Abstract
BackgroundPeople with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards.ObjectiveThe aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff.MethodsThe study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories.ResultsThe key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors.ConclusionsPeople with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect.
Highlights
Management of long-term health conditions is important in terms of costs to health services, and the personal and financial costs to individuals [1]
The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors
This study focuses on the expectations that e-patients with a long-term condition have of their doctors
Summary
Management of long-term health conditions is important in terms of costs to health services, and the personal and financial costs to individuals [1]. It has been suggested that greater partnership and sharing of expertise between staff and patients is needed [2] This changes the relationship that has traditionally existed between health care staff and patients so that how each party sees and enacts their role—and the expectations they have of one another—has become an important part of managing long-term conditions. Doubts have been expressed about whether patients can attain expertise in the theory behind disease processes and management [4]; there have been suggestions that people who live with long-term conditions may attain greater medical or technical knowledge of their condition than some health care staff [5,6]. The principle of sharing expertise is regularly articulated, whether health care staff accept that patient expertise is as valid and important for condition management as their own has been questioned [4]
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