{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T13:47:27Z","timestamp":1782913647843,"version":"3.54.5"},"reference-count":30,"publisher":"MDPI AG","issue":"1","license":[{"start":{"date-parts":[[2023,12,27]],"date-time":"2023-12-27T00:00:00Z","timestamp":1703635200000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100003246","name":"Netherlands Organization for Scientific Research","doi-asserted-by":"publisher","award":["VIDI198.007"],"award-info":[{"award-number":["VIDI198.007"]}],"id":[{"id":"10.13039\/501100003246","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["JCM"],"abstract":"<jats:p>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.<\/jats:p>","DOI":"10.3390\/jcm13010158","type":"journal-article","created":{"date-parts":[[2023,12,27]],"date-time":"2023-12-27T10:23:54Z","timestamp":1703672634000},"page":"158","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":6,"title":["Same Journey, Different Paths: Caregiver Burden among Informal Caregivers of Adolescent and Young Adult Patients with an Uncertain or Poor Cancer Prognosis (UPCP)"],"prefix":"10.3390","volume":"13","author":[{"given":"Milou J. P.","family":"Reuvers","sequence":"first","affiliation":[{"name":"Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Netherlands Cancer Institute\u2014Antoni van Leeuwenhoek, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Vivian W. G.","family":"Burgers","sequence":"additional","affiliation":[{"name":"Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Netherlands Cancer Institute\u2014Antoni van Leeuwenhoek, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8885-6302","authenticated-orcid":false,"given":"Carla","family":"Vlooswijk","sequence":"additional","affiliation":[{"name":"Department of Research and Development, Netherlands Comprehensive Cancer Organization, 3511 DT Utrecht, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bram","family":"Verhees","sequence":"additional","affiliation":[{"name":"Hoestie Foundation, 5616 JX Eindhoven, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1387-8686","authenticated-orcid":false,"given":"Olga","family":"Husson","sequence":"additional","affiliation":[{"name":"Division of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Medical Oncology, Netherlands Cancer Institute\u2014Antoni van Leeuwenhoek, 1006 BE Amsterdam, The Netherlands"},{"name":"Department of Surgical Oncology, Erasmus MC Cancer Institute, Erasmus University Medical Center, 3015 GD Rotterdam, The Netherlands"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-7549-3338","authenticated-orcid":false,"given":"Winette T. 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