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COPD in primary care: exploring conditions for implementation of evidence-based interventions and eHealth
Umeå University, Faculty of Medicine, Department of Community Medicine and Rehabilitation, Physiotherapy.
2018 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Chronic obstructive pulmonary disease (COPD) is a major public health problem. Symptoms and comorbidities associated with COPD affect the whole body. Clinical guidelines for COPD recommend pulmonary rehabilitation (PR) including exercise training and education promoting self-management strategies. Despite the positive effects on health status, few people with COPD have access to PR. Electronic health (eHealth) has been seen as promising for increased access to evidence-based interventions. To increase the likelihood of a successful implementation, it is important to identity enablers and barriers that might affect implementation outcomes. The aim of this thesis is to explore the experiences, interactions and contexts of the management of COPD in primary care, as well as the design, experienced relevance, effect and expected usefulness of eHealth solutions.

The thesis is based on four papers that have used qualitative, quantitative and mixed methods. Qualitative interviews (papers I, II, IV) and focus group discussions (paper IV) were analysed using qualitative content analysis (papers I, IV) and grounded theory (paper II). Quantitative data, collected using questionnaires (paper I) and in a systematic review (paper III) was analysed with descriptive statistics (paper I) and meta-analysis (paper III). The qualitative and quantitative findings in paper I and II were merged in a mixed methods design. Participants in the studies included healthcare professionals (papers I, IV), people with COPD (papers II, III, IV), their relatives (paper IV), senior managers representing primary care centres (paper I), and external researchers (paper IV).

The findings in this thesis gave insight in the complex interactions within COPD management between the healthcare organisation (e.g. resources and priority), healthcare professionals (e.g. attitudes, collaboration and competence) and people with COPD (e.g. emotions, attitudes and coping). The healthcare organisation is fragmented with few resources and COPD care takes low priority. The healthcare professionals are Building COPD care on shaky ground (paper I), where the shaky ground is a presentation of the non-compliant organisation and other challenging circumstances. Driven, responsible and ambitious healthcare professionals wish to provide empowering COPD interventions through interprofessional collaboration, but are inhibited by their limited knowledge of and experience with COPD. People with COPD are (Re)acting in an ambiguous interaction with primary care providers (paper II), have limited knowledge and struggle with stigma, while they try to accept and manage their disease. The attitudes and support of healthcare professionals’ are essential for necessary interaction and self-management strategies. For people with COPD, this can take different paths: either enhancing confidence with empowering support or coping with disempowering stigma and threat.

eHealth solutions such as telehealth, have been used to provide interventions to people with COPD through phone calls, websites or mobile phones, in combination with exercise training and/or education. They show a significant effect on physical activity level, but not on physical capacity and dyspnoea (paper III). Healthcare professionals, people with COPD and their relatives, and external researchers report that, to be useful and relevant in clinical practice, an eHealth tool should be reinforcing existing support structures (paper IV). Furthermore, it needs to fit in the current routines and contexts and create a sense of commitment in its users. According to the participants, information about selfmanagement strategies, such as how-to videos are valuable, and need to help them identify themselves with the people in the videos. The participants regard eHealth as providing knowledge and support for self-management.

In conclusion, there is a need for implementation of clinical guidelines for COPD in primary care in order to improve both the management of COPD, as well as the interaction between healthcare professionals and people with COPD. Several actions are needed to facilitate this implementation. The priority and status of COPD management in primary care need to be raised. In addition, more resources (e.g. healthcare professionals) for COPD interventions is required to enhance the conditions for interprofessional collaboration and patient participation. Furthermore, it is important to include physiotherapists in COPD management, considering the focus on exercise training and physical activity. Healthcare professionals in primary care need further training and more time to educate and empower people who have COPD. The use of eHealth may lead to improvements in patient outcomes, although more research on web-based interventions is required. User involvement in the development process of an eHealth tool increases its usefulness and relevance in clinical practice and everyday life. The findings from this thesis may guide implementation processes in primary care, as well as the development of eHealth tools for people with COPD or other long-term conditions.

Abstract [sv]

Kroniskt obstruktiv lungsjukdom (KOL) är en av våra vanligaste folksjukdomar. Sjukdomen orsakar mycket lidande hos de drabbade och ger mycket kostnader för samhället. Det vanligaste symtomet vid KOL är andnöd, men även andra delar av kroppen blir drabbade. Nedsatt fysisk förmåga, viktnedgång och depression är några vanliga symtom. Nedsatt fysisk aktivitetsnivå är också vanligt, vilket är särdeles allvarligt eftersom det kan förutsäga risk för tidig död. Tidigare forskning har visat att lungrehabilitering ger många positiva hälsoeffekter hos personer med KOL. Lungrehabilitering innehåller fysisk träning och utbildning med syfte att lära sig hantera sin sjukdom. Lungrehabilitering rekommenderas i behandlingsriktlinjer för KOL. Men trots det är det få personer med KOL som får tillgång till detta. Därför är det viktigt att hitta sätt att nå ut till personer med KOL med effektiv behandling. Elektronisk hälsa (eHälsa) har föreslagits som en strategi. eHälsa handlar om vård på distans, till exempel att få information och stöd via internet. För att kunna implementera nya arbetssätt i hälso- och sjukvården är det viktigt att känna till vilka förutsättningar som finns i dagsläget.

Avhandlingen baseras på fyra delstudier. Syftet är att utforska upplevelser, interaktion och kontext kopplat till KOL-vården i primärvården. Dessutom, att utforska design och effekt av eHälso-lösningar, samt hur användarna upplever dess relevans och vad de förväntar sig för nytta vid användning av ett eHälsoverktyg. Individuella intervjuer och diskussioner i fokusgrupper genomfördes med personer med KOL, anhöriga, sjukvårdspersonal samt forskare. Utskrifter från intervjuer och diskussioner analyserades med kvalitativ innehållsanalys och grundad teori. Frågeformulär besvarades av sjukvårdspersonal och verksamhetschefer i primärvården och analyserades sedan med beskrivande statistik. Tidigare forskningsstudier om eHälsa samlades ihop i en systematisk forskningssammanställning och analyserades gemensamt i en metaanalys. Resultaten från analyser av individuella intervjuer och svar från frågeformulär från två av delstudierna har dessutom sammanfogats i en mixad metod.

Resultaten i den här avhandlingen ger insikter kring komplexa interaktioner inom KOL-vården, mellan sjukvårdsorganisationen (t.ex. resurser och prioritering), sjukvårdspersonal (t.ex. attityder, samarbete och kompetens) och personer med KOL (t.ex. känslor, attityder och hantering av sjukdom). Sjukvårdsorganisationen kännetecknas av ett splittrat och otydligt ansvar mellan olika delar i organisationen samt brist på resurser. KOL-vården är dessutom lågt prioriterad och präglas av bristfälliga rutiner. Den ambitiösa och drivande sjukvårdspersonalen upplever att de bygger KOL-vård på en ostadig grund, där den ostadiga grunden illustrerar den svårpåverkade organisationen och andra utmanande förutsättningar. De är vana vid att styra över det dagliga arbetet med patienter och strävar efter att erbjuda en stödjande och stärkande KOL-vård med interprofessionell samverkan, men de hindras av bristande kunskap kring och erfarenhet av KOL. Personer med KOL har bristande kunskap och insikt, hanterar känslor av skuld, skam och rädsla, samtidigt som de försöker hantera och acceptera sin sjukdom. De (re)agerar i en mångtydig interaktion med sjukvårdspersonal i primärvården. Sjukvårdspersonalens attityder, bemötande och stöd är mycket viktiga i interaktionen och påverkar hur personer med KOL hanterar sin sjukdom. De kan få en stärkt självtillit med hjälp av stärkande stöd, eller måsta hantera nedbrytande stigmatisering och rädslor.

Tidigare studier visar att personer med KOL som har fått stöd och råd via telefon, hemsidor eller mobiltelefon ökar sin fysiska aktivitetsnivå jämfört med dem som inte har fått det. Ingen skillnad mellan grupperna hittades för fysisk förmåga och andnöd. Åtgärden kombinerades ofta med fysisk träning och/eller utbildning. Gruppen som de jämfördes med fick antingen ordinarie KOL-vård eller fysisk träning och/eller utbildning. Sjukvårdspersonal, personer med KOL och deras anhöriga, samt forskare betonar vikten av att ett eHälso-verktyg förstärker den befintliga KOL-vården om det ska vara användbart och relevant i primärvården. Det behöver passa i nuvarande rutiner och vanor för att det ska vara möjligt att tillämpa det direkt. Vidare tycker de att det är viktigt att användarna känner att informationen passar deras individuella behov och egenskaper, samt att det engagerar dem. Filmer anges som ett lämpligt sätt att presentera information om strategier för att hantera sin sjukdom i ett eHälso-verktyg. eHälsa anses av deltagarna kunna öka kunskap och ge stöd för att hantera sin sjukdom.

Sammanfattningsvis visar avhandlingen att det finns ett stort behov av att implementera behandlingsriktlinjer för KOL i primärvården för att förbättra både KOL-vården och interaktionen mellan sjukvårdspersonal och personer med KOL. Flera insatser behövs för att underlätta implementeringen. Prioriteringen av KOL behöver höjas och ökade resurser till KOL-vården krävs för att ge förutsättningar för interprofessionell samverkan och patientmedverkan. Det är viktigt att involvera fysioterapeuter i KOL-vården med tanke på vikten av fysisk träning och fysisk aktivitet för personer med KOL. Sjukvårdspersonalen i primärvården behöver ökad kompetens och mer tid avsatt för att kunna utbilda och stärka personer med KOL. Användningen av eHälsa kan leda till förbättringar av KOL-vården, men det behövs mer forskning kring internet-baserad eHälsa. Om de framtida användarna involveras i utvecklingen av eHälso-verktyg, ökar användbarheten och relevansen i deras vardag och sammanhang.

Resultaten från den här avhandlingen kan ge vägledning vid implementering av behandlingsriktlinjer i primärvården och vid utveckling av nya eHälso-verktyg. Många av resultaten kan användas även vid arbete med personer med andra långvariga tillstånd, utöver KOL.

Place, publisher, year, edition, pages
Umeå: Umeå universitet , 2018. , p. 70
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1982
Keywords [en]
COPD, primary care, implementation, eHealth, qualitative, mixed methods, meta-analysis
Keywords [sv]
KOL, primärvård, implementering, eHälsa, Kvalitativ, mixad metod, metaanalys
National Category
Physiotherapy
Research subject
Physiotherapy
Identifiers
URN: urn:nbn:se:umu:diva-152609ISBN: 978-91-7601-941-2 (print)OAI: oai:DiVA.org:umu-152609DiVA, id: diva2:1256045
Public defence
2018-11-09, Aulan, Vårdvetarhuset, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Funder
Swedish Heart Lung FoundationThe Swedish Heart and Lung AssociationSwedish Research CouncilAvailable from: 2018-10-19 Created: 2018-10-15 Last updated: 2018-10-29Bibliographically approved
List of papers
1. Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective
Open this publication in new window or tab >>Building COPD care on shaky ground: a mixed methods study from Swedish primary care professional perspective
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2017 (English)In: BMC Health Services Research, ISSN 1472-6963, E-ISSN 1472-6963, Vol. 17, article id 467Article in journal (Refereed) Published
Abstract [en]

Background: Chronic obstructive pulmonary disease (COPD) is a public health problem. Interprofessional collaboration and health promotion interventions such as exercise training, education, and behaviour change are cost effective, have a good effect on health status, and are recommended in COPD treatment guidelines. There is a gap between the guidelines and the healthcare available to people with COPD. The aim of this study was to increase the understanding of what shapes the provision of primary care services to people with COPD and what healthcare is offered to them from the perspective of healthcare professionals and managers.

Methods: The study was conducted in primary care in a Swedish county council during January to June 2015. A qualitatively driven mixed methods design was applied. Qualitative and quantitative findings were merged into a joint analysis. Interviews for the qualitative component were performed with healthcare professionals (n = 14) from two primary care centres and analysed with qualitative content analysis. Two questionnaires were used for the quantitative component; one was answered by senior managers or COPD nurses at primary care centres (n = 26) in the county council and the other was answered by healthcare professionals (n = 18) at two primary care centres. The questionnaire data were analysed with descriptive statistics.

Results: The analysis gave rise to the overarching theme building COPD care on shaky ground. This represents professionals driven to build a supportive COPD care on 'shaky' organisational ground in a fragmented and non-compliant healthcare organisation. The shaky ground is further represented by uninformed patients with a complex disease, which is surrounded with shame. The professionals are autonomous and pragmatic, used to taking responsibility for their work, and with limited involvement of the management. They wish to provide high quality COPD care with interprofessional collaboration, but they lack competence and are hindered by inadequate routines and lack of resources.

Conclusions: There is a gap between COPD treatment guidelines and the healthcare that is provided in primary care. To facilitate implementation of the guidelines several actions are needed, such as further training for professionals, additional resources, and improved organisational structure for interprofessional collaboration and patient education.

Place, publisher, year, edition, pages
BioMed Central, 2017
Keywords
Chronic obstructive pulmonary disease, Primary care, Healthcare professionals, Mixed methods, Healthcare system, Organisation, Implementation, Health promotion, Treatment guidelines, Sweden
National Category
Health Care Service and Management, Health Policy and Services and Health Economy
Identifiers
urn:nbn:se:umu:diva-137946 (URN)10.1186/s12913-017-2393-y (DOI)000405243000001 ()
Available from: 2017-08-02 Created: 2017-08-02 Last updated: 2018-10-17Bibliographically approved
2. Enhancing confidence or coping with stigma in an ambiguous interaction with primary care: a qualitative study of people with COPD
Open this publication in new window or tab >>Enhancing confidence or coping with stigma in an ambiguous interaction with primary care: a qualitative study of people with COPD
(English)Manuscript (preprint) (Other academic)
Keywords
Empowerment, self-management, healthcare professionals, grounded theory, ambiguity, COPD, primary care
National Category
Physiotherapy
Research subject
Physiotherapy; Lung Medicine
Identifiers
urn:nbn:se:umu:diva-152608 (URN)
Available from: 2018-10-15 Created: 2018-10-15 Last updated: 2018-10-15
3. Telehealthcare in COPD: a systematic review and meta-analysis on physical outcomes and dyspnea
Open this publication in new window or tab >>Telehealthcare in COPD: a systematic review and meta-analysis on physical outcomes and dyspnea
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2015 (English)In: Respiratory Medicine, ISSN 0954-6111, E-ISSN 1532-3064, Vol. 109, no 1, p. 11-26Article, review/survey (Refereed) Published
Abstract [en]

Background: Only a minority of patients with chronic obstructive pulmonary disease (COPD) have access to pulmonary rehabilitation (PR). Home-based solutions such as telehealthcare, have been used in efforts to make PR more available. The aim of this systematic review was to investigate the effects of telehealthcare on physical activity level, physical capacity and dyspnea in patients with COPD, and to describe the interventions used. 

Methods: Randomized controlled trials were identified through database searches, reference lists and included authors. Articles were reviewed based on eligibility criteria by three authors. Risk of bias was assessed by two authors. Standardized mean differences (SMD) or mean differences (MD) with 95% CI were calculated. Forest plots were used to present data visually.

Results: Nine studies (982 patients) were included. For physical activity level, there was a significant effect favoring telehealthcare (MD, 64.7 min; 95% CI, 54.4-74.9). No difference between groups was found for physical capacity (MD, -1.3 m; 95% CI, -8.1-5.5) and dyspnea (SMD, 0.088; 95% CI, -0.056-0.233). Telehealthcare was promoted through phone calls, websites or mobile phones, often combined with education and/or exercise training. Comparators were ordinary care, exercise training and/or education. 

Conclusions: The use of telehealthcare may lead to improvements in physical activity level, although the results should be interpreted with caution given the heterogeneity in studies. This is an important area of research and further studies of the effect of telehealthcare for patients with COPD would be beneficial.

Place, publisher, year, edition, pages
Elsevier, 2015
Keywords
Telemedicine, physical activity level, physical capacity, symptoms, 6-min walk test
National Category
Physiotherapy
Identifiers
urn:nbn:se:umu:diva-98802 (URN)10.1016/j.rmed.2014.10.008 (DOI)000347097100002 ()
Funder
Swedish Research Council, 522-2009-2694
Available from: 2015-01-27 Created: 2015-01-27 Last updated: 2018-10-17Bibliographically approved
4. Usefulness and relevance of an eHealth Tool in supporting the self-management of chronic obstructive pulmonary disease: explorative qualitative study of a cocreative process
Open this publication in new window or tab >>Usefulness and relevance of an eHealth Tool in supporting the self-management of chronic obstructive pulmonary disease: explorative qualitative study of a cocreative process
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2018 (English)In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 5, no 4, article id e10801Article in journal (Refereed) Published
Abstract [en]

Background: New strategies are urgently needed to support self-management for people with chronic obstructive pulmonary disease (COPD) in primary care. The use of electronic health (eHealth) solutions is promising. However, there is a lack of knowledge about how such eHealth tools should be designed in order to be perceived as relevant and useful and meet the needs and expectations of the health professionals as well as people with COPD and their relatives.

Objective: The objective of this study was to explore the aspects of an eHealth tool design and content that make it relevant and useful for supporting COPD-related self-management strategies from the perspective of health care professionals, people with COPD and their relatives, and external researchers.

Methods: Data were collected during the development of an eHealth tool. A cocreation process was carried out with participants from two primary care units in northern Sweden and external researchers. Individual interviews were performed with health care professionals (n=13) as well as people with COPD (n=6) and their relatives (n=2), and focus group discussions (n=9) were held with all groups of participants. Data were analyzed using qualitative content analysis.

Results: The overarching theme, reinforcing existing support structures, reflects participant views that the eHealth tool needs to be directly applicable and create a sense of commitment in users. Moreover, participants felt that the tool needs to fit with existing routines and contexts and preferably should not challenge existing hierarchies between health care professionals and people with COPD. Important content for health care professionals and people with COPD included knowledge about self-management strategies. Videos were regarded as the most effective method for communicating such knowledge.

Conclusions: The cocreation in the development process enables participant perspectives and priorities to be built into the eHealth tool. This is assumed to contribute to a tool that is useful and relevant and, therefore, adopted into clinical practice and everyday life. Findings from this study can inform the development of eHealth tools for people with COPD in other contexts, as well as the development of eHealth tools for self-management support of other chronic diseases.

Keywords
COPD, eHealth, cocreation, self-management, primary care, chronic disease, user involvement, KOL, eHälsa, egenvård, primärvård, kroniska sjukdomar, samskapande, användarsamverkan
National Category
Physiotherapy
Research subject
Physiotherapy; Lung Medicine
Identifiers
urn:nbn:se:umu:diva-152605 (URN)10.2196/10801 (DOI)30368440 (PubMedID)
Funder
Swedish Research Council, K2014-99X-22572-01-4Swedish Heart Lung Foundation, 20130331
Available from: 2018-10-15 Created: 2018-10-15 Last updated: 2018-11-09Bibliographically approved

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