Asking parents unaskable questions

Burnell, R. H.; O’Keefe, Maree

doi:10.1016/s0140-6736(04)16950-x

Cited by 20 publications

(20 citation statements)

References 7 publications

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“…However, the small sample size owing to the low response rate makes it difficult to generalise our results to all participants of stillbirth research. There were socio-demographic differences between cases and controls only in those who didn't respondent to the questionnaire, which is consistent with previous literature indicating that the socially disadvantaged are less likely to participate (Burnell and O'Keefe, 2004). It should also be noted that there were similar response rates for both cases and controls potentially indicating that the reasons for non-response are those common to surveys rather than secondary to emotional stress which would be predictably higher in bereaved participants.…”

Section: Strengths and Limitationssupporting

confidence: 86%

“…This is likely due to the altruistic motives for participating as well as the continued assurance that participants could withdraw at any point during the course of the study or questioning (Burnell and O'Keefe, 2004). Although the bereaved participants found the questions relating to 'What happened before the death of your baby?'…”

Section: Qualitative Commentsmentioning

confidence: 99%

“…Healthy, pregnant women are also perceived to be in a 'vulnerable' condition and are subject to the same sort of well-meaning protective behaviour (Wild, 2012). There is general uncertainty regarding recruitment methods and timing, and concern about intensifying distress or anxiety that does not result in direct benefit to the participants (Scott et al, 2002;Burnell and O'Keefe, 2004;Kreicbergs et al, 2004).…”

Section: Introductionmentioning

confidence: 99%

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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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Section: Strengths and Limitationssupporting

confidence: 86%

Section: Qualitative Commentsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Anxiety and acceptability related to participation in stillbirth research

2015

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“…The fact that the case interviews were longer suggests that case participants talked more than did the controls, perhaps because they believed they had more at stake in the interview or perhaps because they wanted to talk about their child. In an editorial 9 commenting on research that uses bereaved parents as informants, the importance of giving bereaved individuals multiple opportunities to refuse or cease participation was emphasized. In the present study, participants were given multiple opportunities to decline participation in the study interview.…”

Section: Commentmentioning

confidence: 99%

Participation of Next of Kin in Research Following Sudden, Unexpected Death of a Child

Taneja¹,

Brenner²,

Klinger³

et al. 2007

Arch Pediatr Adolesc Med

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Objective: To assess parents' perceptions of their experience being interviewed after the sudden, unexpected death of their child.Design: Case-control study in which cases were victims of unintentional drowning.Setting: Households of recent drowning victims in 6 states in the United States.Participants: Caregivers (primarily parents) of 87 cases and 491 matched controls were interviewed via telephone about their child.Main Exposure: Recent death of a child by unintentional drowning.Main Outcome Measures: Degree of stress related to interview, perception of interview length, and participants' views about their willingness to participate in this type of interview again, given their experience with the current interview.Results: Although case participants were more likely than controls to perceive the interview as somewhat or very stressful (odds ratio, 3.64; 95% confidence interval, 1.67-7.96), most of the case participants (87.2%) and controls (96.1%) perceived the interview to be not at all or a little stressful. A greater percentage of controls (37.8%) found the interview to be too long, compared with case participants (20.9%). Among case participants, perceived stress during the interview and the perceived length of the interview were not associated with willingness to participate again. Both of these associations were significant (PϽ.001) for controls.

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“…22,23 In their efforts to balance risks and benefits, institutional review boards (IRBs) and human research ethics committees (HRECs) scrutinize research protocols carefully or make approval dependent on strict exclusion criteria. 24 However, Emanuel and coworkers 25 found that terminally ill patients and their carers experienced little stress when discussing death and dying in an interview and reported that the interview was helpful. The authors argue that IRBs should not restrict research with patients and cares without clear evidence that it will be harmful.…”

Section: Introductionmentioning

confidence: 99%