Participation in Online Research Examining End-of-Life Experiences: Is It Beneficial,Burdensome,or Both for Parents Bereaved by Childhood Cancer?

It is important for the health care community to understand the impact of a child’s death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child’s end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least “a little benefit” and half reported at least “a little burden” associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children’s emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.