The Effectiveness of Family-Centered Care in Pediatric Cancer Populations for Improving Families' Well-Being and Reducing Burden: A Systematic Review

Background and Purpose: Family-centered care (FCC) is a recognized intervention in pediatric care, and there has been a growing body of research on FCC and its association with the child’s adaptation to cancer and the family’s physical and psychological health outcomes. However, most literature focused on positive outcomes of FCC on the child with cancer but not on the family members. It is imperative to consider how FCC may influence outcomes for family members since when a child is diagnosed with cancer, the family experiences the ramifications of the illness to varying degrees. This systematic review examined the effectiveness of FCC in alleviating stress and improving overall well-being for family members. To our knowledge, this is the first systematic review to investigate the effectiveness of FCC in pediatric cancer populations for improving family members’ well-being and reducing burden.

Methods: Our initial literature search identified a total of 504 articles and 141 duplicates. We included all FCC literature that were published or completed between 1994-present. We did not find any FCC literature prior to 1994. We searched six databases to identify articles that met the inclusion criteria. Articles were written in English, focused on families who have a child (<18 years old) diagnosed with pediatric cancer, reported outcomes of FCC on caregivers, and contained empirical evidence on FCC, well-being, burden, and pediatric cancer. Of the 363 articles, seven articles met all the inclusion criteria.

Results: All seven studies included either mothers, fathers, or relatives of the child/adolescent with cancer. There were two cross-sectional studies, two randomized control trials, and three quasi-experimental studies. Only two studies were conducted in the United States, while the other five took place either in Portugal, Iran, Germany, or Indonesia. All seven studies took place in either hospitals or inpatient rehabilitation programs. Five studies showed that FCC significantly decreased caregiving burden, stress, overall difficulties, and improved self-reported Quality-of-Life scores. Two of these five studies found significant indirect relationships between FCC and reducing burden. Perceived self-efficacy appeared to have a mediating effect between FCC, and well-being and burden outcomes. The final two studies used an adapted version of an FCC model and reported insignificant findings.

Conclusion and Implications: Our review revealed the paucity of literature on the effectiveness of FCC for family members in pediatric cancer populations and highlighted multiple complexities in measuring the effectiveness of FCC, the inconsistencies of the FCC definition, and the quality of FCC implementation. Such discrepancies, along with differences in culture and language may impact both the research process and the delivery of care and outcome. The relationship between culture and FCC may help clarify our findings since most of the studies were conducted outside of the United States. This review serves as a foundation to improve our understanding and implementation of FCC in pediatric cancer populations for improving families’ well-being and reducing burden. Findings may be used to refine the FCC definition and outcome measures, which may help increase global fidelity in delivery of FCC as an intervention.