The lived experience of parents enabling participation of their child with a physical disability at home, at school and in the community
Autor: | Piškur, Barbara, Meuser, Sarah, Jongmans, Marian J, Ketelaar, Marjolijn, Smeets, Rob J E M, Casparie, Barbara M, Haarsma, Frederike A, Beurskens, Anna J H M, Leerstoel Jongmans, Education and Learning: Cognitive and Motor Disabilities |
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Přispěvatelé: | Promovendi PHPC, Revalidatiegeneeskunde, RS: CAPHRI - R3 - Functioning, Participating and Rehabilitation, RS: CAPHRI - R6 - Promoting Health & Personalised Care, Family Medicine, Leerstoel Jongmans, Education and Learning: Cognitive and Motor Disabilities |
Jazyk: | angličtina |
Rok vydání: | 2016 |
Předmět: |
030506 rehabilitation
social participation Activities of daily living media_common.quotation_subject 03 medical and health sciences 0302 clinical medicine children medicine Journal Article 030212 general & internal medicine media_common Disappointment Interpretative phenomenological analysis Lived experience Rehabilitation Social environment Social engagement A physical disability Feeling parents participation medicine.symptom 0305 other medical science Psychology Social psychology |
Zdroj: | Disability and Rehabilitation, 38(8), 803-812. Routledge/Taylor & Francis Group Disability and Rehabilitation, 38(8), 803. Informa Healthcare |
ISSN: | 1464-5165 0963-8288 |
Popis: | PURPOSE: The aim of this study was to provide an in-depth exploration and understanding of parents' thoughts, feelings and concerns they experience while reflecting on their actions, challenges and needs in enabling their child's participation at home, at school and in the community. METHOD: A naturalistic inquiry with thirteen Dutch parents using interpretative phenomenological analysis. RESULTS: Analysis revealed three super-ordinate themes: "Parents' experiences and concerns about systems, laws and regulations", "Parents' experiences and thoughts about physical and/or social environment" and "Parents' experiences and feelings of finding and/or enabling an activity". Parents' often expressed feelings of disappointment derived from being misunderstood, from dealing with the complexity of systems, from hindrance of participation of their children by the social and the physical environment, and from the lack of leisure activities for their child. It is primarily restrictions in the physical and social environments that urge them to take actions, to experience challenges and think of needs. CONCLUSIONS: In-depth exploration and understanding of parents' articulated matters must be shared and taken seriously by policymakers and service providers. Parents' knowledge and experiences should be of major relevance to improve paediatric rehabilitation and other services for children with a physical disability. Implications for Rehabilitation To achieve tailored pediatric rehabilitation, involvement and needs of parents in enhancing their child's participation ought to be acknowledged. Active use of parents' experiences and knowledge regarding the participation of their child on different levels of decision making may improve daily services in pediatric rehabilitation. Aiming for optimal participation of a child with a physical disability at home, at school and in the community, the focus of pediatric rehabilitation needs to shift towards enabling, social and physical, environments. |
Databáze: | OpenAIRE |
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