Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature.

backgroundThis systematic review aims to raise awareness of the concept of parental hope, which is distinct from the idea of agency – acting on behalf of someone else. Parental hope is an important factor in end-of-life care, particularly in light of recent advances in perinatology, neonatology, and paediatric palliative care (PPC). Parenting involves autonomous agency – acting and thinking on one's own behalf – as well as making decisions for one's children. Consequently, parental permission, authority and decision-making are integral aspects of parental attitudes towards their children in PPC. To our knowledge, this is the first systematic review to focus specifically on the ethical implications of parental hope in PPC.

methodsA qualitative systematic review utilising Charmaz’s initial and focused coding of constructing grounded theory. A systematic search was conducted across two databases: Web of Science and Embase. The research period was from 01/01/2014 to 20/02/2025. Two reviewers independently screened articles against the eligibility criteria and appraised them using CASP critical appraisal tools. Sixty studies met the inclusion criteria and were analysed using initial and focused coding, with the results presented in diagrams. The results were reported in the PRISMA protocol.

resultsKey findings included identifying parental hope in PPC as a valuable area of future ethical research, given the various dilemmas involved and the potential advantages for parents of developing their caregiving skills for their children. The results of the four themes (‘False and realistic versus unrealistic parental hope’, ‘Evolution of parental hope as a child’s illness progresses’ with 17 sub-themes, ‘Parental hope and decision-making in PPC’, and ‘Social and structural determinants of parental hope’) were presented in four conceptual diagrams.

conclusionsThe results reveal the preference of parents for honest encouragement over false hope. Furthermore, parents can use hope as a cognitive heuristic to influence their decision-making process. Parents also expect clinicians to understand their situation and help them manage their hopes while respecting parental authority. Ethical concerns include equitable access to support programmes and online groups that aid parental caregiving. We believe that the moral beliefs expressed by parents in our review could inform values and standards for parents as caregivers in PPC.