Intervention Eases Parental Caregiver Burden During Child's HSCT

Sharon L. Manne, PhD

Sharon L. Manne, PhD

An intervention specifically aimed at reducing the trauma and anxiety that often comes with parenting a child undergoing hematopoietic stem cell transplant (HSCT) proved especially helpful for parents during the time of the actual transplant and subsequent hospitalization, according to findings of a randomized clinical trial published in the Journal of Consulting and Clinical Psychology.

The parent social-cognitive intervention (P-SCIP) also proved more beneficial in subgroups of caregivers who came into the HSCT process with already elevated depression and anxiety, and among those whose children experienced graft-versus-host disease (GVHD).

Between 2008 and 2013, 218 biological or foster parents of transplant recipients under age 19 were randomized to receive the P-SCIP intervention (n = 110) or best practice psychosocial care ([BCP] n= 108). P-SCIP involved five, 60-minute, in-person sessions over a 2-to-3-week period following the transplant in which parents viewed an interactive CD-ROM and were also given guidance on relaxation techniques, such as deep breathing and guided imagery relaxation. Topics covered included:

• Worries about your child
• Coping with solvable concerns involving a stem cell transplant
• Coping with unchangeable problems
• Communication
• Importance of expressing feelings and needs

The BPC control used for comparison had 4 components: a 1-hour video guide to a child’s stem cell transplant; a pamphlet covering common caregiver issues; an offer of 5 hours of respite care; and walkie-talkies to communicate with the child when the parent was not in the room.

A majority of caregivers in the P-SCIP group attended at least 3 of the 5 sessions where the intervention was offered. Participants were asked to complete an in-person survey within 1 month of their child receiving the transplant and to complete follow-up surveys at 1 month, and phone or mail surveys 6 months and 1 year. The surveys employed validated measures of depressive symptoms, anxiety, traumatic distress, and positive well-being.

Both P-SCIP and BPC were generally rated highly by participants. P-SCIP provided immediate relief of depression, anxiety, and traumatic distress compared with the BPC controls. “Such immediate relief as provided through this intervention is important, as it spares caregivers additional stress and trauma during a universally stressful life experience,” explained lead author Sharon L. Manne, PhD, Associate Director for Cancer Prevention, Control, and Population at the Rutgers Cancer Institute.

These psychological benefits seen during the time of the actual HSCT, when caregivers were experiencing the most distress, were not at observed at the 6-month and 1-year assessments, however. This finding may reflect the fact that distress declines as the child recovers after the procedure, the researchers hypothesized.

Among the cognitive and social aspects which improved more in the intervention arm were acceptance, humor, and problem-solving; no effect was seen in the areas of positive reappraisal, seeking emotional support, or fear appraisals, compared with the BPC (usual care) group.

Notably, longer-term benefits of the P-SCIP were seen in parents who reported more anxiety to begin with, and in those whose children experienced more adverse medical effects from HSCT, eg, GVHD. Therefore, screening caregivers to target interventions at these specific subgroups may be beneficial.

One limitation of the study cited by the authors is a “relatively high dropout rate,” with 19% of caregivers in the P-SCIP arm not attending any or only 1 of the 5 sessions, a finding they said may be in part attributable to caregivers not wanting to leave their child’s bedside.

“Also, if this intervention is carried into the clinical setting, methods of improving intervention attendance might be considered. Utilizing phone- or web-based contact that would allow the parent to remain in the room with the child during hospitalization might enable caregivers to more easily access the intervention.”

Manne S, Mee L, Bartell A, Sands S, Kashy DA. A randomized clinical trial of a parent-focused social-cognitive processing intervention for caregivers of children undergoing hematopoetic stem cell transplantation. J Consult Clin Psychol. 2016;84(5):389-401.