Places of farewell – decisions made by bereaved parents regarding the place of death of a toddler

This week’s blog is by Gilda DavisPhD student and senior lecturer in pediatric nursing on the University of Worcester @worcester_uni @uow_TCSNM with the support of his supervisory team: Professor Kerry Gaskin @GaskinKerry, Professor Győző Molnár @GyozoMolnar i Dr. Jackie Bentley. This blog summarizes preliminary findings regarding bereaved parents’ decision-making regarding where their child dies.

The variety of investigations into where children are expected to die varies depending on the diagnosis. For a toddler with a cancer diagnosis, there’s a longtime body of evidence, but for youngsters with a life-limiting illness, the evidence is more limited (Duc, Herbert, and Heussler 2017; Johnston et al 2020). My doctoral thesis is an ethnophenomenological study, the aim of which was to investigate the selection of place of death of a toddler with a non-oncological life-limiting or life-threatening disease, using the stories of bereaved parents.

Using kid’s hospices as gatekeepers (to supply support to oldsters), eight parents (one interview included each parents) and roughly eight children (one mother talked in regards to the death of two of her children) were interviewed in seven interviews. The kids’s ages ranged from 11 hours to 16 years, and the time between death and interview ranged from 11 months to 11 years and 9 months. I didn’t expect to incorporate a toddler who died 11 years ago, nonetheless, after I met with the mother to discuss her son who died the 12 months before, she recognized me from 11 years ago after I was involved in her daughter’s end-of-career health care. Her positive experiences during that point had a big impact on the completely different experiences she had along with her son.

The info collected were descriptive in nature. Although a semi-structured approach was used and an interview guide was developed to prompt me as needed, all parents were asked the identical starting query: ‘tell me about name“. This allowed the parent sharing their story to regulate the narrative, so some parents began their story with pregnancy and others with diagnosis or diagnostic journey. As a part of the narrative, parents were also asked in the event that they had items they would really like to share. Items shared included toys, clothing, paintings and crematorium coffins.

Data were analyzed using the MIRACLE narrative framework (Younas et al 2023) and Labov’s six-part model of narrative evaluation (Labov 1972). Reflective thematic evaluation highlighted themes (Braun and Clarke 2022), which were then considered within the context of liminality using Van Gennep’s Rites of Passage model (Van Gennep 2019).

Despite different age groups and times since death, the themes were similar and a few of them will probably be familiar to any palliative care nurse (Table 1):

Table 1 Themes and examples

Although there was a difference within the place chosen for death and the actual place of death (only two children died at their chosen place), the explanations for this were complex and included staff fear of moving the kid; staff fear that the kid may die in transit; staff concerns that Covid restrictions mean children can’t be moved; the parents didn’t consider that their child was dying because they (the kid) had presented this fashion before and had recovered. Within the case of 1 family, the mother wanted her daughter’s place of death to be in a hospice, and her daughter desired to be at home (she died at home). The mother was pleased that her daughter could die where she wanted, however the mother remains to be struggling to live in the home where her daughter died, although she renovated and replaced the furniture (we dated 2 years and 5 months after her daughter’s death).

Within the case of 4 families who selected hospice but died within the hospital, the importance of the place of the kid’s death ceased to be a goal and have become a part of the journey and the chance to spend time as a family within the hospice (using the hospice cold room for the deceased child) ).

The implications of the outcomes of this study have implications for clinical staff conversations with children, parents, and families, where not only their preferred place of death is discussed, but in addition end-of-life care, taking into consideration the needs and concerns of families, while also managing expectations. Other implications for practice include how the consequence of those conversations impacts the parent’s grief journey.

The study results were presented in the shape of a poster on the RCN International Research Conference @RCNResForum and the Association of Pediatric Palliative Medicine last 12 months, and is currently preparing for Gilda’s master’s thesis.

Bibliography:

Braun V and Clarke V (2022) Thematic evaluation: a practical guide Sage, London

Duc J, Herbert A and Heussler H (2017) Pediatric palliative care and mental disability – a singular context Journal of Applied Research in Mental Disability 30 pages 1111-1123 DOI:10.1111/jar.12389

Johnston E et al (2020) Hospital or home? Where should children die and the way can we make this a reality? Journal of Pain and Symptoms Management 60(1) pp.106-115 DOI:10.1016/j.jpainsymman.2019.12.370

Labov W (1972) Language within the inner city: Black English studies University of Pennsylvania Press, Philadelphia

Van Gennep A. (2019) Rites of passage 2^II ed. Chicago, University of Chicago Press

Younas A et al (2023) Proposing a “MIRACLE” Narrative Framework for Ensuring Thick Description in Qualitative Research International journal of qualitative methods 22 pp. 1–13 DOI: 10.1177/16094069221147162

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