Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP)

Milou J.P. Reuvers*, Vivian W.G. Burgers, Carla Vlooswijk, Bram Verhees, Olga Husson, Winette T.A. van der Graaf

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Abstract

A minority of adolescent and young adult cancer patients (AYA) live with an uncertain or poor prognosis (UPCP). Caring for a young, advanced cancer patient can lead to caregiver burden. This study aims to provide insight into burden on informal caregivers of AYA cancer patients with UPCP. In-depth, semistructured interviews were conducted with parents (n = 12), siblings (n = 7), friends (n = 7), and partners (n = 13). Thematic analysis was performed to derive themes from the data. Participants reported sleeping problems and stress. They struggle with uncertainty, fear, loss, and negative emotions. Family life is altered due to solely taking care of the children, but also the AYA. Contact with friends and family is changed. The relationship to the AYA can shift positively (e.g., becoming closer) or negatively (e.g., more conflict or no longer being attracted). Participants were under pressure, having to take on many responsibilities and multiple roles. In the financial domain, they report less income and often must continue working. A high amount of caregiver burden is experienced among informal caregivers of AYAs with UPCP. Yet only part of the impact appears to be age specific. Specific, age-adjusted interventions can be developed to lower the burden.

Original languageEnglish
Article number158
JournalJournal of Clinical Medicine
Volume13
Issue number1
Early online date27 Dec 2023
DOIs
Publication statusPublished - Jan 2024

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Publisher Copyright: © 2023 by the authors.

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