Long-Term Psychosocial Support for Families of Children Who Have Undergone Allogeneic Stem Cell Transplant

Abstract

Stem cell transplant (SCT) in children has a continuing impact in the lives of the SCT recipients and their families. This realization has led to extended psychosocial support to these families. The aim of this study was to evaluate the extended psychosocial support. How many families accepted the proffered contact with the social worker and what kind of support did the families ask for? The data were collected from the patients' medical charts by the health care social worker. Content analysis was used as the research method. The study reveals a need for continued psychosocial support lasting many years after treatment. The need for support does not lessen with the passage of time, but the nature of the support changes.

`A life on hold': adolescents' experiences of stem cell transplantation in a long-term perspective

“…The adolescents in the current study expressed none of these thoughts. It might be that the other adolescents in the original study (Forinder et al, 2008), who did not express distress, were able to arrive at positive conclusions such as these, and in this way did not suffer the same distress as this group of seven.…”

“…Health social workers in Sweden are obliged by law to make notes in the patient medical records on the information they collect about the patients as well as about their psychosocial interventions and the patients' response to them. As has been pointed out previously (Epstein, 2001), this is information which can be converted into valuable retrospective databases for practice-based research studies, an opportunity which this study seized upon (the results and procedure of that study were presented in an earlier article; Forinder et al, 2008).…”

“…Approximately 60 percent of children and adolescents who are long-term survivors suffer late effects, both physical and psychological, that take a toll on the functioning of the family (Forinder, 2004). Earlier studies have shown a need for long-term support for families of children who has undergone SCT (Forinder, 2004;Forinder et al, 2008) and adolescents themselves expressed a great need for psychosocial support (Forinder et al, 2008). Young people are hit harder than adults by the side-effects of treatment since they are at a more susceptible phase of psychological, biological and cognitive development.…”

Longitudinal examination of family efficacy following pediatric stem cell transplant

“…Not only do families have to juggle a complex medical regimen, multiple follow‐up physician visits, strict isolation requirements, and re‐hospitalization because of infections, they also have to manage the care of individuals within the family unit other than the ill child. It is imperative that families are able to rely on others to perceive that their family will be able to persist during this critical time . For those families struggling, strengthening social relationships appears to be one evidenced‐based avenue to improve social support …”

“…Using social support preventatively and continuing social support from the medical team as a part of the child's standard of care after discharge will be imperative, as all types of social support (both emotional and tangible) rapidly decline after pSCT discharge, which is a critical time as families are learning to integrate new and complex needs for their child into the family system. Support from the medical team may include ongoing psychological support to address emotional needs particularly around medical uncertainty.…”