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Threading the cloak: palliative care education for care providers of adolescents and young adults with cancer

Authors Wiener L, Shaw Weaver M, Bell CJ, Sansom-Daly UM

Received 30 October 2014

Accepted for publication 24 November 2014

Published 9 January 2015 Volume 2015:5 Pages 1—18

DOI https://doi.org/10.2147/COAYA.S49176

Checked for plagiarism Yes

Review by Single-blind

Peer reviewer comments 2

Editor who approved publication: Dr Mark Kieran


Lori Wiener,1,*,# Meaghann Shaw Weaver,2,3,*,# Cynthia J Bell,4,# Ursula M Sansom-Daly,5–7

1Pediatric Oncology Branch, National Cancer Institute, NIH, Bethesda, MD, USA; 2Department of Oncology, Children’s National Health System, Washington, DC, USA; 3Department of Oncology, St Jude Children’s Research Hospital, Memphis, TN, USA; 4College of Nursing, Wayne State University and Hospice of Michigan Institute, Detroit, MI, USA; 5Behavioural Sciences Unit, Kids Cancer Centre, Sydney Children’s Hospital, Randwick, NSW, Australia; 6Discipline of Paediatrics, School of Women’s and Children’s Health, UNSW Medicine, The University of New South Wales, Kensington, NSW, Australia; 7Sydney Youth Cancer Service, Sydney Children’s/Prince of Wales Hospitals, Randwick, NSW, Australia

*These authors have contributed equally to this work

#On behalf of the Pediatric Palliative Care Special Interest Group at Children’s National Health System

Abstract: Medical providers are trained to investigate, diagnose, and treat cancer. Their primary goal is to maximize the chances of curing the patient, with less training provided on palliative care concepts and the unique developmental needs inherent in this population. Early, systematic integration of palliative care into standard oncology practice represents a valuable, imperative approach to improving the overall cancer experience for adolescents and young adults (AYAs). The importance of competent, confident, and compassionate providers for AYAs warrants the development of effective educational strategies for teaching AYA palliative care. Just as palliative care should be integrated early in the disease trajectory of AYA patients, palliative care training should be integrated early in professional development of trainees. As the AYA age spectrum represents sequential transitions through developmental stages, trainees experience changes in their learning needs during their progression through sequential phases of training. This article reviews unique epidemiologic, developmental, and psychosocial factors that make the provision of palliative care especially challenging in AYAs. A conceptual framework is provided for AYA palliative care education. Critical instructional strategies including experiential learning, group didactic opportunity, shared learning among care disciplines, bereaved family members as educators, and online learning are reviewed. Educational issues for provider training are addressed from the perspective of the trainer, trainee, and AYA. Goals and objectives for an AYA palliative care cancer rotation are presented. Guidance is also provided on ways to support an AYA’s quality of life as end of life nears.

Keywords: palliative care, education, training, adolescent, young adult
 

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