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Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches
Journal of Adolescence 77 (2019) 139–146
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Journal of Adolescence journal homepage: www.elsevier.com/locate/adolescence
Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches
T
Celeste Duffa,∗, Gillian Kinga,b,c, Amy C. McPhersona,c,d, Shauna Kingsnortha,b,c, Alanna E.F. Rudzike a
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada c Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada d Dalla Lana School of Public Health, University of Toronto, Toronto, Canada e SUNY Oneonta, Oneonta, NY, United States b
A R T IC LE I N F O
ABS TRA CT
Keywords: Parenting Family functioning Adolescence Developmental transition Disability Life skills
Introduction: Residential immersive life skills (RILS) programs are designed for youth with disabilities and facilitate the development of adaptive behaviors for life skills required to navigate adulthood. This study explored parents’ experiences of the RILS program journey, shifts in parenting approaches, and the implications of those shifts. Methods: This study draws on twenty-three qualitative interviews that were conducted with nine parents of youth who attended RILS programs in Ontario, Canada. Three rounds of interviews were conducted at three different time points: Pre-program, 3 months post-program, and 12 months post-program. Data were analyzed using a constructivist grounded theory approach. Results: The interviews captured parents’ experiences of the RILS program journey and how their parenting changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for experiencing positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. Conclusion: Parenting approaches can shift as a result of youth attending RILS programs. These shifts can create complex and challenging implications for parents as they seek to further encourage youths' development. This study offers an understanding of the implications of parenting during youths’ developmental transition of adolescence to adulthood, and offers recommendations to further support parents in sustaining youth development of life skills during this developmental transition.
1. Introduction Adolescence is a critical time of development for youth and can create multiple challenges not only for youth, but also for their parents. The developmental transition from adolescence to adulthood typically brings a host of changes in family and peer relationships, employment, and education (Mattson & Kuo, 2019; Whiteman, McHale, & Crouter, 2011). Although changes are
∗
Corresponding author. E-mail address: celesteduff@gmail.com (C. Duff).
https://doi.org/10.1016/j.adolescence.2019.10.015 Received 24 May 2019; Received in revised form 29 October 2019; Accepted 31 October 2019 0140-1971/ © 2019 Published by Elsevier Ltd on behalf of The Foundation for Professionals in Services for Adolescents.
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necessary as the roles and responsibilities for parents and youth shift, this transition can be especially challenging for parents who have youth with disabilities (Young et al., 2018; Hanley-Maxwell, Whitney-Thomas, & Pogoloff, 1995). Parents of youth with high health and medical needs face challenges not usually faced by other parents (Hatzman et al., 2014; Uding, Kieckhefer, & Trahms, 2009). Parents must often assume the roles of medical expert and care coordinator, in addition to typical parenting roles (Young et al., 2018; Uding et al., 2009). Parents can, therefore, be the most important and enduring resource in a youth's life (Devlieger, Galarza, Brown, & Strickfaden, 2018; Schor, 2003). During the transition from adolescence to adulthood, parents of youth with disabilities may feel overwhelmed by having to explore additional health and related services for their youth such as independent living, transportation, further education and employment (Waters & Friesen, 2019). Youth and their parents may; therefore, experience a range of psychosocial challenges and changes (Mattson & Kuo, 2019). As parents attempt to balance protection and promotion of autonomy for youth, tensions can arise that impact family functioning [outcomes that positively or negatively affect the interaction and development of family members (Radina, 2013)], and family cohesion [the emotional bonding which family members have toward one another (Beijersbergen, Juffer, Bakermans-Kranenburg, & Van IJzendoorn, 2012; Olson, Sprenkle, & Russell, 1979)]. During this developmental period, family relations are renegotiated toward youth greater autonomy; youth may still, however, rely on family support as a resource to adjust to changes in their lives (Aseltine & Gore, 1993; Devlieger et al., 2018; Kingsnorth, Rudzik, King, & McPherson, 2019). A key learning that can guide and ease this developmental transition for parents and youth is the acquisition of life skills by youth. Life skills are defined as adaptive, positive behaviors that enable an individual to meet the challenges and demands of everyday life effectively (WHO, 2003). Life skills are essential for all youth both with and without disabilities to navigate the transition to adulthood. Life skills programs provide critical skill development for youth with disabilities. These programs include a standardized curriculum that encompasses group learning, one-to-one support, role-playing, informal and formal peer mentorship, and experiential learning opportunities (Kingsnorth, Healy, & Macarthur, 2007). Life skills programs thus enable youth with disabilities to develop “skills needed for surviving, living with others, succeeding in a complex society” (Hamburg, 1990, p. 3). Some life skills programs augment opportunities for experiential and immersive learning by offering a residential overnight component. Residential Immersive Life Skills programs (RILS) are the focus of the current study; they have been described positively as the ‘Cadillac’ version of these youth developmental programs. RILS programs are unique programs for youth with disabilities, which offer youth the opportunity to participate in independent living tasks such as cooking, laundry, budgeting, directing personal care and navigating transportation. RILS programs offer situated, experiential, psychoeducational, and strengths-based learning opportunities in real-life contexts (Duff, McPherson, King, & Kingsnorth, 2019). Youth learning is facilitated through trial and error, to teach the consequences of decision-making in safe, supportive and engaging environments (King et al., 2016). RILS programs thus provide repeated opportunities for youth to develop strategies to navigate new and challenging psychosocial and emotional experiences (Duff, McPherson, & King, 2019). Fundamental to the delivery of the programs are multi-disciplinary teams of service providers, which include occupational therapists, nurses, physical therapists, social workers, life skills coaches, youth mentors and personal support workers. Living away from the family home, without daily support from and contact with their parents is typically a new and intense experience, for both youth and their parents. RILS programs can thus encourage youth developmental outcomes including selfefficacy and self-determination (McPherson et al., 2018). When youth return home following RILS programs, this is also typically an intense experience for both youth and parents. Youth often return with a host of new critical skills. They may have also experienced changes in their sense of identity and autonomy (McPherson et al., 2018). Challenges and positive disruptive experiences within family functioning and family cohesion may, therefore, be heightened as parents and youth readjust and renegotiate family relations, roles and responsibilities; this may prove to be a complex experience for youth and their parents (Young et al., 2018; Beijersbergen et al., 2012). We posit that, following RILS programs, parents undergo shifts in response to youths' development and subsequently seek to adjust their parenting roles, responsibilities and perspectives in order to encourage further youth development. However, parents may differ in the ease with which they adjust to and promote youth development. Studies of RILS programs have yet to explore the experiences of parents of youth who attended RILS programs, using a developmental psychological lens. This article is, therefore, concerned with parents’ experiences of the RILS program journey and how their parenting roles, responsibilities, and perspectives may have shifted as a result.
2. Methods As part of a larger study (McPherson et al., 2016), this qualitative secondary analysis focused on interviews that were conducted with parents. The aim of the present study was to capture parents' experiences of the RILS journey and explore whether and how their parenting shifted as a result of youth attending RILS programs. For the purpose of this paper, parenting is operationally defined as promoting and supporting the physical, social, emotional and intellectual development of a child from infancy to adulthood (Brooks, 2012). Encompassed within the intricacies of parenting are the roles, responsibilities and perspectives assumed by parents (Kratz, Uding, Trahms, Villareale, & Kieckhefer, 2009). Thus, ‘shifts in parenting approaches’ refers to changes in parents' perspectives, views of their roles, and views of their responsibilities.
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2.1. Residential Immersive Life Skills (RILS) programs This study involved three RILS programs in Ontario, Canada: the Independent Living Program, The Independence Program and Moving On. These programs are delivered annually, during the summer, in urban university or college residences, for periods of between one and three weeks (McPherson et al., 2016). Generally, the eligibility criteria for youth to attend RILS programs consists of: youth between ages 17 to 21, have a child-onset disability, possess the cognitive capacity to set goals and communicate personal care, have no behavioral concerns that may hinder their participation in the program, and have the motivation and interest to improve their life skills. 2.2. Sample and recruitment Participants were recruited from the three RILS programs each year for three successive years. The parents of youth attending the programs were invited to participate in semi-structured interviews. The interviews were conducted at three time points: pre-program, 3 months post-program, and 12 months post-program. If both parents wished to participate, they were offered the option to be interviewed separately or together. To be eligible to participate in the study, individuals had to identify as the parent or guardian of a youth who was attending a RILS program, and had to be able to speak and understand English. Research Ethics boards at two large children's teaching hospitals approved the study. Moreover, each parent in this study provided written informed consent prior to participating. The demographics of the parents included four mothers, three fathers and one mother-father dyad, thus, a total of nine participants. The demographics of this final sample of youth, whose parents participated in this study, included 8 males, with a mean age of 18. This sample included youth with both generative and non-degenerative physical disabilities and/or medical diagnoses such as Autism Spectrum Disorder, Cerebral Palsy, and Duchenne Muscular Dystrophy among others. There were, however, also youth in this sample who had more than one disability/diagnosis. The demographics of the parents and youth are shown in Table 1. 2.3. Interviews The semi-structured interviews followed a guide that was previously used during a RILS program pilot study (King et al., 2016). The interviews were conducted at three different time points: pre-program, 3 months post-program, and 12 months post-program. Parents of eight youth participated, which resulted in 23 interviews in total; one interviewee did not participate in the 3 months postprogram interview. Two research coordinators with extensive qualitative research training conducted the 30–60 min interviews. Seventeen interviews were conducted over the phone, three interviews were conducted at a participant's home, and three interviews were conducted at one of the treatment centers. Each interview was digitally audio-recorded and professionally transcribed verbatim. For this current qualitative secondary analysis, the aims were to capture parents' experiences of the RILS program journey and how their parenting may have shifted as a result. The analysis of the pre-program interviews explored parents' aspirations and motivations for youth attendance. The interviews at 3 months post-program sought to capture parents’ initial experiences following the program and any immediate adjustments or challenges to their parenting roles. Finally, the interviews at 12 months post-program were concerned with capturing established shifts or persisting challenges to parenting approaches. 2.4. Analysis We adopted a constructivist grounded theory approach in order to capture an in-depth understanding of parents’ perceptions and experiences (Creswell, 2003). This approach facilitated a rigorous engagement with the transcripts and thus captured the complexity, richness and meanings concerned with the perceptions and experiences of the participants (Charmaz, 2006). Table 1 Demographics of participants. Number of Parents
Parent Sex
Number of Youth
Youth Mean Age and Range
Youth Sex
Youth Diagnoses/Disabilitiesa
9
4 female 3 male 1 dyad
8
18 (17–21)
8 male
Autism Spectrum Disorder Cerebral Palsy Chronic idiopathic degenerative polyneuropathy Communications Disorder Duchenne Muscular Dystrophy Femoral facial deficiency syndrome Friedrich's Ataxia Hypertrophic Cardiomyopathy Other (eg., acquired brain injury, genetic diseases, learning disability) Scoliosis
a
A youth could indicate more than 1 diagnosis/disability. 141
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One team member (CD) read through each transcript, while simultaneously engaged in the coding process and holding analysis meetings with two additional team members (ACM and GK). The analysis meetings involved discussions of the emerging themes and patterns in the data. The analysis meetings therefore reinforced the inductive approach of analysis and subsequently guided and solidified the analysis process. The coding process evolved into a four-stage process: (a) Initial inductive coding; (b) Focused inductive coding; (c) Memo-writing; and (d) Master themes. The initial inductive coding involved an open-ended exploration of potential themes, patterns and the generation of additional codes. The initial coding was not based on existing theory; it was based on the meaning that emerged from the data (Charmaz, 2006). The focused coding, however, concentrated on drawing out parenting approaches that might hinder the development of life skills for youth. The initial and focused coding used strategic letter and number associations to ensure an effective iterative and systematic coding process. The third stage, memo-writing, involved the accumulation and further identification of the conceptual themes. The themes were then compared and contrasted, and developed into master themes. Finally, with two further team members (AR and SK), a review of the proposed themes was conducted to ensure that the master themes were distinct. Iteration was pertinent to the analysis process; the reciprocal, comparative, and systematic process of iteration guided the emerging insights, which refined the focus (Srivastava & Hopwood, 2009). 3. Results The interviews captured parents’ experiences of the RILS program journey and how their parenting may have changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. 3.1. Anticipation of RILS programs served as a catalyst for positive and negative tensions in parenting RILS programs were perceived as a motivating facilitator for a shift in parenting. Prior to youth attending RILS programs, some parents anticipated that the RILS program might encourage positive changes in the roles and responsibilities of both youth and parent. It seems that the anticipation of developments in a youth's autonomy and agency, as a result of attending a RILS program, could have the potential to spark timely changes in parenting even prior to program attendance. The RILS program is a starting point for us to back off with our hand holding a little bit and get him doing a little bit more than he can and should be doing on his own. I think we kind of overprotect and over parent. We want to back off and just let him find his own level. (Joyce, Interview 1) It was apparent that, for some parents, the prospect of youth attending RILS programs generated feelings of anxiety. The anticipation of change to their current ways of parenting, in addition to youth embarking on a powerful learning curve, was daunting for some parents. There were parents who expressed concern for their youth's safety: RILS is a very scary thing for this whole family. It's the first time my son has been away from me, and my son is not street smart. So there is a bit of worry there for Dad and Mom. (Harper, Interview 1) In addition, some parents expressed concerns surrounding their current parenting approaches. It seems the anticipation of the RILS program prompted some insecurities as to how much parents support their youth at home. I worry that he may not be capitalizing and experiencing life to the fullest. I think he may be limiting himself because he's used to us doing everything for him. (Bailey, Interview 1) 3.2. Parenting shifted following RILS programs 3.2.1. RILS program attendance was a catalyst for reflection on parenting and realizations of youths’ capabilities Following their youth's attendance at a RILS program, some parents experienced changes in their parenting perspectives. It was evident that RILS programs were a catalyst for introspection, self-reflection and evaluation of current parenting. This reflective process seemed to encourage parents' realizations of youths' capabilities, and subsequently led them to adjust their parenting, which better served both parents and youth. We were already beginning to realize that we were doing too much for him. RILS was like a wakeup call, a springboard to encourage us as parents to help him become independent. I was quite a profound enabler; I was almost seeing him as incapable. I'm trying to pull back on that. [RILS program] has encouraged us to be more aware of knowing when we are doing too much for [NAME]. (Teagan, Interview 2) More specifically, this reflective experience following RILS programs sometimes increased parental trust in, and understanding of, their youth. As much as the youth learned new skills and ways of doing things, it seems parents also indirectly experienced some positive learning. I've learned a lot about myself. I can step back and I can allow him to be independent; that is ultimately what I wanted for him. I trust that he can be independent, and I trust myself to leave it to him to get it done. (Taylor, Interview 3) 142
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We didn't give him enough credit; we've come to realize that he's really quite capable. We see him now as a capable person. We have far more trust in him and we definitely have a better understanding of him. (Teagan, Interview 3). It appears that, for a number of parents, RILS programs were facilitators in initiating shifts in parental roles, responsibilities, and perspectives. Subsequently, these shifts seemed to be accelerators for improving parents’ quality of life including decreased parental anxiety and stress levels. The degree of independence that [NAME] now has improved our quality of life as parents. Our lives no longer rotate around his as much as it did before. [RILS Program] showed him that he could! RILS breaks the apron strings. I think you have to allow them to stumble. (Bailey, Interview 3) I was always worried, anxious, and always doing too much for him. I used to be far more protective and sensitive to everything happening around him; this is now changing. Our family doesn't seem as dysfunctional. I'm less stressed, and I'm exercising more, so I feel healthier. (Teagan, Interview 3) 3.2.2. Parents offered youth greater responsibility Following RILS programs, some parents reported increases in youths' level of responsibility and described ways they adjusted their own behavior to facilitate and accommodate youths’ development. Some parents explained that they adopted self-regulation techniques in order to refrain from communicating on behalf of youth in public, and pestered youth less often to carry out tasks. Other parents offered youth greater responsibility to carry out daily tasks and checked in with youth regularly. After [RILS program] it was hard for me. I had to step back and allow [NAME] to advocate for himself. I really had to bite my tongue, so I didn't speak for him. It's been a learning curve for both of us. I don't nag him or follow up on tasks anymore. He takes the initiative on his own. (Taylor, Interview 3) We're more likely to say have you done this? In the past we would have just done it ourselves for him. (Bailey, Interview 3) 3.2.3. Parenting shifts were challenging Following RILS programs, although parents were motivated to make changes to their parenting in order to encourage the further development of life skills for youth, implementing changes on a daily basis was challenging for some parents. There was a sense that some parents felt conflicted about encouraging youth to develop their adult identities and navigate new responsibilities of adulthood. [RILS] has reinforced that I need to be patient. 18 years in this routine of we do everything for him, I wouldn't say harder to let go, but he is able to do things on his own so we need to let go. (Joyce, Interview 3) Since [RILS] we are aware we need to make changes in how we parent him but to go from 100 percent nurturing and doing everything, to walking away and doing nothing, this is the wrong solution also. (Bailey, Interview 3) 3.3. Where parenting shifts were limited, challenges for youth arose and reduced youth future growth Some parents spoke of limited shifts in their family routines, behaviors and dynamics. When parents reported limited changes at home, it seems this posed a challenge for youth to continue their development of life skills, and to forge their identity and navigate adult roles. We don't give him the freedom that we think we give him. I can see from the times when we let go that we do micromanage a lot of what he does. He doesn't show the initiative at home; he's never been a big risk taker, but part of it's our fault too. I think we still underestimate that he has abilities to be on his own. We know he's capable but sometimes it's just easier to do it ourselves. (Sasha, Interview 2) When he came back home again, it went back into a similar routine. When he was at [RILS program] he was successful in preparing a meal, he's yet to prepare a meal at home though. He does have a lot done for him at home. (Joyce, Interview 3) Although parents realized youths’ capabilities, there was also a sense that some parents were unclear how they should encourage and implement changes. These parents highly valued RILS programs, but perceived that it was difficult to provide life skills learning opportunities for youth at home. It's hard for a parent to teach the life skills that are taught at [RILS programs]; I think it's almost impossible for a parent to teach those skills. We're just too vested in the care that we give them, the ongoing care that we give them. We don't always see what they can do. (Bailey, Interview 3) Parents shared their perspectives on potential areas of development for RILS programs. Once youth returned home from RILS programs, parents recognized that their parenting could support or disrupt what youth had learned during RILS programs. Some parents felt that greater parental engagement with the program and with other parents could improve their experience. It seems, for some parents, opportunities to connect and learn from other parents would be valuable to help prepare them in shifting their approaches. The parents were really hands off. I would like it if they actually had a parent piece. It would be nice if they did a formal piece to the 143
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program, where parents get an opportunity to share too. (Teagan, Interview 2)
4. Discussion Parents’ perceptions and parenting shifts as a result of RILS programs were multifaceted. There were parents who anticipated that the RILS program would be a timely motivator to initiate changes in their parenting. Parents acknowledged that they might, understandably, overprotect their youth at times, and would therefore like to make changes to increase autonomy and agency for their youth. Although RILS programs were anticipated as a timely motivator to adjust overprotective-like parenting behaviors, those behaviors likely had served an important function in protecting the health and wellness of the youth in the past, particularly for youth with high health and medical needs (Young et al., 2018; Hatzman et al., 2014). Prior to youth attending RILS programs, some parents reported feeling anxious and insecure about their youth's ability to engage in such an environment. For many parents, this was the first time that their youth would be intentionally, by choice, out of the family home without a family member for an extended period of time. Furthermore, parents also expressed feeling anxious and insecure about potential changes to their current parenting that the RILS program may bring about. Some parents anticipated that they would experience difficulties if they had to change their parenting approach to allow their youth greater exposure to adult roles and responsibilities. Parents of youth with disabilities can experience considerable anxiety when allowing their youth to develop and experience autonomy and agency (Howe, 2006; Mattson & Kuo, 2019). For example, when youth are exposed to greater levels of autonomy, it may trigger parents' anxiety and concerns for their youth's safety. As a result, parents may unintentionally curb opportunities for youth to participate in growth-promoting activities (Seligman & Darling, 2017). Following RILS programs, some parents spoke of their difficulties in decreasing micromanagement behaviors and increasing opportunities for safe risk-taking for youth. Specifically, attempts to increase patience, and provide youth with more responsibility, seemed to generate feelings of insecurity and anxiety for parents. The priority of their youth's high health and medical needs made it challenging to adjust their parenting to encourage greater opportunities for youth to develop their life skills. Changes in the interaction and development of family members (family functioning), in addition to changes in the emotional bonding among family members (family cohesion), can prove to be complex and challenging for families with a disabled youth (Kingsnorth et al., 2019; Olson et al., 1979; Waters & Friesen, 2019). In particular, the multiple healthcare and community services a young person may require can also add to the impact on family functioning and cohesion (Olson et al., 1979; Waters & Friesen, 2019). We posit that when parents adjusted their parenting, it did in fact create opportunities for youth to develop their life skills further. The adjustment, however, also brought about feelings of anxiety for parents. These unsettled feelings seemed to influence parents to revert back to previous parenting roles and responsibilities. Parents wrestled with tensions in adjusting the parenting roles they had practiced for the majority of the youth's upbringing and those parenting roles that they felt they ‘should’ be practicing now that their youth was entering adulthood. A series of unfolding transactions for both youth and parents occurred; youth embarked on roles of greater responsibility and autonomy, while tensions and conflicting feelings towards parenting heightened challenges for parents. Typically, during this developmental transition, repeated negotiations and adjustment of the balance between youth autonomy and parenting roles and family relations are to be expected (Aseltine & Gore, 1993; Devlieger et al., 2018; Kingsnorth et al., 2019). Although this tension may exist for any parent, there is much less clarity or guidance about how to best negotiate it for parents of youth with disabilities (Hatzmann et al., 2014; Young et al., 2018). RILS programs often focus on youth readiness as a requirement for participation. The current findings suggest that parental readiness may be an equally important concept to consider for program outcomes. As an example, there were parents who, in the interests of time and competing priorities, felt unable to adjust their parenting approach in order to give youth more responsibility in daily tasks and routines. These parents and youth therefore continued with previous roles and routines resulting in limited opportunities for youth to continue the development of life skills at home. There were also parents who expressed uncertainty as to how to encourage and negotiate changes in parent and youth roles and responsibilities, such as decreasing parental monitoring and parental involvement, in order to increase youths’ life skills development. Parents acknowledged that within a parenting role, identifying and providing learning opportunities and experiences for youth to develop life skills can be difficult; for these reasons, parents recognized the value of RILS programs. Conversely, there were parents who expressed reassurance and a greater sense of trust in youth, following RILS programs. The new realizations of youths’ life skills acted as a catalyst for encouraging parents to make adjustments in their parenting and foster independence rather than dependence in their youth. Feelings of fulfillment and experiences of progression are important aspects of parenting often missing in the narrative of transition to adulthood, particularly for families of youth with disabilities (Rapanaro, Bartu, & Lee, 2008). Parents identified providing youth with greater responsibility. They described adjusting to a scaffolding approach that increasingly allowed youth to take an autonomous and responsible role in their daily tasks and routines. It was apparent that some parents adjusted quickly and were very responsive to youths' new life skills competencies, and thus encouraged the youth to further optimize their life skills development. A conceptual framework of transactional process for pediatric rehabilitation (King, Imms, Stewart, Freeman, & Nguyen, 2018) emphasizes how meaningful situated and cumulative experiences can facilitate capacity development. This framework proposes that ongoing transactions of change are an evolving, cascading phenomenon that can be mobilized by interventions, such as RILS programming (King et al., 2018). Furthermore, this framework proposes that ongoing youth-parent transactions mutually influence each other, and thus optimize adjustment to adversity, major life transitions, and new roles (King et al., 2018). Youth-parent transactions can lead to parents influencing their youth's behavior. However, youth are also active agents, 144
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influencing their parents and family context in return (Kingsnorth et al., 2019; Sameroff, 2010). In sum, RILS programs catalyzed shifts in parenting approaches. Parents responded to their youth's development and subsequently sought to adjust their parenting approaches in order to encourage further youth development. For some parents, these shifts were challenging and disruptive. However, for other parents, these shifts contributed to a decrease in parental anxiety and an increase in parental wellbeing. Parents spoke of improvements in their overall quality of life, for example greater involvement in exercise and greater self-care. Such adaptive self-regulatory behaviors have previously been shown to improve parenting, and thus family functioning and family cohesion (Mattson & Kuo, 2019; Olson et al., 1979). 4.1. Clinical implications In order to support the continuous life skills development of youth, greater parental engagement throughout the program was considered potentially beneficial. Currently, RILS programs offer a parent welcome day, before the programs begin. One month after the end of the programs, staff members offer parents a follow-up meeting over the phone. These activities are designed to inform parents about what the RILS program entails and aim to prepare parents for changes in youth. Recommendations for future RILS programs could include an additional follow-up meeting three months after the programs. Furthermore, RILS programs could facilitate opportunities for informal meeting groups led by parents. Social media platforms specifically tailored for the parents of youth who have attended the programs may offer similar benefits (Baum, 2004). Regardless of format, meeting groups led by parents could create opportunities for parents to share their experiences, and to seek and gain advice from each other. Studies have found that parent support groups that are focused on preparing parents of youth with disabilities for their youth's transition to adulthood can act as a powerful resource for parental wellbeing (Jackson, Steward, Roper, & Muruthi, 2018; Kerr & McIntosh, 2000; Kingsnorth, Gall, Beayni, & Rigby, 2011). Some of the greatest benefit in terms of parental wellbeing and quality of life is achieved when parents are able to share their experiences with other parents who are in a similar situation; parents of youth with disabilities are uniquely qualified to help each other (Jackson et al., 2018; Kerr & McIntosh, 2000). 4.2. Limitations It is important to consider parental bias in this study. The parents in this study may represent a group with increased motivation for their youth to succeed in adulthood. Furthermore, parents may have accepted the invitation to participate in interviews as they may have had more of a positive experience of the RILS journey, in comparison to parents who did not choose to participate. Depending on parents’ attitudes and expectations (higher, lower, realistic or unrealistic) of their youth, this may also influence how they depict their experiences of RILS programs and parenting shifts. Considerations of researchers’ assumptions are important, especially in qualitative research (Creswell, 2003). As the team members are proponents of life skills programs for youth with disabilities, we were conscious that our assumptions may have influenced how we interpreted the data. Trustworthiness was therefore reinforced through the analysis meetings as investigator triangulation took place. Triangulation of data source was also reinforced; since three rounds of interviews were conducted at three different time points, the themes and patterns that emerged at the different time points were compared and contrasted (Silverman, 2000). 5. Conclusion This study illustrates that parenting can be positively disrupted as well as challenged when youth attend RILS programs. Such programs offer a springboard for youth to develop life skills during this developmental transition into adulthood. Parents undergo shifts in response to their youth's development, which can be life enhancing as well as complex, challenging, and disruptive to parenting. This study contributes to our understanding of parenting approaches during the developmental transition from adolescence to adulthood in a disability context, the shifts and implications of parenting, and how these all interact together when a catalyst such as RILS programming is introduced. This study also offers recommendations to further support parents in adapting to and sustaining youths' development of life skills during this developmental transition. This knowledge can contribute to future research that examines family context for youth with disabilities and may be useful to inform a broad range of educators including RILS multidisciplinary staff members. Funding This study was supported by an Insight Grant from the Social Sciences and Humanities Research Council of Canada. Dr. Gillian King holds the Canada Research Chair in Optimal Care for Children with Disabilities, funded by the Canadian Institutes of Health Research. This chair is supported by matching funds from the Kimel Family Opportunities Fund through the Holland Bloorview Kids Rehabilitation Hospital Foundation. Declaration of competing interest The authors report no conflicts of interest. 145
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Acknowledgements We acknowledge the support from all the participants who contributed to this research. We wish to thank Holland Bloorview Kids Rehabilitation Hospital, McMaster Children's Hospital, and ErinoakKids for their support of this research. We acknowledge the other members of the Ontario Independence Program Research team. Appreciation is extended to Madhu Pinto and Jesiqua Rapley for their assistance with data collection and manuscript preparation. References Aseltine, R. H., & Gore, S. (1993). Mental health and social adaptation following the transition from high school. Journal of Research on Adolescence, 3, 247–270. https://doi.org/10.1207/s15327795jra0303_3. Baum, L. S. (2004). Internet parent support groups for primary caregivers of a child with special healthcare needs. Pediatric Nursing, 30(5), 381–390. https://doi.org/ 10.1111/j.1744-6155.2009.00223.x. Beijersbergen, M. D., Juffer, F., Bakermans-Kranenburg, M. J., & Van IJzendoorn, M. H. (2012). 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Developmental Neurorehabilitation. https://doi.org/10.1080/17518423.2019.1657198. Duff, C., McPherson, A. C., King, G., & Kingsnorth, S. (2019b). Deconstructing residential immersive life skills programming through a pedagogical lens: Mechanisms that can facilitate learning for youth with disabilities. Journal of Research in Special Educational Needs. https://doi.org/10.1111/1471-3802.12470. Hamburg, B. A. (1990). Life skills training: Preventive interventions for young adolescents. Report of the life skills training workshop groupNew York: Carnegie Corporation of New York. Hanley-Maxwell, C., Whitney-Thomas, J., & Pogoloff, S. M. (1995). The second shock: A qualitative study of parents' perspectives and needs during their child's transition from school to adult life. The Journal of the Association for Persons with Severe Handicaps, 20(1), 3–15. https://doi.org/10.1177/154079699502000102. Hatzmann, J., Peek, N., Heymans, H., Maurice-Stam, H., & Grootenhuis, M. (2014). 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Preparing for adulthood: A systematic review of life skill programs for youth with physical disabilities. Journal of Adolescent Health, 41(4), 323–332. https://doi.org/10.1016/j:jadohealth.2007.06.007. Kingsnorth, S., Rudzik, A., King, G., & McPherson, A. C. (2019). Residential immersive life skills programs for youth with disabilities: A case study of youth developmental trajectories of personal growth and caregiver perspectives. BMC Pediatrics (in press). Kratz, L., Uding, N., Trahms, C. M., Villareale, N., & Kieckhefer, G. M. (2009). Managing childhood chronic illness: Parent perspectives and implications for parentprovider relationships. Families, Systems & Health, 27(4), 303–313. Mattson, G., Kuo, D. Z., Committee on psychosocial aspects of child and family health, & AAP Council on children with disabilities (2019). Psychosocial factors in children and youth with special health care needs and their families. Pediatrics, 143(1), https://doi.org/10.1542/peds.2018-3171. McPherson, A. C., King, G., Rudzik, A., Kingsnorth, S., Gorter, J. W., & Ontario Independence Program Research (OIPR) team (2016). Optimizing life success through residential immersive life skills programs for youth with disabilities: Study protocol of a mixed-methods, prospective, comparative cohort study. BMC Pediatrics, 16(1), 153. https://doi.org/10.1186/s12887-016-0694-7. McPherson, A. C., Rudzik, A., Kingsnorth, S., King, G., Gorter, J. W., & Morrison, A. (2018). “Ready to take on the world”: Experiences and understandings of independence after attending residential immersive life skills programs for youth with physical disabilities. Developmental Neurorehabilitation, 21(2), 73–82. https://doi.org/10.3109/17518423.2016.1141254. Olson, D., Sprenkle, D., & Russell, C. (1979). Circumplex model of marital and family systems I: Cohesion and adaptability dimensions, family types and clinical applications. Family Process, 18, 3–28. https://doi.org/10.1111/j.1545-5300.1979.00003.x. 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(2009). A practical iterative framework for qualitative data analysis. International Journal of Qualitative Methods, 8(1), 76–84. https:// doi.org/10.1177/160940690900800107. Uding, N., Kieckhefer, G. M., & Trahms, C. M. (2009). Parent and community participation in program design. Clinical Nursing Research, 18(1), 68–79. https://doi.org/ 10.1177/1054773808330096. Waters, C. L., & Friesen, A. (2019). Parent experiences of raising a young child with multiple disabilities: The transition to preschool. Research and Practice for Persons with Severe Disabilities, 44(1), 20–36. https://doi.org/10.1177/1540796919826229. Whiteman, S. D., McHale, S. M., & Crouter, A. C. (2011). Family relationships from adolescence to early adulthood: Changes in the family system following firstborns' leaving home. Journal of Research on Adolescence, 21(2), 461–474. https://doi.org/10.1111/j.1532-7795.2010.00683.x. World Health Organization (WHO) (2003). 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Contents lists available at ScienceDirect
Journal of Adolescence journal homepage: www.elsevier.com/locate/adolescence
Residential immersive life skills programs for youth with disabilities: Experiences of parents and shifts in parenting approaches
T
Celeste Duffa,∗, Gillian Kinga,b,c, Amy C. McPhersona,c,d, Shauna Kingsnortha,b,c, Alanna E.F. Rudzike a
Bloorview Research Institute, Holland Bloorview Kids Rehabilitation Hospital, Toronto, Canada Department of Occupational Science and Occupational Therapy, University of Toronto, Toronto, Canada c Rehabilitation Sciences Institute, University of Toronto, Toronto, Canada d Dalla Lana School of Public Health, University of Toronto, Toronto, Canada e SUNY Oneonta, Oneonta, NY, United States b
A R T IC LE I N F O
ABS TRA CT
Keywords: Parenting Family functioning Adolescence Developmental transition Disability Life skills
Introduction: Residential immersive life skills (RILS) programs are designed for youth with disabilities and facilitate the development of adaptive behaviors for life skills required to navigate adulthood. This study explored parents’ experiences of the RILS program journey, shifts in parenting approaches, and the implications of those shifts. Methods: This study draws on twenty-three qualitative interviews that were conducted with nine parents of youth who attended RILS programs in Ontario, Canada. Three rounds of interviews were conducted at three different time points: Pre-program, 3 months post-program, and 12 months post-program. Data were analyzed using a constructivist grounded theory approach. Results: The interviews captured parents’ experiences of the RILS program journey and how their parenting changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for experiencing positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. Conclusion: Parenting approaches can shift as a result of youth attending RILS programs. These shifts can create complex and challenging implications for parents as they seek to further encourage youths' development. This study offers an understanding of the implications of parenting during youths’ developmental transition of adolescence to adulthood, and offers recommendations to further support parents in sustaining youth development of life skills during this developmental transition.
1. Introduction Adolescence is a critical time of development for youth and can create multiple challenges not only for youth, but also for their parents. The developmental transition from adolescence to adulthood typically brings a host of changes in family and peer relationships, employment, and education (Mattson & Kuo, 2019; Whiteman, McHale, & Crouter, 2011). Although changes are
∗
Corresponding author. E-mail address: celesteduff@gmail.com (C. Duff).
https://doi.org/10.1016/j.adolescence.2019.10.015 Received 24 May 2019; Received in revised form 29 October 2019; Accepted 31 October 2019 0140-1971/ © 2019 Published by Elsevier Ltd on behalf of The Foundation for Professionals in Services for Adolescents.
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necessary as the roles and responsibilities for parents and youth shift, this transition can be especially challenging for parents who have youth with disabilities (Young et al., 2018; Hanley-Maxwell, Whitney-Thomas, & Pogoloff, 1995). Parents of youth with high health and medical needs face challenges not usually faced by other parents (Hatzman et al., 2014; Uding, Kieckhefer, & Trahms, 2009). Parents must often assume the roles of medical expert and care coordinator, in addition to typical parenting roles (Young et al., 2018; Uding et al., 2009). Parents can, therefore, be the most important and enduring resource in a youth's life (Devlieger, Galarza, Brown, & Strickfaden, 2018; Schor, 2003). During the transition from adolescence to adulthood, parents of youth with disabilities may feel overwhelmed by having to explore additional health and related services for their youth such as independent living, transportation, further education and employment (Waters & Friesen, 2019). Youth and their parents may; therefore, experience a range of psychosocial challenges and changes (Mattson & Kuo, 2019). As parents attempt to balance protection and promotion of autonomy for youth, tensions can arise that impact family functioning [outcomes that positively or negatively affect the interaction and development of family members (Radina, 2013)], and family cohesion [the emotional bonding which family members have toward one another (Beijersbergen, Juffer, Bakermans-Kranenburg, & Van IJzendoorn, 2012; Olson, Sprenkle, & Russell, 1979)]. During this developmental period, family relations are renegotiated toward youth greater autonomy; youth may still, however, rely on family support as a resource to adjust to changes in their lives (Aseltine & Gore, 1993; Devlieger et al., 2018; Kingsnorth, Rudzik, King, & McPherson, 2019). A key learning that can guide and ease this developmental transition for parents and youth is the acquisition of life skills by youth. Life skills are defined as adaptive, positive behaviors that enable an individual to meet the challenges and demands of everyday life effectively (WHO, 2003). Life skills are essential for all youth both with and without disabilities to navigate the transition to adulthood. Life skills programs provide critical skill development for youth with disabilities. These programs include a standardized curriculum that encompasses group learning, one-to-one support, role-playing, informal and formal peer mentorship, and experiential learning opportunities (Kingsnorth, Healy, & Macarthur, 2007). Life skills programs thus enable youth with disabilities to develop “skills needed for surviving, living with others, succeeding in a complex society” (Hamburg, 1990, p. 3). Some life skills programs augment opportunities for experiential and immersive learning by offering a residential overnight component. Residential Immersive Life Skills programs (RILS) are the focus of the current study; they have been described positively as the ‘Cadillac’ version of these youth developmental programs. RILS programs are unique programs for youth with disabilities, which offer youth the opportunity to participate in independent living tasks such as cooking, laundry, budgeting, directing personal care and navigating transportation. RILS programs offer situated, experiential, psychoeducational, and strengths-based learning opportunities in real-life contexts (Duff, McPherson, King, & Kingsnorth, 2019). Youth learning is facilitated through trial and error, to teach the consequences of decision-making in safe, supportive and engaging environments (King et al., 2016). RILS programs thus provide repeated opportunities for youth to develop strategies to navigate new and challenging psychosocial and emotional experiences (Duff, McPherson, & King, 2019). Fundamental to the delivery of the programs are multi-disciplinary teams of service providers, which include occupational therapists, nurses, physical therapists, social workers, life skills coaches, youth mentors and personal support workers. Living away from the family home, without daily support from and contact with their parents is typically a new and intense experience, for both youth and their parents. RILS programs can thus encourage youth developmental outcomes including selfefficacy and self-determination (McPherson et al., 2018). When youth return home following RILS programs, this is also typically an intense experience for both youth and parents. Youth often return with a host of new critical skills. They may have also experienced changes in their sense of identity and autonomy (McPherson et al., 2018). Challenges and positive disruptive experiences within family functioning and family cohesion may, therefore, be heightened as parents and youth readjust and renegotiate family relations, roles and responsibilities; this may prove to be a complex experience for youth and their parents (Young et al., 2018; Beijersbergen et al., 2012). We posit that, following RILS programs, parents undergo shifts in response to youths' development and subsequently seek to adjust their parenting roles, responsibilities and perspectives in order to encourage further youth development. However, parents may differ in the ease with which they adjust to and promote youth development. Studies of RILS programs have yet to explore the experiences of parents of youth who attended RILS programs, using a developmental psychological lens. This article is, therefore, concerned with parents’ experiences of the RILS program journey and how their parenting roles, responsibilities, and perspectives may have shifted as a result.
2. Methods As part of a larger study (McPherson et al., 2016), this qualitative secondary analysis focused on interviews that were conducted with parents. The aim of the present study was to capture parents' experiences of the RILS journey and explore whether and how their parenting shifted as a result of youth attending RILS programs. For the purpose of this paper, parenting is operationally defined as promoting and supporting the physical, social, emotional and intellectual development of a child from infancy to adulthood (Brooks, 2012). Encompassed within the intricacies of parenting are the roles, responsibilities and perspectives assumed by parents (Kratz, Uding, Trahms, Villareale, & Kieckhefer, 2009). Thus, ‘shifts in parenting approaches’ refers to changes in parents' perspectives, views of their roles, and views of their responsibilities.
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2.1. Residential Immersive Life Skills (RILS) programs This study involved three RILS programs in Ontario, Canada: the Independent Living Program, The Independence Program and Moving On. These programs are delivered annually, during the summer, in urban university or college residences, for periods of between one and three weeks (McPherson et al., 2016). Generally, the eligibility criteria for youth to attend RILS programs consists of: youth between ages 17 to 21, have a child-onset disability, possess the cognitive capacity to set goals and communicate personal care, have no behavioral concerns that may hinder their participation in the program, and have the motivation and interest to improve their life skills. 2.2. Sample and recruitment Participants were recruited from the three RILS programs each year for three successive years. The parents of youth attending the programs were invited to participate in semi-structured interviews. The interviews were conducted at three time points: pre-program, 3 months post-program, and 12 months post-program. If both parents wished to participate, they were offered the option to be interviewed separately or together. To be eligible to participate in the study, individuals had to identify as the parent or guardian of a youth who was attending a RILS program, and had to be able to speak and understand English. Research Ethics boards at two large children's teaching hospitals approved the study. Moreover, each parent in this study provided written informed consent prior to participating. The demographics of the parents included four mothers, three fathers and one mother-father dyad, thus, a total of nine participants. The demographics of this final sample of youth, whose parents participated in this study, included 8 males, with a mean age of 18. This sample included youth with both generative and non-degenerative physical disabilities and/or medical diagnoses such as Autism Spectrum Disorder, Cerebral Palsy, and Duchenne Muscular Dystrophy among others. There were, however, also youth in this sample who had more than one disability/diagnosis. The demographics of the parents and youth are shown in Table 1. 2.3. Interviews The semi-structured interviews followed a guide that was previously used during a RILS program pilot study (King et al., 2016). The interviews were conducted at three different time points: pre-program, 3 months post-program, and 12 months post-program. Parents of eight youth participated, which resulted in 23 interviews in total; one interviewee did not participate in the 3 months postprogram interview. Two research coordinators with extensive qualitative research training conducted the 30–60 min interviews. Seventeen interviews were conducted over the phone, three interviews were conducted at a participant's home, and three interviews were conducted at one of the treatment centers. Each interview was digitally audio-recorded and professionally transcribed verbatim. For this current qualitative secondary analysis, the aims were to capture parents' experiences of the RILS program journey and how their parenting may have shifted as a result. The analysis of the pre-program interviews explored parents' aspirations and motivations for youth attendance. The interviews at 3 months post-program sought to capture parents’ initial experiences following the program and any immediate adjustments or challenges to their parenting roles. Finally, the interviews at 12 months post-program were concerned with capturing established shifts or persisting challenges to parenting approaches. 2.4. Analysis We adopted a constructivist grounded theory approach in order to capture an in-depth understanding of parents’ perceptions and experiences (Creswell, 2003). This approach facilitated a rigorous engagement with the transcripts and thus captured the complexity, richness and meanings concerned with the perceptions and experiences of the participants (Charmaz, 2006). Table 1 Demographics of participants. Number of Parents
Parent Sex
Number of Youth
Youth Mean Age and Range
Youth Sex
Youth Diagnoses/Disabilitiesa
9
4 female 3 male 1 dyad
8
18 (17–21)
8 male
Autism Spectrum Disorder Cerebral Palsy Chronic idiopathic degenerative polyneuropathy Communications Disorder Duchenne Muscular Dystrophy Femoral facial deficiency syndrome Friedrich's Ataxia Hypertrophic Cardiomyopathy Other (eg., acquired brain injury, genetic diseases, learning disability) Scoliosis
a
A youth could indicate more than 1 diagnosis/disability. 141
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One team member (CD) read through each transcript, while simultaneously engaged in the coding process and holding analysis meetings with two additional team members (ACM and GK). The analysis meetings involved discussions of the emerging themes and patterns in the data. The analysis meetings therefore reinforced the inductive approach of analysis and subsequently guided and solidified the analysis process. The coding process evolved into a four-stage process: (a) Initial inductive coding; (b) Focused inductive coding; (c) Memo-writing; and (d) Master themes. The initial inductive coding involved an open-ended exploration of potential themes, patterns and the generation of additional codes. The initial coding was not based on existing theory; it was based on the meaning that emerged from the data (Charmaz, 2006). The focused coding, however, concentrated on drawing out parenting approaches that might hinder the development of life skills for youth. The initial and focused coding used strategic letter and number associations to ensure an effective iterative and systematic coding process. The third stage, memo-writing, involved the accumulation and further identification of the conceptual themes. The themes were then compared and contrasted, and developed into master themes. Finally, with two further team members (AR and SK), a review of the proposed themes was conducted to ensure that the master themes were distinct. Iteration was pertinent to the analysis process; the reciprocal, comparative, and systematic process of iteration guided the emerging insights, which refined the focus (Srivastava & Hopwood, 2009). 3. Results The interviews captured parents’ experiences of the RILS program journey and how their parenting may have changed as a result. Three overarching themes emerged: (1) Anticipation of RILS programs served as a catalyst for positive and negative tensions in parenting; (2) Parenting shifted following RILS programs; and (3) Where parenting shifts were limited, challenges for youth arose and reduced youth future growth. 3.1. Anticipation of RILS programs served as a catalyst for positive and negative tensions in parenting RILS programs were perceived as a motivating facilitator for a shift in parenting. Prior to youth attending RILS programs, some parents anticipated that the RILS program might encourage positive changes in the roles and responsibilities of both youth and parent. It seems that the anticipation of developments in a youth's autonomy and agency, as a result of attending a RILS program, could have the potential to spark timely changes in parenting even prior to program attendance. The RILS program is a starting point for us to back off with our hand holding a little bit and get him doing a little bit more than he can and should be doing on his own. I think we kind of overprotect and over parent. We want to back off and just let him find his own level. (Joyce, Interview 1) It was apparent that, for some parents, the prospect of youth attending RILS programs generated feelings of anxiety. The anticipation of change to their current ways of parenting, in addition to youth embarking on a powerful learning curve, was daunting for some parents. There were parents who expressed concern for their youth's safety: RILS is a very scary thing for this whole family. It's the first time my son has been away from me, and my son is not street smart. So there is a bit of worry there for Dad and Mom. (Harper, Interview 1) In addition, some parents expressed concerns surrounding their current parenting approaches. It seems the anticipation of the RILS program prompted some insecurities as to how much parents support their youth at home. I worry that he may not be capitalizing and experiencing life to the fullest. I think he may be limiting himself because he's used to us doing everything for him. (Bailey, Interview 1) 3.2. Parenting shifted following RILS programs 3.2.1. RILS program attendance was a catalyst for reflection on parenting and realizations of youths’ capabilities Following their youth's attendance at a RILS program, some parents experienced changes in their parenting perspectives. It was evident that RILS programs were a catalyst for introspection, self-reflection and evaluation of current parenting. This reflective process seemed to encourage parents' realizations of youths' capabilities, and subsequently led them to adjust their parenting, which better served both parents and youth. We were already beginning to realize that we were doing too much for him. RILS was like a wakeup call, a springboard to encourage us as parents to help him become independent. I was quite a profound enabler; I was almost seeing him as incapable. I'm trying to pull back on that. [RILS program] has encouraged us to be more aware of knowing when we are doing too much for [NAME]. (Teagan, Interview 2) More specifically, this reflective experience following RILS programs sometimes increased parental trust in, and understanding of, their youth. As much as the youth learned new skills and ways of doing things, it seems parents also indirectly experienced some positive learning. I've learned a lot about myself. I can step back and I can allow him to be independent; that is ultimately what I wanted for him. I trust that he can be independent, and I trust myself to leave it to him to get it done. (Taylor, Interview 3) 142
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We didn't give him enough credit; we've come to realize that he's really quite capable. We see him now as a capable person. We have far more trust in him and we definitely have a better understanding of him. (Teagan, Interview 3). It appears that, for a number of parents, RILS programs were facilitators in initiating shifts in parental roles, responsibilities, and perspectives. Subsequently, these shifts seemed to be accelerators for improving parents’ quality of life including decreased parental anxiety and stress levels. The degree of independence that [NAME] now has improved our quality of life as parents. Our lives no longer rotate around his as much as it did before. [RILS Program] showed him that he could! RILS breaks the apron strings. I think you have to allow them to stumble. (Bailey, Interview 3) I was always worried, anxious, and always doing too much for him. I used to be far more protective and sensitive to everything happening around him; this is now changing. Our family doesn't seem as dysfunctional. I'm less stressed, and I'm exercising more, so I feel healthier. (Teagan, Interview 3) 3.2.2. Parents offered youth greater responsibility Following RILS programs, some parents reported increases in youths' level of responsibility and described ways they adjusted their own behavior to facilitate and accommodate youths’ development. Some parents explained that they adopted self-regulation techniques in order to refrain from communicating on behalf of youth in public, and pestered youth less often to carry out tasks. Other parents offered youth greater responsibility to carry out daily tasks and checked in with youth regularly. After [RILS program] it was hard for me. I had to step back and allow [NAME] to advocate for himself. I really had to bite my tongue, so I didn't speak for him. It's been a learning curve for both of us. I don't nag him or follow up on tasks anymore. He takes the initiative on his own. (Taylor, Interview 3) We're more likely to say have you done this? In the past we would have just done it ourselves for him. (Bailey, Interview 3) 3.2.3. Parenting shifts were challenging Following RILS programs, although parents were motivated to make changes to their parenting in order to encourage the further development of life skills for youth, implementing changes on a daily basis was challenging for some parents. There was a sense that some parents felt conflicted about encouraging youth to develop their adult identities and navigate new responsibilities of adulthood. [RILS] has reinforced that I need to be patient. 18 years in this routine of we do everything for him, I wouldn't say harder to let go, but he is able to do things on his own so we need to let go. (Joyce, Interview 3) Since [RILS] we are aware we need to make changes in how we parent him but to go from 100 percent nurturing and doing everything, to walking away and doing nothing, this is the wrong solution also. (Bailey, Interview 3) 3.3. Where parenting shifts were limited, challenges for youth arose and reduced youth future growth Some parents spoke of limited shifts in their family routines, behaviors and dynamics. When parents reported limited changes at home, it seems this posed a challenge for youth to continue their development of life skills, and to forge their identity and navigate adult roles. We don't give him the freedom that we think we give him. I can see from the times when we let go that we do micromanage a lot of what he does. He doesn't show the initiative at home; he's never been a big risk taker, but part of it's our fault too. I think we still underestimate that he has abilities to be on his own. We know he's capable but sometimes it's just easier to do it ourselves. (Sasha, Interview 2) When he came back home again, it went back into a similar routine. When he was at [RILS program] he was successful in preparing a meal, he's yet to prepare a meal at home though. He does have a lot done for him at home. (Joyce, Interview 3) Although parents realized youths’ capabilities, there was also a sense that some parents were unclear how they should encourage and implement changes. These parents highly valued RILS programs, but perceived that it was difficult to provide life skills learning opportunities for youth at home. It's hard for a parent to teach the life skills that are taught at [RILS programs]; I think it's almost impossible for a parent to teach those skills. We're just too vested in the care that we give them, the ongoing care that we give them. We don't always see what they can do. (Bailey, Interview 3) Parents shared their perspectives on potential areas of development for RILS programs. Once youth returned home from RILS programs, parents recognized that their parenting could support or disrupt what youth had learned during RILS programs. Some parents felt that greater parental engagement with the program and with other parents could improve their experience. It seems, for some parents, opportunities to connect and learn from other parents would be valuable to help prepare them in shifting their approaches. The parents were really hands off. I would like it if they actually had a parent piece. It would be nice if they did a formal piece to the 143
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program, where parents get an opportunity to share too. (Teagan, Interview 2)
4. Discussion Parents’ perceptions and parenting shifts as a result of RILS programs were multifaceted. There were parents who anticipated that the RILS program would be a timely motivator to initiate changes in their parenting. Parents acknowledged that they might, understandably, overprotect their youth at times, and would therefore like to make changes to increase autonomy and agency for their youth. Although RILS programs were anticipated as a timely motivator to adjust overprotective-like parenting behaviors, those behaviors likely had served an important function in protecting the health and wellness of the youth in the past, particularly for youth with high health and medical needs (Young et al., 2018; Hatzman et al., 2014). Prior to youth attending RILS programs, some parents reported feeling anxious and insecure about their youth's ability to engage in such an environment. For many parents, this was the first time that their youth would be intentionally, by choice, out of the family home without a family member for an extended period of time. Furthermore, parents also expressed feeling anxious and insecure about potential changes to their current parenting that the RILS program may bring about. Some parents anticipated that they would experience difficulties if they had to change their parenting approach to allow their youth greater exposure to adult roles and responsibilities. Parents of youth with disabilities can experience considerable anxiety when allowing their youth to develop and experience autonomy and agency (Howe, 2006; Mattson & Kuo, 2019). For example, when youth are exposed to greater levels of autonomy, it may trigger parents' anxiety and concerns for their youth's safety. As a result, parents may unintentionally curb opportunities for youth to participate in growth-promoting activities (Seligman & Darling, 2017). Following RILS programs, some parents spoke of their difficulties in decreasing micromanagement behaviors and increasing opportunities for safe risk-taking for youth. Specifically, attempts to increase patience, and provide youth with more responsibility, seemed to generate feelings of insecurity and anxiety for parents. The priority of their youth's high health and medical needs made it challenging to adjust their parenting to encourage greater opportunities for youth to develop their life skills. Changes in the interaction and development of family members (family functioning), in addition to changes in the emotional bonding among family members (family cohesion), can prove to be complex and challenging for families with a disabled youth (Kingsnorth et al., 2019; Olson et al., 1979; Waters & Friesen, 2019). In particular, the multiple healthcare and community services a young person may require can also add to the impact on family functioning and cohesion (Olson et al., 1979; Waters & Friesen, 2019). We posit that when parents adjusted their parenting, it did in fact create opportunities for youth to develop their life skills further. The adjustment, however, also brought about feelings of anxiety for parents. These unsettled feelings seemed to influence parents to revert back to previous parenting roles and responsibilities. Parents wrestled with tensions in adjusting the parenting roles they had practiced for the majority of the youth's upbringing and those parenting roles that they felt they ‘should’ be practicing now that their youth was entering adulthood. A series of unfolding transactions for both youth and parents occurred; youth embarked on roles of greater responsibility and autonomy, while tensions and conflicting feelings towards parenting heightened challenges for parents. Typically, during this developmental transition, repeated negotiations and adjustment of the balance between youth autonomy and parenting roles and family relations are to be expected (Aseltine & Gore, 1993; Devlieger et al., 2018; Kingsnorth et al., 2019). Although this tension may exist for any parent, there is much less clarity or guidance about how to best negotiate it for parents of youth with disabilities (Hatzmann et al., 2014; Young et al., 2018). RILS programs often focus on youth readiness as a requirement for participation. The current findings suggest that parental readiness may be an equally important concept to consider for program outcomes. As an example, there were parents who, in the interests of time and competing priorities, felt unable to adjust their parenting approach in order to give youth more responsibility in daily tasks and routines. These parents and youth therefore continued with previous roles and routines resulting in limited opportunities for youth to continue the development of life skills at home. There were also parents who expressed uncertainty as to how to encourage and negotiate changes in parent and youth roles and responsibilities, such as decreasing parental monitoring and parental involvement, in order to increase youths’ life skills development. Parents acknowledged that within a parenting role, identifying and providing learning opportunities and experiences for youth to develop life skills can be difficult; for these reasons, parents recognized the value of RILS programs. Conversely, there were parents who expressed reassurance and a greater sense of trust in youth, following RILS programs. The new realizations of youths’ life skills acted as a catalyst for encouraging parents to make adjustments in their parenting and foster independence rather than dependence in their youth. Feelings of fulfillment and experiences of progression are important aspects of parenting often missing in the narrative of transition to adulthood, particularly for families of youth with disabilities (Rapanaro, Bartu, & Lee, 2008). Parents identified providing youth with greater responsibility. They described adjusting to a scaffolding approach that increasingly allowed youth to take an autonomous and responsible role in their daily tasks and routines. It was apparent that some parents adjusted quickly and were very responsive to youths' new life skills competencies, and thus encouraged the youth to further optimize their life skills development. A conceptual framework of transactional process for pediatric rehabilitation (King, Imms, Stewart, Freeman, & Nguyen, 2018) emphasizes how meaningful situated and cumulative experiences can facilitate capacity development. This framework proposes that ongoing transactions of change are an evolving, cascading phenomenon that can be mobilized by interventions, such as RILS programming (King et al., 2018). Furthermore, this framework proposes that ongoing youth-parent transactions mutually influence each other, and thus optimize adjustment to adversity, major life transitions, and new roles (King et al., 2018). Youth-parent transactions can lead to parents influencing their youth's behavior. However, youth are also active agents, 144
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influencing their parents and family context in return (Kingsnorth et al., 2019; Sameroff, 2010). In sum, RILS programs catalyzed shifts in parenting approaches. Parents responded to their youth's development and subsequently sought to adjust their parenting approaches in order to encourage further youth development. For some parents, these shifts were challenging and disruptive. However, for other parents, these shifts contributed to a decrease in parental anxiety and an increase in parental wellbeing. Parents spoke of improvements in their overall quality of life, for example greater involvement in exercise and greater self-care. Such adaptive self-regulatory behaviors have previously been shown to improve parenting, and thus family functioning and family cohesion (Mattson & Kuo, 2019; Olson et al., 1979). 4.1. Clinical implications In order to support the continuous life skills development of youth, greater parental engagement throughout the program was considered potentially beneficial. Currently, RILS programs offer a parent welcome day, before the programs begin. One month after the end of the programs, staff members offer parents a follow-up meeting over the phone. These activities are designed to inform parents about what the RILS program entails and aim to prepare parents for changes in youth. Recommendations for future RILS programs could include an additional follow-up meeting three months after the programs. Furthermore, RILS programs could facilitate opportunities for informal meeting groups led by parents. Social media platforms specifically tailored for the parents of youth who have attended the programs may offer similar benefits (Baum, 2004). Regardless of format, meeting groups led by parents could create opportunities for parents to share their experiences, and to seek and gain advice from each other. Studies have found that parent support groups that are focused on preparing parents of youth with disabilities for their youth's transition to adulthood can act as a powerful resource for parental wellbeing (Jackson, Steward, Roper, & Muruthi, 2018; Kerr & McIntosh, 2000; Kingsnorth, Gall, Beayni, & Rigby, 2011). Some of the greatest benefit in terms of parental wellbeing and quality of life is achieved when parents are able to share their experiences with other parents who are in a similar situation; parents of youth with disabilities are uniquely qualified to help each other (Jackson et al., 2018; Kerr & McIntosh, 2000). 4.2. Limitations It is important to consider parental bias in this study. The parents in this study may represent a group with increased motivation for their youth to succeed in adulthood. Furthermore, parents may have accepted the invitation to participate in interviews as they may have had more of a positive experience of the RILS journey, in comparison to parents who did not choose to participate. Depending on parents’ attitudes and expectations (higher, lower, realistic or unrealistic) of their youth, this may also influence how they depict their experiences of RILS programs and parenting shifts. Considerations of researchers’ assumptions are important, especially in qualitative research (Creswell, 2003). As the team members are proponents of life skills programs for youth with disabilities, we were conscious that our assumptions may have influenced how we interpreted the data. Trustworthiness was therefore reinforced through the analysis meetings as investigator triangulation took place. Triangulation of data source was also reinforced; since three rounds of interviews were conducted at three different time points, the themes and patterns that emerged at the different time points were compared and contrasted (Silverman, 2000). 5. Conclusion This study illustrates that parenting can be positively disrupted as well as challenged when youth attend RILS programs. Such programs offer a springboard for youth to develop life skills during this developmental transition into adulthood. Parents undergo shifts in response to their youth's development, which can be life enhancing as well as complex, challenging, and disruptive to parenting. This study contributes to our understanding of parenting approaches during the developmental transition from adolescence to adulthood in a disability context, the shifts and implications of parenting, and how these all interact together when a catalyst such as RILS programming is introduced. This study also offers recommendations to further support parents in adapting to and sustaining youths' development of life skills during this developmental transition. This knowledge can contribute to future research that examines family context for youth with disabilities and may be useful to inform a broad range of educators including RILS multidisciplinary staff members. Funding This study was supported by an Insight Grant from the Social Sciences and Humanities Research Council of Canada. Dr. Gillian King holds the Canada Research Chair in Optimal Care for Children with Disabilities, funded by the Canadian Institutes of Health Research. This chair is supported by matching funds from the Kimel Family Opportunities Fund through the Holland Bloorview Kids Rehabilitation Hospital Foundation. Declaration of competing interest The authors report no conflicts of interest. 145
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Acknowledgements We acknowledge the support from all the participants who contributed to this research. We wish to thank Holland Bloorview Kids Rehabilitation Hospital, McMaster Children's Hospital, and ErinoakKids for their support of this research. We acknowledge the other members of the Ontario Independence Program Research team. Appreciation is extended to Madhu Pinto and Jesiqua Rapley for their assistance with data collection and manuscript preparation. References Aseltine, R. H., & Gore, S. (1993). Mental health and social adaptation following the transition from high school. Journal of Research on Adolescence, 3, 247–270. https://doi.org/10.1207/s15327795jra0303_3. Baum, L. S. (2004). Internet parent support groups for primary caregivers of a child with special healthcare needs. Pediatric Nursing, 30(5), 381–390. https://doi.org/ 10.1111/j.1744-6155.2009.00223.x. Beijersbergen, M. D., Juffer, F., Bakermans-Kranenburg, M. J., & Van IJzendoorn, M. H. (2012). 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