Experiences and support needs of parents of hospitalised children with multiple disabilities: A qualitative study

Background: The hospitalisation of a multiple disabled child is stressful for parents because they continue to carry out demanding care procedures in hospital. Yet, systematic knowledge of the parental experience and of their support needs is missing. Question: How do parents experience the hospitalisation, and which support needs do they identify for this period? Methods: Twenty-six parents (24 mothers, 2 fathers) of 24 children with multiple disabilities have participated in this qualitative study. Between 1 January 2011 and 1 September 2013, semi-structured interviews were conducted in a children's university hospital. A qualitative content analysis formed the basis for the analysis. Results: "Concerns for the child's well-being" was central for the parents and focussed on the areas of "Pain", "Complications" and "Development". Perception of the child's well-being governs the extent of the "Parents' Work" and defines the parental "Support needs" to "Receive information and training", "Be known and experience continuity", "Be taken seriously and experience communion", "Be accompanied by experienced nurses", and "Be relieved and get organisational support". Conclusion: Parents work hard to safeguard the well-being of their hospitalised child with multiple handicaps. Care professionals can ease the parents' burden by promoting parental confidence in their child's welfare in hospital. This will be successful if continuity of care and competence are ensured, for instance if it is provided by nurses with Advanced Practice background.