Dredging up past traumas: Harmful or helpful?

Brabin, Penny; Berah, Ellen

doi:10.1080/13218719509524863

Cited by 35 publications

(35 citation statements)

References 11 publications

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“…Brabin and Berah (1995) interviewed 417 parents of stillborn children, concluding with two questions: "Did you find that talking about your baby now was distressing?" and "Do you think that talking about your baby now has been helpful or unhelpful in some way?"…”

Section: Concern 5: Asking About Abuse Exposes Participants To Unusuamentioning

confidence: 99%

Research participants telling the truth about their lives: The ethics of asking and not asking about abuse.

Becker‐Blease¹,

Freyd²

2006

American Psychologist

229

167

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Section: Concern 5: Asking About Abuse Exposes Participants To Unusuamentioning

confidence: 99%

Research participants telling the truth about their lives: The ethics of asking and not asking about abuse.

Becker‐Blease¹,

Freyd²

2006

American Psychologist

229

167

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“…Review boards tend to be more conservative in judging harm than researchers and even participants, 2 who offer a more nuanced perspective. Although participants may experience distress and anxiety due to studies about medical experiences, [3][4][5] research participation is also perceived as therapeutic or empowering [6][7][8][9][10][11] and an opportunity to help others in the same situation. 7,12,13 Even participants who express feelings of distress often state that they would take part in a study again.…”

Section: Introductionmentioning

confidence: 99%

Research Participation Experiences of Parents of Children with Cancer Who Were Asked about their Child's Prognosis

Olcese

Mack²

2012

Journal of Palliative Medicine

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Background: In questionnaire-based research, human subject protection committees must assess the emotional impact of the study on participants. Without clear data about the risks and benefits of participating in such studies, however, review board members must use personal judgment to assess emotional harm. Objective: To examine experiences of distress and value of participation in a study of prognosis communication among parents of children with cancer, and to identify factors associated with predominantly distressing research experiences. Methods: We surveyed 194 parents of children with cancer (overall response rate, 70%), treated at the DanaFarber Cancer Institute and Children's Hospital, Boston, Mass, in the first year after the child's cancer diagnosis. The survey focused on the child's prognosis and parent-physician communication; at the end, we asked parents how distressing and how useful completing the survey had been to them personally. Results: Only 1% of parents found research participation to be ''very'' distressing. The majority of parents were ''not at all'' distressed by participating (62%), and most reported that the questionnaire was at least ''a little'' useful to them personally (69%). Overall, 18% of parents gave higher ratings for distress than for utility. Parents were more likely to experience research participation as predominantly distressing when they found prognostic information to be upsetting (odds ratio [OR] 5.38, p = 0.005).

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“…On the contrary, the qualitative results suggest that many of the bereaved parents felt 'empowered' and grateful to describe their experience. Others have also suggested that there are positive benefits for bereaved parents when they are able to recount their experience with an interested and engaged researcher (Buckle et al, 2010;Brabin and Berah, 1995). This was also anecdotally observed by our research team, who reported that engagement by the hospital staff improved over time and they became more receptive to contacting the team about eligible participants as they witnessed the positive responses by the participants.…”

Section: Qualitative Commentsmentioning

confidence: 62%

“…The time since the loss in these studies varied from less than one month to nearly 10 years. The only study which included parents of stillborn babies were interviewed between three and just over nine years after the loss (Brabin and Berah, 1995). Contrary to the concerns commonly expressed about bereavement research, all of these studies indicate a positive response by the majority of participants as a result of their involvement.…”

Section: Introductionmentioning

confidence: 99%

Anxiety and acceptability related to participation in stillbirth research

2015

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a b s t r a c tBackground: stillbirth research is often hampered by the need to 'protect' both bereaved families as well as healthy pregnant women from distress resulting from recruitment by research staff. No studies have investigated anxiety levels of recently bereaved or healthy pregnant women participating in stillbirth research. The aim of this study was to assess anxiety levels and acceptability of women participating in a stillbirth case-control study. Method: a follow-up questionnaire was posted to all participants of the Sydney Stillbirth Study in 2012. The questionnaire assessed the anxiety level experienced by women as a result of their participation in the study. Questions related to the initial approach of the research staff; level of anxiety at time of consent and after the interview; and reasons for and satisfaction with participation. The Spielberger (STAI-6) anxiety scale and open-field responses were included. Results: 35/103 case participants and 65/192 control participants returned the completed questionnaire. The majority participated for altruistic reasons. 20/35 (cases) and 58/65 (controls) stated they disagreed/ strongly disagreed that participation in the study increased their anxiety. 1 in 5 cases reported that participation in the study increased their anxiety; however this did not affect their satisfaction. Timing of interview did not affect anxiety scale responses. (F ¼1.2; p ¼0.37) 30/35 (cases) and 63/65 (controls) stated they agreed/strongly agreed that they were satisfied participating in the study. Conclusions: these findings suggest high levels of satisfaction amongst both case and control participants and no statistically significant increase in anxiety related to involvement in stillbirth research. 'Protecting' families may require further justification.

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Dredging up past traumas: Harmful or helpful?

Cited by 35 publications

References 11 publications

Research participants telling the truth about their lives: The ethics of asking and not asking about abuse.

Research participants telling the truth about their lives: The ethics of asking and not asking about abuse.

Research Participation Experiences of Parents of Children with Cancer Who Were Asked about their Child's Prognosis

Anxiety and acceptability related to participation in stillbirth research

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