Experiences of healthcare, including palliative care, of children with life-limiting and life-threatening conditions and their families : a longitudinal qualitative investigation

Objectives: To understand the experiences and perceptions of healthcare services of children with life-limiting and life-threatening conditions and their family members, including palliative care.

Design: Longitudinal qualitative interview study with children and their family members. Up to three in-depth interviews were conducted over 13 months with each child and family. Data were analysed using thematic analysis.

Setting: Community and hospital settings in the West Midlands, UK.

Participants: Children with a diverse range of life-limiting and life-threatening conditions, aged between 5 and 18 years, and their family members.

Findings: 31 participants from 14 families including 10 children took part in 41 interviews. Two children died during the course of the study. Children accepted their conditions as part of life and had other priorities for living. Experiences of ‘fighting’ a fragmented healthcare system that focused on the biomedical aspects of their care were described. The possibility of death was rarely openly discussed. Palliative care tended to be conceptualised as a distinct service or phase of a child’s condition, rather than a broad approach. Access to palliative care depended on the availability of specialist services, and on trusted interpersonal relationships with healthcare professionals who could share uncertainty and the family’s emotional burden.

Conclusions: There is an urgent need to create a more child and family centred approach that enables palliative care to be truly integrated into the wider healthcare of children with life-limiting and life-threatening conditions. Trusted, interpersonal relationships with healthcare professionals, and more effective coordination of care are fundamental to achieving this, and should be valued and enabled throughout the healthcare system.