The relationship between healthcare professionals and the parents of chronically ill children: negotiating the boundaries between dependence and expertise

Abstract

Abstract Objective Mutual respect and understanding between parents and healthcare professionals are fundamental to the realisation of a partnership in the provision of care to chronically ill children. The aim of this study was an exploration of parents' perspectives on their relationship with healthcare professionals and their involvement in decisions about their child's care. Setting The paediatric department of a district general hospital in the West Midlands, England. Method Qualitative methodology using semi-structured interviews with 27 parents from 20 families with a chronically ill child. Key findings In the time following the child's diagnosis, parents' attitudes towards healthcare professionals often moved from reliance and trust to scepticism and suspicion. This change in attitude derived from their experience of inadequate communication and perception of professionals' failure to understand the reality of the intense and relentless demands and challenges that confront families providing care for a chronically ill child. Parents tended to be initially accepting and deferential to professional expertise. Over time, however, as their experience and confidence increased, they often desired a greater involvement in decisions about treatment and care. This transition, between initial, or episodic, dependency and active partnership, was often not recognised or accommodated by professionals. It was difficult for both parties to negotiate the transition from parents' dependency on health professionals to becoming more independent managers of care. Conclusions Professionals should be aware of parents' preferred and changing level of involvement in care and decision making, and endeavour to accommodate these throughout the process of providing care for chronically ill children.