Engaging Parents of Children Who Died From Cancer in Research on the Early Grief Experience

Abstract

Context: Bereaved parents provide an important perspective for improving care for patients and families throughout the illness and after a child's death. However, involvement of bereaved parents in research studies is fraught with concerns over inflicting psychological distress and issues with study recruitment. Data on research strategies to engage parents early in their bereavement are limited.

Objectives: To describe involvement of bereaved parents in the development of a comprehensive survey, examine the response rates with varying recruitment strategies and describe participation experiences of parent participants.

Methods: Parents of children who endured the death of their child from cancer six to 24 months prior were invited to complete a 195-item survey examining their early grief experience.

Results: Forty-nine of the 137 eligible parents from 36 different households completed the survey (response rate 36%). The respondents were predominantly white (N = 43; 88%), female (N = 32; 65%), and non-Hispanic (N = 43; 88%). The median length of time from child's death to survey completion was 11 months (range 7-26). Thirty parents (61%) indicated they were comfortable/very comfortable answering the survey, 40 (82%) answered that they experienced at least a little benefit from involvement, and 36 (73%) indicated they experienced at least some distress.

Conclusion: Some parents of children who died of cancer are willing to participate in research early in their bereavement, and although most experience some distress, they are comfortable answering questions about their experience and benefit from participation. Recruitment strategies including personal outreach may result in better response rates.

Keywords: Grief; bereaved parents; bereavement; pediatric cancer.