A series of multi-institutional studies examined psychological distress and coping in mothers of children undergoing HSCT (DuHamel et al., 2007; Manne et al., 2004; Rini et al., 2004). Acute and long-term psychological distress associated with caring for a child undergoing HSCT may negatively affect parent health; however, there are no published studies of physical health outcomes of parents in the pediatric HSCT setting. Studies of other chronic or life-threatening pediatric conditions have found adverse parental physical health outcomes (Brehaut et al., 2009; Miodrag, Burke, Tanner-Smith, & Hodapp, 2015).
Objective: To describe the prevalence of adverse parental psychological and physical health outcomes and their association with perceived stress in parents of children one to 10 years post-allogeneic HSCT.
Methods: This longitudinal study was conducted at a children’s hospital in the western United States. English and Spanish-speaking parents of children who underwent allogeneic HSCT between 2005 and 2015 were eligible. Child underlying diagnoses included malignancy, immune deficiency or hemoglobinopathy. Parents were excluded from the study if they had a history of serious psychiatric or medical illness that preceded their child’s transplant as determined by review of their health history questionnaires. Parents were also excluded if their child had a history of solid organ transplantation or more than one stem cell transplant, or if they were unable to speak and read either English or Spanish. Finally, parents were excluded if they had multiple children who received HSCT. Outcome measures included: Demographic, Lifestyle & Health Questionnaire, Beck Anxiety Inventory (BAI) and Beck Depression Inventory-II (BDI-II), Perceived Stress and Parent Stress Scales, Physical Symptom Inventory, and Short-Form 36 (SF36) version 2. Parents were divided into two groups for comparison purposes. Group 1 consisted of parents of children who underwent HSCT within the past one to 4.99 years (short-term effects). Group 2 consisted of parents of children who underwent HSCT within the past five to ten years (long-term effects).
Results: Fifty-four mothers and seven fathers (n=61) were enrolled. The two groups were similar on most variables with the exception of race, marital status, and household income (p values < .02). Sixty-one percent of parents in group 1 were Hispanic and 24% were African American compared to 36 % and 11% in group 2, respectively. Parents in group 1 were more likely to be single, separated or divorced, and reported significantly less household income than parents in group 2. Parents in the study group had higher, but not statistically significant, Perceived Stress scores compared to the normative mean. Conversely, parents in the study group had significantly lower Parental Stress scores compared to the normative mean (p < .001).
Parents of children who survived allogeneic HSCT tended to have higher, but not statistically significant, BAI and BDI-II scores compared to the respective normative means. Twenty percent of parents in the study group reported moderate (clinically relevant) levels of anxiety. Seven parents in total (11.5%) reported having thoughts of suicide with no plans to carry them out, and 23% of the parents sampled reported moderate depression.
Parents in the study group reported significantly lower SF36 mental health compared to the normative mean (p = .003). Social functioning scores were also lower for parents in the study group compared to the normative mean, however this difference was not statistically significant. Small, negative effect sizes were observed for social functioning (ES = -0.22) and mental health (ES = -0.40).
Parents in group 1 reported higher perceived stress compared to parents in group 2, although this difference was not statistically significant. Parent stress did not differ between parent group assignments. Parents in group 1 reported higher, but not statistically significant, anxiety, compared to parents in group 2. Depression scores did not differ based on group assignment. Social functioning, role emotional, and mental health scores were lower for parents in group 1 compared to parents in group 2.
In terms of healthy lifestyle factors, more parents in group 2 (68%) reported regular exercise compared to parents in group 1 (42%); p = .047. Physical Symptom Have scores (the presence of physical symptoms) for parents in the study group were lower than the normative mean (p = .034). Short-Form 36 physical functioning scores were significantly higher (indicating less disability) for parents in the study group compared to the normative mean (p = .010). In terms of well-being, General Health and Vitality scores did not differ between the normative mean and parents in the study group.
Parents in group 1 reported more physical symptoms than parents in group 2. Physical functioning, role physical and bodily pain scores were lower for parents in group 1 compared to parents in group 2, although these differences were not statistically significant. General Health scores were significantly lower for parents in group 1 compared to parents in group 2 (p = .012).
Conclusion: Parents of childhood survivors of allogeneic HSCT experience poorer mental health and social functioning compared to norms. Parent health and socioeconomic factors tend to improve the longer their children survive after HSCT. Routine screening of parent psychological and physical health after pediatric HSCT is necessary to identify at risk parents and those needing additional support. Screening may yield a subset of parents experiencing adverse psychological or physical health related to the intense burden of caring for their child after transplant. These parents should be referred to psychiatric or medical services as appropriate. Individualized counseling and group therapy or support groups should be offered to parents regularly or on an as needed basis.
See more of: Invited Posters