Addressing gaps and enhancing experiences in support services for families of pediatric cancer survivors

Abstract

Abstract Background Childhood cancer’s enduring challenges extend beyond primary therapy. Diverse medical and psychosocial services are available to assist families in follow-up care. This interview study sought to gain a thorough understanding of family motives, satisfaction levels, and barriers to utilization. Methods The design of this cross-sectional study involves a qualitative content analysis of semi-structured interviews. We interviewed parents of minor cancer survivors within the first 5 years after primary treatment. Results Survivors readily accessed medical support services when necessary. While parents expressed overall satisfaction with the available services, there was a notable gap in their knowledge regarding appropriate psychosocial and family-orientated services. Barriers to access included geographical distances, time constraints, and the absence of childcare options. Conclusion There are familial challenges and burdens that fall outside the scope of conventional care services. Tailoring services to family-centered needs, providing more information and easier access to interventions might help to reduce barriers. Impact Existing need notwithstanding, families did not frequently utilize psychosocial services as they did medical ones. Identified barriers included lack of awareness, limited availability, long distances, and scheduling conflicts. While many studies primarily focus on adult patients or young adults, the present study examines the gaps and strengths in follow-up care for pediatric cancer survivors and their families. By acknowledging and addressing the unique challenges and strengths of families with pediatric cancer survivors, we can lead to a more tailored and effective follow-up approach that can enhance their overall well-being by minimizing barriers and providing targeted support.