“It Can Be Hard But It’s Not Bad”: Three Questions to Solicit Caregiver Perceptions of Benefits and Burdens to Participating in Pediatric Palliative Care Research

Abstract

Background: To allay uneasiness among clinicians and institutional review board members about pediatric palliative care research and to yield new knowledge relevant to study methods, documenting burdens and benefits of this research on children and their families is essential.Design: In a grounded theory study with three data points (T1, T2, and T3), we evaluated benefits and burdens of family caregiver participation at T3. English-speaking caregivers participating in palliative or end-of-life decisions for their child with incurable cancer or their seriously ill child in the intensive care unit participated. Thirty-seven caregivers (n = 22 from oncology; n = 15 from intensive care) of 33 children completed T3 interviews; most were mothers (n = 25, 67.6%), African American (n = 18, 48.6%), and married (n = 28, 75.7%).Measurement: Benefits and burdens were assessed by three open-ended questions asked by an interviewer during a scheduled telephone contact. Responses were analyzed using descriptive semantic content analysis techniques and themes were extracted.Results: All 37 T3 participants completed the 3 questions, resulting in no missing data. The most frequently reported themes were of positive personal impact: “Hoping to help others,” “Speaking about what is hard is important,” and “Being in the study was sometimes hard but not bad.”Conclusions: No caregiver described the study as burdensome. Some acknowledged that answering the questions could evoke sad memories, but highlighted benefits for self and others. Attrition somewhat tempers the emphasis on benefits. Documenting perceived benefits and burdens in a standardized manner may accurately convey impact of study participation and yield new knowledge.