Een literatuurstudie naar de hulpvragen en ondersteuningsbehoeften van gezinnen waarin een kind met een fysieke beperking opgroeit.

Abstract

Aims This review is the first step in a new study at Utrecht University, Navigation in Paediatric Rehabilitation: Assessing needs of families with children with disabilities. The goal of the larger study is to develop an instrument that will help parents to inventory family needs, and to help them to express these needs to care providers. Three steps will be performed prior to the implementation of the instrument: a broad literature review on family needs (step 1), interviews with parents of children with a physical disability (step 2), and meetings with an expert panel, consisting of parents and child care professionals (step 3). The aim of the review is to provide an overview of needs of families with a child with a physical disability described in international scientific literature. Method A systematic search was conducted in ERIC, PsycINFO and Pubmed databases for the period 1978 through 2007. Only papers that described needs of families with a physically disabled child were included in the review. Articles were evaluated on child diagnosis, study focus, study population, research method, instruments, and results. Results Of the 49 initially selected papers, 27 fulfilled the inclusion criteria. These papers were all written in English and analyzed the needs or experiences of parents of a physically disabled child. Analyses of the 27 research papers resulted in a list of 112 different family needs, which were divided into six clusters. The main cluster is ‘information needs’, which consists of 50 different items. Other clusters are ‘needs for support’ (n = 10), ‘explaining to others’ (n = 5), ‘service needs’ (n = 15), ‘financial needs’ (n = 11), and ‘family support’ (n = 21). Conclusion The results of the review emphasize the variety of needs that families with a child with a physical disability experience, with ‘information needs’ taking an important place. In the next step of the study, the list of needs will be completed with the needs identified through interviews with parents of children with a physical disability.