The purpose of this paper is to illuminate strengths and limitations in quality improvement work, when involving patients.
The experience-based co-design (EBCD) method was used when improving care for patients undergoing otosclerosis surgery. Individual interviews and focus groups were interpreted using qualitative content analysis.
Strengths mentioned by patients were that their participation made a difference. The first steps were found effective in giving an in-depth view of patients’ experiences and the staff got an increased understanding about specific patient needs. However, weaknesses were found in the latter phases, those of improving and follow-up, health care staff had difficulties to keep their focus on patients’ experiences and invite patients to be involved. Patients’ participation decreased, and there was a lack of tools to support the process.
The content in this paper is mainly based on one case. However, the findings are in congruence with earlier research and add further knowledge to the research area.
The findings can be used in healthcare when involving patients in improvement work.
There is no earlier study which involves patients with otosclerosis when using EBCD. Furthermore, this paper illuminates that there is a need to increase collaboration with patients. The latter phases often seem to be handled by health care professionals without involving patients; this paper suggest a development using dedicated quality tools.
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