Experiences and Preferences for End-of-Life Care for Young Adults with Cancer and Their Informal Carers: A Narrative Synthesis

Journal of Adolescent and Young Adult Oncology
Nothando NgwenyaJeremy Whelan

Abstract

To review the qualitative literature on experiences of and preferences for end-of-life care of people with cancer aged 16-40 years (young adults) and their informal carers. A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods program guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus, and sample, but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care, while negative experiences were loss of "self" and nonfacilitative services and environment. Preferences included a family-centered approach to care, honest conversations about end of life, and facilitating normality. There is little evidence focused on the end-of-life needs of young adults. Analysis of reports including some young adults does not explore experien...Continue Reading

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Citations

Jan 10, 2019·Pediatric Blood & Cancer·Bryan A SiskLiza-Marie Johnson
Oct 30, 2019·Journal of Adolescent and Young Adult Oncology·Ursula M Sansom-DalyJoanna E Fardell
Apr 6, 2018·Global Advances in Health and Medicine : Improving Healthcare Outcomes Worldwide·Hillary WoodsideMelanie R Keats
Nov 17, 2020·Journal of Psychosocial Oncology·Aleksandra Karolina Szproch, Rebecca Maguire
Feb 12, 2021·Supportive Care in Cancer : Official Journal of the Multinational Association of Supportive Care in Cancer·Bryan A SiskJames M DuBois
Mar 6, 2021·Journal of the National Comprehensive Cancer Network : JNCCN·Vivian W G BurgersOlga Husson
Jan 22, 2022·Current Oncology Reports·Allison UberKatharine E Brock

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