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

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.