Does pediatric palliative care research really increase burden for parents?

Joanie Maynard

Featured Article: Steele, R., Cadell, S., Siden, H., Andrews, G., Smit Quosai, T. & Feichtinger, L. Impact of research participation on parents of seriously ill children. Journal of Palliative Medicine.

In the last few years, research in pediatric palliative care (PPC) has become more prominent in the literature, but institutional review boards are still offering little support to this type of research. The ethical arguments for and against research in PPC are great examples of the conflict between autonomy and beneficence. Parents understand the need for research in PPC and would welcome an opportunity to share their experience; yet, their voices are too often unheard because their child’s clinician is hesitant to introduce studies to them by fear of increasing burden. This paternalistic approach to medicine puts patients and their families’ autonomy at stake and also increases the gap in pediatric palliative care knowledge.

Concerns about research with vulnerable populations are unequivocally warranted. However, a recent article has shown that families with children who have a LTC experience positive effects from their participation in studies. Empowerment, catharsis and the sense of helping others were among the benefits of research participation. Yes, the experience of talking about a painful situation may exacerbate negative feelings for some parents, but this was only found in a small minority of participants, and often these parents expected such effects.

Although the arguments supporting the barriers to research in PPC are worth our consideration, we should not assume that participating in PPC studies will be too painful for parents. The clinicians’ role is to give parents enough information so they can make an informed decision about their participation in research. Parents have a voice of their own – please let them speak for themselves!