Ethical Issues in the Study of Bereavement: the Opinions of Bereaved Adults

Abstract

Few studies examine ethical issues in bereavement research and none survey the opinions of bereaved individuals who have not previously participated in bereavement research. This study examined the theoretical opinions of bereaved adults about ethical issues such as attitudes toward bereavement research, timing and methods of recruitment, and competency to consent. Participants felt positively about bereavement research, although opinions about timing and method of recruitment were varied. The results also suggest that bereaved individuals should be considered competent to consent to bereavement research participation. Conclusions may guide bereavement researchers and research ethics boards in the design and review of bereavement studies.

Anxiety and acceptability related to participation in stillbirth research

“…Discerning between the emotional response to grief and the competency to understand the nature of the study with its potential risks and benefits was an important factor. A large majority of the participants in that study (85.7%) reported that they were able to make an informed decision to consent soon after the death (Beck and Konnert, 2007). This correlates with the number of participants who consented to the Sydney Stillbirth Study.…”

“…A previous study highlights the discrepancies among researchers and even the bereaved themselves as to what constitutes the most appropriate time to approach for consent (Beck and Konnert, 2007). Discerning between the emotional response to grief and the competency to understand the nature of the study with its potential risks and benefits was an important factor.…”

“…Despite this, there is little empirical work examining the responses of bereaved individuals to participation in research (Beck and Konnert, 2007 have done so include bereaved participants who had experienced the loss of a parent, spouse or other family member (Cook, 1995;Buckle et al, 2010), the loss of a child or other family member due to cancer (Seamark et al, 2000;Scott et al, 2002;Kreicbergs et al, 2004), parents who lost their child through Sudden Infant Death Syndrome, suicides or accidents (Dyregrov, 2004), and parents who lost their child through a chronic progressive condition (Hynson et al, 2006). One study that recruited via on-line grief support groups examined the theoretical opinions of bereaved adults regarding ethical issues in bereavement research, however only six of the 316 respondents had previously participated in a research project (Beck and Konnert, 2007). The time since the loss in these studies varied from less than one month to nearly 10 years.…”

Conducting ethical internet-based research with vulnerable populations: a qualitative study of bereaved participants’ experiences of online questionnaires

“…As such, bereaved individuals have been classified as a vulnerable group (Koffman, Morgan, Edmonds, Speck, & Higginson, 2009; Steeves, Kahn, Ropka, & Wise, 2001), raising concerns among those overseeing research studies that asking questions about loss might elevate distress and introduce risks that outweigh the benefits of research participation (see Dyregrov, 2004; Kreicbergs, Valdimarsdóttir, Steineck, & Henter, 2004). Despite this concern, there is growing evidence that bereaved individuals find participating in research a useful experience with the potential to benefit others in similar situations (Beck & Konnert, 2007; Cook & Bosley, 1995; Koffman et al, 2012), and guidelines have been developed to support this process (e.g. Parkes, 1995).…”

Parents Who Have Lost a Child to Cancer: What Do They Really Need?

“…A broader international literature aims at capturing berefts' experience, trying to make their voice heard. In order to ensuring respect ethical imperatives while conducting bereavement research, authors suggested to favour qualitative studies with indepth interviews (Beck & Konnert, 2007;Dyregrov, 2004;Hynson et al, 2006). Qualitative methodology allows addressing experimental themes while giving possibility for bereaved parents to make sense of their loss.…”