A qualitative descriptive analysis of nurses' perceptions of hospice care for deceased children following organ donation in hospice cool rooms

Abstract

Following organ donation, bodies of children are generally cared for in hospital mortuaries or by funeral directors, and their families are offered little routine bereavement support. A partnership between an organ donation nursing team and regional children's hospice trialled an initiative where families were offered bereavement support from the hospice, and their child's body was cared for in a 'cool room' after death. Hospice services are usually restricted to children with life-limiting conditions, and their families. To explore the perceptions and experience of nursing staff who are involved in supporting families of children and young people who have been cared for in children's hospice cool rooms after death, following organ donation. A qualitative exploratory study consisting of a focus group interview with registered nurses from the children's hospice and organ donation teams. A purposeful sample of nurses was recruited. Data were collected in a digitally-recorded focus group interview during March 2018. The interview was transcribed and analysed using a qualitative content approach. Six nurses participated in the focus group. Analysis revealed five themes that characterised the perceptions of nurses: (i) barriers to care, (ii) bereavement care for families, (iii) impact on families and staff, (iv) influencers and enablers of change, and (v) sustainability of new practices. Nurses perceived the long-term, responsive and family-centred approach to bereavement support as a strength of the hospice model, reducing the experience of moral distress in organ donation nurses.