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And what about today? Burden and support needs of adolescent childhood cancer survivors in long‐term follow‐up care—A qualitative content analysis

Winzig, Jana ; Inhestern, Laura ; Sigmund, Désirée ; Paul, Verena ; Hail, Lesley‐Ann ; Rutkowski, Stefan ; Escherich, Gabriele ; Bergelt, Corinna

Child : care, health & development, 2024-01, Vol.50 (1), p.e13207-n/a [Periódico revisado por pares]

England: Blackwell Publishing Ltd

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  • Título:
    And what about today? Burden and support needs of adolescent childhood cancer survivors in long‐term follow‐up care—A qualitative content analysis
  • Autor: Winzig, Jana ; Inhestern, Laura ; Sigmund, Désirée ; Paul, Verena ; Hail, Lesley‐Ann ; Rutkowski, Stefan ; Escherich, Gabriele ; Bergelt, Corinna
  • Assuntos: Adolescent ; Adolescents ; Adult ; Cancer ; Cancer Survivors - psychology ; Child ; Child Role ; Childhood ; childhood cancer survivors ; Children ; Cognitive impairment ; Content analysis ; Delivery of Health Care - methods ; Developmental tasks ; Emotional support ; Families & family life ; Follow-Up Studies ; Health care ; Health services ; Humans ; Interviews ; long‐term follow‐up care ; mental burden ; Needs ; Neoplasms - psychology ; Psychosocial factors ; psycho‐oncology ; Social interaction ; support needs ; Survival analysis ; Survivor ; Survivors ; Teenagers
  • É parte de: Child : care, health & development, 2024-01, Vol.50 (1), p.e13207-n/a
  • Notas: Funding information
    Gabriele Escherich and Corinna Bergelt shared senior authorship.
    The project was funded by Hamburger Krebsgesellschaft (HKG) and Fördergemeinschaft Kinderkrebs‐Zentrum Hamburg e.V., and the study was conducted within the endowed professorship for health care research in pediatric rare diseases (Kindness for Kids professorship). None of the listed had neither influence on the study design nor the outcome of this study.
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    SourceType-Scholarly Journals-1
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  • Descrição: Purpose Childhood cancer affects approximately 2000 children annually in Germany, and there is an increasing number of long‐term childhood cancer survivors. Due to developmental tasks, adolescent survivors in long‐term follow‐up (LTFU) care may face specific challenges and perceive different burden due to their disease. The current study explored (a) the impact of cancer and burden regarding survivorship and (b) supportive needs of adolescent childhood cancer survivors in LTFU care. Methods Semistructured qualitative interviews were conducted with 18 adolescent childhood cancer survivors in LTFU care aged 14–18 years (average age 16.4 years). Interviews were transcribed verbatim and analysed using content analysis. Results Based on the exploratory research questions, two key categories were generated: (1) The impact and burden on survivors' lives during LTFU care and (2) support needs of adolescent childhood cancer survivors in LTFU care. The four subcategories that emerged regarding the impact and burden on survivors' lives during LTFU care were (1) physical consequences, (2) cognitive impairments, (3) difficulties in social interactions, and (4) psychosocial burden. Additionally, two subcategories, (1) practical and (2) emotional support needs of adolescent childhood cancer survivors were identified. Conclusions Our results indicate that childhood cancer influences adolescent survivors' life in a negative way even many years after the end of treatment. Furthermore, parents seem to play a crucial role in the survivorship experience of childhood cancer survivors, as they remain keep responsible for most cancer‐related concerns even during LTFU care, causing adolescents to persist in the child role. A family systemic approach to care is suggested to facilitate development‐specific tasks and to enable adolescents to become autonomous adults. Still, the question remains as to who in the health care system could take over the family systemic tasks.
  • Editor: England: Blackwell Publishing Ltd
  • Idioma: Inglês
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  • Realização: ABCD-USP USP   Logos de Redes Sociais: Freepik

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