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

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