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Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol

Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers...

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Autores principales: Carswell, Claire, Yaqoob, Magdi, Gilbert, Patricia, Kuan, Ying, Laurente, Gladys, McGuigan, Karen, McKeaveney, Clare, McVeigh, Clare, Reid, Joanne, Rej, Soham, Walsh, Ian, Noble, Helen
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701309/
https://www.ncbi.nlm.nih.gov/pubmed/34946457
http://dx.doi.org/10.3390/healthcare9121731
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author Carswell, Claire
Yaqoob, Magdi
Gilbert, Patricia
Kuan, Ying
Laurente, Gladys
McGuigan, Karen
McKeaveney, Clare
McVeigh, Clare
Reid, Joanne
Rej, Soham
Walsh, Ian
Noble, Helen
author_facet Carswell, Claire
Yaqoob, Magdi
Gilbert, Patricia
Kuan, Ying
Laurente, Gladys
McGuigan, Karen
McKeaveney, Clare
McVeigh, Clare
Reid, Joanne
Rej, Soham
Walsh, Ian
Noble, Helen
author_sort Carswell, Claire
collection PubMed
description Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers.
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spelling pubmed-87013092021-12-24 Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol Carswell, Claire Yaqoob, Magdi Gilbert, Patricia Kuan, Ying Laurente, Gladys McGuigan, Karen McKeaveney, Clare McVeigh, Clare Reid, Joanne Rej, Soham Walsh, Ian Noble, Helen Healthcare (Basel) Study Protocol Background: End-stage kidney disease (ESKD) is an overwhelming illness that impacts not just patients, but also their informal carers. Patients who opt for conservative management rather than dialysis experience difficult symptoms and the psychosocial consequences of their condition. Informal carers of patients who choose conservative management can also experience high levels of psychosocial burden, yet there is little guidance on how best to support informal carers, and no evidence on psychosocial interventions to address unmet needs. Aim: The aim of this study is to explore the experiences and unmet needs of informal carers of patients with ESKD receiving conservative management in order to inform the development of a psychosocial intervention. Methods: This qualitative study will consist of three stages: (I) semi-structured interviews with informal carers in England and Northern Ireland, (II) focus groups with healthcare professionals and informal carers, and (III) national workshops to refine the components of a psychosocial intervention. Discussion: Informal carers of patients with ESKD who are receiving conservative management experience a high psychosocial burden, but there is limited evidence on how best to provide support, particularly as the patient nears the end of life. To our knowledge this study will be the first to address this gap by exploring the experiences and unmet needs of informal carers, with the aim of informing the development of a psychosocial intervention to support the health and wellbeing of informal carers. MDPI 2021-12-14 /pmc/articles/PMC8701309/ /pubmed/34946457 http://dx.doi.org/10.3390/healthcare9121731 Text en © 2021 by the authors. https://creativecommons.org/licenses/by/4.0/Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
spellingShingle Study Protocol
Carswell, Claire
Yaqoob, Magdi
Gilbert, Patricia
Kuan, Ying
Laurente, Gladys
McGuigan, Karen
McKeaveney, Clare
McVeigh, Clare
Reid, Joanne
Rej, Soham
Walsh, Ian
Noble, Helen
Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title_full Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title_fullStr Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title_full_unstemmed Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title_short Exploration of Caregiver Experiences of Conservatively Managed End-Stage Kidney Disease to Inform Development of a Psychosocial Intervention: The ACORN Study Protocol
title_sort exploration of caregiver experiences of conservatively managed end-stage kidney disease to inform development of a psychosocial intervention: the acorn study protocol
topic Study Protocol
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8701309/
https://www.ncbi.nlm.nih.gov/pubmed/34946457
http://dx.doi.org/10.3390/healthcare9121731
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