Level with me! Exploring patient participation in short-term clinical encounters in team-based settings

Sammanfattning: Background: Patient participation has been described as patients’ opportunities for involvement in different parts of their care. Benefits, including improved patient safety, health outcomes and patient satisfaction have been associated with patient participation. However, although patient participation is promoted in legislation and by international organisations, there are signs of deficits in different healthcare settings. It also appears that patient participation is context dependent and defined differently across contexts. Some healthcare settings, for example, short-term care relationships in team-based contexts, have been less explored. As it appears that greater patient participation is needed in the healthcare system, understanding what it actually means in different contexts is essential to identifying strategies to improve patient participation. Aims: The overall aims of this thesis were, first, to contribute to knowledge and understanding about patient participation in short-term clinical encounters in team-based settings, and second, to provide and evaluate strategies to enable patient participation for such settings. Methods: In this thesis, two different Swedish clinical settings characterised by short-term care encounters were explored: gastrointestinal (GI) endoscopy in a university hospital and rural emergency care in which telemedicine is used to connect a physician to the rest of the team (i.e. ‘tele-emergency’). Qualitative methods were used to explore patients’ (Study II) and healthcare professionals’ (HCP’s) (Study III) attitudes, experiences and perceptions of patient participation in the respective settings. Semi-structured interviews were performed individually or in groups. Interview transcripts were analysed using qualitative content analysis. For the GI endoscopy setting, a safety checklist with a person-centered approach was developed and introduced (Study I). A cross-sectional design was used to evaluate the checklist intervention (before-after). Data collection included questionnaires and structured observations. In study IV, an observational tool was developed and tested to assess and provide feedback to emergency teams regarding patient involvement and collaboration behaviour. The development of the tool was based on published literature, interview transcripts and videorecordings from simulated emergency scenarios. An international expert panel reviewed the tool’s content for validity. The feasibility and inter-rater reliability of the tool were also assessed. Results: In GI endoscopy (Study II), the patients described their level of participation as active or passive and reported whether they were included or excluded by the HCPs. Factors influencing patient participation in GI endoscopy were identified, including the perceptions of the HCPs, personal characteristics or circumstances, and organisational aspects. Opportunities for increased patient participation during the endoscopy pathway were identified. In Study III, patient participation in tele-emergencies was described by HCPs. Building a trusting relationship was essential for patient participation in emergencies. The video setup frequently became a ‘barrier’ between the HCPs and the patients, and the team’s communication over the video-conference system endangered the already weak position of the patient. The familiarity in the patient-HCP relationship, which is often typical of rural healthcare, was negatively affected when a physician unknown to the patient appeared on the screen. HCPs also described a need for a ‘private room’, without the patient, to discuss sensitive topics. Two strategies to enhance patient participation were successfully developed and evaluated, one for GI endoscopy and one for emergency care. In Study I, the most notable result was that physicians started participating in patient identity checks (from 0% to 87%) 10 months after the checklist intervention (p < 0.001). Nurses participated in the identity checks to a high degree both before and after the intervention. Structured observations showed that the checklist was used frequently, but adherence was suboptimal. The staff questionnaires showed a tendency towards increased awareness of patient participation and improvements in the teamwork climate. Patients reported overall high satisfaction before the intervention, which remained unchanged. In Study IV, the PIC-ET (Patient Involvement and Collaboration in Emergency Teams) tool was developed, a 22-item observational instrument for team assessment in emergency care. Using this tool, a team’s patient involvement and collaboration (PIC) behaviour can be rated from ‘no PIC’ to ‘High PIC’. The PIC-ET tool was found to be feasible, and the content validity was good. The tool was viewed as useful for clinical assessments, research and education. Inter-rater reliability was ‘fair’. Conclusions: This thesis contributes knowledge on patient participation in short-term clinical encounters in team-based settings by providing descriptions of what participation means to patients and HCPs within two different settings: GI endoscopy and rural emergency care. The results suggest that context influences how patient participation is interpreted, but also that it is highly dependent on the personal characteristics of the patients and HCPs, their expectations and previous experiences. In both settings, patient participation was described as possible and desirable. However, the patient often seems to have an inferior position. For increased patient participation, mutual trust, open dialogue, and sharing of knowledge and power are important. Two strategies for enhancing patient participation were developed and tested. Both methods show promising features, and future research should be conducted to generate more robust evidence.