Experiences of preparing children for a death of an important adult during the COVID-19 pandemic : a mixed methods study

Rapa, Elizabeth and Hanna, Jeffrey R. and Mayland, Catriona R. and Mason, Stephen and Moltrecht, Bettina and Dalton, Louise J. (2021) Experiences of preparing children for a death of an important adult during the COVID-19 pandemic : a mixed methods study. BMJ Open, 11 (8). e053099. ISSN 2044-6055 (https://doi.org/10.1136/bmjopen-2021-053099)

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Abstract

Objective The objectives of this study were to investigate how families prepared children for the death of a significant adult, and how health and social care professionals provided psychosocial support to families about a relative’s death during the COVID-19 pandemic. Design/setting A mixed methods design; an observational survey with health and social care professionals and relatives bereaved during the COVID-19 pandemic in the UK, and in-depth interviews with bereaved relatives and professionals were conducted. Data were analysed thematically. Participants A total of 623 participants completed the survey and interviews were conducted with 19 bereaved relatives and 16 professionals. Results Many children were not prepared for a death of an important adult during the pandemic. Obstacles to preparing children included families’ lack of understanding about their relative’s declining health; parental belief that not telling children was protecting them from becoming upset; and parents’ uncertainty about how best to prepare their children for the death. Only 10.2% (n=11) of relatives reported professionals asked them about their deceased relative’s relationships with children. This contrasts with 68.5% (n=72) of professionals who reported that the healthcare team asked about patient’s relationships with children. Professionals did not provide families with psychosocial support to facilitate preparation, and resources were less available or inappropriate for families during the pandemic. Three themes were identified: (1) obstacles to telling children a significant adult is going to die, (2) professionals’ role in helping families to prepare children for the death of a significant adult during the pandemic, and (3) how families prepare children for the death of a significant adult. Conclusions Professionals need to: provide clear and honest communication about a poor prognosis; start a conversation with families about the dying patient’s significant relationships with children; and reassure families that telling children someone close to them is dying is beneficial for their longer term psychological adjustment.

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