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Improving heart failure care with an Experience-Based Co-Design approach: what matters to persons with heart failure and their family members?
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare. Department of Internal Medicine and Geriatrics, the Highland Hospital (Höglandssjukhuset), Region Jönköping County, Eksjö, Sweden.ORCID iD: 0000-0002-2760-4571
Jönköping University, School of Health and Welfare, The Jönköping Academy for Improvement of Health and Welfare.ORCID iD: 0000-0003-1814-4478
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: 0000-0002-2480-1641
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. The Department of Health Sciences, University West, Trollhättan, Sweden; Department of Behavioral Science, Oslo Metropolitan University, Oslo, Norway.ORCID iD: 0000-0002-7669-4702
2023 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 23, no 1, article id 294Article in journal (Refereed) Published
Sustainable development
Sustainable Development
Abstract [en]

BACKGROUND: Heart failure is a chronic heart condition. Persons with heart failure often have limited physical capability, cognitive impairments, and low health literacy. These challenges can be barriers to healthcare service co-design with family members and professionals. Experience-Based Co-Design is a participatory healthcare quality improvement approach drawing on patients', family members' and professionals' experiences to improve healthcare. The overall aim of this study was to use Experience-Based Co-Design to identify experiences of heart failure and its care in a Swedish cardiac care setting, and to understand how these experiences can translate into heart failure care improvements for persons with heart failure and their families.

METHODS: A convenience sample of 17 persons with heart failure and four family members participated in this single case study as a part of an improvement initiative within cardiac care. In line with Experienced-Based Co-Design methodology, field notes from observations of healthcare consultations, individual interviews and meeting minutes from stakeholders' feedback events, were used to gather participants' experiences of heart failure and its care. Reflexive thematic analysis was used to develop themes from data.

RESULTS: Twelve service touchpoints, organized within five overarching themes emerged. The themes told a story about persons with heart failure and family members struggling in everyday life due to a poor quality of life, lack of support networks, and difficulties understanding and applying information about heart failure and its care. To be recognized by professionals was reported to be a key to good quality care. Opportunities to be involved in healthcare varied, Further, participants' experiences translated into proposed changes to heart failure care such as improved information about heart failure, continuity of care, improved relations, and communication, and being invited to be involved in healthcare.

CONCLUSIONS: Our study findings offer knowledge about experiences of life with heart failure and its care, translated into heart failure service touchpoints. Further research is warranted to explore how these touchpoints can be addressed to improve life and care for persons with heart failure and other chronic conditions.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023. Vol. 23, no 1, article id 294
Keywords [en]
Experience-Based Co-Design, Healthcare quality improvement, Heart failure, Patient and public involvement, Thematic analysis
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
URN: urn:nbn:se:hj:diva-60111DOI: 10.1186/s12913-023-09306-wISI: 000962498500004PubMedID: 36978125Scopus ID: 2-s2.0-85151111282Local ID: GOA;;874896OAI: oai:DiVA.org:hj-60111DiVA, id: diva2:1749849
Funder
Futurum - Academy for Health and Care, Jönköping County Council, SwedenRegion Jönköping CountyAvailable from: 2023-04-11 Created: 2023-04-11 Last updated: 2023-05-04Bibliographically approved
In thesis
1. Co-producing healthcare quality improvement: the prerequisites for, the value of and the lessons from co-production in a Swedish cardiac care setting
Open this publication in new window or tab >>Co-producing healthcare quality improvement: the prerequisites for, the value of and the lessons from co-production in a Swedish cardiac care setting
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Background: The promotion of the best possible health and care is challenging to healthcare organizations worldwide. Healthcare organizations’ capability to improve the quality of care is therefore crucial to the sustainability of the welfare state. Research implies that co-production of healthcare, involving persons with disease, their families and healthcare professionals, has the potential to promote healthcare quality improvement and the best possible health and care. However, the evidence base for co-production in social and healthcare contexts is rather weak. Thus, the overall aim of this thesis was to explore the prerequisites for and the value of co-production and to provide lessons for future co-produced healthcare quality improvement initiatives in cardiac care.

Methods: All studies were conducted in a cardiac care setting in the southern part of Sweden between the years 2016 and 2023. The research had a qualitative design with a practice-oriented interactive research approach, underpinned by healthcare improvement science and pragmatism. Persons with atrial fibrillation or heart failure, their family members, and healthcare professionals participated in the research. Two models for co-production were explored – the Learning Café (LC) and Experience-Based Co-Design (EBCD). Data collection included patients’ ratings regarding their sense of security in everyday life, focus group interviews, project documentation, individual interviews, field notes from observations, and meeting minutes from stakeholders’ individual and joint EBCD feedback events. Data analysis entailed inductive or deductive qualitative content analysis and reflexive thematic analysis. Self-determination theory, the COM-B model and the MUSIQ framework were applied during the research process to promote an in-depth understanding of the concept of co-production.

Findings: This research exemplifies a learning journey toward co-production in a Swedish cardiac care setting. Barriers to and facilitators of co-production were identified on different levels – the individual, the relational and the systemic levels. Individual barriers to co-production included poor health and limited health literacy among persons with heart disease. Relational barriers included professionals not inviting patients and their family members to be involved in healthcare co-4 production. Barriers on the systemic level included time and resource constraints and varying understanding of how co-production might be applied in practice. Both self-centered motivations, such as wanting to learn more about a specific disease, and community-centered motivations, such a wanting to improve healthcare services, were identified to be facilitators to co-production. The LC and the EBCD process created value for its participants and the organization, including improved disease knowledge; relatedness; strengthened coping strategies and improved self-efficacy; awareness about the patient and family member perspective; and knowledge about what needs to change in heart failure care.

Conclusions: This thesis proposes how healthcare co-production might be practiced, particularly in cardiac care contexts which have seen only limited implementation of such initiatives. Self-centered motivations to co-produce were common among persons with heart disease and their family members, whereas community-centered motivations dominated among professionals. Future co-production initiatives should draw on these motivations. Furthermore, future co-production initiative should seek to overcome barriers to co-production by letting stakeholders participate on their own terms, by promoting a cultural change toward shared power between patients, family members and professionals and by encouraging healthcare leaders and mangers to support healthcare quality improvement. Furthermore, this thesis proposes that co-production brings value to its stakeholders in terms of improved coping strategies persons with heart disease and family members and enhanced work satisfaction among professionals. Future research is warranted to understand how co-production might be implemented and play out in various healthcare contexts and with other groups of persons living with chronic disease.

Abstract [sv]

Bakgrund: Att kunna erbjuda bästa möjliga vård är en utmaning för hälso- och sjukvårdsorganisationer världen över. Organisationernas förmåga att förbättra vårdens kvalitet är därför avgörande för framtiden. Forskning tyder på att samskapande av hälso- och sjukvård (engelskans co-production of healthcare), som involverar personer med sjukdom, deras familjer och vårdpersonal, främjar bästa möjliga hälsa och vård. Det övergripande syftet med denna avhandling var att utforska förutsättningar för och värdet av samskapande och att identifiera främjande lärdomar för framtida samskapade kvalitetsförbätt-ringsinitiativ inom sjukvården.

Metod: Samtliga studier genomfördes inom hjärtsjukvården i södra Sverige mellan åren 2016-2023. Studierna hade en kvalitativ design med en interaktiv forskningsansats. Personer med förmaksflimmer eller hjärtsvikt, deras familjer och sjukvårdspersonal deltog i forskningsstudierna. Två modeller för samskapande utforskades – lärcafé och erfarenhetsbaserad verksamhetsutveckling (engelskans Experience-Based Co-Design, EBCD). Datainsamlingen inkluderade patientskattningar avseende trygghetskänsla, fokusgruppsintervjuer, projektdokumentation, individuella intervjuer, fältanteckningar från observationer och mötesprotokoll från individuella och gemensamma EBCD-sammankomster. Data analyserades med induktiv eller deduktiv kvalitativ innehållsanalys och reflexiv tematisk analys.

Resultat: Hindrande och underlättande faktorer för samskapande identifierades på olika nivåer – den individuella, den relationella och den systemiska nivån. Individuella hinder för samskapande bestod av nedsatt hälsa och begränsad hälsoliteracitet hos personer med hjärtsjukdom. Relationella hinder bestod av att inte bli inbjuden att samskapa. Hinder på systemnivån bestod av brist på tid och resurser samt varierande förståelse för hur samskapande kan tillämpas i praktiken. Deltagarnas motivation för att deltaga i projekten främjade samskapande och varierade från att deltaga för sin egen skull till att deltaga för att förbättra vården för andra med liknande utmaningar till6 följd av kronisk sjukdom. Lärcaféet och EBCD-processen skapade ett värde för deltagarna och organisationen, framför allt förbättrad sjukdomskunskap, stöd från andra med liknande erfarenheter, stärkta strategier för att hantera sjukdom och självförmåga, ökad medvetenhet om patient- och närståendeperspektiv samt kunskap om vad som behöver förändras inom hjärtsviktsvården.

Slutsatser: Avhandlingen visar hur samskapande kan tillämpas inom hjärtsjukvård. Personer med hjärtsjukdom och deras familjer deltog i projekten främst för sin egen skull medan medarbetare huvudsakligen deltog för att förbättra vården för andra som lever med kronisk sjukdom. Framtida samskapandeprojekt behöver utgå från dessa motiverande faktorer. Framtida projekt bör dessutom sträva efter att övervinna de faktorer som hindrar samskapande genom att låta deltagare deltaga på sina egna villkor, genom att främja en kulturförändring inom hälso- och sjukvården mot delad makt mellan patienter, närstående och medarbetare och genom att uppmuntra chefer till att stötta vården förändringsarbete. Vidare ger denna avhandling en ökad förståelse för det värde som samskapandet genererar i form av förbättrad sjukdomsbemästring bland personer med hjärtsjukdom och deras familjer samt förbättrad arbetstillfredsställelse bland medar-betare. Framtida forskning behövs för att förstå hur samskapande av hälso- och sjukvård kan överföras till andra vårdmiljöer för och med andra grupper av personer som lever med kroniska sjukdom.

Place, publisher, year, edition, pages
Jönköping: Jönköping University, School of Health and Welfare, 2023. p. 145
Series
Hälsohögskolans avhandlingsserie, ISSN 1654-3602 ; 127
Keywords
Co-production of healthcare; cardiac care; atrial fibrillation; heart failure; healthcare quality improvement; healhtcare improvement science; pragmatism; Learning Café, Experience-Based Co-Design; COM-B; Self-Determination Theory; MUSIQ; case study; content analysis; reflexive thematic analysis
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:hj:diva-60270 (URN)978-91-88669-29-2 (ISBN)978-91-88669-30-8 (ISBN)
Public defence
2023-06-02, Forum Humanum, School of Health and Welfare, Jönköping, 13:00 (English)
Opponent
Supervisors
Available from: 2023-04-27 Created: 2023-04-27 Last updated: 2023-06-13Bibliographically approved

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Suutari, Anne-MarieThor, JohanNordin, AnnikaAreskoug Josefsson, Kristina

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