Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Jed S Jerwood; Gillian Ward; Diane Phimister; Nikki Holliday; Jane Coad

doi:10.1080/09699260.2021.1887589

Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Jed S Jerwood, Gillian Ward, Diane Phimister, Nikki Holliday, Jane Coad

Research output: Contribution to journal › Article › peer-review

9 Citations (Scopus)

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Abstract

Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved.

Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken.

Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back.

Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.

Original language	English
Pages (from-to)	255-263
Number of pages	9
Journal	Progress in Palliative Care
Volume	29
Issue number	5
Early online date	19 Mar 2021
DOIs	https://doi.org/10.1080/09699260.2021.1887589
Publication status	Published - 2021

Bibliographical note

This is an Accepted Manuscript version of the following article, accepted for publication in Progress in Palliative Care. Jerwood, JS, Ward, G, Phimister, D, Holliday, N & Coad, J 2021, 'Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care', Progress in Palliative Care, vol. 29, no. 5, pp. 255-263..

It is deposited under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited.

Funder

This study was funded as part of a doctoral research grant to the lead author from Coventry University, with supplementary support from Birmingham and Solihull Mental Health Foundation Trust Research and Innovation Department. The writing of this paper was supported by the award of a West Midlands Higher Education England funded Writing Grant and the Nursing, Midwives and Allied Health Professional’s Integrated Clinical Academic Research Unit, Birmingham Health Partners.

Keywords

Palliative care
End of life care
Severe mental illness (SMI)
Common and persistent mental illness (CPMI)
Patient experience
Carer experience
Psychosis
Schizophrenia
Dying

ASJC Scopus subject areas

Nursing(all)

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

Access to Document

10.1080/09699260.2021.1887589

Post-PrintAccepted author manuscript, 892 KBLicence: CC BY-NC

Cite this

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title = "Lean in, don{\textquoteright}t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care",

abstract = "Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved.Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken.Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back.Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.",

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note = "This is an Accepted Manuscript version of the following article, accepted for publication in Progress in Palliative Care. Jerwood, JS, Ward, G, Phimister, D, Holliday, N & Coad, J 2021, 'Lean in, don{\textquoteright}t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care', Progress in Palliative Care, vol. 29, no. 5, pp. 255-263.. It is deposited under the terms of the Creative Commons Attribution-NonCommercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. ",

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Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Abstract

Bibliographical note

Funder

Keywords

ASJC Scopus subject areas

UN SDGs

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