A good death in the child with life shortening illness : A multiple case study

Chong, Poh Heng and Walshe, Catherine and Hughes, Sean (2021) A good death in the child with life shortening illness : A multiple case study. PhD thesis, Lancaster University.

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Abstract

Introduction: Understanding what a ‘good death’ in children might look like is important, as it impacts all stakeholders and promotes tailored support. Existing research indicates that opportunities for play, peer support and assent may be crucial. Our integrative review found meeting needs and managing control instrumental. The influence of disease type, location of death and access to palliative care is still unclear. Aim: To explore how a good death in a child with life shortening illness can be achieved in the real-world context and the key factors that shape it. Method: A qualitative multiple-case study design. The case was defined as family and professional caregivers of children who died. Cases were identified from a single institution in Singapore, stratified according to disease categories (cancer or non-cancer) and whether specialist palliative care was received. Participants included parents, and healthcare providers from a hospital and a community palliative care service. Data collection included (1) interviews, (2) artefacts, (3) clinical notes, focusing on the month before death. Framework Analysis was used to facilitate within and across case analysis, involving pattern matching and theoretical replication. Results: Five cases were formed, with eight parents and fourteen professionals as respondents. Eight common and five contingent themes were identified. Common themes are universal in salience; contingent themes, though equally relevant, apply in a subset. Based on their relationship with a child’s death, all themes are sub-categorised under three headings. (1) Antecedents: Common – Letting go, Acknowledging the child, Closure; Contingent – Doing everything possible, Miracle hope, Different levels of awareness. (2) Determinants: Common – Suffering, Control, Systems and processes; Contingent – Being home, Palliative care. (3) Attributes: Common – Comfort, Dying not prolonged. An ecologically sound and holistic conceptual framework is represented. Conclusion: Elements critical to a good death in a child are revealed, particularly around personal attitudes and service at a systemic level.