The usefulness of the sources of formal and informal support in the context of the needs of families with children with disabilities

Abstract

Background: A child’s disability changes the family and has an impact on the quality of life of all its members. Consequently, the family’s needs change as well, especially when it comes to their need for support. Goal: The goal of this study was to map how families with children with disabilities perceive the usefulness of the sources of formal and informal support in the context of family needs, as very important feedback for social work and social policy as major actors in formal support. Methods: The study was conducted using a quantitative research strategy. The relevant data was acquired using two standardized questionnaires – The Family Support Scale (FSS) by authors Dunst, Jenkins and Trivette (1984) and The Family Needs Survey by authors Bailey and Simeonsson (1988). The sample of respondents was comprised of 493 parents of children with disabilities, out of which there was a much larger number of women – mothers (N= 427) than men – fathers (N= 66). Results: The results of the study suggest that for families with children with disabilities, the most dominant need is the support from their relatives, while they also feel an increased need for finances. In terms of the perception of the usefulness of sources, informal support was more dominant, and the support of a husband / wife / partner and close relatives was determined the most useful. The study proved the existence of various statistically significant links, such as the link between informal support in the form of parent groups, financial needs, and the need for support from the community. Conclusion: The study proved an important fact – that whichever kind of formal, but mainly informal support has a direct influence on the extent of the satisfaction of needs. The presence and usefulness of sources of support positively impacts the satisfaction of family needs.