An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging, fun, and control and choice

King, Gillian; Gibson, Barbara E.; Mistry, Bhavnita; Pinto, Madhu; Goh, Freda; Teachman, Gail; Thompson, Laura

doi:10.3109/09638288.2013.863389

Cited by 47 publications

(45 citation statements)

References 39 publications

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“…Two‐thirds of the studies reviewed focused on sports or physical activity; fewer studies related to other leisure areas. A very recent study found that CYP with severe disabilities who engaged in mostly sedentary leisure valued leisure experiences that offered a sense of belonging, fun, and control and choice, closely echoing the findings of this synthesis . Future studies should focus further on the meanings of sedentary and solitary leisure participation to CYP with physical disabilities, and should also consider populations that remain underrepresented, such as CYP with communication limitations or without independent mobility.…”

Section: Discussionsupporting

confidence: 69%

“…Participants of the included studies consistently discussed how leisure and having fun were strongly related to the social context of leisure (i.e. the people present and the interactions with them) . For three of the four descriptive themes (‘freedom’, ‘fulfilment’, and ‘friendship’), the CYP reflected on how their leisure participation can be restricted by their social environment .…”

Section: Discussionmentioning

confidence: 99%

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The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis

Powrie

Kolehmainen

Turpin

et al. 2015

Develop Med Child Neuro

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Aim Participation in leisure has known health benefits. Children and young people (CYP) with physical disabilities demonstrate reduced participation in leisure. To facilitate their meaningful participation, one must understand what leisure means to CYP. The aim of this study was to systematically synthesize evidence from qualitative studies on the meaning of leisure for CYP with physical disabilities. Methods CINAHL, MEDLINE, AMED, EMBASE, PsycINFO, and ERIC were searched periodically from January 2012 until May 2013. Qualitative studies reporting the views of CYP (0–18y) with physical disabilities on leisure participation were included. The analysis involved thematic syntheses, double coding, and established quality appraisal procedures. Results Twelve studies met inclusion criteria, addressing the leisure experiences of 146 CYP with disabilities. Four themes core to the meaning of leisure for these CYP were (1) ‘fun’: the enjoyment and pleasure experienced from leisure; (2) ‘freedom’ of choice and from constraints; (3) ‘fulfilment’: discovering, developing, and displaying potential; and (4) ‘friendship’: social connectedness and belonging. Interpretation The identified themes resonate with the psychological needs outlined by self‐determination theory: fun relates to satisfaction and intrinsic motivation; freedom relates to ‘autonomy’; fulfilment relates to a belief in 'competence'; and friendship resonates with ‘relatedness’. Social context had an impact on all of these themes, indicating that this is an important target for leisure participation interventions.

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Section: Discussionsupporting

confidence: 69%

Section: Discussionmentioning

confidence: 99%

The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis

Powrie

Kolehmainen

Turpin

et al. 2015

Develop Med Child Neuro

View full text Add to dashboard Cite

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“…2,3 The adoption of these PROMs in neurorehabilitation may not be appropriate because the meaning of the measured construct may be different for young people with developmental disabilities, who may have cognitive and physical impairments that shape their everyday experiences. 4,5 These differences may affect the way young people with developmental disabilities interpret and respond to PROM items and threaten the validity of the scores obtained. 6,7 Therefore, there is a need for a PROM of functional performance designed specifically for young people with developmental disabilities.…”

mentioning

confidence: 99%

Refining the Pediatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO) item candidates: interpretation of a self‐reported outcome measure of functional performance by young people with neurodevelopmental disabilities

Kramer

Schwartz

2017

Develop Med Child Neuro

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AIM This study examined the item interpretability and rating scale use of the Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI-PRO) by young people with developmental disabilities. The PEDI-PRO assesses the functional performance of discrete functional tasks in the context of everyday life situations. METHOD A two-phase cognitive interview design was implemented with a convenience sample of 37 young people (mean age 19y, 0 mo, SD: 2y 5 mo; 35% (13/37) male and 65% (24/37) female; 68% with intellectual disability) with developmental disabilities. In phase I, 182 item candidates were each reviewed by an average of four young people. In phase II, 103 items were carried forward or revised and each reviewed by an average of seven additional young people. Two raters coded responses for intended item interpretation and performance quality; codes were analysed using descriptive statistics. Qualitative analysis explored young people’s self-evaluation process. RESULTS Items were interpreted as intended by most young people (mean 86%). Young people can use PEDI-PRO response categories appropriately to describe their performance: 94% of positive performance descriptions coincided with a positive response category choice; 73% of negative descriptions with a negative choice. Young people interpreted items in a literal manner, and their self-evaluation incorporated the use of supports that facilitate functional performance. INTERPRETATION The PEDI-PRO’s measurement framework appears to support the self-evaluation of functional performance of young people with developmental disabilities.

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“…Moreover, for some people with intellectual disabilities, social inclusion activities that promote risk can provide increased enjoyment (King et al 2014). Mouffe reminds us that consensus can breed apathy, whereas conflict can ignite the passions.…”

Section: Risky Spacesmentioning

confidence: 99%

Counting inclusion with Chantal Mouffe: a radical democratic approach to intellectual disability research

Simplican

Leader

2015

Disability & Society

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As mandates for social inclusion of people with intellectual disabilities remain unfulfilled, many scholars question whether the concept of inclusion is to blame. Critics worry that quantitative measurements of inclusion miss what should count: a meaningful life gained from a sense of belonging. We argue that both concepts -inclusion and belonging -embody a communitarian ethos in which citizens mirror the values of their community. In contrast, Chantal Mouffe's radical democratic approach to inclusion emphasizes the importance of difference and the inevitability of exclusion. Mouffe thus offers a way to broaden our approach to social inclusion in the twenty-first century.

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An integrated methods study of the experiences of youth with severe disabilities in leisure activity settings: the importance of belonging, fun, and control and choice

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Cited by 47 publications

References 39 publications

The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis

The meaning of leisure for children and young people with physical disabilities: a systematic evidence synthesis

Refining the Pediatric Evaluation of Disability Inventory–Patient‐Reported Outcome (PEDI‐PRO) item candidates: interpretation of a self‐reported outcome measure of functional performance by young people with neurodevelopmental disabilities

Counting inclusion with Chantal Mouffe: a radical democratic approach to intellectual disability research

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