Respect for autonomy in the healthcare context: observations from a qualitative study of young adults with cerebral palsy

Racine, Éric; Larivière‐Bastien, Danaë; Bell, Emily; Majnemer, Annette; Shevell, Michael

doi:10.1111/cch.12018

Cited by 29 publications

(61 citation statements)

References 17 publications

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“…This result is not consistent with the literature (Elad et al, 2013; Racine et al, 2013) and may be related to the fact that all the participating children attend rehabilitation centers in which a family centered approach is adopted. In the family centered approach the families are expected to be involved in the therapy of their children (e.g., physiotherapy).…”

Section: Discussioncontrasting

confidence: 91%

“…Conversely, the parental style of Control and Restriction and Rejection and Hostility (CR/RH) restrains the development of autonomous behaviors through restriction of opportunities and impediment on children to act freely (Aran et al, 2007). In fact, CR/RH emerges as the predominant parental style in parents/caregivers with children with disabilities, namely CP (Elad et al, 2013; Racine et al, 2013). For example, Elad et al (2013) found that the mothers of children with hemiplegic CP scored their children performance lower than the therapists using clinical assessment protocols.…”

Section: Introductionmentioning

confidence: 99%

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“My Child has Cerebral Palsy”: Parental Involvement and Children’s School Engagement

et al. 2016

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Engaged students tend to show school-committed behaviors (e.g., attend classes, get involved with the learning process), high achievement, and sense of belonging. However, students with disabilities are prone to show a lack of engagement with school due to the specific difficulties they have to handle. In fact, children with disabilities are likely to show poor participation in school when compared with children without disabilities. This poor involvement is related to their low autonomy to participate in the school activities, which, in turn, results in low school engagement. Parents play a crucial role in their children’s education. Parental involvement in school activities promotes autonomous behaviors and, consequently, school engagement. In fact, extant literature has shown close relationships between parental involvement, school engagement, and academic performance. Yet, parental involvement in school activities of children with Cerebral Palsy (CP) has received little direct attention from researchers. These children tend to display lower participation due to the motor, or cognitive, impairments that compromise their autonomy, and have a high likelihood to develop learning disabilities, with special incidences in reading and arithmetic. Therefore, our aim is twofold, to understand the parental styles; and how the perceived parental involvement in school activities is related to their children school engagement. Hence, 19 interviews were conducted with one of the parents of 19 children with CP. These interviews explored the school routines of children and the perceived involvement of parents in those routines. Additionally, children filled out a questionnaire on school engagement. Results show that the majority of the parents were clustered in the Autonomy Allowance and Acceptance and Support parental style, and the majority of their children were perceived as autonomous. Moreover, about a half of the children reported a high level of school engagement. Finally, neither children’s autonomous behaviors reported by parents, nor parental style, seem to be related with the children’s level of school engagement. Rehabilitation centers and schools could consider training parents/caregivers focusing on their educational needs, promotion of reflections on the usefulness of applying autonomy promotion strategies with their child, and foster their involvement.

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Section: Discussioncontrasting

confidence: 91%

Section: Introductionmentioning

confidence: 99%

“My Child has Cerebral Palsy”: Parental Involvement and Children’s School Engagement

et al. 2016

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“…As youth age toward adulthood, it was suggested that parents consider incrementally removing, as safe to do so, the “scaffolding” that may nurture earlier dependence on parents. The development of an optimal level of scaffolding was described to be a foundational goal of transitional support [Kaufman, Horriks, & Kaufman, ; Lariviere‐Bastien & Racine, ; Pinzon & Harvey, ; Racine, Lariviere‐Bastien, Bell, Majnemer, & Shevell, ). Yet there was a simultaneous deeply expressed respect for families and their profoundly important support role in the ongoing life of many adults with ASD.…”

Section: Resultsmentioning

confidence: 99%

Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research

et al. 2016

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Research related to supports for adults with autism spectrum disorder (ASD) is under-developed. As an example, system and service development to support successful transition to adulthood and meaningful vocation for adults has received relatively little research scrutiny until recently, with practitioners and program developers lacking evidenceinformed approaches guiding service delivery. A Special Interest Group (SIG) was convened at the International Meeting for Autism Research in May 2014 and May 2015, with a focus on transitional and vocational issues in ASD. The SIG consisted of 120 international delegates, including self-advocates, family members, researchers, program and policy developers, practitioners, and interdisciplinary ASD trainees. Following a summary of the literature, subgroups of attendees were convened in smaller groups to identify research needs and priorities. International researchers facilitated these discussions with notes taken in each subgroup. Using a qualitative analytic approach, key themes across groups were identified. These key themes, outlined in this paper, address the identified need to (a) advance research capacity; (b) build employer capacity relative to employing persons with ASD; and (c) enhance support resources for adults with ASD and their families. Heightened research activity guiding practice and policy, community/employer engagement, and person and family-centered services were recommended. Implications for advancement and implementation are offered. Autism Res 2017, 10: 15-24. © 2016 International Society for Autism Research, Wiley Periodicals, Inc.

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“…Autonomy, for adolescents with disabilities, includes taking responsibility for their behavior, making decisions regarding their lives, and maintaining supportive social relationships (Crittenden 1990). One area where adolescents with disabilities can begin to exercise autonomy with the support and influence of family members involves making medical decisions (Racine et al 2012). Terrone et al (2014) studied the relationship between adolescent autonomy and their perceptions of feelings and attitudes experienced within the family in adolescents with and without disabilities.…”

Section: Autonomymentioning

confidence: 99%

Adolescents with Disabilities

Maxey

Beckert

2016

Adolescent Res Rev

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Adolescents with disabilities face many challenges common to their typically developing peers. However, the ways that they resolve them may differ. The focus of this narrative overview was to summarize results from the disabilities in adolescence literature, highlight common research directions, evaluate the overall big picture of this literature, and draw conclusions based on general interpretations. Evidence suggests that the literature in this field of study is lacking. Suggestions for improvement include increasing the number of studies that focus specifically on adolescence across the various types of disabilities, establishing a theoretical base to anchor research, forming cohesion across disabilities among researchers, and taking a comprehensive approach to intervention studies. By addressing these issues in future research, scholarly knowledge will be increased, but more importantly, the lives of young people with disabilities can be greatly enhanced.

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Respect for autonomy in the healthcare context: observations from a qualitative study of young adults with cerebral palsy

Cited by 29 publications

References 17 publications

“My Child has Cerebral Palsy”: Parental Involvement and Children’s School Engagement

“My Child has Cerebral Palsy”: Parental Involvement and Children’s School Engagement

Research needs and priorities for transition and employment in autism: Considerations reflected in a “Special Interest Group” at the International Meeting for Autism Research

Adolescents with Disabilities

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