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Lived experience of persons with multiple sclerosis: A qualitative interview study
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Futurum Academy for Health and Care, Jönköping, Sweden.ORCID iD: 0000-0001-9049-6254
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Jönköping University, School of Health and Welfare, HHJ, Department for Quality Improvement and Leadership. Department of Care Science, Malmö University, Malmö, Sweden.ORCID iD: 0000-0003-0409-1985
Jönköping University, School of Health and Welfare, HHJ, Department for Quality Improvement and Leadership. Jönköping University, School of Health and Welfare, HHJ. ARN-J (Aging Research Network - Jönköping). Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Futurum Academy for Health and Care, Jönköping, Sweden.ORCID iD: 0000-0003-1176-8173
Jönköping University, School of Health and Welfare, HHJ, Department for Quality Improvement and Leadership. Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0003-0123-6392
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2023 (English)In: Brain and Behavior, E-ISSN 2162-3279, Vol. 13, no 7, article id e3104Article in journal (Refereed) Published
Abstract [en]

INTRODUCTION: Multiple sclerosis (MS) is a chronic autoimmune disease with a substantial impact on quality of life and functional capability. The prognosis of MS has changed over time due to the development of increasingly effective therapies. As the knowledge and perceptions of persons living with chronic conditions increasingly have been acknowledged, it has become important to understand lived experiences with a focus on everyday events and experiences as a way of knowing and interpreting the world. Exploring context-specific lived experiences as a source of knowledge about the disease and care may contribute to more precision in designing care services. The aim of this study was to explore the lived experience of persons living with MS in a Swedish context.

MATERIALS AND METHODS: A qualitative interview study was conducted with both purposeful and random sampling strategies, resulting in 10 interviews. Data were analyzed using inductive thematic content analysis.

RESULTS: The analysis generated 4 overarching themes with 12 subthemes, the 4 themes were: perspectives on life and health, influence on everyday life, relations with healthcare, and shared healthcare processes. The themes are concerned with the patients' own perspectives and context as well as medical and healthcare-related perspectives. Patterns of shared experiences were found, for example, in the diagnosis confirmation, future perspectives, and planning and coordination. More diverse experiences appeared concerning relations with others, one's individual requirements, symptoms and consequences, and knowledge building.

CONCLUSION: The findings suggest a need for a more diverse and coproduced development of healthcare services to meet diverse needs in the population with greater acknowledgement of the person's lived experience, including consideration of the complexity of the disease, personal integrity, and different ways of knowing. Findings from this study will be further explored together with other quantitative and qualitative data.

Place, publisher, year, edition, pages
John Wiley & Sons, 2023. Vol. 13, no 7, article id e3104
Keywords [en]
coproduction, multiple sclerosis care, patient experience, quality improvement
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:hj:diva-60518DOI: 10.1002/brb3.3104ISI: 000995986100001PubMedID: 37246453Scopus ID: 2-s2.0-85160921603Local ID: GOA;;882813OAI: oai:DiVA.org:hj-60518DiVA, id: diva2:1760446
Funder
Futurum - Academy for Health and Care, Jönköping County Council, SwedenAvailable from: 2023-05-30 Created: 2023-05-30 Last updated: 2025-10-13Bibliographically approved
In thesis
1. Exploring quality improvement integrating coproduction: Experiences from a Swedish healthcare system
Open this publication in new window or tab >>Exploring quality improvement integrating coproduction: Experiences from a Swedish healthcare system
2025 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

In the context of healthcare improvement and research, interest in and the perceived importance of coproduction are evolving. Existing theories and models in quality improvement (QI) are being revised to acknowledge coproduction and new models and tools are being tested—inviting learning from both research and practice.

The aim of this thesis is to explore QI integrating coproduction, both as part of a quality strategy in a Swedish region and through the application of a co-value model in multiple sclerosis (MS) care.

The thesis consists of four studies, conducted with an interactive research approach using qualitative and mixed methods. The studies explore the development of coproduction in a regional healthcare system, the lived experiences of people with MS, levels of contact frequency in healthcare, and the use of documented shared agreements (DSA) between patients and healthcare providers. Data sources included interviews, documents, patient records, and registry data.

A theoretical coproduction framework, structured around four interdependent perspectives—patients, professionals, systems, and science-informed practice—guided the synthesis of findings across studies.

In the patient perspective, findings include the evolution of patient roles in QI over time, from individual storytelling to more formalized and diverse roles. In MS care three overarching qualitative themes were identified: balancing health, illness, and daily life; responsibility and participation in care; and being recognized and met with care that is responsive. Mean and median distribution of variables between contact levels suggest an increase in symptoms, reduced function, and declining experiences of health from the lowest to the highest contact frequency. The variables age, gender, overall health, and functional status were significant predictors of belonging to a certain contact level, with each variable contributing differently across the different levels.

In the professional perspective, findings include perceptions of QI initiatives integrating coproduction—such as views on patient roles and changes in attitudes over time—as well as concerns about shared responsibility and evaluation. The use of DSA was influenced by organizational routines, access to information, and technical constraints. Adaptive practices emerged, such as developing the content of documentation.

In the system perspective, approaches to QI integrating coproduction evolved across micro-, meso-, and macro-systems, with growing attention to patients’ lived experiences and diverse needs. In MS care, both shared and differing perspectives were described within the population, and responding to this variation was challenging for the system. Relational aspects of coproduction sometimes required facilitation, and over time networks and formalized processes helped build a more sustainable relational infrastructure. DSA were used system-wide but often lacked relational integration.

In the science-informed practice perspective, several QI initiatives reflected characteristics of improvement science. Different methods and approaches for coproduction in QI brought together knowledge from patient experiences, professional expertise, and improvement science theory. Data such as quality registry and administrative data were combined with qualitative insights to explore variation in patient experiences and healthcare use.

While many of the findings reflect known dynamics of change in complex adaptive systems, the contribution lies in how these dynamics are made explicit through a mixed methods design and a theory-informed approach.

Together, the findings highlight that furthering QI integrating coproduction requires developing meaningful ways to understand and represent different patient populations, as well as the ability to recognize and integrate diverse perspectives and logics.

Abstract [sv]

Intresset för, och betydelsen av samskapande (coproduction) i hälso- och sjukvård utvecklas både inom förbättringsarbete och forskning. Befintliga teorier och modeller inom förbättringsarbete videreutvecklas för att integrera samskapande, och nya modeller och verktyg testas – vilket möjliggör lärande från både praktik och forskning.

Syftet med denna avhandling är att utforska förbättringsarbete som integrerar samskapande, dels som en del av en kvalitetsstrategi i en svensk region, dels genom tillämpning av en samskapandemodell (co-value) inom multipel skleros (MS)-vården.

Avhandlingen omfattar fyra studier och har genomförts med en interaktiv forskningsansats samt kvalitativa och mixade metoder. Studierna undersöker samskapandets utveckling i ett regionalt hälso- och sjukvårdssystem, levda erfarenheter hos personer med MS, kontaktmönster med vården och hur gemensamma dokumenterade överenskommelser mellan patient och vård används. Datakällor inkluderar intervjuer, dokument, patientjournaler och registerdata.

Ett teoretisk ramverk för samskapande inom hälso- och sjukvård, med fyra ömsesidigt beroende perspektiv – patienter, professionella, system och vetenskapligt informerad praktik – har väglett syntesen av resultaten.

I patientperspektivet framträder en utveckling av patienternas roller i förbättringsarbete över tid – från att dela personliga berättelser till mer formaliserade och varierade former av deltagande. Inom MS-vården identifierades tre övergripande teman: att balansera hälsa, sjukdom och vardagsliv; ansvar och delaktighet i vården; samt att bli sedd och bemött med en vård som är lyhörd. Analys av medel- och medianvärden mellan olika kontaktnivåer med vården visar på ökade symtom, försämrad funktion och en nedgång i upplevd hälsa från lägsta till högsta kontaktfrekvens. Variablerna ålder, kön, allmän hälsa och funktionsnivå var signifikanta prediktorer för tillhörighet till en viss kontaktnivå, där varje variabel bidrog på olika sätt vid de olika nivåerna av kontaktfrekvens.

Ur professionens perspektiv framkommer olika uppfattningar om förbättringsinitiativ med samskapande – till exempel synen på patientroller och hur attityder förändrats över tid – men också farhågor kring delat ansvar och utvärdering. Användningen av dokumenterade överenskommelser (DSA) påverkades av organisatoriska rutiner, tillgång till information och tekniska begränsningar. Samtidigt utvecklades anpassningar, exempelvis genom att innehållet i dokumentationen förändrades över tid.

Ur ett systemperspektiv utvecklades arbetssätt för kvalitetsförbättring med samskapande på mikro-, meso- och makronivå, med ökad uppmärksamhet på patienters levda erfarenheter och varierande behov. Relationella aspekter av samskapande krävde ibland särskild facilitering och över tid bidrog nätverk och mer formaliserade processer till en mer hållbar och relationell infrastruktur. Inom MS-vården beskrevs både gemensamma och skilda behov inom populationen, och vårdsystemet hade utmaningar att möta denna variation. DSA användes på systemnivå men saknade ofta en relationell förankring.

Inom vetenskapligt informerad praktik återfanns exempel på olika metoder och angreppsätt för samskapande, där patienters erfarenheter, professionell kunskap och kvalitetsförbättringsteori sammanfördes. Kvalitetsregisterdata och administrativa data kombinerades med kvalitativa insikter för att undersöka variationer i patienters upplevelser och kontakter.

Även om flera av resultaten speglar kända förhållanden vid förändring i komplexa adaptiva system, ligger avhandlingens bidrag i hur dessa görs explicita genom tillämpning av mixade metoder och ett teoretiskt ramverk.

Sammantaget pekar resultaten på att fortsatt utveckling av förbättringsarbete som integrerar samskapande bör inriktas på två områden: att utveckla kunskap och metoder för en meningsfull förståelse och representation av olika patientgrupper och deras behov, samt att stärka förmågan att integrera olika perspektiv och logiker.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2025. p. 110
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 147
Keywords
quality improvement, coproduction, co-value, multiple sclerosis
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-69768 (URN)978-91-88669-69-8 (ISBN)978-91-88669-70-4 (ISBN)
Public defence
2025-10-03, Forum Humanum, School of Health and Welfare, Jönköping, 10:00 (Swedish)
Opponent
Supervisors
Available from: 2025-09-15 Created: 2025-09-15 Last updated: 2025-10-13Bibliographically approved

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Persson, SofiaAndersson, Ann-ChristineAndersson-Gäre, BoelLindenfalk, Bertil

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