Research in practice

Involving bereaved parents in research design can be a positive and mutually beneficial experience

Tara Kerr-Elliott’s interviews with bereaved parents influenced a proposed study exploring post-death care

Tara Kerr-Elliott’s interviews with bereaved parents influenced a proposed study exploring post-death care


Picture: iStock

 

Historically, researchers and ethics committees have been hesitant to approve interviewing bereaved parents in research because of concerns about causing harm or exacerbating grief. However, there is growing evidence that it can be a positive experience for parents, allowing them the opportunity to reflect, remember their child and help improve the experience of subsequent bereaved families (Hadjistavropoulos and Smythe 2001, Donovan et al 2019).

There have also been suggestions that it is unethical not to involve bereaved parents in research (Hynson et al 2006). As the aim of the planned study is to influence service provision for bereaved families, the author extends the same argument to patient and public involvement (PPI). PPI is defined as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them’ (NIHR INVOLVE 2012). 

It was considered crucial that bereaved parents should be involved in influencing the project from research design through to dissemination and impact, and not just as participants providing data. However, involving bereaved parents in PPI has its challenges, and opinions on how to conduct this type of research have been largely absent, with a limited number of published studies (Butler et al 2018).

Methods

Nine parents were consulted (four mothers, one father and two couples), whose child had died between three months and 12 years previously. Of the six deceased children represented, two had been cared for in a hospital mortuary, two in a bereavement suite in a children’s hospice and two at home. The parents were given the option of meeting in any location. One couple and one mother chose their own home, one mother opted for a coffee shop, and the remaining parents asked to come to the hospital where the researcher works. They were asked to comment on issues including relevance of the research, ethical issues, when and how to contact bereaved parents to invite them to participate in the research, how to support them during and after interviews, and how they would like to see services developed. 

There appeared to be no difference in the ability of parents who had been bereaved for different lengths of time to recall details of their child’s post-death care. In fact, the longest and most outwardly emotional interview was with a mother whose baby had died 12 years before.

Reflections

Eliciting the parents’ views was not difficult, although this may have been because they all knew the researcher to some extent and were a self-selecting group and volunteered their support. This represents a significant contrast to the PPI work and the interviews that will take place as part of the project. However, it also supports evidence suggesting that, despite being emotionally difficult or even costly, bereaved parents are often eager to participate in research activities (Butler et al 2018).

With one exception, the interviews took significantly longer than had been anticipated. The parents appeared to share the same need to ‘tell their child’s story’ from the beginning, rather than being able to focus solely on their experience of post-death care.

Conclusion

This topic has the potential to cause emotional distress for parents and the researcher. In this instance, the researcher is an experienced nurse with many years of experience working in this specialty. However, it is important to consider the need to provide follow-up support to parents, and debriefing for researchers, if required. 

References


About the author

Tara Kerr-Elliott is a WellChild clinical nurse specialist and practice educator, Great Ormond Street Hospital for Children NHS Foundation Trust, London.
She wrote this article on behalf of the RCN’s Research in Child Health community

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