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(Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences

OBJECTIVE: Axial spondyloarthritis is a long-term rheumatic condition. The symptoms, including pain, can impact on the daily life routines and psychological well-being of individuals that are diagnosed with axial spondyloarthritis (axSpA). Partners are often a main source of support for individuals...

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Detalles Bibliográficos
Autores principales: Raybone, Kerry, Family, Hannah, Sengupta, Raj, Jordan, Abbie
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BMJ Publishing Group 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6615774/
https://www.ncbi.nlm.nih.gov/pubmed/31272972
http://dx.doi.org/10.1136/bmjopen-2018-025261
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author Raybone, Kerry
Family, Hannah
Sengupta, Raj
Jordan, Abbie
author_facet Raybone, Kerry
Family, Hannah
Sengupta, Raj
Jordan, Abbie
author_sort Raybone, Kerry
collection PubMed
description OBJECTIVE: Axial spondyloarthritis is a long-term rheumatic condition. The symptoms, including pain, can impact on the daily life routines and psychological well-being of individuals that are diagnosed with axial spondyloarthritis (axSpA). Partners are often a main source of support for individuals who manage a long-term condition and they can also be affected by the illness experience, often themselves reporting elevated levels of emotional distress. Few qualitative studies have explored the impact of axSpA on partner relationships. This study addresses the social context of axSpA by investigating the experiences for both individuals with axSpA and their partners. DESIGN: Semistructured individual telephone interviews analysed using thematic analysis at a dyadic partner level. SETTING: Participants were recruited from the social media pages of a UK-based axSpA-specific charity. PARTICIPANTS: Nine heterosexual partner dyads (23–65 years), who were currently cohabiting, comprising nine individuals diagnosed with axSpA (n=6 females) and nine partners (n=3 females). RESULTS: Three themes ‘Perceived relational closeness’, ‘Playing third wheel to axSpA’ and ‘Tensions surrounding a carer-type role’ were identified. The findings illustrate how living with axSpA can influence closeness between partners and dominate daily decisions, particularly surrounding leisure activities. Partners commonly adopted a carer-type role, despite many individuals with axSpA expressing desire for a greater sense of autonomy. CONCLUSIONS: This study provides an important insight into the lived experiences of both individuals with axSpA and their partners. Findings highlight the social context of managing a long-term condition and suggest the need for including partners within consultations, and the need for support provision for partners.
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spelling pubmed-66157742019-07-28 (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences Raybone, Kerry Family, Hannah Sengupta, Raj Jordan, Abbie BMJ Open Rheumatology OBJECTIVE: Axial spondyloarthritis is a long-term rheumatic condition. The symptoms, including pain, can impact on the daily life routines and psychological well-being of individuals that are diagnosed with axial spondyloarthritis (axSpA). Partners are often a main source of support for individuals who manage a long-term condition and they can also be affected by the illness experience, often themselves reporting elevated levels of emotional distress. Few qualitative studies have explored the impact of axSpA on partner relationships. This study addresses the social context of axSpA by investigating the experiences for both individuals with axSpA and their partners. DESIGN: Semistructured individual telephone interviews analysed using thematic analysis at a dyadic partner level. SETTING: Participants were recruited from the social media pages of a UK-based axSpA-specific charity. PARTICIPANTS: Nine heterosexual partner dyads (23–65 years), who were currently cohabiting, comprising nine individuals diagnosed with axSpA (n=6 females) and nine partners (n=3 females). RESULTS: Three themes ‘Perceived relational closeness’, ‘Playing third wheel to axSpA’ and ‘Tensions surrounding a carer-type role’ were identified. The findings illustrate how living with axSpA can influence closeness between partners and dominate daily decisions, particularly surrounding leisure activities. Partners commonly adopted a carer-type role, despite many individuals with axSpA expressing desire for a greater sense of autonomy. CONCLUSIONS: This study provides an important insight into the lived experiences of both individuals with axSpA and their partners. Findings highlight the social context of managing a long-term condition and suggest the need for including partners within consultations, and the need for support provision for partners. BMJ Publishing Group 2019-07-03 /pmc/articles/PMC6615774/ /pubmed/31272972 http://dx.doi.org/10.1136/bmjopen-2018-025261 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 Rheumatology
Raybone, Kerry
Family, Hannah
Sengupta, Raj
Jordan, Abbie
(Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title_full (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title_fullStr (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title_full_unstemmed (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title_short (Un)Spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
title_sort (un)spoken realities of living with axial spondyloarthritis: a qualitative study focused on couple experiences
topic Rheumatology
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6615774/
https://www.ncbi.nlm.nih.gov/pubmed/31272972
http://dx.doi.org/10.1136/bmjopen-2018-025261
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