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

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  • Marie Hamilton Larsen
  • Kjerstin Enger Hansson
  • Elna Hamilton Larsen
  • Martin Kaj Fridh
  • Natasha Nybro Petersen
  • Anneli Victoria Mellblom
  • Ellen Ruud
  • Larsen, Hanne Bækgaard
  • Hanne Cathrine Lie

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.

OriginalsprogEngelsk
Artikelnummere13696
TidsskriftEuropean Journal of Cancer Care
Vol/bind31
Udgave nummer6
Antal sider11
ISSN0961-5423
DOI
StatusUdgivet - 2022

Bibliografisk note

Funding Information:
We are grateful to the children and their parents/guardians for giving their time and effort. It is through their generosity that we were able to complete the study. We also thank study nurse Sunniva Helland for conducting interviews in Bergen, Benjamin Graungaard and Maria Brinkjær for participating in the Danish data gathering. We would also like to thank study nurses Karin Sylte Hammeren and Katrine Aas Underhaug in Oslo for assisting in the recruitment of participants. The authors thank all members of the PACCS study group not listed as co-authors of this paper (www.paccs.no).

Funding Information:
The study was supported by grants from the Research Council of Norway. Funding information

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

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