Is Participating in Psychological Research a Benefit, Burden, or Both for Medically Ill Youth and Their Caregivers?

Few data exist pertaining to the perceived burdens or benefits experienced by medically ill children from participating in psychological research, particularly in outpatient pediatric settings. As part of a larger study that involved completing self-report questionnaires, this study assessed whether participation in psychological research was burdensome, beneficial, or both to 271 youths (patients aged 7 to 21) undergoing treatment for cancer, neurofibromatosis type 1 (NF1), sickle cell, HIV, primary immune deficiencies, or Li Fraumeni syndrome and whether their caregivers experienced participation in the psychological study as a burden, benefit, or both. The majority of patients (83%) and their caregivers (93%) did not find participating burdensome. Moreover, the majority of patients (85%) and caregivers (95%) found at least some benefit to participation, including finding it helpful to be asked about issues that affect their life and feeling good about helping others. The data suggest that resistance, on the part of institutional review boards, for instance, to psychological research based on the belief that such research is intrusive and potentially harmful overestimates the negative aspects and potentially impedes progress in studying positive psychological and psychosocial outcomes in outpatient pediatric research.

Wiener L, Battles H, Zadeh S, and Pao M. Is participating in psychological research a benefit, burden, or both for medically ill youth and their caregivers? IRB: Ethics & Human Research 2015;37(6):1-8.