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BACKGROUND: There is a lack of knowledge about patients' journeys across the stroke care continuum, especially regarding the transition from inpatient to outpatient care and rehabilitation. Therefore, the aim of the present study was to explore and describe patterns of healthcare use over a one-year period, health outcomes at 3 and 12 months for patients following a referral-based transition to subsequent rehabilitation in the home, and the caregiver burden on their significant others. A further aim was to explore factors associated with the use of rehabilitation and healthcare after the referral-based transition to continued rehabilitation in the home for people recovering from a stroke.

METHODS: Data regarding healthcare use during the first 12 months post-stroke was collected from the Region Stockholm computerized register. Data on patient characteristics, disease-related data, and functioning were retrieved drawn from medical records and questionnaires. Descriptive statistics were used to present healthcare use, participants' characteristics, disease-related data, and patient functioning. Multivariable regression models were created to explore associations between the total number of outpatient contacts, total visits with the neurorehabilitation team, and the independent variables.

RESULTS: The mean age for the 190 participants was 73 years for men and 78 years for women. Twenty-one participants (11%) had an acute rehospitalization within 30 days after discharge, and 41 participants (21%) were re-hospitalized within 90 days. Twenty-two (12%) of the participants had no visits with the neurorehabilitation team, 73 (39%) participants had 1-3 visits, 57 (30%) had 4-16 visits, and 38 (20%) had ≥17 visits. Female sex and length of hospital stay were associated with a higher number of visits with the neurorehabilitation team. Living alone, higher self-rated recovery, and being able to walk independently were associated with a lower number of visits with the neurorehabilitation team. Female sex, having home help services before the stroke, longer length of hospital stay, and more comorbidities were associated with a higher number of outpatient contacts.

CONCLUSIONS: The findings indicate that there is no generic pattern of healthcare use during the first-year post-stroke in patients receiving referral-based transition to continued rehabilitation in the home. The different patterns of healthcare use seemed to mirror the participants' level of functioning. However, there is a need to further investigate how follow-up and rehabilitation correspond to the needs of patients and their significant others in the short- and long-term perspective.

TRIAL REGISTRATION: ClinicalTrials.gov , registration number: NCT02925871 . Date of registration: October 6, 2016.

OBJECTIVES: To explore the perceived quality of care transitions from hospital to the home with referral to subsequent rehabilitation in the home, and factors associated with low perceived quality, in people with stroke.

DESIGN: Observational study.

SETTING AND PARTICIPANTS: Eligible were patients with a suspected acute stroke admitted to 1 of 4 inpatient hospital units in the Stockholm region and discharged home with referral to a neurorehabilitation team in primary care.

METHODS: Data on perceived quality of care transition was collected with the Care Transition Measure (CTM-15) 1 week after discharge. Additional data were mainly retrieved from medical records. To analyze difference in mean total score of the CTM-15 between participants' characteristics, length of hospital stay, disease-related data, and functioning, the Mann-Whitney U test and independent sample t test were used for dichotomized variables and 1-way analysis of variance and the Tukey post hoc test for variables with more than 2 groups. To analyze differences between participants with low and high perceived quality per item, univariable regression analyses were performed. Thereafter, multivariable regression models were created to explore associations between low perceived quality and the independent variables.

RESULTS: Mean age of the 189 participants was 75 years and 91% had a mild or very mild stroke. The majority perceived most areas of the care transition to be of high quality. Nevertheless, several areas for improvement were identified. People with a more severe stroke perceived the quality of the care transition to be lower in comparison with those with a mild stroke. The association was weak between patient or clinical characteristics and the perceived quality.

CONCLUSION AND IMPLICATIONS: Our findings suggest that preparation for discharge and information and support for self-management postdischarge should be enhanced in the referral-based care transition after stroke. Special attention should be given to people with severe stroke.

INTRODUCTION: Care transitions are a complex set of actions that risk poor quality outcomes for patients and their significant others. This study explored the transition process between hospital and continued rehabilitation in the home. The process is explored from the perspectives of people with stroke, significant others and healthcare professionals in Stockholm, Sweden.

METHOD: Focus group interviews (n = 10), semi-structured individual interviews (n = 23) and interviews in dyad (n = 4) were conducted with healthcare professionals, people with stroke and significant others, altogether 71 participants. Data was collected and analyzed using Grounded Theory.

RESULTS: One core category "Perceptive dialogue for a coordinated transition", and two categories "Synthesis of parallel processes for common understanding" and "The forced transformation from passive attendant to uninformed agent" emerged from the analysis. The transition consisted of several parallel processes which made it difficult for the stakeholders to get a common understanding of the transition as a whole. Enabling a perceptive dialogue was as a prerequisite for the creation of a common understanding of the care transition.

CONCLUSION: This study elucidates that a perceptive dialogue with patients/significant others as well as within and across organizations is part of a coordinated and person-centred transition. There is an extensive need for increased involvement of patients and significant others regarding dialogue about health conditions, procedures at the hospital and preparation for self-management after discharge.

BACKGROUND: Despite intentions to increase user participation in the development of health services, the concept of participation and how it unfolds within studies with a participatory design has rarely been addressed.

OBJECTIVE: The aim of this study was to describe how user participation manifests itself within a co-design process involving patients, significant others and health-care professionals, including potential enablers or barriers.

METHODS: This study was conducted in the context of a co-design process of a new person-centred transition from a hospital to continued rehabilitation in the home involving three patients with stroke, one significant other and 11 professionals. Data were collected by observations during the workshops, semi-structured interviews and questionnaires.

RESULTS: Four categories: 'Composition of individuals for an adaptive climate'; 'The balancing of roles and power'; 'Different perspectives as common ground for a shared understanding'; and 'Facilitating an unpredictable and ever-adaptive process', with all together nine subcategories, resulted from the analysis. Participation varied between individuals, groups and steps within the process, and on the topic of discussions and the motivation to contribute.

DISCUSSION/CONCLUSION: Participation is not something that is realized by only applying participatory design methodology. Participation manifests itself through the interaction of the participants and their skills to handle different perspectives, roles and assignments. Participation is enabled by individual, group and facilitating aspects. Co-design processes should allow for varying levels of participation among the participants and throughout the process.

PATIENT OR PUBLIC CONTRIBUTION: Patients, significant others and health-care professionals participated as co-designers of a care transition model between hospital and home.