Background Since the first children’s hospice opened 41 years ago, 52 more children’s hospices have come into existence, aiming to ensure that children with life-limiting illness and their families can access care that is truly holistic, expert and seamlessly provided by a specialist multi-disciplinary team (Together for Short Lives, 2023). However, of the 3000 infants and children who die in England and Wales, 30% are infants and children who die suddenly and unexpectedly, not presenting with a life-limiting condition (Office for National Statistics. Child and infant mortality in England and Wales: 2020). By the nature of their death, these families are unlikely to benefit from the expert bereavement care children’s hospices provide. Bereavement outcomes are poor and mental illness rates are high (Dyregrov & Dyregrov. Death Stud. 1999, 23:635–661; Song, Mailick, Greenberg et al. Soc Sci Med. 2019, 239:112522; Prior, Fenger-Grøn, Davydow, et al. Psychol Med. 2018, 48:1437–1443; Stroebe, Schut, Stroebe. Lancet. 2007,8:1960–73). It is arguable that children’s hospices are unintentionally contributing to a health inequality for bereaved families, who have likely experienced a tragic and shocking death of their child.
Aim Determine if a children’s hospice is (or could be) adequately equipped to provide care for all families experiencing the death of a child.
Methods Literature review; mapping and gap analysis of local and national provision; exploratory scoping and interviews with services who have experience of traumatic grief; training needs analysis of hospice teams involved in bereavement care; assessment of team’s resilience and burn-out (Connor-Davidson Resilience Scale; Brief Resilience Scale; Oldenburg burnout inventory); modelling.
Conclusion Children’s hospice professionals have invaluable understanding of the needs of families living with grief; their services support families with mental health and bereavement outcomes. A careful, evidenced, and pragmatic approach to service development allows identification of readiness and necessary competence required to broaden remit to meet the specialist need of a new/different population. Thus, stark inequalities in access to bereavement care have been addressed for families experiencing sudden and unexpected death. Further research will follow to measure impact on bereavement outcomes.
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