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What matters in care continuity on the chronic care trajectory for patients and family carers?—A conceptual model
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences.ORCID iD: 0000-0003-0338-7610
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Karolinska Institutet, Sweden.
Karolinska Institutet, Sweden;Umeå University, Sweden.
Linnaeus University, Faculty of Health and Life Sciences, Department of Health and Caring Sciences. Linnaeus University, Linnaeus Knowledge Environments, Sustainable Health. Karolinska Institutet, Sweden. (Reaction)ORCID iD: 0000-0002-4108-391x
2022 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 31, no 9-10, p. 1327-1338Article in journal (Refereed) Published
Sustainable development
SDG 3: Ensure healthy lives and promote well-being for all at all ages
Abstract [en]

Abstract Aims and Objectives

To describe essential aspects of care continuity from the perspectives of persons with complex care needs and their family carers.

Background

Continuity of care is an important aspect of quality, safety and efficiency. For people with multiple chronic diseases and complex care needs, care must be experienced as connected and coherent, and consistent with medical and individual needs. The more complex the need for care, the greater the need for continuity across different competencies, services and roles.

Design

A constructivist grounded theory approach was applied.

Methods

Sixteen patients with one or more chronic diseases needing both health care and social care, living in their private homes, and twelve family carers, were recruited. Semi-structured interviews were conducted and analysed with constructivist grounded theory. The COREQ checklist was followed.

Results

A conceptual model of care continuity was constructed, consisting of five categories that were interconnected through the core category: time and space. Patients' and family carers' experiences of care continuity were closely related to timely personalised care delivery, where access to tailored information, regardless of who was performing a care task, was essential for mutual understanding. This required clarity in responsibilities and roles, interprofessional collaboration and achieving a trusting relationship between each link in the chain of care, over time and space. To achieve care continuity, all the identified categories were important, as they worked in synergy, not in isolation.

Conclusion

Care continuity for people with complex care needs and family carers is experienced as multidimensional, with several essential aspects that work in synergy, but varies over time and depends on each person's own resources and situational and contextual circumstances.

Relevance to clinical practice

The findings promote understanding of patients' and family carers' experiences of care continuity and may guide the delivery of care to people with complex care needs.

Place, publisher, year, edition, pages
John Wiley & Sons, 2022. Vol. 31, no 9-10, p. 1327-1338
Keywords [en]
Complex care needs, Constructivist grounded theory, Continuity of care, Family carer
National Category
Nursing
Research subject
Health and Caring Sciences, Nursing
Identifiers
URN: urn:nbn:se:lnu:diva-106115DOI: 10.1111/jocn.15989ISI: 000681361900001PubMedID: 34351651Scopus ID: 2-s2.0-85111861482Local ID: 2021OAI: oai:DiVA.org:lnu-106115DiVA, id: diva2:1583915
Available from: 2021-08-10 Created: 2021-08-10 Last updated: 2023-09-26Bibliographically approved
In thesis
1. Patients’ experiences of continuity of care: What is needed and how can it be measured?
Open this publication in new window or tab >>Patients’ experiences of continuity of care: What is needed and how can it be measured?
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Aim: The overall aim for this thesis was to explore continuity of care through patients’, family carers’, and health care personnel’s perceptions, and to develop and evaluate a patient-reported experience measure of continuity of care.

Method: This thesis consists of four studies; I have a qualitative explorative design and II have a qualitative descriptive design, whereas III and IV are methodological studies. In studies I and II, data were collected from four geographically disparate areas in Sweden; in studies III and IV, data were collected in one of these areas. Data were collected using individual (I, II, III), focus groups, pair interviews (II), and questionnaires (III, IV). Data were analyzed using constructivist grounded theory (I), conventional content analysis (II), and according to classical test theory (III), and Rasch measurement theory (IV).

Results: For patients to experience continuity of care, all aspects were interconnected, as access to tailored information was essential for gaining mutual understanding regardless of who was performing a care task. This required clarity in responsibilities and roles, interprofessional collaboration, and a trusting relationship over time and space between each link in the patient’s care trajectory (I). Further, Study II showed that to achieve continuity of care, professional and cross disciplinary cooperation at micro, meso and macro levels were needed. Continuity of care is dependent on long-term and person-centered relationships, dynamic stability in the organizational structure, and shared responsibility for cohesive care enabling uniform solutions for knowledge and information exchange (II). Studies III and IV resulted in the Patient-Experienced Continuity of care Questionnaire (PECQ). The instrument contains 20 items measuring four dimensions of continuity of care: Information (four items), Relation (six item), Management (five item), and Knowledge (five item). Overall, the PECQ showed satisfactory measurement properties according to classical test theory and Rasch measurement theory (III, IV) regarding factor structure, unidimensional, local independence, response category function, differential item functioning for age and sex, and internal consistency reliability.

Conclusion: Continuity of care is perceived as multidimensional, containing several important aspects working in synergy and varying over time. To achieve continuity of care, information and knowledge sharing need to cross disciplinary and organizational boundaries. Collaborative responsibility is needed, vertically through all levels of the system, instead of focusing on personal responsibility horizontally. The PECQ can provide information on different dimensions of continuity, useful for driving quality improvements in the primary care context. 

Place, publisher, year, edition, pages
Växjö: Linnaeus University Press, 2023. p. 107
Series
Linnaeus University Dissertations ; 506
National Category
Nursing
Research subject
Health and Caring Sciences, Caring Science
Identifiers
urn:nbn:se:lnu:diva-124894 (URN)10.15626/LUD.506.2023 (DOI)9789180820790 (ISBN)9789180820806 (ISBN)
Public defence
2022-10-20, Azur, Hus vita, Kalmar, 09:00 (Swedish)
Opponent
Supervisors
Funder
Forte, Swedish Research Council for Health, Working Life and Welfare, 2017-00202
Available from: 2023-09-26 Created: 2023-09-26 Last updated: 2024-03-19Bibliographically approved

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Ljungholm, LindaEkstedt, Mirjam

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