A systematic literature review exploring the psychosocial aspects of palliative care provision for incarcerated persons: a human rights perspective

• DOI: https://doi.org/10.1108/IJPH-02-2021-0017
• Published date: 15 December 2021
• Date: 15 December 2021
• Pages: 443-457
• Subject Matter: Health & social care,Criminology & forensic psychology,Prisoner health,Sociology,Sociology of crime & law,Public policy & environmental management,Policing,Criminal justice
• Author: Lise Johns,Stacey Weightman,Pippa Blackburn,Donna McAuliffe

A systematic literature review exploring

the psychosocial aspects of palliative

care provision for incarcerated persons:

a human rights perspective

Lise Johns, Stacey Weightman, Pippa Blackburn and Donna McAuliffe

Abstract

Purpose –The purposeof this study is to explore the psychosocial aspectsof palliative care provision for

incarceratedpersons drawing on a human rightsperspective.

Design/methodology/approach –Seven databases were searched to identify empirical studies

published from 2010 to 2020. Articlesincluded were qualitative, quantitative, mixed methods,written in

English and with westernised health/prison settings, with a key focus on the psychosocial aspects of

palliative care provision and human rights. The quality of the articles was appraised using the Mixed

MethodsAssessment Tool (2018).

Findings –The results from 26 articles revealed multiple models of care, with the US prison hospice

program depictedas optimal, because of the use of trainedincarcerated caregivers, workingas aides to

the interprofessional team. The bereavement needs of caregivers were highlighted. The barriers to

adequate psychosocialcare were negative public discourse, prisonprocesses and resources, provider

attitudesand the incarcerated person’s level of knowledge and trust. Identifiedfacilitators were related to

incarcerated persons’ caregiving programs, a sense of purpose and visitation leniency. Human rights

principleswere identified in studies that featuredcompassionate release andadvance care planning.

Research limitations/implications –There is inconsistencyin the literature regardingwhat constitutes

psychosocial care, which meant that the authors needed to draw on multiple literature sources to

formulate a definition. Additionally, the review only included studies written in English, meaning some

high-quality studies could have been missed. The articles that conducted interviews with incarcerated

individualswere undertaken in male prisons onlyand not female prisons.

Practical implications –Understanding the importance of psychosocial care for incarceratedpersons

with a life-limitingillness requires a shift in negative public discourseand the need for a stronger human

rights focus. Some countries, such as the USA and UK, are achieving effective outcomes; however,

countriessuch as Australia are yet to contribute to this knowledge base.

Originality/value –If palliative care is a human right, then its philosophy should be considered in its

entirety,with the inclusion of psychosocial care.

Keywords Human rights, Incarceration, Prisons, Palliative care, Psychosocial, Terminally ill, End-of-life

Paper type Literature review

Introduction

In 2018, there were an estimated 11 million individuals incarcerated in correctional

institutions worldwide (Walmsley, 2019). Approximately 20% of the US prison population is

aged over 50 years, with 17% in the UK and 15% in Australia (Age UK, 2019;Australian

Institute of Health and Welfare [AIHW], 2020;Federal Bureau of Prisons, 2020). Prison life

accelerates the ageing process because of the physical environment and poor health care,

meaning individuals often presentphysiologically 10–15 years older than their chronological

Lise Johns and

Stacey Weightman are both

based at the School of

Health Sciences and Social

Work, Logan Campus,

Meadowbrook, Australia.

Pippa Blackburn is based

at the Illawarra Shoalhaven

Local Health District,

Wollongong, Australia.

Donna McAuliffe is based

at the School of Health

Sciences and Social Work,

Logan Campus,

Meadowbrook, Australia.

Received 11 February 2021

Revised 10 August 2021

14 October 2021

24 November 2021

Accepted 25 November 2021

An acknowledgement is

extended to Lowri Bevan, a

Bachelor of Social Work

undergraduate student, who as

part of her field placement task,

made initial contributions to the

literature review.

The project was undertaken in

accordance with PRISMA

guidelines and registered with

PROSPERO (Reference

number CRD42020209416).

DOI 10.1108/IJPH-02-2021-0017 VOL. 18 NO. 4 2022, pp. 443-457, ©Emerald Publishing Limited, ISSN 1744-9200 jINTERNATIONAL JOURNAL OF PRISONER HEALTH jPAGE 443