Background: Patient involvement in interprofessional education (IPE) is a new approach in fostering person-centeredness and collaborative competencies in undergraduate students. We developed the Patient As a Person (PAP-)module to facilitate students in learning from experts by experience (EBEs) living with chronic conditions, in an interprofessional setting. This study aimed to explore the experiences of undergraduate students, EBEs and facilitators with the PAP-module and formulate recommendations on the design and organization of patient involvement in IPE. Methods: We collected data from students, EBEs and facilitators, through eight semi-structured focus group interviews and two individual interviews (N = 51). The interviews took place at Maastricht University, Zuyd University of Applied Sciences and Regional Training Center Leeuwenborgh. Conventional content analysis revealed key themes. Results: Students reported that learning from EBEs in an interprofessional setting yielded a more comprehensive approach and made them empathize with EBEs. Facilitators found it challenging to address multiple demands from students from different backgrounds and diverse EBEs. EBEs were motivated to improve the personcentredness of health care and welcomed a renewed sense of purpose. Conclusions: This study yielded six recommendations: (a) students from various disciplines visit an EBE to foster a comprehensive approach, (b) groups of at least two students visit EBEs, (c) students may need aftercare for which facilitators should be receptive, (d) EBEs need clear instruction on their roles, (e) multiple EBEs in one session create diversity in perspectives and (f) training programmes and peer-to-peer sessions for facilitators help them to interact with diverse students and EBEs.
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Background: Acquiring the theoretical and practical knowhow of conducting patient and public involvement (PPI) in research is not part of the traditional curriculum of researchers. Zuyd University of Applied Sciences and Huis voor de Zorg, a regional umbrella patient organization, therefore started a 1.5-year coaching programme. Objective: To establish a community of practice by developing a PPI coaching programme for senior and junior health services researchers of Zuyd University. The context consisted of research projects conducted by the participants. Methods: A participatory action research methodology. Data were collected from reports of thematic group meetings and individual sessions with participants, field notes and regular reflection meetings with the project team. Data were analysed by reflexive deliberation. Findings: The programme comprised a kick-off meeting (52 attendees), followed by 7 group meetings with 11 junior and 9 senior researchers. The project team constructed a serious game based on the concept of the participation ladder. Questions and concerns differed for junior and senior researchers, and separate tailored meetings were organized for both groups. Between group meetings, participants received individual assignments. Group meetings were accompanied by individual coaching sessions to provide tailor-made feedback. The programme concluded with a combined meeting with all stakeholders. Conclusion: Building a community of PPI practice through action research facilitates the development of a coaching programme that fosters social learning, empowerment and the development of a shared identity concerning PPI. The role and responsibilities of senior researchers should be distinguished from those of junior researchers.
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Background and objective Public involvement in palliative care is challenging and difficult, because people in need of palliative care are often not capable of speaking up for themselves. Patient representatives advocate for their common interests. The aim of our study was to examine in depth the current practice of public involvement in palliative care. Setting and sample The study was conducted in the province of Limburg in the Netherlands, with six palliative care networks. Study participants were 16 patient representatives and 12 professionals. Method This study had a descriptive design using qualitative methods: 18 in-depth interviews and three focus groups were conducted. The critical incident technique was used. The data were analysed using an analytical framework based on Arnstein’s involvement classification and the process of decision making. Impact categories as well as facilitators and barriers were analysed using content analysis. Findings and conclusion The perceived impact of public involvement in palliative care in terms of citizen control and partnership is greatest with regard to quality of care, information development and dissemination, and in terms of policymaking with regard to the preparation and implementation phases of decision making. The main difference in perceived impact between patient representatives and professionals relates to the tension between operational and strategic involvement. Patient representatives experienced more impact regarding short-term solutions to practical problems, while professionals perceived great benefits in long-term, strategic processes. Improving public involvement in palliative care requires positive attitudes, open communication, sufficient resources and long-term support, to build a solid basis for pursuing meaningful involvement in the entire decision-making process.
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