Research with bereaved parents: a question of how not why

Abstract

Background: There is tension around the notion of research with bereaved parents. While it is recognised that the care of children with palliative care needs will only improve with better understanding of parent perspectives, the vulnerability of bereaved parents is equally recognised as a challenge to ethical research. An emerging literature suggests that research can be safely and ethically conducted with bereaved families, if performed sensitively. However, little is known about what research processes might enhance ethical research practice in this field. Aim: To explore the impact of the research process on bereaved parents, and to identify what elements enhance the experience of research participation. Methods: This qualitative study used in-depth interview techniques with the bereaved parents of children who had died from a range of conditions. Results: Interviews took place with 69 parents from 45 eligible families (70% of 64 selected eligible families) of children who had died from a range of chronic conditions. All participants considered the timing and nature of the initial approach by the researchers to be appropriate. The experience for parents was reported to be enhanced by the sensitivity of the initial approach. The use of in-depth qualitative interviews promoted parent empowerment through determining both pace and content of interviews. Although the majority of parents primarily chose to participate for altruistic reasons, many described the research process as personally beneficial. Conclusion: Participating in research was viewed positively by these bereaved parents. Careful attention to the research process in terms of timing, approach and the interviewer’s skills were key elements that underpinned a positive experience. The skilled utilisation of in-depth interviewing techniques was perceived to enhance ethical research practice.