Exploring the role of partnership in the home care of children with special health needs: Qualitative findings from two service evaluations.

摘要

BACKGROUND: Advances in therapeutics and the increasing survival rate among premature infants means that more parents now have to adapt to caring at home for children with special health needs. Community paediatric nurses require a wide range of specialist skills and the concept of partnership appears to be foundational to their care of parents and children. OBJECTIVES: Drawing on data gathered during the course of two service evaluations of community paediatric nursing care of children with special health needs, this paper explores the extent to which a concept analysis of partnership can be verified empirically. EVALUATION METHODS: In-depth interviews were carried out with parents, a range of professionals and members of different agencies who received training from the nursing team. The sample comprised 17 parents and 20 professionals. FINDINGS: Respect for parental routine was strongly evidenced in both areas, was highly valued in the training of carers and contributed to mothers' confidence. Parents acknowledged that nurses' interactional strategies engendered trust, demonstrated respect for them and empathy for their child. These features of care resonate strongly with partnership attributes identified in the conceptual analysis. Nursing support of parents demonstrated a deep understanding of different styles of adult learning, of how to alleviate psychological and emotional stress and of parental vulnerability. In addition, there was evidence of extensive partnership working across health and social care boundaries. The findings demonstrated the wide range of such collaboration, the time necessary to make it work and the benefit that accrues to the families. CONCLUSIONS: It was possible to make empirical links with the partnership attributes identified in the concept analysis although the data highlight the complexity of some of the individual attributes. While there may be overlap between professional-parent partnership and partnership at the level of service co-ordination, there may also be important differences which merit further enquiry. In terms of policy and practice, findings suggest that partnership in the community setting is central to effective service delivery but is knowledge, skill and resource intensive.