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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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The importance of patients taking an active role in their healthcare is recognized internationally, to improve safety and effectiveness in practice. There is still, however, some ambiguity about the conceptualization of that patient role; it is referred to interchangeably in the literature as engagement, involvement, and participation. The aim of this discussion paper is to examine and conceptualize the concepts of patient engagement, involvement, and participation within healthcare, particularly nursing. The concepts were found to have semantic differences and similarities, although, from a nursing perspective, they can be summoned to illustrate the establishment of a mutual partnership between a patient and a nurse. The individualization of such processes requires the joint effort of engagement, involvement, or participation, represented by interactive actions of both the patient (asking questions, telling/speaking up, knowledge acquisition, learning, and decision-making) and the nurse (recognizing, responding, information sharing, teaching, and collaborating). Suggesting that the concepts can be used interchangeably comes with some caution, requiring that nurses embrace patients playing a role in their health and healthcare. Further research and practice development should focus on how patients and nurses receive and respond to each other to establish patient engagement, involvement, and participation.
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Relações Enfermeiro-Paciente , Participação do Paciente , Humanos , Aprendizagem , Disseminação de InformaçãoRESUMO
BACKGROUND: Self-management strategies are crucial to patients with long-term conditions and can presumably promote patient participation, given that to patients, patient participation connotes opportunities for self-care (along with being engaged in an exchange of knowledge, a phrasing of joint goals and planning of care). So far, limited attention has been given to what components support self-management and what outcomes can be achieved. An exclusive self-management programme in primary healthcare entailed assessing its influence on patient participation. AIM: To describe the effects of a self-management programme on preferences for, and experiences of, patient participation in patients with chronic obstructive pulmonary disease or chronic heart failure. METHODS: A randomized controlled trial with a six session intervention programme, including phrasing of individual action plans and group discussions on the patients' issues. The intervention group ( n=59) received standard care and the self-management programme, and the control group ( n=59) received standard care only. Data was collected at baseline and at three months and 12 months after the intervention started, using the Patient Preferences for Patient Participation (the 4Ps) measure. RESULTS: No significant differences were found within the groups, or between the groups, in preferences and experiences of patient participation, either in summary score or at an item level. CONCLUSION: A self-management group programme led by trained primary healthcare staff in primary care did not serve as means to influence patients' experience of patient participation in the care of their long-term condition. Further studies are needed in regard to what facilitates patient participation in this setting and beyond.
