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Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies

Gogem Topcu Orcid Logo, Jacqueline R. Mhizha-Murira Orcid Logo, Holly Griffiths Orcid Logo, Clare Bale, Avril Drummond Orcid Logo, Deborah Fitzsimmons Orcid Logo, Kristy-Jane Potter Orcid Logo, Nikos Evangelou Orcid Logo, Roshan das Nair Orcid Logo

Disability and Rehabilitation, Volume: 45, Issue: 5, Pages: 1 - 12

Swansea University Author: Deborah Fitzsimmons Orcid Logo

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DOI (Published version): 10.1080/09638288.2022.2046187

Abstract

PurposeThis meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis.MethodsFive electronic databases were systematically searched to identify qualitative...

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Published in: Disability and Rehabilitation
ISSN: 0963-8288 1464-5165
Published: Informa UK Limited 2022
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URI: https://cronfa.swan.ac.uk/Record/cronfa59639
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Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence.ResultsThirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis.ConclusionsOur synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for RehabilitationThe period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding.Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions.Adaptive coping skills and support resources could contribute to better adjustment following diagnosis.Support interventions should be tailored to the needs of newly diagnosed people.</abstract><type>Journal Article</type><journal>Disability and Rehabilitation</journal><volume>45</volume><journalNumber>5</journalNumber><paginationStart>1</paginationStart><paginationEnd>12</paginationEnd><publisher>Informa UK Limited</publisher><placeOfPublication/><isbnPrint/><isbnElectronic/><issnPrint>0963-8288</issnPrint><issnElectronic>1464-5165</issnElectronic><keywords>Diagnosis; emotional adjustment; emotions; multiple sclerosis; psychological adaptation; qualitative research; systematic review</keywords><publishedDay>7</publishedDay><publishedMonth>3</publishedMonth><publishedYear>2022</publishedYear><publishedDate>2022-03-07</publishedDate><doi>10.1080/09638288.2022.2046187</doi><url/><notes/><college>COLLEGE NANME</college><department>Health and Social Care School</department><CollegeCode>COLLEGE CODE</CollegeCode><DepartmentCode>HSOC</DepartmentCode><institution>Swansea University</institution><apcterm/><funders/><projectreference/><lastEdited>2023-06-12T15:53:49.4440693</lastEdited><Created>2022-03-16T14:10:55.9159586</Created><path><level id="1">Faculty of Medicine, Health and Life Sciences</level><level id="2"/></path><authors><author><firstname>Gogem</firstname><surname>Topcu</surname><orcid>0000-0002-7400-5686</orcid><order>1</order></author><author><firstname>Jacqueline R.</firstname><surname>Mhizha-Murira</surname><orcid>0000-0002-1976-0195</orcid><order>2</order></author><author><firstname>Holly</firstname><surname>Griffiths</surname><orcid>0000-0003-2938-9534</orcid><order>3</order></author><author><firstname>Clare</firstname><surname>Bale</surname><order>4</order></author><author><firstname>Avril</firstname><surname>Drummond</surname><orcid>0000-0003-1220-8354</orcid><order>5</order></author><author><firstname>Deborah</firstname><surname>Fitzsimmons</surname><orcid>0000-0002-7286-8410</orcid><order>6</order></author><author><firstname>Kristy-Jane</firstname><surname>Potter</surname><orcid>0000-0002-6443-4321</orcid><order>7</order></author><author><firstname>Nikos</firstname><surname>Evangelou</surname><orcid>0000-0003-2871-0672</orcid><order>8</order></author><author><firstname>Roshan das</firstname><surname>Nair</surname><orcid>0000-0001-8143-7893</orcid><order>9</order></author></authors><documents><document><filename>59639__24707__a267cfd10472420daf4296c3a90280f3.pdf</filename><originalFilename>59639.pdf</originalFilename><uploaded>2022-07-22T10:26:48.1145990</uploaded><type>Output</type><contentLength>2981432</contentLength><contentType>application/pdf</contentType><version>Version of Record</version><cronfaStatus>true</cronfaStatus><documentNotes>Copyright 2022 The Author(s). 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spelling 2023-06-12T15:53:49.4440693 v2 59639 2022-03-16 Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies e900d99a0977beccf607233b10c66b43 0000-0002-7286-8410 Deborah Fitzsimmons Deborah Fitzsimmons true false 2022-03-16 HSOC PurposeThis meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis.MethodsFive electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence.ResultsThirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis.ConclusionsOur synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for RehabilitationThe period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding.Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions.Adaptive coping skills and support resources could contribute to better adjustment following diagnosis.Support interventions should be tailored to the needs of newly diagnosed people. Journal Article Disability and Rehabilitation 45 5 1 12 Informa UK Limited 0963-8288 1464-5165 Diagnosis; emotional adjustment; emotions; multiple sclerosis; psychological adaptation; qualitative research; systematic review 7 3 2022 2022-03-07 10.1080/09638288.2022.2046187 COLLEGE NANME Health and Social Care School COLLEGE CODE HSOC Swansea University 2023-06-12T15:53:49.4440693 2022-03-16T14:10:55.9159586 Faculty of Medicine, Health and Life Sciences Gogem Topcu 0000-0002-7400-5686 1 Jacqueline R. Mhizha-Murira 0000-0002-1976-0195 2 Holly Griffiths 0000-0003-2938-9534 3 Clare Bale 4 Avril Drummond 0000-0003-1220-8354 5 Deborah Fitzsimmons 0000-0002-7286-8410 6 Kristy-Jane Potter 0000-0002-6443-4321 7 Nikos Evangelou 0000-0003-2871-0672 8 Roshan das Nair 0000-0001-8143-7893 9 59639__24707__a267cfd10472420daf4296c3a90280f3.pdf 59639.pdf 2022-07-22T10:26:48.1145990 Output 2981432 application/pdf Version of Record true Copyright 2022 The Author(s). This is an Open Access article distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives License true eng http://creativecommons.org/licenses/by-nc-nd/4.0/
title Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
spellingShingle Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
Deborah Fitzsimmons
title_short Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
title_full Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
title_fullStr Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
title_full_unstemmed Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
title_sort Experiences of receiving a diagnosis of multiple sclerosis: a meta-synthesis of qualitative studies
author_id_str_mv e900d99a0977beccf607233b10c66b43
author_id_fullname_str_mv e900d99a0977beccf607233b10c66b43_***_Deborah Fitzsimmons
author Deborah Fitzsimmons
author2 Gogem Topcu
Jacqueline R. Mhizha-Murira
Holly Griffiths
Clare Bale
Avril Drummond
Deborah Fitzsimmons
Kristy-Jane Potter
Nikos Evangelou
Roshan das Nair
format Journal article
container_title Disability and Rehabilitation
container_volume 45
container_issue 5
container_start_page 1
publishDate 2022
institution Swansea University
issn 0963-8288
1464-5165
doi_str_mv 10.1080/09638288.2022.2046187
publisher Informa UK Limited
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
document_store_str 1
active_str 0
description PurposeThis meta-synthesis aimed to synthesise qualitative evidence on experiences of people with Multiple Sclerosis (MS) in receiving a diagnosis, to derive a conceptual understanding of adjustment to MS diagnosis.MethodsFive electronic databases were systematically searched to identify qualitative studies that explored views and experiences around MS diagnosis. Papers were quality-appraised using a standardised checklist. Data synthesis was guided by principles of meta-ethnography, a well-established interpretive method for synthesising qualitative evidence.ResultsThirty-seven papers were selected (with 874 people with MS). Synthesis demonstrated that around the point of MS diagnosis people experienced considerable emotional upheaval (e.g., shock, denial, anger, fear) and difficulties (e.g., lengthy diagnosis process) that limited their ability to make sense of their diagnosis, leading to adjustment difficulties. However, support resources (e.g., support from clinicians) and adaptive coping strategies (e.g., acceptance) facilitated the adjustment process. Additionally, several unmet emotional and informational support needs (e.g., need for personalised information and tailored emotional support) were identified that, if addressed, could improve adjustment to diagnosis.ConclusionsOur synthesis highlights the need for providing person-centred support and advice at the time of diagnosis and presents a conceptual map of adjustment for designing interventions to improve adjustment following MS diagnosis.Implications for RehabilitationThe period surrounding Multiple Sclerosis diagnosis can be stressful and psychologically demanding.Challenges and disruptions at diagnosis can threaten sense of self, resulting in negative emotions.Adaptive coping skills and support resources could contribute to better adjustment following diagnosis.Support interventions should be tailored to the needs of newly diagnosed people.
published_date 2022-03-07T14:13:48Z
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