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 (P<.001) for controls.

Conclusions: Caregivers who chose to participate in the study generally rated their experiences as not very stressful. Most of the caregivers indicated that they would be willing to participate again in a similar study.