Background: Adolescent/young adult (AYA) cancer survivors experience greater psychosocial distress than younger or older adults. To address their psychosocial distress, it is important that healthcare providers (HCPs) foster connectedness with AYAs; however, some HCPs' words and behaviors may actually create a sense of disconnectedness with AYAs.
Objective: The aim of this study was to describe AYA cancer survivors' experiences of disconnectedness from HCPs during cancer treatment.
Methods: This empirical phenomenological study sample included 9 AYA cancer survivors (aged 20-23 years) diagnosed during adolescence. In-person interviews were conducted using a broad data-generating question and analyzed using an adapted Colaizzi's method.
Results: Healthcare providers' behaviors that create disconnectedness include (1) exhibiting a lack of appreciation for AYAs' personhood, (2) inflicting unnecessary harm or discomfort, (3) being apathetic of needs and preferences, (4) treating AYAs like they have minimal rights, (5) speaking in a patronizing manner, (6) ignoring their requests, and (7) failing to be vigilant for basic needs. When AYAs experience disconnectedness, they feel dehumanized, powerless, and a lack of self-determination.
Conclusion: Findings highlight disturbing HCP behaviors that create AYA disconnectedness. Despite generally feeling connected to HCPs, AYA cancer survivors' experiences of disconnectedness leave lingering feelings of anger and resentment, even after treatment ends. Preventing disconnectedness behaviors must be a priority.
Implications For Practice: AYA cancer survivors' can benefit from having the opportunity to share their experiences of disconnectedness and having the chance to be autonomous in their care. Bringing awareness to HCPs about what behaviors cause disconnectedness is essential in preventing the behaviors.
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http://dx.doi.org/10.1097/NCC.0000000000000653 | DOI Listing |
Asian Pac J Cancer Prev
December 2024
Section of Radiation Oncology, The Aga Khan University Hospital, Karachi, Pakistan.
J Cancer Res Clin Oncol
December 2024
Department of Medical Psychology and Medical Sociology, Comprehensive Cancer Center Central Germany (CCCG), University Medical Center Leipzig, Philipp-Rosenthal-Str. 55, 04103, Leipzig, Germany.
Purpose: Adolescent and young adult cancer survivors (AYA-CS) face a long working life after treatment, yet factors related to a successful return to work remain largely unexplored. We therefore aimed to investigate the use of occupational adjustments and their impact on work ability upon return to work.
Methods: As part of the AYA-LE study, we surveyed AYA-CS (aged 18-39 at diagnosis) who returned to work and assessed work ability (Work Ability Index) as well as use and benefit of occupational adjustments.
Front Endocrinol (Lausanne)
December 2024
Department of Oncology-Pathology, Karolinska Institutet, Stockholm, Sweden.
Background: The possibility of future parenthood is a highly relevant issue for patients of reproductive age facing oncologic treatment. This study aimed to investigate how fatherhood was achieved in a patient cohort of adolescents and young adults (AYAs) banking semen at time of cancer diagnosis and to determine the effectiveness of cryopreservation aimed at fertility preservation in the cohort.
Materials And Methods: Observational cohort study examining AYAs with a cancer diagnosis who underwent semen banking for fertility preservation at Karolinska University Hospital 1988-2020, as part of the Stockholm regional fertility preservation program.
Contemp Clin Trials
December 2024
Northwestern University Feinberg School of Medicine, Department of Medical Social Sciences, USA.
Adolescent and young adult cancer survivors (AYAs) experience clinically significant distress and have limited access to supportive care services. Interventions to enhance psychological well-being have improved positive affect and reduced depression in clinical and healthy populations and have not been routinely tested in AYA survivors. We are optimizing a web-based positive skills intervention for AYA cancer survivors called Enhancing Management of Psychological Outcomes With Emotion Regulation (EMPOWER) by: (1) determining which intervention components have the strongest effects on well-being and (2) identifying demographic and individual difference variables that mediate and moderate EMPOWER's efficacy.
View Article and Find Full Text PDFActa Neuropathol Commun
December 2024
Michigan Center for Translational Pathology, University of Michigan, Ann Arbor, MI, USA.
We identified a rare heterozygous germline loss-of-function variant in the tumor necrosis factor receptor-associated factor 2 (TRAF2) in a young adult patient diagnosed with medulloblastoma. This variant is located within the TRAF-C domain of the E3 ubiquitin ligase protein and is predicted to diminish the binding affinity of TRAF2 to upstream receptors and associated adaptor proteins. Integrative genomics revealed a biallelic loss of TRAF2 via partial copy-neutral loss-of-heterozygosity of 9q in the medulloblastoma genome.
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