Qualitative analysis of parents' information needs and psychosocial experiences when supporting children with health care needs.

摘要

OBJECTIVE: To identify the information needs of parents of children with health care needs. METHODS: A series of three focus groups and one in-depth interview were held with parents (n = 10, 90% female) in Barnsley, South Yorkshire, UK. RESULTS: Findings were grouped into four themes: delivery of information; levels of support; relationship between the family and professional; and management of events. Parents expressed a preference for information to be delivered on a verbal, 'one-to-one' basis by a professional, supplemented by accessible, written reference materials. The provision of a contact telephone number for a named professional, so further information could be obtained when required, was identified as a key source of support. Participants emphasized the importance of being consulted about the care of their child, the interaction between professional and child, and also of being treated as an individual by the professional. CONCLUSIONS: Delivery of information to parents may be most effective on a verbal, 'one-to-one' basis with a professional, in conjunction with written accessible general and child-specific reference materials. The importance to parents of the provision of contact details for a named professional and specialist nurse support is also emphasized. The psychosocial experiences of parents, along with the impact of the relationship between family and professional, and requirement for good channels of communication, must be taken into account by professionals during the care of children with health care needs. These findings have important implications for professionals and service providers for the future delivery of information to parents of children with health care needs.