Patient Participation in Kidney Care : Patients’ and professionals’ perspectives

Sammanfattning: Background: Patient participation is central to modern healthcare, known to enhance both physical health and well-being. However, the way in which a person prefers to engage can vary depending on their condition, knowledge, and healthcare context. Person-centred care considers a person’s needs and preferences, thereby facilitating preference-based patient participation. Managing a long-term disease, such as chronic kidney disease (CKD), often necessitates regular contact with healthcare and engagement in symptom management in day-to-day life. What facilitates person-centred patient participation in kidney care is unknown, but a further understanding of patient participation when living with CKD is needed. The overall aim of this thesis was to investigate patient participation in kidney care and assess variations in levels of preferencebased patient participation over time.Method: This thesis comprises four studies and is part of a research intervention project on participation in kidney clinics in south-eastern Sweden. Data collection commenced in 2018 and was concluded in 2022. Study I was of a qualitative design, with group discussions of patients and professionals (n=42) in dialysis care. Studies II and III employed the 4Ps tool, a validated questionnaire on patient participation completed by patients with CKD stage 4 or 5 (n=358). Study II adopted a cross-sectional design and Study III employed a quasi-experimental design to examine changes in participation over time and the effects of two interventions directed at managers and some healthcare professionals. In Study III, data from before and after the interventions were compared. Study IV employed a mixed-methods design, encompassing qualitative and quantitative data. It entailed repeated individual interviews (n=19 patients, 17 professionals) and data from a systematic review of patient records (n=240). The qualitative data from Studies I and IV were addressed using content analysis, while the quantitative data from Studies II, III, and IV were subjected to statistical tests using IBM Statistical Package for Social Sciences (SPSS) and Stan software.Results: Both individuals living with CKD and healthcare professionals recognised the importance of patient participation in kidney care. Patient participation in CKD stage 4 and 5 involved understanding the disease and its management, as well as mutual exchange of knowledge. However, there was not always a shared understanding between patients and professionals as to what patient participation entails. While patients described comprehending their condition and being involved in mutual communication and treatment planning, professionals primarily emphasised treatment management as the key aspect. Moreover, the patient records predominantly documented the professionals' actions for and with their patients. The findings also showed that although most patients had good matches between their preferences and experiences, suggesting sufficient levels of preference-based participation, some patients had insufficient preference-based participation, indicated they had experienced either more or less conditions for participation than their preferences. The staff-directed interventions in the research project did not appear to improve preference-based participation.Conclusion: Living with CKD stage 4 or 5 requires patient engagement and participation, meaning that patients understand how to manage their illness in their day-to-day lives. The studies suggest that further efforts are required in the management of kidney failure to enable more patients to engage in person-centred participation. One potential key to achieving mutual understanding between patients and professionals is dialogue. The tool utilised in these studies may prove useful in facilitating such conversations: the 4Ps is a tool that can be used to identify preferences for and experiences of patient participation. As such, it can be employed to measure preference-based patient participation in clinical settings and research. However, the findings of this thesis indicate that additional efforts are necessary for its implementation and to promote person-centred participation. Therefore, further research is needed, as are strategies healthcare professionals can employ to better recognise and respond to patients' resources and needs.