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Article

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

by
Milou J. P. Reuvers
1,2,3,*,
Vivian W. G. Burgers
1,2,3,
Carla Vlooswijk
4,
Bram Verhees
5,
Olga Husson
1,2,6,† and
Winette T. A. van der Graaf
2,3,†
1
Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1006 BE Amsterdam, The Netherlands
2
Department of Medical Oncology, Netherlands Cancer Institute—Antoni van Leeuwenhoek, 1006 BE Amsterdam, The Netherlands
3
Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
4
Department of Research and Development, Netherlands Comprehensive Cancer Organization, 3511 DT Utrecht, The Netherlands
5
Hoestie Foundation, 5616 JX Eindhoven, The Netherlands
6
Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands
*
Author to whom correspondence should be addressed.
†
These authors share last authorship.
J. Clin. Med. 2024, 13(1), 158; https://doi.org/10.3390/jcm13010158
Submission received: 24 October 2023 / Revised: 21 December 2023 / Accepted: 25 December 2023 / Published: 27 December 2023
(This article belongs to the Special Issue Adolescents and Young Adults (AYAs) with Cancer: Part II)
Versions Notes

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.
Keywords: informal caregivers; adolescent and young adult oncology; caregiver burden; advanced cancer informal caregivers; adolescent and young adult oncology; caregiver burden; advanced cancer

Share and Cite

MDPI and ACS Style

Reuvers, M.J.P.; Burgers, V.W.G.; Vlooswijk, C.; Verhees, B.; Husson, O.; van der Graaf, W.T.A. Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP). J. Clin. Med. 2024, 13, 158. https://doi.org/10.3390/jcm13010158

AMA Style

Reuvers MJP, Burgers VWG, Vlooswijk C, Verhees B, Husson O, van der Graaf WTA. Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP). Journal of Clinical Medicine. 2024; 13(1):158. https://doi.org/10.3390/jcm13010158

Chicago/Turabian Style

Reuvers, Milou J. P., Vivian W. G. Burgers, Carla Vlooswijk, Bram Verhees, Olga Husson, and Winette T. A. van der Graaf. 2024. "Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP)" Journal of Clinical Medicine 13, no. 1: 158. https://doi.org/10.3390/jcm13010158

APA Style

Reuvers, M. J. P., Burgers, V. W. G., Vlooswijk, C., Verhees, B., Husson, O., & van der Graaf, W. T. A. (2024). Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP). Journal of Clinical Medicine, 13(1), 158. https://doi.org/10.3390/jcm13010158

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