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Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol

INTRODUCTION: Primary sclerosing cholangitis (PSC) is a rare and chronic disease characterised by inflammation and fibrosis of the liver’s bile ducts. There is no known cause or cure for the illness, which often progresses to end-stage liver disease requiring liver transplantation. Symptoms of PSC c...

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Autores principales: Ranieri, Veronica, Kennedy, Eilis, Walmsley, Martine, Thorburn, Doug, McKay, Kathy
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6797408/
https://www.ncbi.nlm.nih.gov/pubmed/31578198
http://dx.doi.org/10.1136/bmjopen-2019-031417
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author Ranieri, Veronica
Kennedy, Eilis
Walmsley, Martine
Thorburn, Doug
McKay, Kathy
author_facet Ranieri, Veronica
Kennedy, Eilis
Walmsley, Martine
Thorburn, Doug
McKay, Kathy
author_sort Ranieri, Veronica
collection PubMed
description INTRODUCTION: Primary sclerosing cholangitis (PSC) is a rare and chronic disease characterised by inflammation and fibrosis of the liver’s bile ducts. There is no known cause or cure for the illness, which often progresses to end-stage liver disease requiring liver transplantation. Symptoms of PSC can be very burdensome on those living with the illness, leading to restrictions in daily living, as well as a greater risk of colorectal and biliary tract cancers. Limited voices from lived experience suggest that living with PSC can cause considerable psychological distress. This study, therefore, aims to explore how the illness impacts the psychological well-being of those living with the illness, and those supporting them. It also aims to create a personalised psychological intervention to support all groups. METHODS AND ANALYSIS: This project will take a layered qualitative approach to understanding the ways in which people experience living with PSC within their day-to-day lives. There will be two stages to this study, which will pilot a unique methodological process using online resources. The first stage will consist of asynchronous virtual focus groups (AVFGs) with those living with PSC and those who provide support for those diagnosed with PSC, and narrative interviews with both groups and health professionals. Both the AVFGs and the narrative interviews will be analysed using thematic narrative analysis. The second stage will comprise a roundtable discussion where the researchers and health professionals will devise a personalised psychological intervention to help to support those living with PSC and their supporters. The study duration is expected to be 18 months. ETHICS AND DISSEMINATION: The proposed study has been approved by the UK Health Research Authority and London—Queen Square Research Ethics Committee as application 18/LO/1075. Results from the AVFGs and the narrative interviews will be submitted for peer-reviewed publication. The findings of the study will also be presented nationally to PSC and medical communities, and a summary of the findings will be shared with participants.
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spelling pubmed-67974082019-10-31 Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol Ranieri, Veronica Kennedy, Eilis Walmsley, Martine Thorburn, Doug McKay, Kathy BMJ Open Gastroenterology and Hepatology INTRODUCTION: Primary sclerosing cholangitis (PSC) is a rare and chronic disease characterised by inflammation and fibrosis of the liver’s bile ducts. There is no known cause or cure for the illness, which often progresses to end-stage liver disease requiring liver transplantation. Symptoms of PSC can be very burdensome on those living with the illness, leading to restrictions in daily living, as well as a greater risk of colorectal and biliary tract cancers. Limited voices from lived experience suggest that living with PSC can cause considerable psychological distress. This study, therefore, aims to explore how the illness impacts the psychological well-being of those living with the illness, and those supporting them. It also aims to create a personalised psychological intervention to support all groups. METHODS AND ANALYSIS: This project will take a layered qualitative approach to understanding the ways in which people experience living with PSC within their day-to-day lives. There will be two stages to this study, which will pilot a unique methodological process using online resources. The first stage will consist of asynchronous virtual focus groups (AVFGs) with those living with PSC and those who provide support for those diagnosed with PSC, and narrative interviews with both groups and health professionals. Both the AVFGs and the narrative interviews will be analysed using thematic narrative analysis. The second stage will comprise a roundtable discussion where the researchers and health professionals will devise a personalised psychological intervention to help to support those living with PSC and their supporters. The study duration is expected to be 18 months. ETHICS AND DISSEMINATION: The proposed study has been approved by the UK Health Research Authority and London—Queen Square Research Ethics Committee as application 18/LO/1075. Results from the AVFGs and the narrative interviews will be submitted for peer-reviewed publication. The findings of the study will also be presented nationally to PSC and medical communities, and a summary of the findings will be shared with participants. BMJ Publishing Group 2019-10-02 /pmc/articles/PMC6797408/ /pubmed/31578198 http://dx.doi.org/10.1136/bmjopen-2019-031417 Text en © Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ. This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.
spellingShingle Gastroenterology and Hepatology
Ranieri, Veronica
Kennedy, Eilis
Walmsley, Martine
Thorburn, Doug
McKay, Kathy
Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title_full Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title_fullStr Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title_full_unstemmed Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title_short Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
title_sort rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol
topic Gastroenterology and Hepatology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6797408/
https://www.ncbi.nlm.nih.gov/pubmed/31578198
http://dx.doi.org/10.1136/bmjopen-2019-031417
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