Harmful or Helpful? A Systematic Review of How Those Bereaved Through Suicide Experience Research Participation

Abstract

Background: Many of the bereaved through suicide are interested in participating in postvention studies. However, there is a contradiction between the positive experiences of research participation and concerns raised by ethical boards.

Aims: To review studies on the experience of research participation by those bereaved through suicide, including initial contact with the study and its short- and long-term impacts.

Method: Systematic searches in Embase, Medline, PsycINFO, as well as Google Scholar identified 12 papers reporting on 11 studies.

Results: The majority (73-100%) of study participants evaluated participation positively, and would recommend it to others (90-100%), as it was related to altruism, social support, and personal growth. A minority experienced participation as negative (2-10%) or upsetting (5-22%) due to feelings of guilt or painful memories. However, having a painful experience does not preclude seeing it as helpful.

Limitations: Most studies concerned face-to-face psychological autopsy studies, and only two studies included a control group.

Conclusion: Research applying standardized measures may enhance our understanding of the factors germane to (non-)participation and to the likelihood of a positive/negative research experience. Vigilant recruitment and providing optimum care for participants are indicated. Further research may continue to improve participant safety and the research design of suicide bereavement studies.

Keywords: bereavement; postvention; research participation; research subjects; suicide.