TY - JOUR

T1 - The gap between expectations and reality

T2 - A qualitative study of psychosocial challenges of young childhood cancer survivors from the PACCS study

AU - Larsen, Marie Hamilton

AU - Hansson, Kjerstin Enger

AU - Larsen, Elna Hamilton

AU - Fridh, Martin Kaj

AU - Petersen, Natasha Nybro

AU - Mellblom, Anneli Victoria

AU - Ruud, Ellen

AU - Larsen, Hanne Baekgaard

AU - Lie, Hanne Cathrine

N1 - Publisher Copyright: © 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - childhood cancer survivors

KW - PACCS study

KW - post-cancer

KW - psychosocial

KW - qualitative interviews

U2 - 10.1111/ecc.13696

DO - 10.1111/ecc.13696

M3 - Journal article

C2 - 36029045

AN - SCOPUS:85137540603

VL - 31

JO - European Journal of Cancer Care

JF - European Journal of Cancer Care

SN - 0961-5423

IS - 6

M1 - e13696

ER -