Perri R Tutelman1,2, Emily K Drake3,4, Robin Urquhart3,4,5. 1. Department of Psychology and Neuroscience, Dalhousie University, Halifax, Canada. 2. Centre for Pediatric Pain Research, IWK Health Centre, Halifax, Canada. 3. Faculty of Health, Dalhousie University, Halifax, Canada. 4. Cancer Outcomes Research Program, Nova Scotia Health Authority, Halifax, Canada. 5. Department of Surgery, Dalhousie University, Halifax, Canada.
Abstract
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer. Methods: Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis. Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness. Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer. Methods: Nine HCPs (four nurses and five physicians) took part in in-depth semistructured interviews. Participants were eligible if they were a nurse or physician in Atlantic Canada; cared for at least one AYA patient with terminal cancer in the past 3 years; and were able to speak and understand English. Data were analyzed using interpretive phenomenological analysis. Results: Analyses revealed four superordinate themes present in the data: (1) many unknowns and uncertainties associated with providing care for AYAs compounded by minimal or no training specifically concerning this population; (2) an intense emotional experience compared with caring for patients with terminal cancer of other ages; (3) personal identification with patients and their families; and (4) attempts to make sense of the circumstance thwarted by feelings of injustice and unfairness. Conclusions: HCPs experienced unique emotional and logistical challenges when caring for AYAs with terminal cancer, which can influence the care they provide. HCPs' experiences highlight the need for training to support clinicians in caring for AYAs with terminal cancer to optimize their own well-being and delivery of health care services to this population.
Entities:
Keywords:
delivery of health care; health personnel; interpretive phenomenological analysis; qualitative; terminal care
Authors: Ursula M Sansom-Daly; Lori Wiener; Anne-Sophie Darlington; Hanneke Poort; Abby R Rosenberg; Meaghann S Weaver; Fiona Schulte; Antoinette Anazodo; Celeste Phillips; Louise Sue; Anthony R Herbert; Jennifer W Mack; Toni Lindsay; Holly Evans; Claire E Wakefield Journal: PLoS One Date: 2022-07-08 Impact factor: 3.752
Authors: V W G Burgers; M J van den Bent; A-S E Darlington; A E Gualthérie van Weezel; A Compter; J M Tromp; R I Lalisang; M C M Kouwenhoven; L Dirven; N C G L Harthoorn; C A Troost-Heijboer; O Husson; W T A van der Graaf Journal: ESMO Open Date: 2022-05-06