Nicklin, E orcid.org/0000-0002-6683-8098, Velikova, G orcid.org/0000-0003-1899-5942, Hulme, C orcid.org/0000-0003-2077-0419 et al. (4 more authors) (2019) Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review. Psycho-Oncology, 28 (3). pp. 477-487. ISSN 1057-9249
Abstract
Objective: Long‐term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long‐term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers.
Methods: Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14‐39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings.
Results: Fifty‐six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self–well‐being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age‐specific psychosocial services.
Conclusions: Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © 2019 John Wiley & Sons, Ltd. This is the peer reviewed version of the following article: Nicklin E, Velikova G, Hulme C, et al. Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review. Psycho‐Oncology. 2019;1–11, which has been published in final form at https://doi.org/10.1002/pon.4989. This article may be used for non-commercial purposes in accordance with Wiley Terms and Conditions for Self-Archiving. Uploaded in accordance with the publisher's self-archiving policy. |
Keywords: | adolescent; brain tumours; cancer; caregivers; oncology; supportive care; survivors; systematic review; young adult |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > Institute of Molecular Medicine (LIMM) (Leeds) > Section of Epidemiology and Biostatistics (Leeds) The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Cancer and Pathology (LICAP) > Patient Centred Outcomes Research The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Health Economics (Leeds) |
Funding Information: | Funder Grant number Yorkshire Cancer Research Not Known |
Depositing User: | Symplectic Publications |
Date Deposited: | 16 Jan 2019 11:52 |
Last Modified: | 18 Jan 2020 01:39 |
Status: | Published |
Publisher: | Wiley |
Identification Number: | 10.1002/pon.4989 |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:141080 |