared a family intervention that included RAP-P plus routine care with routine care only. At post-treatment RAP-P was associated with greater improvement in family functioning (i.e., adolescent-parent relationships and parental self and affect regulation), greater reductions in adolescents’ suicidal behaviour, and greater reductions in adolescent psychiatric disability with gains maintained at 6-month follow-up. Changes in adolescent suicidality were largely mediated by the improvement in family functioning which appeared to be the mechanism of change. Thus, we have reason to be encouraged that an adaptation of RAP-P may add value to a suite of interventions for depression prevention in another selective population, that of young adolescents with autism.

The Resourceful Adolescent Program for Parents adapted for parents of young adolescents with autism (RAP-P-ASD) is based on an integration of cognitive-behavioural theory, Bowen Family Systems Theory (Kerr & Bowen, 1988; Titelman, 2014), and knowledge from developmental psychology of the maturational changes that occur naturally during adolescence as well as the specific problems faced by adolescents with autism. RAP-P-ASD draws on cognitive-behavioural strategies for stress management, and management and prevention of conflict (e.g., affect regulation). From the family systems perspective, RAP-P-ASD helps to promote higher levels

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of parental “differentiation of self” (i.e., parents’ ability to reduce their emotional reactivity and manage their emotions in the face of stress and anxiety). For example, parents develop a greater understanding of how they are more effective as parents when they can remain calm. Thus, RAP-P-ASD aims to improve the relationship bond between parents and adolescents, promote harmonious relationships, and prevent conflict. The program also aims to provide parents with greater levels of understanding and empathy for the developmental needs of adolescents in general, and the specific needs of adolescents with autism. For example, parents explore ways of supporting their adolescents to experience a greater sense of belonging at school and in other contexts.

The current study conducted a qualitative exploration of parents’ experience of participating in a proof-of-concept trial of the multilayered RAP intervention in which young adolescents with autism and their parents received RAP-A-ASD and RAP-P-ASD respectively. This trial was conducted within a broader project to promote wellbeing and mental health in young adolescents with autism (the School Connectedness Project; see Shochet et al., 2016 for details), and is referred to as the Adolescent Wellbeing Project from hereon. The aim of the current study was to develop an understanding of the experience of parents who participated in the parent program (RAP-P-ASD) in order to ascertain the value of adding a parenting intervention to an evidence-based, strength-focused resilience intervention designed to promote wellbeing and mental health in young adolescents with autism.

Method

Study Design

This was a qualitative study using the consensual qualitative research (CQR) approach (Hill, 2012; Hill, Thompson, & Williams, 1997; Hill et al., 2005). The main elements in CQR are the use of open-ended questions in semi-structured data-collection techniques, which allows for the collection of consistent data across individuals as well as a more in-depth examination of individual experiences; several judges throughout the data analysis process to foster multiple perspectives; a consensus to arrive at a judgement about the meaning of the data; an external auditor to check the work of the primary team; and domains, core ideas, and cross-analysis to detect common themes in the data (Hill, 2012; Hill et al., 1997, 2005).

Participants

Participants were drawn from the population of parents who participated in the Adolescent Wellbeing Project in 2016. The 2016 Adolescent Wellbeing Project was conducted across three urban schools in Brisbane, Australia, an urban city of approximately 2.3 million people. Criteria for adolescent participation in RAP-A-ASD included enrolment in the first two years of a secondary school participating in the intervention, and a diagnosis from a psychiatrist or paediatrician of ASD as per the DSM 5 (APA, 2013) or autistic disorder, Asperger’s disorder, or PDD-NOS as per the DSM-IV-TR (American Psychiatric Association [APA], 2000). As the cognitive demands of RAP-A-ASD require participants to be high-functioning, individuals with intellectual impairment, severe behavioural difficulties or psychosis were excluded. The opportunity to participate in RAP-P-ASD was offered to all parents or carers of adolescents (aged 11 – 13 years) participating in RAP-A-ASD, and the requirement for participation was the ability to attend at least one of the four RAP-P-ASD workshops. Twenty parents aged approximately 30 to 55 years and from low to middle socioeconomic backgrounds volunteered to attend RAP-P-ASD in 2016, and attendance was

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moderately high (30% attended all 4 workshops, 25% attended 3 workshops, 20% attended 2 workshops, and 25% attended only 1 workshop). Of these parents, 15 (5 males, 10 females) agreed to participate in this qualitative study. The sample size is consistent with that recommended by Hill et al. (1997, 2005) as being necessary to ensure validity in studies of this design, and was hence deemed appropriate for the exploratory qualitative design and to meet the study aims.

Procedure

RAP-P-ASD. This program was implemented according to the RAP-P-ASD treatment manual which is based on the RAP-P manual, and includes the autism-specific adaptations made to the RAP-P program. Changes included an extra session to provide parents with additional time and space to discuss the unique challenges of parenting young adolescents with autism, and additional activities to promote a sense of belonging and highlight the unique opportunities for personal growth that arise from parenting an adolescent with autism. Hence, RAP-P-ASD (see Table 1) consists of a series of four, weekly, group workshops of two and a half hours’ duration. The intervention was implemented in the second and third terms of the Australian school year (i.e., April to September 2016). Separate workshops were conducted for each participating school, and were facilitated by researchers from the Adolescent Wellbeing Project who had undergone the training required to become accredited RAP-P-ASD facilitators. In the first session, facilitators supported parents to identify their existing parental strengths in order to promote parental self-efficacy, explored the manner in which stress affects parents, and promoted an understanding of the efficacy of calm parenting. The second session addressed stress management for parents, provided information about adolescent development, and outlined strategies for promoting adolescent self-esteem and a sense of belonging at home and in the community. The third session focused on the important role that parents play in the life of the developing adolescent, explored strategies for balancing adolescents’ need for independence while strengthening the parent-adolescent relationship bond, and discussed the importance of promoting harmonious family relationships to reduce the stress in the family system. The final session concentrated on strategies for preventing and managing parent-adolescent conflict in order to consolidate family connectedness, and helped parents to reflect on the personal growth that their experience of parenting an adolescent with autism could provide.

 

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Table 1

RAP-P-ASD Program Content

Session Key message Content 1. Parents are

people too!Parents do a great job and deserve a pat on the back!

Parents identify the things they already do well as caregivers. Explore the effects of stress on parenting, and how parenting is more effective when caregivers remain calm.

2. What makes teenagers tick?

Parents are important in supporting the development of adolescents with autism.

Explore and develop stress management strategies for parents. Increase caregiver understanding of the development of adolescents with autism; and their priorities and stressors such as struggling to become independent, making their own decisions, and maintaining a strong relationship bond with their parents while forging their own identity. Explore ways to promote the self-esteem of adolescents with autism and increase their sense of value and inclusion in the family and community.

3. Consolidating family connectedness

Parents always have an important role in the lives of their adolescents with autism.

Explore supporting independence while maintaining a strong relationship bond with the developing adolescent. Discuss the importance of promoting harmonious family relationships.

4. Promoting positive family relationships

Positive family relationships increase self-esteem and wellbeing for all!

Explore successful ways of preventing and managing conflict in the parent-adolescent relationship. Reflect on personal growth as a result of parenting an adolescent with autism, and looking forward to a positive future with the adolescent.

Consent and data collection. Prior to participation, all participants were given a participant information sheet, and provided written consent to participate in the study, for interviews to be audio-recorded, and for the recordings to be transcribed and analysed post de-identification. Parent interviews were conducted one-on-one by telephone at a pre-arranged time in October and November 2016 by a researcher from the Adolescent Wellbeing Project who had not been involved in the program delivery. The interviews were of a semi-structured and mostly open-ended nature, as recommended by Hill et al. (1997), and participants were not given the interview schedule ahead of time. The questions used to guide the parent interviews included, “Can you remember the RAP

Parent Program you participated in?”, “What was your experience of the program?”, “What did

you like most about the program?”, “What did you like the least about the program?”, “Can you

give me any examples of when you have used something discussed in the program? Challenges

you might have approached differently?”, “Have you noticed any changes in your relationship

with your adolescent? If so, can you provide examples of some of these changes?”, “Have you

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noticed any changes in your adolescent?”, “Have you, or anyone else, noticed any differences in

yourself and/or in your parenting? If so, can you tell me more about this?”, “What would you tell

other parents about the program?”, and “What was your main reason for attending? Was that need

met?” Interviews lasted approximately one hour each and were recorded using a digital audio recorder. The audio recordings were transcribed verbatim by a research assistant not involved in the Adolescent Wellbeing Project, and the transcripts were checked for accuracy against the audio recordings and de-identified by a researcher from the Adolescent Wellbeing Project who had not been involved in the interviews.

Data Analysis

The CQR method (Hill, 2012; Hill et al., 1997, 2005) was adopted to analyse the transcript data in four stages. The CQR team consisted of four researchers from the Adolescent Wellbeing Project team, and an auditor who was not part of the research team. First, one member of the research team conducted an initial review of the transcripts and compiled a list of provisional domains (broad topic areas used to cluster information about similar topics) based on material in the transcripts. The four team members then met to review a sub-sample of three transcripts in order to test the validity of the provisional domains. Following this review, the team reached a consensual decision as to the final domains to be used in the analysis. Second, each team member read each transcript independently and organised the raw data in each domain into core ideas (summaries of what each interviewee had said, using fewer words and with more clarity), and then met as a team to discuss the core ideas until a consensus was reached. Third, one member of the research team collated the core ideas from each transcript and employed cross-analysis across all transcripts to identify common themes that occurred in each core idea within each domain. The common themes were then checked and discussed by the team until a consensus was reached. Fourth, one member of the research team tallied two quantitative scores for each common theme to provide an indication of the relative importance of the themes within each core idea. Consistent with CQR methodology, an unweighted score (1 – 15) was used to indicate the number of interview transcripts (which ranged from 1 – 15) in which the common theme appeared. A weighted score was used to indicate the total number of instances in which the common theme occurred across all the interview transcripts, including multiple instances within a single transcript.

The external auditor provided detailed feedback at each of the four stages of the analysis process. The auditor checked that all relevant raw material had been extracted, that the raw material was in the correct domain, that all important material had been represented in the core ideas, that the wording of the core ideas captured the essence of the raw data, that the cross-analysis had accurately identified the common themes that represented the data, and that the quantitative unweighted and weighted scores had been calculated correctly.

Results

Parents’ Experience of Participation

Using the CQR procedure to analyse the qualitative data gathered from the parent interviews meant that disagreements about the existence and wording of domains, core ideas and themes were discussed by the research team until a consensus that the analysis best portrayed what the parents were conveying was reached. For example, the wording of the third domain was honed from “Parents’ experience of changes in the parent-adolescent relationship as a result of participating

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in RAP-P-ASD” to “Parents’ experience of changes in parenting style and the parent-adolescent relationship”.

The CQR analysis identified seven domains. The four domains that best described parents’ experience of participating in the multilayered RAP intervention, and that are explored in detail in this paper, included parents’ reasons for participation in the RAP parent program, aspects of participation that parents experienced as helpful, parents’ experience of changes in parenting style and the parent-adolescent relationship, and parents’ experience of becoming more resourceful as parents as a result of participating in RAP-P-ASD. These domains, together with the core ideas, principal themes within each core idea, quantitative scores (unweighted and weighted) that provided an indication of the relative importance of themes within each core idea, and illustrative quotes from the raw transcript data for each theme, are set out in Tables 2 to 5. The themes are presented in rank order, with those having the highest weighted score at the top of the list within each core idea, and those with the lowest weighted score at the bottom of the list within each core idea. The six most salient common themes fell within the second domain, “Aspects of participation that parents experienced as helpful”. The most highly rated common theme, “validated and reinforced that parents are already doing a good job” was derived from comments that were made 71 times in the interviews by 11 parents (73%), and conveyed that RAP-P-ASD provided parents with much needed reassurance in the form of support and validation, and reduced their parenting anxiety. The second most highly rated common theme, “perceived as good and helpful for the parent themselves” was derived from comments that were made 52 times in the interviews by 12 parents (80%), and reflected that parents experiencing adversity associated with the challenges of parenting a young adolescent with autism perceived RAP-P-ASD to be a positive and beneficial experience. The third most highly rated common theme, “felt understood and no longer felt alone”, was formed from comments that were made 32 times in the interviews by 13 parents (87%), and conveyed that parents valued the connectedness with other parents that participation in RAP-P-ASD afforded. The fourth most highly rated common theme, “enjoyable”, was derived from comments made 26 times in the interviews by 11 parents (73%), and highlighted that participating in RAP-P-ASD had been a positive experience for these parents. The fifth most highly rated common theme, “informative”, was formed from comments that were made 19 times in the interviews by 7 parents (47%) who found the content of the program useful. The sixth most highly rated common theme, “would recommend it to other parents”, was derived from comments made 18 times by 12 parents (80%), and reinforced that these parents had found the program sufficiently useful that they would endorse participation to other parents.

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Tabl

e 2

Do

ma

in 1

: Pa

ren

ts’ R

ea

son

s fo

r P

art

icip

ati

on

in t

he

RA

P P

are

nt

Pro

gra

m

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Seek

ing

supp

ort

Feel

ing

isol

ated

or a

lone

916

“You

can

feel

ver

y is

olat

ed”

“hav

ing

a ki

d on

the

spec

trum

can

be

a lo

nely

pla

ce to

be

a lo

t of t

he ti

me”

“t

here

doe

sn’t

seem

to b

e m

uch

in th

e w

ay o

f sup

port

netw

orks

for p

aren

ts”

“it c

an b

e [h

elpf

ul] f

or [p

aren

ts] t

o ju

st fe

el th

ey’re

not

on

thei

r ow

n”

Stru

gglin

g to

feel

effe

ctiv

e as

a

pare

nt6

8“I

don’

t rea

lly fe

el a

dequ

ate”

“w

e fin

d it

hard

to fe

el th

at w

e’re

doi

ng a

nyth

ing

wel

l” “It

’s al

way

s ab

out t

he n

egat

ive

of ‘w

e’re

stu

ck h

ere,

wha

t do

we

do?’

”

Feel

ing

over

whe

lmed

with

pa

rent

ing

a ch

ild w

ith a

utis

m6

7“It

's a

big

shoc

k w

hen

you

find

out t

hat t

his

is w

hat's

goi

ng o

n w

ith y

our c

hild

” “n

egot

iatin

g w

ith h

im is

impo

ssib

le b

ecau

se h

e do

esn’

t car

e ab

out a

nyth

ing.

I gu

ess

that

’s pa

rt of

th

e de

pres

sion

, but

if h

e do

esn’

t wan

t to

do s

omet

hing

, I’v

e go

t not

hing

to w

ork

with

bec

ause

he’

ll ju

st s

ay, ‘

I don

’t ca

re’”

“It ta

kes

a lo

t of p

atie

nce

and

a lo

t of c

alm

ness

to n

ot g

et s

o fru

stra

ted

with

him

” “I’

ve e

ven

thou

ght a

bout

livi

ng in

the

coun

try, s

o th

at w

hen

she

has

mel

tdow

ns, a

nd I’

m y

ellin

g …

ha

lf th

e ci

ty b

lock

doe

sn’t

hear

it”

Feel

ing

mis

unde

rsto

od3

5“W

ith th

e pa

rent

s w

ho d

on't

have

chi

ldre

n w

ith s

peci

al n

eeds

…it'

s di

fficu

lt on

a d

eepe

r lev

el fo

r pe

ople

to re

ally

und

erst

and”

“Som

e pe

ople

just

thin

k th

at th

ese

child

ren

can

be …

delib

erat

ely

diffi

cult

or c

halle

ngin

g …

.it's

very

up

setti

ng w

hen

I thi

nk p

eopl

e ju

st th

ink

he's

bein

g di

fficu

lt”

“peo

ple

say

‘It’s

just

her

teen

age

year

s’… th

ey d

on’t

real

ise

wha

t you

're g

oing

thro

ugh”

Pauc

ity o

f pro

gram

s fo

r par

ents

of

you

ng a

dole

scen

ts w

ith

autis

m

24

“I do

n’t t

hink

ther

e’s

a lo

t of s

uppo

rt to

hel

p pa

rent

s na

viga

te th

roug

h w

hat t

hey’

re e

xper

ienc

ing”

“o

ften

the

focu

s is

prim

arily

on

the

child

ren…

pro

babl

y le

ss fo

cus

on p

aren

ts”

“The

rela

tions

hip

betw

een

the

pare

nt a

nd c

hild

is in

terre

late

d [b

ut] m

any

prog

ram

s on

ly lo

ok a

t on

e an

d no

t bot

h”

12

Tabl

e 2

(con

t)

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Know

ledg

e an

d pa

rent

ing

skill

s ac

quis

ition

Seek

ing

info

rmat

ion

on

pare

ntin

g a

youn

g ad

oles

cent

w

ith a

utis

m

914

“Som

etim

es w

hen

you’

re d

ealin

g w

ith a

n AS

D k

id …

you

don

’t kn

ow if

you

’re a

ctua

lly d

oing

th

e rig

ht th

ings

esp

ecia

lly if

the

kid

isn’

t beh

avin

g”

“To

help

edu

cate

and

sup

port

me

… to

then

hel

p su

ppor

t [m

y so

n]”

“See

how

oth

er p

eopl

e ar

e de

alin

g w

ith th

eir l

ittle

ASD

chi

ldre

n”

Und

erst

andi

ng d

evel

opm

enta

l ch

ange

s in

you

ng a

dole

scen

ts

with

aut

ism

34

“Und

erst

and

[her

] way

of t

hink

ing,

the

age

she’

s at

and

wha

t’s im

porta

nt to

her

” “T

here

’s a

lot o

f cha

nges

with

him

goi

ng in

to te

enag

e ye

ars.

I’ve

foun

d th

at h

e’s

beco

min

g m

ore

clos

ed a

bout

cer

tain

issu

es”

Bein

g be

tter p

repa

red

for

futu

re c

halle

nges

34

“It m

ight

hel

p m

e w

ith w

ays

to d

eal w

ith h

er if

she

… h

as a

n ou

tbur

st”

“You

look

at [

your

chi

ld] a

nd th

ink

‘Oh

my

God

, you

’re g

oing

out

into

the

big

bad

wor

ld

shor

tly’…

how

to h

ave

them

wel

l-adj

uste

d an

d co

ping

?”

To b

enefi

t my/

our y

oung

ad

oles

cent

with

au

tism

To li

nk in

with

oth

er

com

pone

nts

of th

e Sc

hool

C

onne

cted

ness

Pro

ject

45

“I w

as in

tere

sted

in w

hat [

my

son]

was

doi

ng b

ecau

se h

e do

esn’

t rea

lly s

ay m

uch”

“I

knew

it w

as a

foru

m to

hel

p us

to e

ngag

e th

e sc

hool

, and

the

com

mun

ity, a

nd h

ave

a lin

k w

ith th

em, w

hich

I re

ally

wan

ted”

To im

prov

e co

mm

unic

atio

n/

rela

tions

hip

23

“Be

in th

at s

ame

fram

e of

min

d”

“Lis

teni

ng is

… n

ot o

ne o

f my

stre

ngth

s”

Stre

ngth

en c

o-pa

rent

ing

To b

enefi

t the

oth

er p

aren

t2

4“I

wan

ted

to d

o it

for [

the

mot

her]

… I

thou

ght s

he’d

ben

efit m

ore

out o

f it”

“It

was

… a

way

to g

et [m

y hu

sban

d] in

for s

ome

pare

ntin

g tra

inin

g”

To h

elp

us to

par

ent t

oget

her

12

“I w

as re

ally

ple

ased

that

I co

uld

conv

ince

[the

fath

er] t

hat i

t was

impo

rtant

to c

ome

and

just

se

e w

hat i

t was

abo

ut -

to h

ave

that

oth

er p

ersp

ectiv

e. T

his

is a

noth

er w

ay o

f dea

ling

with

[s

ituat

ions

] … it

was

n’t j

ust m

e te

lling

him

”

Build

the

know

ledg

e ba

se

Assi

st w

ith re

sear

ch to

impr

ove

expe

rienc

e fo

r oth

er p

aren

ts o

f ad

oles

cent

s w

ith a

utis

m

44

“[It i

s pa

rt of

] ong

oing

rese

arch

that

mig

ht b

enefi

t oth

er p

eopl

e as

wel

l as

my

fam

ily”

“We

coul

d se

e th

e be

nefit

for o

ther

s …w

e do

n’t w

ant o

ther

par

ents

to h

ave

to g

o th

roug

h th

e sa

me

thin

g w

e di

d, w

e w

ant m

ore

info

rmat

ion

out t

here

and

mor

e su

ppor

t”

No

te. T

he u

nwei

ghte

d sc

ore

indi

cate

s th

e to

tal n

umbe

r of t

rans

crip

ts in

whi

ch th

e co

mm

on th

eme

appe

ared

. The

wei

ghte

d sc

ore

indi

cate

s th

e to

tal n

umbe

r of

inst

ance

s ac

ross

all

trans

crip

ts in

whi

ch e

ach

com

mon

them

e oc

curre

d.

13

Tabl

e 3

Do

ma

in 2

: Asp

ect

s o

f P

art

icip

ati

on

th

at

Pa

ren

ts E

xpe

rie

nce

d a

s H

elp

ful

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Supp

ortiv

e an

d va

lidat

ing

Valid

ated

and

rein

forc

ed th

at

pare

nts

are

alre

ady

doin

g a

good

job

1171

“It’s

a ve

ry s

treng

ths-

base

d pr

ogra

m -

look

s at

the

stre

ngth

s of

the

pare

nts”

“T

hat f

eedb

ack

of b

eing

a g

ood

pare

nt, a

nd th

at I’

m d

oing

the

right

thin

g by

my

kids

. No

one

ever

tells

me

that

so

that

was

wor

th g

old

to m

e”

“It re

min

ded

me

that

I’m

doi

ng a

goo

d jo

b”

Ackn

owle

dged

the

chal

leng

es

of p

aren

ting

youn

g ad

oles

cent

s w

ith a

utis

m

22

“I gu

ess

I'm c

omfo

rted

that

oth

er p

aren

ts a

re g

oing

thro

ugh

… th

e sa

me

stuff

” “It

pro

babl

y ru

ns o

n a

diffe

rent

thre

ad to

how

oth

er p

aren

ting

prog

ram

s ru

n, a

nd

ackn

owle

dges

, pro

babl

y, th

e di

fficu

lty o

f thi

s pa

rticu

lar g

roup

of k

ids”

Posi

tive

expe

rienc

ePe

rcei

ved

as g

ood

and

help

ful

for t

he p

aren

t the

mse

lves

1252

“It w

as re

ally

hel

pful

” “T

he p

rogr

am w

as re

ally,

real

ly g

ood,

I ac

tual

ly g

ot h

uge

amou

nts

out o

f it”

“I

lear

ned

a lo

t”

Enjo

yabl

e11

26“I

enjo

yed

it”

“I lo

ved

ever

ythi

ng a

bout

the

prog

ram

” “T

here

wer

e so

me

funn

y m

omen

ts th

at w

ere

shar

ed”

“I re

ally

look

ed fo

rwar

d to

goi

ng”

Hel

pful

for o

ther

par

ents

33

“Hel

ping

oth

ers

in a

gro

up li

ke th

at b

ecau

se y

ou c

an s

hare

you

r ide

as”

“We

coul

d se

e th

e be

nefit

for o

ther

s”

Con

nect

edne

ss

with

oth

er

pare

nts

Felt

unde

rsto

od a

nd n

o lo

nger

fe

lt al

one

1332

“I w

asn’

t the

onl

y pa

rent

in th

at b

oat…

ther

e w

ere

othe

r par

ents

[who

] had

kid

s in

sim

ilar

situ

atio

ns…

so

it w

as c

onne

ctin

g… s

eein

g ot

her p

eopl

e ar

e st

rugg

ling…

you

nev

er m

eet t

hose

pe

ople

, nev

er h

ear a

bout

them

, so

mee

ting

them

was

gre

at”

“It a

llow

ed u

s to

sha

re e

xper

ienc

es th

at m

ade

us fe

el le

ss is

olat

ed”

Oth

er p

aren

ts’ s

torie

s he

lped

m

e to

real

ise

that

we

are

copi

ng b

ette

r tha

n so

me

45

“Tim

es w

here

oth

er p

aren

ts w

ere

talk

ing

abou

t [pa

rent

ing

chal

leng

es]…

. I s

ort o

f wen

t ‘W

e’ve

be

en th

ere,

we’

re a

ctua

lly in

a b

ette

r pla

ce th

an w

e w

ere’

” “H

earin

g w

hat o

ther

peo

ple

are

goin

g th

roug

h - i

t’s g

ood

to g

o [m

y lif

e is

] not

that

bad

”

14

Tabl

e 3

(con

t)

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Use

ful

Info

rmat

ive

719

“It w

as v

ery

usef

ul”

“The

con

tent

was

goo

d an

d ve

ry in

form

ativ

e an

d ve

ry s

uppo

rtive

”

Wou

ld re

com

men

d it

to o

ther

pa

rent

s12

18“I

wou

ld h

ighl

y re

com

men

d th

ey d

o it…

it is

suc

h a

posi

tive

thin

g an

d yo

u le

arn

so m

uch

abou

t you

rsel

f and

the

way

you

par

ent.

It fa

r exc

eede

d m

y ex

pect

atio

ns”

“I’ve

alre

ady

told

ano

ther

par

ent a

bout

it”

Pick

ed u

p tip

s fro

m o

ther

pa

rent

s8

16“T

hey

talk

ed a

bout

this

inde

pend

ence

with

atta

chm

ent.

One

of t

he la

dies

talk

ed a

bout

her

so

n go

ing

on th

e bu

s - t

hey’

d do

ne th

e dr

y ru

n on

the

bus.

I sh

ould

pro

babl

y be

doi

ng a

bi

t mor

e of

that

sor

t of s

tuff

with

[my

son]

to tr

y an

d fin

d op

portu

nitie

s fo

r him

to g

et th

at

inde

pend

ence

” “L

earn

ed a

lmos

t mor

e fro

m th

e ot

her p

aren

ts -

how

they

app

roac

hed

som

ethi

ng”

“Hea

ring

thei

r sto

ries,

the

way

they

wor

ked

thro

ugh

thin

gs, t

he w

ay th

ey c

oped

”

Prov

ided

pra

ctic

al to

ols/

stra

tegi

es8

15“G

ave

us te

chni

ques

of t

hing

s th

at w

e co

uld

try th

at w

e ha

dn’t

thou

ght o

f, or

oth

er w

ays

arou

nd s

ome

of th

e is

sues

that

may

cro

p up

” “T

he th

ing

I mos

t too

k aw

ay w

as a

ll ab

out t

he c

alm

par

entin

g - t

hat i

s ve

ry h

ard

to d

o fo

r any

pa

rent

but

par

ticul

arly

for a

par

ent w

ith a

chi

ld o

n th

e sp

ectru

m”

Inte

grat

ed im

porta

nt id

eas

34

“I th

ough

t it w

as w

ell s

truct

ured

… m

ost o

f it c

over

ed d

iffer

ent s

tuff

that

had

com

e up

ove

r th

e ye

ars…

[and

it]b

roug

ht it

all

toge

ther

… [i

n a]

stru

ctur

e th

at…

follo

wed

…lo

gica

lly fr

om o

ne

wee

k to

the

next

”

Link

ed th

e pa

rent

ing

prog

ram

w

ith th

e ad

oles

cent

pro

gram

22

“The

y ex

plai

ned

wha

t [he

] wou

ld b

e do

ing

and

show

ed u

s a

Pow

erPo

int a

bout

som

e of

the

sess

ions

that

he

was

hav

ing”

“H

avin

g do

ne [r

isky

or r

esou

rcef

ul th

inki

ng] a

t the

par

ent t

hing

, I w

as th

en a

ble

to im

plem

ent

that

at h

ome

[with

my

child

]”

Take

-hom

e w

orkb

ook

22

“[The

faci

litat

or] s

aid

she

keep

s he

r RAP

wor

kboo

k, a

nd w

hen

she’

s no

t hav

ing

such

a g

reat

tim

e, s

he ju

st fl

icks

thro

ugh

it an

d it’

ll re

min

d he

r …I a

ctua

lly th

ink

that

’s a

good

idea

… th

ere

are

som

e gr

eat t

hing

s ab

out m

y ki

ds in

her

e”

Stre

ngth

ened

par

entin

g bo

nd

betw

een

sepa

rate

d pa

rent

s1

2“H

elpe

d us

… to

real

ise

… th

at w

e’re

bot

h on

the

sam

e pa

th …

no

mat

ter w

hat’s

hap

pene

d be

twee

n us

… w

hen

it co

mes

to th

e ki

ds …

we’

re a

gree

able

on

thin

gs”

15

Tabl

e 3

(con

t)

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Atm

osph

ere

Prov

ided

an

oppo

rtuni

ty a

nd

spac

e in

whi

ch to

refle

ct8

16“It

giv

es y

ou s

ome

room

to th

ink

abou

t how

to d

o th

ings

, and

how

you

sho

uld

be d

oing

th

ings

bas

ed o

n ex

perie

nce

… h

ow to

app

roac

h th

ings

” It

was

kin

d of

a fo

rced

refle

ctio

n fo

r me

whi

ch is

a g

ood

thin

g be

caus

e I t

hink

that

I’ve

got

so

muc

h on

”

Prov

ided

a s

afe

and

wel

com

ing

spac

e8

11“It

was

a s

mal

l gro

up…

you

cou

ld li

tera

lly re

late

to p

eopl

e th

at w

ere

answ

erin

g, a

nd …

it be

cam

e a

bit m

ore

pers

onal

” “It

’s a

rela

xed

prog

ram

” “[T

he fa

cilit

ator

s] d

id a

goo

d jo

b of

mak

ing

us fe

el c

omfo

rtabl

e”

Felt

com

forta

ble

shar

ing

pare

ntin

g ex

perie

nces

69

“Eve

ryon

e w

as v

ery

open

abo

ut th

eir r

elat

ions

hip

with

thei

r chi

ldre

n an

d th

e da

ily s

tress

es

they

go

thro

ugh”

“It

was

n’t u

ncom

forta

ble

at a

ll to

be

mak

ing

com

men

ts”

“It p

rovi

ded

a sp

ace

that

was

sup

porti

ve a

nd n

on-ju

dgm

enta

l”

Wel

l fac

ilita

ted

grou

p7

8“[T

he fa

cilit

ator

s] w

ere

real

ly v

ery

open

. The

y w

ould

talk

abo

ut th

eir c

hild

ren

freel

y. Th

ey’d

ju

st b

ounc

e id

eas

off e

ach

othe

r”

“It w

as ru

n sm

ooth

ly a

nd p

rofe

ssio

nally

”

Stre

ngth

s-ba

sed

Hig

hlig

hted

stre

ngth

s of

you

ng

adol

esce

nts

with

aut

ism

57

“It’s

a ve

ry s

treng

ths-

base

d pr

ogra

m…

it re

ally

look

s at

the

stre

ngth

s of

the

kids

” “O

ur c

hild

ren

are

abso

lute

ly a

maz

ing,

and

they

can

do

real

ly fu

nny

thin

gs th

at m

ake

you

laug

h - i

t was

als

o go

od to

look

at o

ur p

ositi

ve fe

elin

g ab

out o

ur k

ids”

Hig

hlig

hted

par

ents

’ stre

ngth

s as

par

ents

45

“I ne

ed to

, as

a pa

rent

, rem

embe

r tha

t I’m

impo

rtant

too

and

my

stre

ngth

s as

a p

aren

t are

im

porta

nt a

s w

ell”

Acce

ssib

leSh

ort d

urat

ion

33

“Wha

t I li

ked

was

the

shor

tnes

s of

it. I

t was

n't f

orev

er”

Reca

ps c

ater

ed fo

r mis

sed

sess

ions

11

“I m

isse

d th

e se

cond

one

but

got

a re

cap

in th

e th

ird w

eek”

No

te. T

he u

nwei

ghte

d sc

ore

indi

cate

s th

e to

tal n

umbe

r of t

rans

crip

ts in

whi

ch th

e co

mm

on th

eme

appe

ared

. The

wei

ghte

d sc

ore

indi

cate

s th

e to

tal n

umbe

r of

inst

ance

s ac

ross

all

trans

crip

ts in

whi

ch e

ach

com

mon

them

e oc

curre

d.

16

Tabl

e 4

Do

ma

in 3

: Pa

ren

ts’ E

xpe

rie

nce

of

Ch

an

ge

s in

Pa

ren

tin

g S

tyle

an

d t

he

Pa

ren

t-A

do

lesc

en

t R

ela

tio

nsh

ip

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Incr

ease

d pa

rent

-ad

oles

cent

co

nnec

tedn

ess

Impl

emen

ting

stra

tegi

es

lear

ned

toge

ther

46

“I sa

id, ‘

Is th

at ri

sky

thin

king

, or p

ositi

ve th

inki

ng?’,

and

she

wen

t ‘Th

at’s

risky

thin

king

’ and

I w

ent ‘

Wha

t's a

bet

ter w

ay o

f thi

nkin

g th

is th

roug

h?’”

Clo

ser r

elat

ions

hip

bond

55

“It's

give

n us

a b

it m

ore

of a

bon

d …

[our

rela

tions

hip]

defi

nite

ly h

as b

een

impr

ovin

g”

Hig

hlig

htin

g po

sitiv

es3

4“I

cam

e ho

me

and

ever

ythi

ng w

as d

one

and

they

wer

e ca

lm a

nd I

mad

e a

huge

fuss

of

them

… h

e ki

nd o

f loo

ked

puffe

d up

with

prid

e - l

iftin

g hi

s sh

ould

ers

a lit

tle b

it, h

oldi

ng h

is

head

up

high

, he

smile

d. W

hen

I pra

ised

him

, he

was

ver

y ha

ppy

and

grat

eful

”

Youn

g ad

oles

cent

is m

ore

affec

tiona

te to

war

ds p

aren

t2

2“H

e’ll

com

e up

and

just

hav

e a

brie

f hug

” “H

e to

ld m

e he

love

s m

e”

Impr

oved

co

mm

unic

atio

nM

ore

min

dful

abo

ut

com

mun

icat

ion

styl

e3

6“T

o ap

proa

ch h

er li

ke I’

d lik

e to

be

appr

oach

ed if

I w

as in

her

sho

es”

“Giv

e [h

im] s

ome

valid

atio

n th

at [I

] did

list

en, a

nd th

at [I

] mig

ht d

o so

met

hing

abo

ut it

in th

e fu

ture

… [i

nste

ad o

f] ju

st g

oing

, ‘W

ell,

we’

re d

oing

it m

y w

ay’”

Che

ckin

g un

ders

tand

ing

12

“We’

ve fo

und

it ve

ry im

porta

nt to

ask

[him

] wha

t he

thin

ks”

“Lea

rnin

g [th

at] h

is v

iew

and

per

spec

tive

is c

ompl

etel

y di

ffere

nt to

our

s”

Men

ding

rupt

ures

12

“I sa

id to

her

‘I’m

real

ly s

orry

that

I ye

lled’

, and

I ex

plai

ned

why

, and

she

told

me

wha

t she

felt,

so

we

had

a re

ally

goo

d di

scus

sion

aro

und

that

”

Redu

ced

confl

ict

Few

er a

rgum

ents

23

“Bei

ng a

ble

to ju

st ta

lk s

ome

thin

gs th

roug

h w

ithou

t hav

ing

like

a bi

g ar

gum

ent”

Pick

ing

the

natu

re a

nd ti

min

g of

our

bat

tles

33

“I sa

y, ‘I'

m n

ot g

oing

to ta

lk to

you

whi

le y

ou're

like

this

- yo

u're

not

goi

ng to

list

en’"

“If s

he’s

not m

eltin

g, th

en w

e re

spon

d in

a m

uch

mor

e po

sitiv

e w

ay”

Mor

e ne

gotia

tion

22

“I sa

id ‘A

ll rig

ht, y

ou c

an g

o to

bed

unt

il 10

:00.

I'm

goi

ng to

ring

you

, and

you

're g

oing

to g

et

up a

nd h

ave

a sh

ower

and

I'll

com

e ho

me

and

get y

ou a

nd ta

ke y

ou to

sch

ool’"

Und

erst

andi

ng n

eed

for

priv

acy

of y

oung

ado

lesc

ent

with

aut

ism

12

“[Sh

e sa

id] ‘

Ever

yone

wal

ks in

to th

e ba

thro

om w

hen

I’m th

ere’

and

I w

ent ‘

Wel

l, w

e w

ill

ende

avou

r to

knoc

k, o

k?’”

No

te. T

he u

nwei

ghte

d sc

ore

indi

cate

s th

e to

tal n

umbe

r of t

rans

crip

ts in

whi

ch th

e co

mm

on th

eme

appe

ared

. The

wei

ghte

d sc

ore

indi

cate

s th

e to

tal

num

ber o

f ins

tanc

es a

cros

s al

l tra

nscr

ipts

in w

hich

eac

h co

mm

on th

eme

occu

rred.

17

Tabl

e 5

Do

ma

in 4

: Pa

ren

ts’ E

xpe

rie

nce

of

Be

com

ing

Mo

re R

eso

urc

efu

l as

Pa

ren

ts a

s a

Re

sult

of

Pa

rtic

ipa

tin

g in

RA

P-P

-AS

D

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Find

ing

pare

ntin

g ea

sier

Skill

s le

arne

d ar

e he

lpfu

l7

12“It

’s de

finite

ly h

elpe

d m

y pa

rent

ing

out a

littl

e bi

t”

“Hav

ing

a di

ffere

nt w

ay o

f thi

nkin

g ab

out c

onfli

ct -

you

don’

t fee

l lik

e yo

u’re

refe

reei

ng a

bo

xing

mat

ch s

endi

ng e

very

one

to th

eir c

orne

rs u

ntil

they

cal

m d

own

agai

n”

“Fin

ding

sim

ple

way

s of

dea

ling

with

thin

gs -

it’s

so o

verw

helm

ing

for h

im”

“It’s

been

eas

ier t

o br

ing

her b

ack

dow

n w

hen

she’

s be

en a

ngry

”

Bein

g ca

lm m

akes

for e

ffect

ive

pare

ntin

g5

5“S

uper

cal

m p

aren

ting!

I try

to re

min

d …

to re

min

d m

ysel

f whe

n I f

eel m

ysel

f get

ting

angr

y to

ju

st ta

ke it

dow

n…yo

u ca

n’t p

aren

t pro

perly

unl

ess

calm

”

Mor

e in

sigh

tful

Bette

r abl

e to

con

side

r you

ng

adol

esce

nt’s

poin

t of v

iew

712

“Thi

nkin

g ab

out w

hat i

t's li

ke to

be

in m

y ch

ild's

shoe

s, w

hich

I te

nd to

forg

et. I

thin

k it'

ll he

lp

me

unde

rsta

nd h

im m

ore

… a

bout

how

the

wor

ld is

to h

im”

“I pr

obab

ly h

ave

a gr

eate

r app

reci

atio

n fo

r him

…try

ing

to fi

nd h

is p

lace

in th

is w

orld

and

fit i

n,

like

any

teen

ager

, is

diffi

cult”

Gre

ater

aw

aren

ess

of

alte

rnat

ive

met

hods

of

pare

ntin

g

23

“I w

as a

ble

to re

cogn

ise

thro

ugh

othe

rs w

hat I

sho

uldn

't be

doi

ng”

“It’s

mad

e us

mor

e aw

are

of b

uild

ing

conn

ectio

ns w

ith te

enag

ers”

Gre

ater

sel

f-aw

aren

ess

22

“I th

ink

my

expe

ctat

ions

tend

to b

e a

little

hig

h …

that

he

can

chan

ge h

is b

ehav

iour

…I w

ant t

o ch

ange

min

e an

d I'm

not

on

the

spec

trum

, and

yet

I fin

d it

chal

leng

ing

to c

hang

e”

Impr

oved

stre

ss

man

agem

ent

Mor

e pr

oact

ive

abou

t de-

esca

latin

g si

tuat

ions

58

“If I

notic

e th

at s

he's

getti

ng re

ally

anx

ious

and

stre

ssed

, I ju

st g

o, ‘Y

ou n

eed

to g

o an

d ta

ke

som

e br

eath

ing,

cal

m y

ours

elf d

own

and

then

we'

ll ta

lk a

bout

stu

ff’"

“Try

ing

to k

eep

mys

elf i

n lin

e fir

st b

efor

e I t

ry to

app

roac

h th

ings

”

Mak

ing

time

for s

elf-c

are

27

“Tak

ing

som

e tim

e ou

t for

me

so th

at I

can

cope

with

stre

ss b

ette

r”

“I’ve

org

aniz

ed a

cou

ple

of s

leep

over

s fo

r the

kid

s so

that

my

husb

and

and

I cou

ld h

ave

time

on o

ur o

wn”

Mor

e co

mpa

ssio

nate

tow

ards

m

ysel

f5

5“I’

ve b

ecom

e a

lot l

ess

hars

h on

mys

elf”

“F

or m

e, th

e ha

rdes

t par

t of t

he w

hole

cou

rse

was

lear

ning

sel

f-app

reci

atio

n”

18

Tabl

e 5

(con

t)

Cor

e id

eaC

omm

on th

emes

Impo

rtanc

eEx

ampl

es o

f illu

stra

tive

quot

esU

nwei

ghte

dW

eigh

ted

Und

erst

andi

ng

the

impo

rtanc

e of

in

depe

nden

ce

whi

le

mai

ntai

ning

pa

rent

-ad

oles

cent

re

latio

nshi

p bo

nd

Plan

ning

for i

ndep

ende

nce

whi

le m

aint

aini

ng p

aren

t-ad

oles

cent

rela

tions

hip

bond

23

“The

y’ve

act

ually

invi

ted

him

to g

o aw

ay fo

r a n

ight

with

them

…an

d ra

ther

than

put

him

in

that

pos

ition

whe

re h

e ha

s to

sho

w h

is fr

iend

s th

at h

e ju

st c

an’t

cope

[with

bei

ng a

way

ov

erni

ght],

we

just

… c

an p

ick

him

up”

Fost

erin

g in

depe

nden

ce w

hile

m

aint

aini

ng p

aren

t-ado

lesc

ent

rela

tions

hip

bond

23

“I th

ink

unde

rsta

ndin

g hi

s in

depe

nden

ce, b

ut a

lso

depe

nden

ce…

I had

n't r

eally

thou

ght a

bout

th

at to

o m

uch…

kids

wan

ting

mor

e in

depe

nden

ce, b

ut s

till w

antin

g to

be

a pa

rt of

the

fam

ily”

Feel

ing

mor

e su

ppor

ted

Con

nect

edne

ss w

ith o

ther

pa

rent

s2

3“I

said

to [a

noth

er p

aren

t], ‘L

et's

get e

ach

othe

r's n

umbe

rs a

nd tr

y an

d st

ay in

touc

h… w

e've

go

t som

ethi

ng in

com

mon

… th

e co

nnec

tedn

ess

and

the

unde

rsta

ndin

g th

at c

omes

thro

ugh

shar

ed e

xper

ienc

e…it

mig

ht b

e ni

ce fo

r the

kid

s to

mee

t as

wel

l’”

Incr

ease

d co

nfide

nce

in

pare

ntin

g ab

ility

Reco

gnis

ing

wha

t I d

o w

ell a

s a

pare

nt2

2“I

thin

k I'v

e go

t mor

e to

lera

nce

and

patie

nce

with

the

kids

bec

ause

I fe

el b

ette

r and

mor

e co

nfide

nt a

bout

wha

t I'm

doi

ng is

the

right

thin

g”

No

te.

The

unw

eigh

ted

scor

e in

dica

tes

the

tota

l num

ber o

f tra

nscr

ipts

in w

hich

the

com

mon

them

e ap

pear

ed. T

he w

eigh

ted

scor

e in

dica

tes

the

tota

l num

ber o

f in

stan

ces

acro

ss a

ll tra

nscr

ipts

in w

hich

eac

h co

mm

on th

eme

occu

rred.

19

While not presented in the tables, the three remaining domains included parents’ experience of change in their young adolescent with autism as a result of participating in the program, aspects of participation that parents experienced as challenging, and additional components that parents would like added to the RAP-P-ASD program. When reflecting on changes they had noticed in their young adolescents with autism as a result of their participation in the program, parents most frequently identified improvements in their adolescents’ emotion regulation, communication, and connectedness with family members. Regarding aspects of participation that parents experienced as challenging, two parents (13%) raised the preventative rather than treatment focus of RAP-P-ASD, and five parents (38%) said that childcare difficulties and being time-poor and over-committed got in their way of attending all four workshops. Concerning additional components for future versions of RAP-P-ASD, two parents (13%) requested ongoing support in the form of follow-up workshops that revised and reinforced program content, and child care for parents attending the face-to-face workshops

Discussion

Analysis using a CQR approach of the qualitative data gathered in one-on-one interviews with parents supports the expected impact of improved parent self-efficacy, affect regulation and mental wellbeing (Merry et al., 2004; Pineda & Dadds, 2013; Shochet et al., 2001; Shochet & Ham, 2004), and aligns with the important parent-child factors that have been found to buffer adolescents from depression. Highlights for parents of participating in RAP-P-ASD were that it diminished their sense of isolation and validated their parenting difficulties; boosted their self-efficacy by affirming their existing strengths, and increasing their confidence for adopting a non-reactive and calm parenting style; augmented their affect regulation by improving their stress management; increased their empathy for their young adolescent and enhanced parent-adolescent communication and connectedness; increased their understanding of a more optimal manner in which to assist their child with autism to navigate the developmental phase of early adolescence; and boosted their own wellbeing because they were able to manage the conflict in the family system in a more proactive and constructive manner.

Concerning the protective factors of parent self-efficacy and parent affect regulation, a primary motivation of parents for participating in RAP-P-ASD was to obtain much-needed emotional support because they (80%) were experiencing parenting a young adolescent with autism as isolating (e.g., “having a kid on the spectrum can be a lonely place to be a lot of the time”), challenging (e.g., “we find it hard to feel that we’re doing anything well”), and overwhelming (e.g., “negotiating with him is impossible because he doesn’t care about anything”). The experience of the parents in our study is congruent with reported experience in other studies of parents of children with autism where themes that emerged included parents feeling overwhelmed or stressed and in need of emotional support (Derguy et al., 2015; Divan et al., 2012; Gray, 2001; Kogan et al., 2008; Pottie & Ingram, 2008; Siklos & Kerns, 2006; Zablotsky et al., 2013), isolated (Derguy et al., 2015; Divan et al., 2012), and/or seeking parenting skills and knowledge about parenting a child with autism (Derguy et al., 2015; Divan et al., 2012), and highlights the importance of supporting parents’ self-efficacy, affect regulation, and mental wellbeing. Another motivation for participating in RAP-P-ASD that was endorsed by parents (60%) was to acquire knowledge and parenting skills that would enhance their parenting of their young adolescents with autism (e.g., “to help educate and support me … to then help support [my son]”). In keeping with the non-blaming, supportive and validating focus of RAP-P-ASD that strives to augment parents’ existing strengths and boost their self-efficacy, the majority of parents (73%) valued the supportive and validating manner in which the program conveyed an

20

understanding of their difficulties and reinforced that they were already doing a good job (e.g., “that feedback of being a good parent, and that I’m doing the right thing by my kids - no one ever tells me that so that was worth gold to me”). Parents (87%) concluded that attendance had been useful in that they had acquired information, practical tools and strategies that made them feel more equipped to parent their young adolescents with autism (e.g., “gave us techniques of things that we could try that we hadn’t thought of, or other ways around some of the issues that may crop up”). All parents (100%) reflected that participation was a positive, helpful and enjoyable experience (e.g., “the program was really, really good, I actually got huge amounts out of it”), that they (67%) were finding parenting easier (e.g., “finding simple ways of dealing with things… it’s definitely helped my parenting out a little bit”) and attributed these changes to adjustments they had made to their parenting style (33%) (e.g., “super calm parenting! I try to remind … to remind myself when I feel myself getting angry to just take it down…you can’t parent properly unless calm”), and managing their stress in a more proactive and constructive manner (47%) (e.g., “taking some time out for me so that I can cope with stress better”). The majority of parents (87%) appreciated the sense of connectedness with other parents of young adolescents with autism that the program fostered (e.g., “it allowed us to share experiences that made us feel less isolated”), and said that they would recommend the program to other parents (80%) (e.g., “I would highly recommend they do it… it is such a positive thing and you learn so much about yourself and the way you parent. It far exceeded my expectations”). Anecdotal information gathered from the parents who participated in this study reinforced that, in-line with previous research (e.g., Weis et al., 2012, 2016), these parents faced additional difficulties which may have diminished their affect regulation and their perceived self-efficacy as parents. Difficulties that parents reported included parenting more than one child with autism, financial difficulties, and social problems such a marital distress. Congruent with research suggesting that parents of children with autism may themselves have the BAP or sub-threshold characteristics of autism (Losh et al., 2008), some parents disclosed that they (or their partner) had their own diagnosis of autism or thought that they (or their partner) had a number of traits similar to the core features of autism. Parents with autism or traits of autism provided examples of times when they had struggled to support their young adolescent with autism to overcome difficulties that they themselves had encountered, including forming and sustaining friendships, regulating their emotions, and coping with change. The reduction in parenting isolation and anxiety about parenting self-efficacy as a result of participating in RAP-P-ASD was particularly valued by parents, and they took proactive steps to remain in contact with other RAP-P-ASD participants and voiced a desire for ongoing support. This suggests the need for a greater emphasis on providing ongoing emotional and practical support for parents of adolescents with autism, and it is acknowledged that a group program such as RAP-P-ASD can only address a small part of that ongoing need.

Regarding the protective factor of parental expressions of caring and warmth, a significant majority (53%) commented that their insight about their young adolescent and their parenting had increased (e.g., “I probably have a greater appreciation for him…trying to find his place in this world and fit in, like any teenager, is difficult”). Some parents (33%) remarked on favourable outcomes that resulted from them highlighting their young adolescents’ strengths (e.g., “our children are absolutely amazing and they can do really funny things that make you laugh - it was also good to look at our positive feeling about our kids”), while others (20%) noticed significant gains from praising desirable behaviour (e.g., “I came home and everything was done and they were calm and I made a huge fuss of them… he kind of looked puffed up with pride - lifting his shoulders a little bit, holding his head up high, he smiled. When I praised him, he was very happy and grateful”). There is extensive research to support the value of parental expressions of positive regard towards their adolescent (Yap et al., 2014), and expressions of parental warmth and close parent-child relationships have been

21

associated with improved outcomes for adolescents with autism (Woodman et al., 2015). These findings are therefore encouraging, although the long term sustainability outside of the immediate program effects are still to be determined. It may well be that parents under stress may not maintain the awareness of expressing a positive regard.

With respect to the protective factor and RAP-P-ASD aim of reduced parent-adolescent conflict, parents (33%) commented that their communication with their young adolescents with autism had improved (e.g., “learning [that] his view and perspective is completely different to ours”). They added that they (33%) had become more proactive about de-escalating potentially volatile situations (e.g., “if I notice that she’s getting really anxious and stressed, I just go, ‘you need to go and take some breathing, calm yourself down and then we’ll talk about stuff’”). A significant majority (53%) remarked that conflict in the family system had diminished (e.g., “being able to just talk some things through without having like a big argument”). Given the increased risk of conflict between parents and their adolescents with autism (Orsmond et al., 2006), these parent reports of de-escalation of conflict are encouraging. However, it is important to note that this was not the most highly endorsed benefit, with more research required to ascertain whether this finding reflects that a number of families did not experience conflict management as needed, or whether conflict management was unsuccessful. Relating to an aim of RAP-P-ASD to strengthen the adolescent-parent relationship bond, parents (53%) noticed that after participating in RAP-P-ASD they experienced a greater sense of connectedness with their adolescent through jointly implementing strategies learned in the program and feeling a closer mutual bond (e.g., “it’s given us a bit more of a bond … [our relationship] definitely has been improving”). They also remarked that they had been experiencing their adolescent as more affectionate towards them (e.g., “he told me he loves me”). These findings are consistent with those of Smith et al. (2008) who demonstrated in a large longitudinal study the importance of a positive family environment for improved developmental and behavioural functioning of adolescents with autism.

Although the protective factor of fostering parents’ ability to support their adolescents to develop increasing autonomy while maintaining close parental relationships was a component of the program, parents did not rate this component as frequently as might have been expected. Two parents (13%) reported an increased understanding of the importance of independence while maintaining the parent-adolescent relationship (e.g., “I think understanding his independence, but also dependence…I hadn’t really thought about that too much…kids wanting more independence, but still wanting to be a part of the family”), and two parents (13%) reported planning to assist their young adolescent to develop greater independence (e.g., “they’ve actually invited him to go away for a night with them …and rather than put him in that position where he has to show his friends that he just can’t cope [with being away overnight], we just … can pick him up”).

Strengths and Limitations

This qualitative study yielded valuable information about the experiences of parents who participated in the first manualised mental health promotion initiative developed for young adolescents with autism and their parents. Parents’ feedback about their experience of participating in RAP-P-ASD provided useful insights that mirrored findings from prior research and reinforced the need for interventions that provide support for parents of young adolescents with autism. The intervention appears to have ecological validity, is unique in that it adopts a focus that builds on participants’ existing strengths, and consistent with feedback from the multitude of parents who have participated in RAP over the past two decades (e.g., Merry et al., 2004; Pineda & Dadds, 2013; Shochet et al., 2001; Shochet & Ham, 2004), parents who participated in RAP-P-ASD experienced

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the program as improving their self-efficacy and mental wellbeing, and strengthening the parent-adolescent relationship. Importantly, findings highlighted a need for ongoing support for parents of young adolescents with autism that is currently unmet by existing services.

As this was a small scale, exploratory qualitative study, findings should be considered as an insight into the experiences of a sample of parents of young adolescents with autism in urban Australia. Generalisability to young adolescents with autism and their parents overall is reduced by the study’s modest sample size (N = 15), its relative homogeneity, and twice as many female than male parents participating which may have been influenced by scheduling of RAP-P-ASD workshops and parents’ difficulties arranging child care. Also, it must be acknowledged that individual biases of the CQR team members may have influenced the outcome of the domains, core ideas, and common themes extracted in the CQR analysis. Furthermore, the final domains, core ideas and common themes were not checked by the parent participants so it is not known whether they agreed with the analysis. Importantly, the long term sustainability of gains outside of the immediate program effects are still to be determined. While parents of young adolescents with autism are desperate for support that is unmet by existing services, and valued participating in RAP-P-ASD and reported realising positive outcomes, the heightened and enduring challenges that many parents of adolescents with autism experience may diminish treatment gains over time, as suggested by parents’ requests for additional and ongoing emotional and practical support.

Future Research

The experience of parents who participated in this multilayered intervention reinforces previous research that reported that parents of young adolescents with autism are desperate for parenting resources and support (Hartley & Schultz, 2015; Siklos & Kerns, 2006). The encouraging qualitative findings from this proof-of-concept trial endorse that parents valued engaging in a parenting intervention added to an evidence-based, strength-focused resilience intervention designed to promote wellbeing and mental health in young adolescents with autism, and justify a RCT with a larger sample of parents and adolescents to examine the effectiveness of the multilayered RAP intervention in which parents and their young adolescents with autism receive RAP-P-ASD and RAP-A-ASD. The resounding endorsement from parents of their sense of connectedness with other parents afforded by attending the RAP-P-ASD workshops (87%) suggests that the face-to-face model offers the optimal delivery option, hence future research should continue to offer the workshops and trial the addition of reinforcing adjunct material to sustain parents’ sense of connectedness after the conclusion of the workshops.

To cater for parents who are unable to attend the face-to-face RAP-P-ASD workshops (because of constraints such as living remotely, being time-poor, or having scheduling difficulties) or who require ongoing revision and reinforcement support in addition to the four RAP-P-ASD workshops, there is value in exploring the development of a hybrid model of RAP-P-ASD that uses communication technology to deliver the program content online, augments it with digital resources and telephone and/or online chat support, and could be accessed worldwide by English-speaking parents of young adolescents with autism. Such a hybrid would extend the reach of RAP-P-ASD to a wider, more ethnically, culturally and racially diverse population, including those living in rural and remote communities, and internationally, and might also help to lessen the sense of isolation experienced by many parents of young adolescents with autism. The authors of the manuscript are currently building a website to engage parents and caregivers on the core components of the RAP-P-ASD program. While a digital program cannot replicate face-to-face experience, there is sound evidence in e-health research that shows the effectiveness of psychosocial interventions delivered through

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technology (see Andersson, Cuijpers, Carlbring, Riper, & Hedman, 2014 for review).

Conclusions

The current study explored the value of adding a strength-focused parenting intervention to an evidence-based depression-prevention intervention for young adolescents with autism, within a broader project to promote wellbeing and mental health in young adolescents with autism (the Adolescent Wellbeing Project). Qualitative findings offer a valuable insight into the experience of parenting a young adolescent with autism, and reinforce that, congruent with the literature, parents who participated in the Resourceful Adolescent Program for Parents adapted for parents of young adolescents with autism (RAP-P-ASD) were seeking emotional and knowledge-based parenting support that is currently unmet by existing parenting services. As a first trial, RAP-P-ASD has good promise as evidenced by parent reports that participation diminished their sense of isolation, validated their parenting difficulties, boosted their self-efficacy, increased their empathy for their young adolescent and enhanced parent-adolescent communication and connectedness, increased their understanding of a more optimal manner in which to assist their child with autism to navigate the developmental phase of early adolescence, and boosted their own wellbeing.

To capitalise on the vital protective factors that parents provide for their young adolescents with autism, there is a need for multilayered interventions that harness parents’ strengths and diminish the risk factors associated with the challenges of parenting while promoting parent and adolescent wellbeing and mental health. The findings of this qualitative study provide support for the next step in this initiative: adding adjunct material to the face-to-face RAP-P-ASD model to increase the potential for ongoing reinforcement of content delivered in the RAP-P-ASD workshops, extending the reach of the program by developing a hybrid model of RAP-P-ASD that uses communication technology to deliver program content online and augments it with digital resources and telephone and/or online chat support, and conducting a RCT to examine the effectiveness of the program. 

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Ethical Approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institution and national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed Consent

Informed consent was obtained from all participants included in the study.

 

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