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: 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.
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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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BACKGROUND: Healthcare professionals in the hospital setting frequently assume primary caregiving responsibilities, which often leads family members to perceive this as standard practice during hospitalization. This dynamic may create a gap between actual and desired levels of family involvement. The aim of this study is to explore the opinions of families about their involvement in care during the hospitalization of a relative.METHODS: A sequential explanatory mixed-method study design was used, where quantitative data collection is followed by qualitative data collection for a deeper understanding of the quantitative findings. Data were collected between November 2023 and April 2024 across 15 wards in a university hospital in the north of the Netherlands. 153 family members of hospitalized patients completed the adapted Families' Importance in Nursing Care-Families' Opinions questionnaire, providing valuable quantitative data. Twenty-three of these family members were subsequently interviewed to gather qualitative insights. Data were analyzed sequentially, with the quantitative results guiding qualitative data collection. The two types of data were integrated to draw comprehensive conclusions about the significance of family involvement during hospitalization. The study adhered to the guidelines of the Good Reporting of A Mixed Method Study (GRAMMS).RESULTS: The questionnaire scores indicate a high willingness for involvement in care during hospitalization. Subsequent in-depth interviews led to the development of a model demonstrating that this involvement is sequentially related to the themes of acknowledgement, alignment, and collaboration.CONCLUSIONS: Family members expressed a need to be acknowledged by healthcare professionals as partners in care. Role agreements and information sharing during hospital care should be aligned to achieve effective collaboration between family members and healthcare professionals.
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AbstractIntroduction: Involvement of family members in shared decision-making (SDM) processes for older cancer patients has become a topic of increasing interest but can be challenging for physicians. Yet, there is a need to understand the unique features of family involvement in SDM.Objectives: The aim of this study was to identify how and to what extent family members of older patients with cancer, together with patients and physicians, are involved in triadic decision-making processes in clinical practice.Methods: Qualitative observations of 25 consultations between physicians (n=10), patients ≥ 70 years (n=25), and family members (n=30) at the oncology outpatient clinic. Consultations were audiotaped and transcribed. The OPTIONMCC tool was used to evaluate the SDM process. Data analysis followed a thematic deductive approach using Atlas-ti.Results: Patients showed greater participation in the SDM process than family members. Family members' involvement in SDM varied from no involvement to active involvement. Their participation can be characterized by several key factors, including emphasizing the patient's values and goals of care, asking questions about various treatment options, offering assistance in the decision-making process, and providing clarification and organization of the overall care process. Observed physicians' SDM skills were at a low or moderate level. Physicians kept their focus on patients and were responsive to family members but did not actively involve them in SDM.Conclusion: Family members of older patients with cancer showed varying levels of involvement in the SDM process, while physicians were observed to not actively involve them. To increase family involvement in SDM in a way that is beneficial for all parties involved we recommend including patient and family-oriented strategies in SDM training for physicians.
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BACKGROUND: Many older patients with cancer have their family members, often their adult children, involved in a process of treatment decision-making. Despite the growing awareness that family members can facilitate a process of shared decision-making, strategies for involving family members are scarce. Furthermore, literature about shared decision-making pays little attention to family involvement or to the impact that family relations have on the decision process. The purpose of this study was to explore how surgeons and nurses perceive the involvement of adult children of older patients with cancer in treatment decision-making. Subsequently, it identified strategies to ensure family involvement in the decision-making process, used in clinical practice.METHODS: Qualitative open in-depth interviews were conducted with 13 surgeons and 13 nurses working in a university or general hospital. Qualitative content analysis was conducted according to the steps of thematic analysis.RESULTS: Both nurses and surgeons indicated that adult children's involvement in decision-making about treatment increases when patients become frail. They mentioned several characteristics of adult children's behaviour during the decision-making process. Most of these characteristics are beneficial, but they also can be challenging. The distinct nature of adult children's involvement can help older patients with cancer reach better-informed treatment decisions. Health professionals reported six strategies to support positive family involvement in decision-making about treatment.CONCLUSION: Adult children may facilitate a process of shared decision-making and help patients reach well-informed treatment decisions. Health professionals' strategies deliberately support positive family involvement.
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Stimulating patients to approach their pain from a biopsychosocial perspective is central to chronic pain rehabilitation. However, conversations between patients and their healthcare professionals about the social and psychological factors that may contribute to the continuation of pain and disability can be challenging. The current scientific literature does not sufficiently pinpoint the difficulties in patient–practitioner interaction on chronic pain, and it falls short of answering the question of how a joint exploration of the social and psychological factors that might be involved in the patient’s pain and evolving disability can be enhanced. In this theoretical article, we introduce discursive psychology as a potentially valuable research perspective to gain a better understanding of the difficulties in patient–practitioner interaction in the context of chronic pain rehabilitation. Discursive psychology focuses on features of people’s talk (e.g. that of patients and practitioners) and is concerned with the social practices that people perform as part of a specific interactional context. In this paper, we provide an introduction to the main theoretical notions of discursive psychology. We illustrate how discursive psychological analyses can inform our understanding of the specific sensitivities in conversations between patients with chronic pain and their practitioners. Finally, we address how a better understanding of these sensitivities offers a gateway towards improving these conversations. Een belangrijk principe in revalidatie bij chronische pijn is de benadering van de pijn vanuit een biopsychosociaal perspectief. Het blijkt echter een uitdaging voor patiënten en behandelaars om de sociale en psychologische factoren die een rol spelen bij chronische pijn te bespreken. In de huidige wetenschappelijke literatuur is hier nog niet voldoende aandacht voor; en wordt geen perspectief geboden voor verbetering van de gezamenlijke verkenning van sociale en psychologische factoren. In dit theoretische artikel introduceren we discursieve psychologie als een mogelijk waardevol onderzoeksperspectief om een beter begrip tot stand te brengen van de complexiteit van interactie in de context van chronische pijn revalidatie. Discursieve psychologie richt zich op kenmerken van interactie, in het bijzonder de sociale praktijken die tot stand worden gebracht binnen een specifieke interactionele context. We beschrijven de belangrijkste theoretische principes van discursieve psychologie en illustreren hoe een DP analyse licht kan werpen op de specifieke gevoeligheden in conversaties tussen patiënten met chronische pijn en hun behandelaars. Tot slot bespreken we hoe een beter begrip van deze gevoeligheden een ingang biedt tot het verbeteren van deze conversaties.
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Many older patients with cancer depend on their family members for care and support and involve their family members in treatment decision-making in different stages of the cancer trajectory. Although family involvement is advocated in person-centered care, little is known about family involvement in decision-making specifically for older patients, and evidence-based strategies are scarce. The aim of this scoping review is to provide deeper understanding of factors influencing family involvement in treatment decision-making for older patients with cancer. Four databases were searched for quantitative-, qualitative- and mixed-method empirical studies describing factors influencing family involvement in treatment decision-making for older patients with cancer: PubMed, EMBASE, CINAHL and PsycINFO. Three independent researchers reviewed the papers for eligibility and quality and contributed to the data extraction and analysis. Twenty-seven papers were included, sixteen quantitative studies, nine qualitative studies and two mixed-method studies. Five categories of factors influencing family involvement emerged: 1) patient characteristics, 2) family member characteristics, 3) family system characteristics, 4) physician’s role and 5) cultural influences. These factors affect the level of family control in decision-making, treatment choice, decision agreement, and levels of stress and coping strategies of patients and family members. This review reveals a complex interplay of factors influencing family involvement in treatment decision-making for older patients with cancer that is rooted in characteristics of the family system. The findings underscore the need for development and implementation of evidence-based strategies for family involvement in treatment decision-making as part of patient-centered care for older patients with cancer.
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