Weighing Distress and Benefit: Understanding the Research Participation Experiences of Bereaved Parents of Children With Complex Chronic Conditions.

CONTEXT

Improving end-of-life care for children with complex chronic conditions (CCCs) requires parental perspectives. The vulnerability of bereaved parents has historically been a research barrier and studies describing their research participation experience are lacking.

OBJECTIVES

To examine the research participation experience of bereaved parents of children with CCCs and to identify factors associated with distress or benefit.

METHODS

In this cross-sectional study, parents of deceased children who received care at Boston Children's Hospital between 2006 and 2015 completed survey questions describing their research participation experience after completing the Survey About Caring for Children with CCCs. Multivariable logistic regression was used to identify factors associated with perceived distress or benefit with participation. Free responses were analyzed using qualitative techniques.

RESULTS

One hundred fourteen (54%) of 211 eligible parents completed the survey a median of 3.9 years (interquartile range, 2.1-6.5) after their child's death. Most parents felt comfortable (78%) and reported benefit (88%) from survey participation. Only 6% of parents reported "a great deal" of distress with participation, and of those, 67% still found it beneficial. Being at least moderately spiritual was associated with benefit (adjusted odds ratio 7.12 [95% CI: 1.58-32.1]), while parental decisional regret was associated with distress (adjusted odds ratio 3.41 [95% CI: 1.33-8.72]). Benefit was the most common domain identified, with parents expressing appreciation for the opportunity to help others and share their story.

CONCLUSION

A majority of parents responded to questions about their child's end-of-life care without significant distress. When present, distress was often accompanied by a perception that participation was beneficial.