University of Surrey

Test tubes in the lab Research in the ATI Dance Research

Experiences and preferences for end of life care for young adults with cancer and their informal carers: a narrative synthesis

Ngwenya, N, Kenten, C, Jones, L, Gibson, Faith, Pearce, S, Flatley, M, Hough, R, Stirling, LC, Taylor, R, Wong, G and Whelan, J (2017) 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, 6 (2). pp. 200-212.

[img] Text
Literature review final 16Nov2016.docx - Accepted version Manuscript
Restricted to Repository staff only until 11 January 2018.
Available under License : See the attached licence file.

Download (68kB)
[img]
Preview
Text (licence)
SRI_deposit_agreement.pdf
Available under License : See the attached licence file.

Download (33kB) | Preview

Abstract

Purpose 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. Methods A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods programme guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Results 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 whilst negative experiences were loss of ‘self’ and non-facilitative services and environment. Preferences included a family centred approach to care, honest conversations about end of life and facilitating normality. Conclusions There is little evidence focused on the end of life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end of life experiences and preference for young adults with cancer and their informal carers.

Item Type: Article
Subjects : Health Sciences
Divisions : Faculty of Health and Medical Sciences > School of Health Sciences
Authors :
NameEmailORCID
Ngwenya, NUNSPECIFIEDUNSPECIFIED
Kenten, CUNSPECIFIEDUNSPECIFIED
Jones, LUNSPECIFIEDUNSPECIFIED
Gibson, Faithf.gibson@surrey.ac.ukUNSPECIFIED
Pearce, SUNSPECIFIEDUNSPECIFIED
Flatley, MUNSPECIFIEDUNSPECIFIED
Hough, RUNSPECIFIEDUNSPECIFIED
Stirling, LCUNSPECIFIEDUNSPECIFIED
Taylor, RUNSPECIFIEDUNSPECIFIED
Wong, GUNSPECIFIEDUNSPECIFIED
Whelan, JUNSPECIFIEDUNSPECIFIED
Date : 11 January 2017
Identification Number : 10.1089/jayao.2016.0055
Copyright Disclaimer : Final publication is available from Mary Ann Liebert, Inc., publishers http://dx.doi.org/10.1089/jayao.2016.0055
Uncontrolled Keywords : Qualitative, end of life care, palliative care, systematic review, narrative synthesis
Related URLs :
Depositing User : Symplectic Elements
Date Deposited : 21 Feb 2017 17:31
Last Modified : 07 Jul 2017 08:16
URI: http://epubs.surrey.ac.uk/id/eprint/813591

Actions (login required)

View Item View Item

Downloads

Downloads per month over past year


Information about this web site

© The University of Surrey, Guildford, Surrey, GU2 7XH, United Kingdom.
+44 (0)1483 300800