This week’s blog is by Gilda Davis, PhD Student and Senior Lecturer in Children’s Nursing, University of Worcester @worcester_uni @uow_TCSNM with support from her Supervisory team: Professor Kerry Gaskin @GaskinKerry, Professor Győző Molnár @GyozoMolnar and Dr Jackie Bentley. This blog provides a summary of preliminary findings regarding bereaved parents’ decision making about their child’s place of death.
Research that considers the place of death of children where death is expected, varies in number depending on diagnosis. Where the child has an oncology diagnosis, there is an established body of evidence, but for children with a life limiting condition, the evidence is more limited (Duc, Herbert and Heussler 2017; Johnston et al 2020). My doctoral research is an ethnophenomenological study, that has explored the choice of place for the death of a child with a non-oncological life limiting or life-threatening condition, using the stories of the bereaved parents.
Using children’s hospices as gate keepers (to ensure support for the parents), eight parents were interviewed in seven interviews (one interview involved both parents), about eight children (one mother spoke about the deaths of two of her children). The ages of the children 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 had not expected to include a child who had died 11 years ago, however when I met the mother to talk about her son who had died the previous year, she recognised me from 11 years ago when I had been involved with her daughter’s end of life care. Her positive experience from then impacted heavily on the very different experience she had with her son.
The data collected was narrative. Whilst a semi-structured approach was used, with an interview guide devised to prompt me if required, the parents were all asked the same starting question – “tell me about name”. This allowed the narrative to be controlled by the parent sharing their story, so some parents started their story with the pregnancy and others with the diagnosis or diagnostic journey. As part of their narrative parents were also asked if they had objects that they wished to share. Items shared included toys, clothing, pictures and crematorium caskets.
The data was analysed using the MIRACLE narrative framework (Younas et al 2023), and Labov’s six part narrative analysis model (Labov 1972). Reflexive Thematic Analysis 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 the range of ages and times since death, a commonality of themes was present, some of which will be familiar to any palliative care nurse (Table 1):
Table 1 Themes and examples
|Examples of code
|Importance of the place of death
|Experiences of death; less important when moved to preferred place after death.
|Home as a safe place
|Choice of place to die (two participants knew this was the choice of their children); Anxieties if child died at home (symptom management; access to services); “forever home” (scattering ashes)
|Feeling of community
|Support from family / extended family & friends / religious / professional; no support.
|The feeling of physicality
|Smell (of child’s clothing); weight (of child in arms, on lap)
|The importance of names
|Meaning of name; changing name to suit personality
|The feeling of continued presence
|Spirituality; symbols; dreams
|Importance of visual narrative
|The importance of legacy
|Social media; awards; talking about child
|Feelings of guilt
|Surgical and medical procedures
|Gender of participants
|Mothers; male role to support (fathers & adolescent sons); main carer of child
Whilst there was a difference in the place chosen to die and the actual place of death (just two children died in their place of choice), the reasons for this were complex, and included staff anxiety about transferring a child; staff anxiety that the child could die in transit; staff concern that Covid restrictions meant that children couldn’t be transferred; parents not believing that their child was dying as they (the child) had presented like this before and had recovered. For one family, the mother wanted her daughter’s place of death to be the hospice, but the daughter wanted to be at home (she died at home). The mother was pleased that her daughter was able to die where she wanted to be, however the mother continues to struggle to live in the house where her daughter died, despite having redecorated and changed the furniture (we met 2 years and 5 months after her daughter’s death).
For four of the families whose chosen place was a hospice, but where death occurred in hospital, the importance of the place of where the child died moved from being the aim, to being part of the journey, and being able to spend time as a family at a hospice (using a hospice cold bedroom for the child who had died) became the focus.
The implications of the findings of this study impact on the conversations clinical staff have with children, parents and families, when discussing not only their preferred place to die, but also their end of life care, considering the needs and concerns of the families, whilst also managing expectations. Other implications for practice include how the outcome of these conversations can impact on the grief journey of the parent.
This research has been shared as a poster at both the RCN International Research Conference @RCNResForum and the Association of Paediatric Palliative Medicine Conference in the past year, and is currently being written up for Gilda’s thesis.
Braun V and Clarke V (2022) Thematic Analysis: a practical guide Sage, London
Duc J, Herbert A and Heussler H (2017) Paediatric palliaitve care and intellectual disability – a unique context Journal of Apllied Research in Intellectual Disabilities 30 pp1111-1123 DOI:10.1111/jar.12389
Johnston E et al (2020) Hospital or home? Where should children die and how do we make that a reality? Journal of Pain and Symptom Management 60(1) pp106-115 DOI:10.1016/j.jpainsymman.2019.12.370
Labov W (1972) Language in the Inner City: Studies in the Black English Vernacular University of Pennsylvania Press, Philadelphia
Van Gennep A (2019) The Rites of Passage 2nd edn. Chicago, University of Chicago Press
Younas A et al (2023) Proposing the “MIRACLE” narrative framework for providing thick description in qualitative research International Journal of Qualitative Methods 22 pp1-13 DOI:10.1177/16094069221147162