Children’s understanding of dying and death: A multinational grounded theory study

Categories: Featured and Research.

A study on children’s understanding of dying and death was published on 24 March 2023. The study aimed to understand how children process dying and death in 3 cultural contexts to ensure that children’s palliative care (CPC) services can meet the needs of children and families in culturally competent ways. The ways in which children with life-limiting conditions and their siblings understand dying and death remains poorly understood. Most studies explaining children’s understanding of dying and death report the perspective of surviving, bereaved parents, hence the importance of this study. The research was conducted in Uganda, Haiti, and the USA.

In 2015, the International Children’s Palliative Care Network (ICPCN) conducted a Delphi study with 758 international, multidisciplinary members from 52 countries identifying priorities for global research into CPC. Of the 70 research areas presented to respondents, the need for research into “children’s understanding of death and dying” emerged as the top priority, illustrating both the urgency with which CPC providers require better evidence to guide care for seriously ill children and the continued silence of the affected child’s voice. This study was conceived at the African Palliative Care Association conference research workshop in Namibia in 2010. The protocol was then developed by the ICPCN team and the study was undertaken in collaboration with a range of organisations including the University of Washington, Akron Children’s Hospital, Kent State University, Makerere/Mulago Palliative Care Unit, The University of Edinburgh, Saint Semien Pediatric Hospital, and Northeast Ohio Medical University. ICPCN is happy to share the protocol with others who would like to undertake a similar study.

Within the study, loss emerged as a central theme, with loss of others and loss of normalcy emerging as subcategories described by the children who participated in the research.

“Culturally distinct differences were identified. Haitian children were more likely to witness another child’s death because they were hospitalized in larger wards and therefore nearby when a child died. Although witnessing another ill child’s death was not distressful for all participants, most described the experience as “sad,” “uncomfortable,” or “scary.” Ugandan children were more likely to experience the serious illness or death of a parent. An 8-year-old Ugandan girl recounted her father’s death from 3 years earlier: “My father died when I was five years old, many people come and he was buried in the soil. People were crying and I also started crying but my Aunt took me away at that time. He died because of sickness – of HIV.” American children typically described the loss of family elders (e.g., grandparents) and saw their deaths as expected with statements like, “because he was old” (9-year-old US male) or “she was sick and she was old … she looked peaceful so it wasn’t as hard” (14-year-old US female).” (p2-3)

Losses of normalcy included the loss of health, school, time with friends, and activities. Perceived loss of health often led to other types of loss, such as for a 15-year-old Haitian male who could not play soccer “… when I was sick.”

Data showed that the process between loss and altruism was bidirectional. Altruism influenced how loss was experienced by children wanting to do good deeds for others despite their own loss. Altruism and anticipated death were evident in a 15-year-old Haitian male who witnessed another child’s death. Rather than focusing on himself during the stressful time, he opted to say a prayer of protection for the other children as well.

Data also showed that the process between loss and spirituality was bidirectional. Spirituality influenced how loss was experienced when spiritual beliefs provided comfort for loss. Spirituality influenced how a 9-year-old Haitian boy anticipated death when asked to explain what it was like to see another child die. He admitted that seeing the deceased child was “… hard and frightening,” but he used his belief in prayer to help: “So when I see that kid die in front of me, I pray to God to get me out of the hospital so I can get healed.”

ICPCN’s Chief Executive Prof Julia Downing commented “It is exciting to see this study come to publication – the development of the protocol was a collaborative process and we are pleased that we have been able to undertake this study in three very different settings. As we plan our children’s palliative care services it is important to understand how children process, death, dying, and bereavement from their own perspectives and lived experiences, so that we can ensure that our services meet the needs of the children we care for.”

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