Parents’ experiences of paediatric palliative care in the community healthcare system: a qualitative study

BACKGROUND: Having a child with a life-limiting illness is a situation that is relatively rare and represents a multidimensional burden on the family. Paediatric palliative care (PPC) aims to maintain the quality of life for the ill child and the family. Traditionally, most PPC has been provided at a specialist healthcare level, but research indicates that most families wish to spend as much time at home as possible. However, we have limited knowledge of PPC in community healthcare, especially from the parent’s perspective. This knowledge is important to provide optimal home-based PPC. OBJECTIVES: To explore parents’ experiences of PPC within the community healthcare system. DESIGN: Qualitative study with an interpretive descriptive design. METHODS: In all, 11 parents of children with different life-limiting illnesses were interviewed after the child’s death using a semi-structured interview guideline. Data were analysed using systematic text condensation. Consolidated criteria for reporting qualitative research (QOREQ) was followed. RESULTS: The parents’ experiences were captured in five main themes: (i) ‘Interaction with hospital and community services’, (ii) ‘Parents did not always get the help they needed’, (iii) ‘The child’s needs became increasingly complex’, (iv) ‘When the end came’ and (v) ‘The parents asked for an ordinary life in an unordinary situation’. Each main theme was further elaborated by two subthemes. CONCLUSION: Overall, the parents experienced PPC in the community as limited and fragile, and as lacking flexibility, coordination and professional competence related to the children’s complex needs. There appears to be potential for improvement in PPC through improved care coordination between the hospital and the community healthcare services, involving the community healthcare system at an early timepoint in the illness trajectory, including a family focus, and providing accessibility, flexibility and care coordination of community services. REGISTRATION AND REPORTING GUIDELINES: The study is registered in the institutional system for research project (RETTE; ID number F2082).