Daily actions, challenges, and needs among Dutch parents while supporting the participation of their child with a physical disability at home, at school, and in the community: a qualitative diary study

BMC Pediatrics

Research Article

Marjolijn Ketelaar¹  Rob J. E. M. Smeets²  Marian J. Jongmans³  Barbara M. Casparie⁴  Anna J. H. M. Beurskens⁵  Barbara Piškur⁶ 

[1] Brain Centre Rudolf Magnus and Centre of Excellence for Rehabilitation Medicine, University Medical Centre Utrecht and De Hoogstraat Rehabilitation, Rembrandtkade 10, 3583 TM, Utrecht, The Netherlands;Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands;Department of Rehabilitation Medicine, CAPHRI, School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD, Maastricht, The Netherlands;Adelante Centre of Expertise in Rehabilitation, Zandbergsweg 111, 6432 CC, Hoensbroek, The Netherlands;Partner of NetChild, University Network for Childhood Disability Research in the Netherlands, Utrecht, The Netherlands;Department of Child, Family and Education Studies, Faculty of Social and Behavioral Sciences, Utrecht University, PO Box 80140, 3508 TC, Utrecht, The Netherlands;Department of Neonatology, Wilhemina Children’s Hospital, University Medical Centre Utrecht, AB 3508, Utrecht, The Netherlands;Research Centre Autonomy and Participation for Persons with a Chronic Illness, Faculty of Health, Zuyd University of Applied Science, Nieuw Eyckholt 300, 6419 DJ, Heerlen, The Netherlands;BOSK, The Dutch Association of People with Disabilities and Their Parents, 3502 GJ, Utrecht, The Netherlands;Research Centre Autonomy and Participation for Persons with a Chronic Illness, Faculty of Health, Zuyd University of Applied Science, Nieuw Eyckholt 300, 6419 DJ, Heerlen, The Netherlands;Department of General Practice, CAPHRI, School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD, Maastricht, The Netherlands;Research Centre Autonomy and Participation for Persons with a Chronic Illness, Faculty of Health, Zuyd University of Applied Science, Nieuw Eyckholt 300, 6419 DJ, Heerlen, The Netherlands;Department of Occupational Therapy, Faculty of Health, Zuyd University of Applied Science, Nieuw Eyckholt 300, 6419 DJ, Heerlen, The Netherlands;Department of Rehabilitation Medicine, CAPHRI, School for Public Health and Primary Care, Faculty of Health, Medicine and Life Sciences, Maastricht University, P.O. Box 616, 6200 MD, Maastricht, The Netherlands;Department of Neonatology, Wilhemina Children’s Hospital, University Medical Centre Utrecht, AB 3508, Utrecht, The Netherlands;

关键词: Children;    Physical disability;    Parents;    Actions;    Challenges;    Needs;    Qualitative study;    Diary method;    Family centred service;    Environment;   

DOI  :  10.1186/s12887-016-0768-6

 received in 2016-09-07, accepted in 2016-12-22,  发布年份 2017

来源: Springer

【 摘 要 】

BackgroundParents have a vital influence on the participation of their child with a physical disability. The aim of this study is to gain insight into parents’ own daily actions, challenges, and needs while supporting their child with a physical disability at home, at school, and in the community. An additional objective of this study is to refine the preliminary thematic framework previously identified in a scoping review.MethodsA qualitative research inquiry was performed based on using a diary over a 7-day period to gather data. To systematically organise data into a structured format, content analysis has been applied using both inductive and deductive reasoning guided by the existing preliminary thematic framework.ResultsAnalysis of the eligible diaries shows that the actions mentioned by the 47 parents describe several efforts to enhance participation of their children with a physical disability by using, enabling, or changing the social and physical environment, or by supporting their child to perform or engage in meaningful activities. Those parents’ actions are primarily a result of challenges caused by restrictions in social and physical environments. Parental responses highlighted, above all, the need for environments designed for all people. Based on the findings a redefined thematic framework is presented.ConclusionsParents’ actions, challenges, and needs are mainly directed towards the social or/and physical environment. The presented thematic framework can offer practitioners knowledge to support parents. More work is necessary to provide tailored approaches. Paediatric rehabilitation may need to address the importance of the environment on the participation of a child with a physical disability.

【 授权许可】

CC BY   
© The Author(s). 2017