UNDERSTANDING THE LINKS: THE EXPLORATION OF CARE TRANSITIONS BETWEEN HOSPITAL AND CONTINUED REHABILITATION IN THE HOME AFTER STROKE

Background: Uncoordinated care transitions are known to be a risk of a substantial burden for patients and significant others with a risk of adverse events, rehospitalisation and dissatisfaction with services. After acute hospital care, people with stroke often need continued rehabilitation which entails a care transition such as from hospital to continued rehabilitation in the home environment. Aims: The overall aims of this thesis were to generate knowledge about and describe the care transition process from hospital to the home from the perspective of people with stroke, significant others and healthcare professionals. In addition, the aim was to investigate the concept of participation in a co-design of person-centred care transitions. Methods and participants: Four papers were included. Paper I and II were based on a prospective observational study including 190 people with stroke and 89 significant others. Data were collected from medical records by standardized questionnaires, performance-based tests, and from the Stockholm Region computerized register of healthcare contacts. Paper I was a prospective observational study where data were analysed with descriptive statistics and regression analysis to explore associations between healthcare utilization and independent variables. Paper II was a cross-sectional study where regression analysis was used to explore associations between perceived quality and independent variables. Paper III was a qualitative grounded theory study of the care transition process including 16 people with stroke, 7 significant others and 48 healthcare professionals. Data was collected through focus group interviews, individual interviews, and interviews in dyads. Paper IV included 3 people with stroke, 1 significant other, 10 healthcare professionals and 1 facilitator. Data was collected using observations, field-notes, interviews and questionnaires and was analysed by qualitative content analysis to investigate how participation manifests itself in a co-design process. Results: A majority had a very mild or mild stroke. There was a large variation in the number of visits with the neurorehabilitation team and other outpatient contacts which seemed to correspond to the level of functioning and stroke severity. The perceived quality of the care transitions indicated that there is room for improvements in the discharge process, especially regarding preparation for discharge and support for self-management post-discharge. Few clinical characteristics were associated with the perceived quality of the care transition. The care transition was described to consist of several parallel processes in need of synthetization and coordination in order to provide care transitions based on the needs of people with stroke and significant others. Patients and significant others described the care transition as a transformation from a passive attendant at the hospital to becoming an uninformed agent at home after discharge. The manifestation of participation in a co-design process was shown to be affected by multifactorial interrelated links such as the composition of groups, the climate and adaptations among the participants, the balancing of roles and power, a shared understanding, leadership and adaptive process. Participation varied between individuals, groups, steps within the process and the topic of conversation. Conclusion: The care transition from hospital to continued rehabilitation in the home needs to be adapted to the varying needs of people with stroke and significant others. The preparation for discharge and information and support for self-management need to be enhanced. Patients and significant others need to be involved in their care during all steps of the care transition process. A perceptive dialogue between patients/significant others, healthcare professionals and across organizations is needed to facilitate coordinated and person-centred care transitions. Participation in a co-design process needs to be asserted continuous reflection, discussion and adaption in order to facilitate the unique knowledge and experience of the involved stakeholders.