Coordinating Children's Palliative Care in Municipalities: A Qualitative Study

Abstract

Background: Children with palliative care conditions and their families have complex care needs. In Norwegian municipalities, designated coordinators facilitate cooperation between health and social care services to ensure a holistic approach to meeting these needs. However, information is limited concerning how coordinators perform their duties and the factors influencing their work performance. Aim: To explore the factors influencing coordinators’ motivations and work performance regarding children’s palliative care (CPC) in municipalities. Methods: Semi-structured interviews were conducted with 11 coordinators for children in palliative care and analysed using a reflexive thematic analysis approach. Results: Both internal and external factors influenced the coordinator's work performance, and they experienced a range of barriers in their efforts to achieve holistic care. Four themes were generated: ‘random knowledge on children’s palliative care’, ‘the abstract concept of coordination’, ‘striving to unite the fragmented whole’ and ‘aiming for tailored coordination’. A lack of training and experience in CPC is widespread among the coordinators. Additionally, the municipal systems seem inadequately developed to address the needs of children in palliative care and their families. Conclusion: Strengthening coordination in municipalities for children in palliative care and their families requires that coordinators receive systematic training in CPC and further development of their support systems.