The results revealed different levels of partner participation. Heart failure home care included good opportunities for both participation and contact during home visits, necessary to meet partners' ongoing need for information to comprehend the situation.

Background To strengthen the patient's position in health care, patient participation has been decreed in policy documents and legalizations. For patients suffering from heart failure, self-care is an important part of disease management and participation is crucial to succeed with this.

BackgroundPatient participation is important for improving outcomes, respect for self-determination and legal aspects in care. However, how patients with heart failure view participation and which factors may be associated with participation is not known. The aim of this study was therefore to describe the influence of structured home care on patient participation over time in patients diagnosed with heart failure, and to explore factors associated with participation in care.MethodsThe study had a prospective pre-post longitudinal design evaluating the influence of structured home care on participation in patients at four different home care units. Patient participation was measured using 3 scales and 1 single item. Self-care behavior, knowledge, symptoms of depression, socio- demographic and clinical characteristics were measured to explore factors associated with patient participation. Repeated measure ANOVA was used to describe change over time, and stepwise regression analyses were used to explore factors associated with patient participation.ResultsOne hundred patients receiving structured heart failure home care were included. Mean age was 82 years, 38 were women and 80 were in New York Heart Association functional class III. One aspect of participation, received information, showed a significant change over time and had increased at both six and twelve months. Better self-care behavior was associated with all four scales measuring different aspects of participation. Experiencing lower degree of symptoms of depression, having better knowledge, being of male sex, being of lower age, cohabiting and having home help services were associated with one or two of the four scales measuring different aspects of participation.ConclusionPatients experienced a fairly high level of satisfaction with participation in care at baseline, and there was a significant improvement over time for participation with regard to received information after being admitted to structured home care. Higher level of patient participation was consistently associated with better self-care behavior. This study shows that patient participation may need to be further focused upon, and that the association with self-care may be interesting to target in future interventions.

ObjectiveEven though continuity is essential after discharge, there is a lack of reliable questionnaires to measure and assess patients’ perceptions of continuity of care. The Patient Continuity of Care Questionnaire (PCCQ) addresses the period before and after discharge from hospital. However, previous studies show that the factor structure needs to be confirmed and validated in larger samples, and the aim of this study was to evaluate the psychometric properties of the PCCQ with focus on factor structure, internal consistency and stability.DesignA psychometric evaluation study. The questionnaire was translated into Swedish using a forward–backward technique and culturally adapted through cognitive interviews (n=12) and reviewed by researchers (n=8).SettingData were collected in four healthcare settings in two Swedish counties.ParticipantsA consecutive sampling procedure included 725 patients discharged after hospitalisation due to angina, acute myocardial infarction, heart failure or atrial fibrillation.MeasurementTo evaluate the factor structure, confirmatory factor analyses based on polychoric correlations were performed (n=721). Internal consistency was evaluated by ordinal alpha. Test–retest reliability (n=289) was assessed with intraclass correlation coefficient (ICC).ResultsThe original six-factor structure was overall confirmed, but minor refinements were required to reach satisfactory model fit. The standardised factor loadings ranged between 0.68 and 0.94, and ordinal alpha ranged between 0.82 and 0.95. All subscales demonstrated satisfactory test–retest reliability (ICC=0.76–0.94).ConclusionThe revised version of the PCCQ showed sound psychometric properties and is ready to be used to measure perceptions of continuity of care. High ordinal alpha in some subscales indicates that a shorter version of the questionnaire can be developed.

Introduction: Patient participation is important for improving outcomes and respecting selfdetermination and legal aspects in care. Heart failure is a chronic condition that puts high demands on self-care and patient participation. Patients often need advanced care due to deterioration of their heart failure symptoms, and one option is to provide care as home-care. There is limited knowledge of how patients with heart failure and their partners view participation in home-care. Aim: The overall aim of this thesis was to describe different perspectives of participation in structured heart failure home-care among patients with heart failure and their partners. Methods: All patients in this thesis received structured heart failure home-care, according to a model aiming to facilitate care, where safety, participation, and gaining knowledge about the illness and treatment, are in focus. Study I had a prospective pre-post longitudinal design including 100 patients with heart failure receiving home-care. Data was collected by selfadministered questionnaires. Study II had a descriptive design. Nineteen patients receiving home-care were interviewed, and data was analysed using qualitative content analysis. Study III had a descriptive and explorative design. Data was collected by video-recorded observations of 19 home visits and analysed by qualitative content analysis. Study IV had a parallel convergent mixed-method design including 15 partners of patients receiving structured home-care. Data was collected by interviews and self-administered questionnaires. Datasets were first analysed separately and then together. Results: Better self-care behaviour was significantly associated with all measured aspects of participation. Participation by received information increased significantly during the 12-month follow-up (I). Patients’ descriptions of participation included communication between patients and health care professionals, access to care, active involvement in care, a trustful relation with health care professionals, and options for decision-making(II). Observed care encounters revealed that participation was made possible by; (i) interaction, including exchange of care-related information, care-related reasoning, and collaboration, (ii) an enabling approach, including the patient expresses own wishes and shows an active interest, and the nurse is committed and invites to a dialogue (III). Partners scored fairly positive for their participation in care and they performed different levels of caregiving tasks. Descriptions of participation included; adapting to the caring needs and illness trajectory, mastering caregiving demands, interacting with care providers, and gaining knowledge to comprehend the health situation. The mixed-method results showed both convergent results and expanded knowledge (IV). Conclusions: Structured heart failure home-care facilitated participation both for patients and their partners. Patient participation with regard to received information improved significantly after receiving home-care. As...