The process of becoming independent while balancing health management and social life in adolescent and young adult childhood cancer survivors

Abstract

Aim: This study aimed to elucidate the process of how adolescent and young adult childhood cancer survivors (CCSs) become independent while balancing health management and social life with a view to providing long-term support.Methods: Semi-structured interviews were conducted with 22 Japanese CCSs aged 16-25 years. The data were then qualitatively analysed using the modified grounded theory approach.Results: Seven "categories" and 35 "concepts" were generated. The connections among these categories and concepts revealed the process of becoming independent while balancing health management and social life. The first phase in the process is "coordination within constraints," which includes "consciousness and worries about deteriorating health" and "adjustments to balance schoolwork and treatment." This phase changes into "challenges to being free and normal" and "release from constraints." Psychological development then occurs as "gratitude toward surrounding people" and "sustenance from experiencing a rare illness." However, CCSs also "face worries about the persistent effects of cancer," including "awareness of the necessity to continue hospital visits even into adulthood." Through these experiences, CCSs reach the phase of "finding a way to live with oneself," which integrates health management with social life. Conclusions: These findings may help parents and health, education, and social-care professionals anticipate and share changes in CCSs physical condition, daily life, and psychosocial development. CCSs need support in terms of coordinating cancer therapy and school life, trying what they want to do, selfmanaging their own health condition, and forming their identity, including making sense of their illness experience.

The parental involvement process regarding childhood cancer survivors becoming independent: Focus on balancing health management and social lives from adolescence to adulthood

“…Furthermore, it could mean that parents continue to perceive their children as vulnerable even years after the completion of cancer therapy and being independent in their current health status or with their past cancer history (Hogan et al, 2018). By contrast, CCSs feel overprotected by their parents and wish to be free from various restrictions (Miyagishima et al, 2023). These issues can create a gap between parents and children in balancing social life and health management.…”

“…Parents felt reassured and began to watch over CCSs because they recovered their physical condition, resumed a normal life after treatment (Miyagishima et al, 2023), and established self-care in daily life. Their sons/ daughters had been self-managing to some extent since starting to receive treatment, including the use of an intravenous catheter and medications at home, and explaining their symptoms to medical staff during outpatient visits.…”

“…Conversely, some studies have reported positive psychological and social conditions among CCSs and the support provided to them (Jervaeus et al, 2014; Tremolada et al, 2018). A qualitative study focusing on the process of AYA CCSs' independence says that CCSs' health management and social life change from the phase of coordination within inevitable physical and relational constraints into a phase of finding a way to live with oneself, which integrates health management and social life with their own will (Miyagishima et al, 2023). The process involves psychological development among CCSs, a social life released from constraints, continued hospital visits due to health concerns, and changes in parental involvement; however, this process is not uniform, and certain elements may be missing or unachieved, suggesting the need for individualized assessments (Miyagishima et al, 2023).…”

“…On the other hand, Schepers et al (2018) report finding no significant differences in the perceptions of parental care and overprotection by healthy youths or CCSs more than 3 years after diagnosis. Regarding relationships with parents during the process of becoming independent, CCSs appreciate their parents and recognize that their overprotective parents have changed their encouragement for what they want to do (Miyagishima et al, 2023). Therefore, parental involvement with CCSs may change during the post‐treatment course and growth of CCSs, so research from the parental perspective is also needed.…”