Promoting Self-Determination Skills Among Youth with Special Health Needs Using Participatory Action Research

Burstein, Karen; Bryan, Tanis; Chao, Pen-Chiang

doi:10.1007/s10882-005-3688-1

Cited by 16 publications

(12 citation statements)

References 10 publications

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“…Two key life skills targeted by life skills programs are self-determination and self-efficacy [10, 11]. Self-determination refers to the ability to make choices and have control over one’s life [12]. A strong sense of self-determination is associated with improved life outcomes among youth with disabilities [13, 14].…”

Section: Introductionmentioning

confidence: 99%

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study

et al. 2016

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BackgroundYoung people with disabilities often lag behind their typically developing peers in the achievement of adult roles, which has been attributed to a lack of opportunities to develop critical life skills. Residential Immersive Life Skills (RILS) programs provide situated learning opportunities to develop life skills alongside peers and away from home in real-world settings. Retrospective research suggests that attending RILS programs is a transformative experience that empowers youth, provides parental hope, and increases service provider expertise. However, prospective, comparative research is needed to determine longer term benefits of these programs on youth life trajectories, in addition to exploring the program features and participant experiences that optimize program success. This protocol describes a 5-year, multi-site prospective study examining the effects of RILS programs for youth with disabilities.MethodsThe study involves RILS programs at three sites in Ontario, Canada. Cohorts of treatment and control groups will receive the study protocol over 3 successive years. Thirty English-speaking participants aged 14–21 years with a child-onset disability and the cognitive capacity to engage in goal setting will be recruited every year for 3 years in the following groups: youth attending a RILS program (Group A); a deferred RILS control group of youth (Group B); a control group of youth attending a non-residential life skills program (Group C); and a control group matched on age, diagnoses, and cognitive capacity not receiving any life skills intervention (Group D). All participants will complete measures of self-determination and self-efficacy at four time points. Program opportunities and experiences will also be assessed in-the-moment at the RILS programs. Qualitative interviews pre-program and at 3- and 12-months post-program will be undertaken with a sub-sample of youth and parents to explore their expectations and experiences.DiscussionThis study will address key gaps in the literature pertaining to the long-term impact of RILS programs and the role of immersive environments in shaping youth outcomes and experiences. Our research program aims to uncover transferable processes and essential features by which RILS programs have their effects on attitudes, cognitions, and behaviour.Trial registrationThe trial registration number on clinicaltrials.gov is NCT02753452 (retrospectively registered 26 April 2016).Trial sponsor: Holland Bloorview Kids Rehabilitation Hospital.

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Section: Introductionmentioning

confidence: 99%

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study

et al. 2016

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“…Significantly, adolescents with disabilities were involved in the design of the study and not merely the data collection process. Burstein et al (2005) engaged high school students with physical impairments in participatory action research to help deal with aspects of their daily lives. The study concluded that participatory action research was a useful method among youth with disabilities not only in addressing activities of daily living but also in their quest for self-determination.…”

Section: Youth With Disabilities In Participatory Researchmentioning

confidence: 99%

Troubling power dynamics: Youth with disabilities as co-researchers in sexuality research in South Africa

Chappell

Rule

Dlamini³

et al. 2014

Childhood

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Although a proliferation of participatory studies has explored youth sexuality in the African context, very few studies have included youth with disabilities. This is inevitably a result of the misconceptions surrounding disabled sexualities and youth with disabilities' competence in undertaking research. This article argues against these misconceptions by outlining a participatory sexuality study that worked with youth with disabilities as co-researchers in South Africa. In discussing the experiences of the young disabled co-researchers, the article troubles the constructs of power and empowerment in youth participatory research.

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“…During the past decade, participatory action research (PAR) methodologies, aimed at involving constituents of research at all levels, have gained growing attention and support (Burstein, Bryan, & Chao, 2005;Power, 2002;L. E. Powers, 2006;Small, 1995).…”

Section: Youth-directed Research Solutionsmentioning

confidence: 99%

“…As expressed by Gaventa (1988, p. 19), "In the process, research is seen not only as a process of creating knowledge, but simultaneously as education and development of consciousness, and of mobilization for action." Studies using PAR empowerment research with marginalized groups, such as persons with disabilities, have demonstrated the resulting increase in skill development, self-reliance, empowerment, and social and policy change (Burstein et al, 2005;Stewart & Bhagwanjee, 1999;Suarez de Balcazar, Fawcett, & Balcazar, 1998). From this perspective, methods are selected that both address the research question and achieve empowerment aims for the participants.…”

Section: Youth-directed Research Solutionsmentioning

confidence: 99%

Building a Successful Adult Life: Findings From Youth-Directed Research

Powers

Garner²,

Valnes³

et al. 2007

Exceptionality

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Although transition outcomes for youth with disabilities have shown some improvement and transition support practices have been identified, many young people continue to face transition barriers that preclude their full participation in key adult life activities. While research efforts have largely been professionally driven, there is emerging literature suggesting that the use of participatory, empowerment methodologies may bolster the identification of appropriate research methods and useful solutions to problems, as well as promoting the application of findings to accomplishing practice and policy improvements. The purpose of this study was to use a youth-directed, participatory action methodology to investigate youths' perceptions of the value of transition promotion experiences identified as effective by professionals, and to examine the level at which youth with disabilities participate in those experiences. A survey was developed and administered to 202 young people with disabilities by leaders from the National Youth Leadership Network. Findings indicated that youth generally endorse the importance of validated transition promotion practices; however, they reported having limited opportunity to participate in them. Implications related to the use of participatory action methodologies and needed practice and policy improvements are discussed.

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Promoting Self-Determination Skills Among Youth with Special Health Needs Using Participatory Action Research

Cited by 16 publications

References 10 publications

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study

Optimizing life success through residential immersive life skills programs for youth with disabilities: study protocol of a mixed-methods, prospective, comparative cohort study

Troubling power dynamics: Youth with disabilities as co-researchers in sexuality research in South Africa

Building a Successful Adult Life: Findings From Youth-Directed Research

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