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INTRODUCTION: The implementation and evaluation of patient participation to obtain high-quality transitional care for older people is an international priority. Intermediate care (IC) services are regarded as an important part of the patient's pathway from the specialist to the primary care levels, bridging the gap between the hospital and the home. Patients may experience varying capacities and conditions for patient participation. Yet, few tools for evaluating patients' preferences for patient participation within IC services are at hand. Accordingly, further knowledge is needed to understand and scaffold processes for patient participation in IC. Therefore, the aim of this project was to translate, validate and pilot test the Patient Preferences for Patient Participation (the 4Ps) with patients in IC services in Norway. METHODS: This project comprised two phases: (1) a careful translation and cultural adaptation process, followed by a content validity trial among 15 patients and staff in Norwegian IC and (2) a cross-sectional survey of the instrument with 60 patients admitted to IC. RESULTS: The translation between Swedish and Norwegian required no conceptual or contextual adaptations. The subsequent cross-sectional study, designed as a dialogue between the patients and staff, revealed that only 50% of the participants received a sufficient level of patient participation based on their preferences, mostly indicating that patients were receiving less-than-preferred conditions for engaging in their health and healthcare issues. CONCLUSION: The 4Ps instrument was deemed suitable for measuring patient participation based on patient preferences in the IC context and was feasible for both healthcare professionals and patients to complete in an interview when arriving at and leaving services. This may support person-centred communication and collaboration, calling for further research on what facilitates patient participation and the implementation of person-centred services for patients in IC. PATIENT OR PUBLIC CONTRIBUTION: First, the current paper is part of the IPIC study (i.e., the implementation of patient participation in IC). Influenced by a James Lind Alliance process, the study addresses research uncertainties identified by patients, next of kin, staff and researchers in the cocreation process. Second, cognitive interviewing was conducted with 15 representatives of the target population: seven patients receiving IC services, one home-dwelling previous IC patient (altogether four women and four men, most of them 80 years or older) and seven healthcare staff working in IC services. The interviews determined the relevance, comprehensiveness and clarity of the 4Ps. Finally, 60 patients admitted to IC took part in the cross-sectional study.
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INTRODUCTION: As a transitional care intervention, intermediate care (IC) bridges the pathway for older patients from hospital to home. Within family meetings in IC, the older patient, his or her relatives, the interdisciplinary team and the municipal case manager come together to discuss goals and interventions during the IC stay, including follow-up services after discharge. Although family meetings are a common aspect of teamwork in IC, it is unclear how the voices of older people and their relatives are coming across. The aim of this study is to explore how patient participation is framed and negotiated within family meetings in IC. METHODS: This study is based on qualitative data from the observation of 14 interdisciplinary family meetings in Norwegian IC services. As a theoretical framework, the authors have used the four habits model developed by Frankel and Stein as a lens to understand the interrelated sequence of events that typically takes place during a family meeting and the importance of communication skills to promote patient participation. RESULTS: The thematic analysis resulted in 16 categories and 4 main themes related to the 4 habits model: (i) grounding the family meetings, (ii) what matters to you?, (iii) being empathically present and (iv) the power of a final closure. CONCLUSION: There was considerable variation in the way current family meetings were conducted. It seemed crucial to start the meeting with a proper introduction and explanation of the purpose of the meeting to establish trust and to be able to successfully move to the next stage of eliciting the patients' preferences, views and goals via the 'what matters to you?' QUESTION: There were examples of empathetic communication among meeting participants perceived to facilitate patient participation. Finally, to successfully end the meeting and agree on a shared plan, it seemed crucial for case managers who held the decision-making power to attend the meetings. Framing family meetings in line with the four habits sequential approach may have the potential to assure patient participation and care continuity in IC services. PATIENT OR PUBLIC CONTRIBUTION: This article is part of a larger project based on a James Lind Alliance process that brings patients, relatives, health care professionals and researchers together in priority setting partnerships to identify and prioritize evidence uncertainties that they agree are the most important. Accordingly, the design and content of this article have been initiated and discussed in the project's stakeholder group consisting of one patient representative, one relative representative, two health care professionals from IC settings, two representatives from the Norwegian Health Association and two representatives from the Agency of Health in Norway.
