Rationale

Patient participation should encapsulate the individual's resources and needs, though such standards remain rationed for people living with a long-term health concern like kidney failure.

Aims

To illustrate what patient participation signified to patients and staff in kidney care, and whether an agreed or disagreed conceptualisation occurred over time, evaluating the influence of two study-specific interventions to facilitate more person-centred participation.

Method

By convergent mixed methods design across 9 units in Sweden, we repeated the following data collection at 3 time points over 18 months: semistructured interviews with patients and staff (n = 72), and structured reviews for accounts of participation in patient records (n = 240). Data were subjected to content analysis and descriptive statistics, respectively. The outcomes were appraised for changes over time besides the interventions to enhance attention to patients' participation: a clinical tool and guidance distributed to management, and additional local support, respectively.

Results

Both patients and staff described patient participation as a comprehension of the disease and its management in everyday life. Yet, patients accentuated participation as one's experiences being recognised, and mutual knowledge exchange. Instead, staff emphasised the patients managing their treatment. The health records primarily represented what staff do to support their notion of patient participation. No influence of the interventions was noted, but what signified patient participation was maintained over time.

Conclusion

Both patients and staff stress the importance of patient participation, although they focus on different elements. Further person-centred conduct warrants a shared conceptualisation and strategies addressing and scaffolding patients' preferences and means.