What happens when you involve patients as experts? a participatory action research project at a renal failure unit

Abstract

Although there is a trend towards developing health care in a patient-centred direction, changes are usually planned by the professionals without involving the patients. This paper presents an ongoing participatory action research project where patients with chronic renal failure, nurses at a specialist renal failure unit, a hospital manager and a researcher worked together to develop patient-centred care. The project combined the expertise of patients in their own experiences of living with a chronic condition with the professional expertise of nurses, the manager and the researcher. As the workload on the unit was uneven, the development work needed to be low in intensity but long-term. Based on a number of dialogues in focus groups, four main development areas were identified; access to test results, prerequisites for postponing the progress of the illness, general awareness and understanding of living with chronic renal failure, and family-focused care. A number of changes have been planned or implemented, such as developing a prototype for a web-based feed-back system, expanding patient education to newly diagnosed patients, steering the nurses' role towards a guiding and family-focused function, and planning a digital story-telling workshop. Involving committed people who have the mandate to change practices were prerequisites for success.

Challenges in everyday life among recently diagnosed and more experienced adults with type 2 diabetes: A multistage focus group study

“…Narrative communication including sharing experiences and learning from each other in person‐centred care (Ekman et al., ) may ensure effective treatment of long‐term conditions that fit into people's everyday lives. Treating individual patients as the experts on their own everyday lives (Blomqvist, Theander, Mowide, & Larsson, ; Paterson, ) may be helpful in self‐management education. When diabetes nurses or other healthcare practitioners wish to support people with T2DM, a partnership based on shared communication could be used to encourage patients to ask questions based upon their individual experiences.…”

A comparative study of renal care in Brazil and Mexico: hemodialysis treatment from the perspective of ESRD sufferers

“…Among them, hemodialysis therapy has been examined in Asia and Africa (Chugh, Jha, & Chugh, 1999), in South-East Asia (Jha, 2013) and in other regions of the world (Liyanage et al, 2015). Most of these studies, nevertheless, tend to emphasize structural variables, which implies the exclusion of the subjective world of those undergoing medical treatment (Blomqvist, Theander, Mowide, & Larsson, 2010).…”

Action research: A mechanism for active engagement of clinical nurses in a program of research

“…Participation in AR provided the nurses with an opportunity to work collaboratively with experienced researchers. In AR, the researchers and participants work together through different stages of the research process, from problem formulation to project evaluation (Blomqvist, Theander, Mowide, & Larsson, 2010). The ART nurses found that research mentorship increased their research knowledge.…”