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

Abstract

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.

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

“…We were concerned that, by raising this difficult subject, we could cause emotional harm to parents who were already under great stress, and as a result we evaluated parents' experiences with participation. Consistent with previous research, however, distress levels were limited 11,14,15,27,28 ;…”

“…We were concerned that, by raising this difficult subject, we could cause emotional harm to parents who were already under great stress, and as a result we evaluated parents' experiences with participation. Consistent with previous research, however, distress levels were limited 11,14,15,27,28 ; only 1% of participating parents found the experience to be very distressing, and most reported no distress at all. Notably, parents indicated a dual nature to their experiences with the survey; even when parents experienced distress, they also often found personal value in participating in the study.…”

The Benefits and Burdens of Pediatric Palliative Care and End-of-Life Research: A Systematic Review

“…Study type included quantitative, 3,14–18 qualitative, 19–31 mixed methodology, 32–34 and literature review. 35 Study quality, as appraised by the MMAT score to assess bias and appraise quality across study formats, ranged from 50% to 100% with 8 studies rated at 100% and 7 at <70% (Table 1).…”

“…A total of nineteen studies reported parents' descriptions of their benefits and burdens related to participating in palliative care research. Of these, 19 studies included parent reports of benefits 3,14,16–19,21,22,24–29,31,32,34,35,37 and 18 studies reported burdens. 3,14,16–22,24–26,28,30–32,34,35…”

“…Of these, 19 studies included parent reports of benefits 3,14,16–19,21,22,24–29,31,32,34,35,37 and 18 studies reported burdens. 3,14,16–22,24–26,28,30–32,34,35…”