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Preparing researchers for patient and public involvement in scientific research

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.

The patient's perspective of the feasibility of a patient-specific instrument in physiotherapy goal setting

Background: Patient participation in goal setting is important to deliver client-centered care. In daily practice, however, patient involvement in goal setting is not optimal. Patient-specific instruments, such as the Patient Specific Complaints (PSC) instrument, can support the goal-setting process because patients can identify and rate their own problems. The aim of this study is to explore patients’ experiences with the feasibility of the PSC, in the physiotherapy goal setting. Method: We performed a qualitative study. Data were collected by observations of physiotherapy sessions (n=23) and through interviews with patients (n=23) with chronic conditions in physiotherapy practices. Data were analyzed using directed content analysis. Results: The PSC was used at different moments and in different ways. Two feasibility themes were analyzed. First was the perceived ambiguity with the process of administration: patients perceived a broad range of experiences, such as emotional and supportive, as well as feeling a type of uncomfortableness. The second was the perceived usefulness: patients found the PSC useful for themselves – to increase awareness and motivation and to inform the physiotherapist – as well as being useful for the physiotherapist – to determine appropriate treatment for their personal needs. Some patients did not perceive any usefulness and were not aware of any relation with their treatment. Patients with a more positive attitude toward questionnaires, patients with an active role, and health-literate patients appreciated the PSC and felt facilitated by it. Patients who lacked these attributes did not fully understand the PSC’s process or purpose and let the physiotherapist take the lead. Conclusion: The PSC is a feasible tool to support patient participation in the physiotherapy goal setting. However, in the daily use of the PSC, patients are not always fully involved and informed. Patients reported varied experiences related to their personal attributes and modes of administration. This means that the PSC cannot be used in the same way in every patient. It is perfectly suited to use in a dialogue manner, which makes it very suitable to improve goal setting within client-centered care.

Successful participation of patients in interprofessional team meetings

Background: The number of people with multiple chronic conditions increases as a result of ageing. To deal with the complex health-care needs of these patients, it is important that health-care professionals collaborate in interprofessional teams. To deliver patient-centred care, it is often recommended to include the patient as a member of the team. Objective: To gain more insight into how health-care professionals and patients, who are used to participate in interprofessional team meetings, experience and organize patient participation in the team meetings. Methods: A qualitative study including observations of meetings (n=8), followed by semi-structured interviews with participating health-care professionals (n=8), patients and/or relatives (n=11). Professionals and patients were asked about their experiences of patient participation immediately after the team meetings. Results from both observations and interviews were analysed using content analysis. Results: The findings show a variety of influencing factors related to patient participation that can be divided into five categories: (i) structure and task distribution, (ii) group composition, (iii) relationship between professionals and patients or relatives, (iv) patients’ characteristics and (v) the purpose of the meeting. Conclusion: Patient participation during team meetings was appreciated by professionals and patients. A tailored approach to patient involvement during team meetings is preferable. When considering the presence of patients in team meetings, it is recommended to pay attention to patients’ willingness and ability to participate, and the necessary information shared before the meeting. Participating patients seem to appreciate support and preparation for the meeting.

Patient participation in electronic nursing documentation

BACKGROUND: Patient participation in nursing documentation has several benefits like including patients' personal wishes in tailor-made care plans and facilitating shared decision-making. However, the rise of electronic health records may not automatically lead to greater patient participation in nursing documentation. This study aims to gain insight into community nurses' experiences regarding patient participation in electronic nursing documentation, and to explore the challenges nurses face and the strategies they use for dealing with challenges regarding patient participation in electronic nursing documentation.METHODS: A qualitative descriptive design was used, based on the principles of reflexive thematic analysis. Nineteen community nurses working in home care and using electronic health records were recruited using purposive sampling. Interviews guided by an interview guide were conducted face-to-face or by phone in 2019. The interviews were inductively analysed in an iterative process of data collection-data analysis-more data collection until data saturation was achieved. The steps of thematic analysis were followed, namely familiarization with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and reporting.RESULTS: Community nurses believed patient participation in nursing documentation has to be tailored to each patient. Actual participation depended on the phase of the nursing process that was being documented and was facilitated by patients' trust in the accuracy of the documentation. Nurses came across challenges in three domains: those related to electronic health records (i.e. technical problems), to work (e.g. time pressure) and to the patients (e.g. the medical condition). Because of these challenges, nurses frequently did the documentation outside the patient's home. Nurses still tried to achieve patient participation by verbally discussing patients' views on the nursing care provided and then documenting those views at a later moment.CONCLUSIONS: Although community nurses consider patient participation in electronic nursing documentation important, they perceive various challenges relating to electronic health records, work and the patients to realize patient participation. In dealing with these challenges, nurses often fall back on verbal communication about the documentation. These insights can help nurses and policy makers improve electronic health records and develop efficient strategies for improving patient participation in electronic nursing documentation.

Patient participation—What is it?

Patient participation in electronic nursing documentation

BACKGROUND: Patients are increasingly expected to take an active role in their own care. Participation in nursing documentation can support patients to take this active role since it provides opportunities to express care needs and preferences. Yet, patient participation in electronic nursing documentation is not self-evident.OBJECTIVE: To explore how home-care patients perceive their participation in electronic nursing documentation.METHODS: Semi-structured interviews were conducted with 21 home-care patients. Interview transcripts were analysed in an iterative process based on the principles of reflexive inductive thematic analysis.RESULTS: We identified a typology with four patient types: 'high need, high ability', 'high need, low ability', 'low need, high ability' and 'low need, low ability'. Several patients felt a need for participation because of their personal interest in health information. Others did not feel such a need since they trusted nurses to document the information that is important. Patients' ability to participate increased when they could read the documentation and when nurses helped them by talking about the documentation. Barriers to patients' ability to participate were having no electronic devices or lacking digital skills, a lack of support from nurses and the poor usability of electronic patient portals.CONCLUSION: Patient participation in electronic nursing documentation varies between patients since home-care patients differ in their need and ability to participate. Nurses should tailor their encouragement of patient participation to individual patients' needs and abilities. Furthermore, they should be aware of their own role and help patients to participate in the documentation.PATIENT OR PUBLIC CONTRIBUTION: Home-care patients were involved in the interviews.