Needs Of Parents Of Children With Life-Limiting Illnesses In North Rhine-Westphalia

As part of the evaluation research of a pilot project for paediatric palliative home care in North Rhine-Westphalia (NRW), parents of children who had died from a life-limiting illness were interviewed. The aim of this study was an assessment of the quality of service delivery in NRW from the parents' point of view. The results of the focus group and the individual interviews were analysed by qualitative content analysis. Different structures of care delivery, as well as problems and needs of parents of seriously ill children could be identified. Financial, organisational and medical issues emerged from the parents' accounts. The parents deplored the difficult access to relevant information. With respect to the interaction with medical and nursing staff the importance of mutual trust, a continuous contact person, as well as empathic communication was emphasised. The findings are consistent with international publications. This shows that a better access to information is crucial for the families.