The gap between expectations and reality: A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study

Abstract

Objective: In this sub-study from the 'PACCS' study, we explored the psychosocial experiences of children and adolescents in everyday life post-cancer treatment and the possible factors that can moderate these experiences.Methods: This is a qualitative explorative study using semi-structured interviews with 43 childhood cancer survivors between the ages of nine and 18 from Norway and Denmark. We conducted a secondary thematic analysis using Malterud's systematic text condensation. Results: Two main themes were identified: 'The post-treatment gap between expectations and reality' comprised two subthemes: (1) lack of mastery and feeling different and (2) lack of understanding and acceptance. The second main theme, 'Managing the gap', comprised three subthemes: (1) information and knowledge, (2) adjustments and adaptions and (3) social support and openness. The findings reveal that the psychosocial challenges resulted from the remaining ability gap(s). Measures such as tailored information, school adjustments and social support were potential dynamic factors affecting the gap(s) positively or negatively. Psychosocial challenges post-treatment are experiences of lack of acceptance and understanding from others. Conclusion: To safeguard a positive transition back to everyday life, health care providers should support the survivors' psychosocial care, including getting back to school and re-entering social interactions.

Social participation of school‐aged survivors of pediatric brain tumors: A daily diary report

“…Importantly, items on this factor were endorsed minimally, and more than 20% of participants indicated participating in zero social activities during the week. An encouraging finding is that the majority of participants did not report negative interactions, which contrasts with some other studies showing that pediatric cancer survivors are at increased risk of peer victimization and/or exclusion 39–41 . However, the infrequent reporting of negative interactions could also represent an under‐recognition of such behavior.…”

“…An encouraging finding is that the majority of participants did not report negative interactions, which contrasts with some other studies showing that pediatric cancer survivors are at increased risk of peer victimization and/or exclusion. [39][40][41] However, the infrequent reporting of negative interactions could also represent an under-recognition of such behavior. Indeed, past research has indicated that PBTS may underor overestimate their social relationships with peers, 19 suggesting a potential misinterpretation or lack of awareness regarding peer interactions.…”

Life after paediatric brain tumour; the perspectives of the survivors and their parents

“…Another study shows that PBT survivors report discrepancies between what they can and want to do and that experiencing such discrepancies can lead to reduced health‐related QoL (Vanclooster et al, 2019). Furthermore, individualized information on late effects, social support and adjustments in school could help reduce such gaps (Larsen et al, 2022). Further moderations can be provided by nurses to regularly evaluate survivors for such psychological distress and guide them in setting realistic academic and self‐care goals and developing effective coping strategies and self‐management skills (Shin et al, 2020).…”

“…Conversely, the PBT survivors in this study claimed it was challenging to adjust their expectations and life goals to their reduced abilities, which often involved renegotiating their goals after many unsuccessful attempts to live their lives as before the PBT events. This is recognized as ability "gaps" between survivors' expectations and actual abilities post-cancer (Larsen et al, 2022). Another study shows that PBT survivors report discrepancies between what they can and want to do and that experiencing such discrepancies can lead to reduced health-related QoL (Vanclooster et al, 2019).…”

“…Furthermore, individualized information on late effects, social support and adjustments in school could help reduce such gaps (Larsen et al, 2022). Further moderations can be provided by nurses to regularly evaluate survivors for such psychological distress and guide them in setting realistic academic and self-care goals and developing effective coping strategies and self-management skills (Shin et al, 2020).…”