Psychosocial outcomes of parents in pediatric haploidentical transplant: parental hematopoietic cell donation as a double-edged sword

Abstract

Parents are increasingly used as donors for their child's haploidentical hematopoietic cell transplant, creating a dual role for parents that may increase the stress of caring for their ill child. Empiric research on the psychological adjustment of parental donors is lacking. We conducted a retrospective survey of parents (n = 136) whose child underwent transplant with a parental donor or a matched-unrelated donor, including both donor and nondonors, and both parents of survivors and bereaved. All parents completed standardized measures of quality of life, depression, anxiety, post-traumatic stress, and life satisfaction. Bereaved parents also completed measures of their grief response, while parents of survivors completed measures of the parent-child relationship. The overall sample reported psychological functioning near normative levels, but bereaved parents demonstrated significantly poorer outcomes across all measures. The effect of donor status differed by transplant outcome: for parents of survivors, donors reported better mental health than nondonors, but amongst bereaved parents, donors fared more poorly than nondonors. Bereaved donors reported greater difficulties with grief than nondonors. Results suggest that serving as donor can be a double-edged sword, acting as a protective factor when there is a successful outcome but a significant risk factor when the child does not survive.

Figure 1.

Results of 2 (survivors/bereaved) X 2 (donor/non-donor) analysis of covariance on study outcomes. Horizontal lines represent normative expectations. a) PROMIS Mental Health T-score (higher scores = better mental health); b) PHQ8 (higher scores indicate greater depressive symptoms); c) PCL-5 (higher scores indicate greater symptoms of posttraumatic stress); d) SLS (higher scores indicate greater life satisfaction)

Figure 2.

Differences between donor and non-donor bereaved parents on grief symptoms. a) PG-13, horizontal line represents mean score of parents who lost a child to cancer 1 to 5 years previously. b) Brief Grief Questionnaire, horizontal line represents mean score from a large population based study of bereaved adults.