Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation

Abstract

Purpose This substudy of an intervention trial aimed to describe barriers to participation in psychological care among primary caregivers of children who were about to undergo a Hematopoietic Stem Cell Transplantation (HSCT), including demographic and medical correlates. Method Three hundred and twelve primary caregivers of children undergoing HSCT who were approached to participate in a psychological intervention trial (n = 218 enrollees and 94 decliners) completed a measure of barriers to psychological care. Results The most frequently endorsed barriers to care were focusing on the child as priority, not wanting to leave the child’s bedside, and already having adequate psychosocial support. The least frequently endorsed barriers were location, wait times, and stigma around seeking psychological care. Conclusions Results suggest that explaining how psychological care for a primary caregiver can positively affect their ill child may reduce barriers to seeking needed support services. Certain practical barriers to care may be irrelevant in inpatient settings where psychological support is offered.

Effectiveness of a Three-Stage Intervention in Reducing Caregiver Distress During Pediatric Hematopoietic Stem Cell Transplantation: A Randomized Controlled Trial

“…Two studies offered weekly or monthly intervention programs (Manne et al, 2016;Racine et al, 2018); support was provided by a psychologist and/or social worker. However, one study found that when a support intervention was available, primary caregivers were often reluctant to participate because they did not want to leave the child's bedside to participate (Devine et al, 2016).…”

“…The details of the intervention are listed in Table 1. Because caregivers have been reported to be reluctant to leave the child's bedside in order to receive support (Devine et al, 2016), a child care research assistant remained with the pediatric patient during all support sessions.…”

The need to support caregivers during pediatric bone marrow transplantation (BMT): A case report

“…Psychosocial care of parents is considered an essential standard in caring for children with cancer, (Kearney 2015), in particular for families of children undergoing BMT (Mangurian & Cowan, 2013; Packman et al, 2010; Gemmill et al, 2011; Devine et al, 2016). However, neither research nor clinical care has addressed the challenge of delivering this support given the unusual circumstance in which the parent is bound to a specific location and has difficulty accessing care (e.g., hospital isolation room, isolation at home) (Mangurian & Cowan, 2013).…”

“…BMT has a known negative psychological impact on patients and families (Packman et al, 2010; Devine et al, 2016). For patients, BMT is associated with anxiety, depression, post-traumatic stress, and declines in health-related quality of life.…”

Longitudinal examination of family efficacy following pediatric stem cell transplant

“…While it is imperative to understand how the family's ongoing support system may contribute importantly to remaining resilient during and after pSCT, not all families have the built in support systems needed to overcome the struggles of pSCT. Further, caregivers' use of their support system or supportive services is limited because of logistical and emotional barriers related to having an ill child in the hospital . One mechanism to address this concern is to integrate supportive care into the pSCT treatment process.…”