The meaning of patient involvement and participation in health care consultations: a taxonomy.
ABSTRACT A number of trends, pressures and policy shifts can be identified that are promoting greater patient involvement in health care delivery through consultations, treatments and continuing care. However, while the literature is growing fast on different methods of involvement, little attention has been given so far to the role which patients themselves wish to play, nor even of the conceptual meanings behind involvement or participation. This article reviews the current models of involvement in health care delivery as derived from studies of professional views of current and potential practice, prior to examining the empirical evidence from a large-scale qualitative study of the views and preferences of citizens, as patients, members of voluntary groups, or neither. Individual domiciliary interviews were carried out with 44 people recruited from GP practices in northern England. These respondents were then included in a second phase of 34 focus groups in 6 different localities in northern and southern England, of which 22 were with individuals unaffiliated to any voluntary/community groups, 6 related to local voluntary/community groups with specific interests in health or health care, and 6 related to groups without such specific interests. A final set of 12 workshops with the same samples helped to confirm emergent themes. The qualitative data enabled a taxonomy of patient-desired involvement to be derived, which is contrasted with professional-determined levels of involvement identified from the literature. Participation is seen as being co-determined by patients and professionals, and occurring only through the reciprocal relationships of dialogue and shared decision-making. Not everyone wanted to be involved and the extent to which involvement was desired depended on the contexts of type and seriousness of illness, various personal characteristics and patients' relationships with professionals. These levels are seen to provide basic building blocks for a more sophisticated understanding of involvement within and between these contexts for use by professionals, managers, policy-makers and researchers.
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ABSTRACT: Background Person-centered care emphasizes a holistic, humanistic approach that puts patients first, at the center of medical care. Person-centeredness is also considered a core element of integrated care. Yet typologies of integrated care mainly describe how patients fit within integrated services, rather than how services fit into the patient¿s world. Patient-centeredness has been commonly defined through physician¿s behaviors aimed at delivering patient-centered care. Yet, it is unclear how `person-centeredness¿ is realized in integrated care through the patient voice. We aimed to explore patient narratives of person-centeredness in the integrated care context.Methods We conducted a phenomenological, qualitative study, including semi-structured interviews with 22 patients registered in the Northwest London Integrated Care Pilot. We incorporated Grounded Theory approach principles, including substantive open and selective coding, development of concepts and categories, and constant comparison.ResultsWe identified six themes representing core `ingredients¿ of person-centeredness in the integrated care context: ¿Holism¿, ¿Naming¿, ¿Heed¿, ¿Compassion¿, ¿Continuity of care¿, and ¿Agency and Empowerment¿, all depicting patient expectations and assumptions on doctor and patient roles in integrated care. We bring examples showing that when these needs are met, patient experience of care is at its best. Yet many patients felt `unseen¿ by their providers and the healthcare system. We describe how these six themes can portray a continuum between having own physical and emotional `Space¿ to be `seen¿ and heard vs. feeling `translucent¿, `unseen¿, and unheard. These two conflicting experiences raise questions about current typologies of the patient-physician relationship as a `dyad¿, the meanings patients attributed to `care¿, and the theoretical correspondence between `person-centeredness¿ and `integrated care¿.Conclusions Person-centeredness is a crucial issue for patients in integrated care, yet it was variably achieved in the current pilot. Patients in the context of integrated care, as in other contexts, strive to have their own unique physical and emotional `space¿ to be `seen¿ and heard. Integrated care models can benefit from incorporating person-centeredness as a core element.BMC Health Services Research 11/2014; 14(1):619. · 1.66 Impact Factor
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ABSTRACT: Background Patient 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.Methods The 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.Conclusion Patients 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.BMC Health Services Research 12/2014; 14(1):633. · 1.66 Impact Factor
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ABSTRACT: Patient education is undergoing a paradigm shift in which the perspectives of patients are increasingly being incorporated into learning programs. Access to the users' experience is now considered a prerequisite for the development of quality health services, but how this user experience is incorporated is somewhat unclear. The inclusion of experiential knowledge and user involvement can challenge professional authority, roles, and working methods because knowledge sharing is different from persuasion, professional explanation, and consent. Dialogue and collaboration between professionals and users are essential to effective user involvement; however, little is understood about the characteristics of their collaboration. To describe characteristics of the collaboration between users and health professionals in developing, implementing, and evaluating patient education courses in hospitals. A field study was conducted in three different hospitals. Data collection comprised open observations in meetings of 17 different collaboration groups with a total of 100 participants, and 24 interviews with users and professionals. The data analyses included both thematic and the Systematic Data Integration approach. Two contrasting types of collaboration emerged from the analyses; knowledge sharing and information exchange. The first was characterized by mutual knowledge sharing, involvement, and reciprocal decision making. Characteristics of the second were the absence of dialogue, meagre exploration of the users' knowledge, and decisions usually made by the professionals. Collaboration between users and health personnel takes place in an asymmetric relationship. Mutual knowledge sharing was found to be more than the exchange of information and consultation and also to be a prerequisite for shared decision making. In developing patient education when users are involved the health professionals have the power and responsibility to ensure that knowledge sharing with users takes place.Journal of Multidisciplinary Healthcare 01/2014; 7:551-559.