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.

Background Continuity of care (CoC) implies delivery of services in a coherent, logical and timely fashion. Continuity is conceptualized as multidimensional, encompassing three specific domains - relational, management and informational continuity - with emphasis placed on their interrelations, i.e., how they affect and are affected by each other. This study sought to investigate professionals' perceptions of the prerequisites of CoC within and between organizations and how CoC can be realized for people with complex care needs. Methods This study had a qualitative design using individual, paired and focus group interviews with a purposeful sample of professionals involved in the chain of care for patients with chronic conditions across healthcare and social care services from three different geographical areas in Sweden, covering both urban and rural areas. Transcripts from interviews with 34 informants were analysed using conventional content analysis. Results CoC was found to be dependent on professional and cross-disciplinary cooperation at the micro, meso and macro system levels. Continuity is dependent on long-term and person-centred relationships (micro level), dynamic stability in organizational structures (meso level) and joint responsibility for cohesive care and enabling of uniform solutions for knowledge and information exchange (macro level). Conclusions Achieving CoC that creates coherent and long-term person-centred care requires knowledge- and information-sharing that transcends disciplinary and organizational boundaries. Collaborative accountability is needed both horizontally and vertically across micro, meso and macro system levels, rather than a focus on personal responsibility and relationships at the micro level.

BackgroundContinuity of care is viewed as a hallmark of high-quality care in the primary care context. Measures to evaluate the quality of provider performance are scarce, and it is unclear how the assessments correlate with patients' experiences of care as coherent and interconnected over time, consistent with their preferences and care needs.AimTo develop and evaluate a patient-reported experience measure of continuity of care in primary care for patients with complex care needs.MethodThe study was conducted in two stages: (1) development of the instrument based on theory and empirical studies and reviewed for content validity (16 patients with complex care needs and 8 experts) and (2) psychometric evaluation regarding factor structure, test-retest reliability, internal consistency reliability, and convergent validity. In all, 324 patients participated in the psychometric evaluation.ResultsThe Patient Experienced Continuity of care Questionnaire (PECQ) contains 20 items clustered in four dimensions of continuity of care measuring Information (four items), Relation (six items), Management (five items), and Knowledge (five items). Overall, the hypothesized factor structure was indicated. The PECQ also showed satisfactory convergent validity, internal consistency, and stability.Conclusion/ImplicationsThe PECQ is a multidimensional patient experience instrument that can provide information on various dimensions useful for driving quality improvement strategies in the primary care context for patients with complex care needs.Patient or Public ContributionPatients have participated in the content validation of the items.