An Exploration of the Dilemmas Encountered by Staff Working in Paediatric Palliative Care

This study examined the experience of clinical staff working in paediatric palliative care (PPC). The involvement of parents in the provision of care alongside professionals and differences in interpreting a child’s condition and palliative status by parents, professionals and the children themselves are likely to impact on decision-making and may result in challenges and conflicts of interests. Dilemmas arising from the interplay of potentially opposing perspectives are likely to cause tension and make it difficult for staff to know how to proceed. However, insufficient attention has been paid to understanding staff’s experience of these dilemmas. The aims of this study were to explore the dilemmas encountered by staff in PPC. Particular attention was paid to how staff coped and made sense of these dilemmas and whether they drew on any held beliefs, values or other frameworks to facilitate coping or sense making. Actual and desired systems of support which facilitated coping were also explored. The study employed a qualitative methodology. Semi-structured interviews were conducted with nine members of staff and data derived from the interviews was analysed using Interpretative Phenomenological Analysis. Four super-ordinate themes were developed: ‘Dilemmas: Familiar Yet Uncomfortable’, ‘Greater Perspective on Life’, ‘Moving between the Professional and Personal’ and ‘Sharing the Burden’. Participants frequently encountered dilemmas in their practice. Building long-term relationships with families provided unique insights into families’ lives which participants experienced as enriching through a greater appreciation of their own lives and which helped them to cope. Staff drew on aspects of both their personal and professional identity to help them make sense of dilemmas. They valued a number of support systems including peer support, managerial support and supervision to help them cope and identified ways of achieving greater cohesion. The findings are discussed in relation to the literature and implications for future research and clinical practice were considered.