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

Amy C McPherson, Gillian King, Alanna Rudzik, Shauna Kingsnorth, Jan Willem Gorter, Ontario Independence Program Research (OIPR) team, Amy C McPherson, Gillian King, Alanna Rudzik, Shauna Kingsnorth, Jan Willem Gorter, Ontario Independence Program Research (OIPR) team

Abstract

Background: Young 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.

Methods: The 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.

Discussion: This 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 registration: The trial registration number on clinicaltrials.gov is NCT02753452 (retrospectively registered 26 April 2016). Trial sponsor: Holland Bloorview Kids Rehabilitation Hospital.

Keywords: Adulthood; Disabilities; Environment; Life skills; Protocol; Qualitative research; Self-determination; Self-efficacy; Therapy; Transitions; Youth.

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