Series: Public engagement with research. Part 2:GPs and primary care researchers working inclusively with minoritised communities in health research to help address inequalities

Public engagement in health research is vital for addressing health disparities and promoting inclusivity among minoritised communities who often face barriers to accessing healthcare. Minoritised communities are groups, which have been made minorities by a dominant culture, race, ethnic group and/or social class and may experience health inequalities as a result. By incorporating diverse perspectives and lived experiences of minoritised communities, this approach aims to achieve contextually relevant research outcomes that reduce health inequalities and improve overall well-being. However, underrepresentation and lack of inclusivity challenges persist, necessitating the establishment of inclusive partnerships and grassroots participatory methodologies. To foster inclusive public engagement, it is important to overcome structural and cultural barriers, address socioeconomic challenges, and build trust with minoritised communities. This can be achieved by promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and collecting rigorous data on engagement demographics for transparency and accountability. Involving minoritised communities in decision-making through participatory research approaches enhances trust and yields successful outcomes. Additionally, allocating sufficient resources, collaborating in co-production, and prioritising the diverse needs and perspectives of stakeholders contribute to fostering inclusive public engagement in research. Overall, inclusive engagement practices particularly in primary care research have the potential to reduce health inequalities and cater to the unique requirements of minoritised communities, thereby creating more impactful outcomes and promoting equitable healthcare access

Exploring possibilities for child participation in guideline development: The need for a fundamental reconsideration and reconfiguration of the system

While the right of children to be involved in decisions that concern them has been widely recognised, they are currently barely involved in guideline development in healthcare. This paper aims to explore what a future guideline development system in which children are meaningfully involved might look like and to reflect on the transition required to achieve this. We used a systems innovation perspective, exploring child participation within its systemic context and complexity. To this end, we conducted 24 interviews with various actors, about their ideas on and experiences with child participation in guideline development in the Dutch system (between August 2018 and September 2020), complemented with a scoping review. The current system is characterised by a high-speed, rigid process that relies heavily on scientific evidence. Children are usually not included or taken seriously. The contours of a system in which children are meaningfully involved would differ markedly: children would be considered capable and taken seriously, and the guideline development process would be flexible, with time for interaction with children and discussion about the implications of their perspectives. We encountered few examples of child participation in guideline development worldwide, and believe our results are indicative of the situation in other Western countries. We propose the following actions: (1) Development of a discussion arena to create a joint vision on the aim of guideline development and subsequently the role of child participation therein. (2) Set up of transition experiments unbound by the current constellation, conducted by front-runners who are open to children's perspectives. These are essential to clarify pathways towards a future in which the voices of children are meaningfully integrated. It remains to be seen, however, whether there are sufficient actors who feel the necessary urgency for change

Co-creating an empowering health education intervention for urological cancer patients

Objective: The effectiveness of health education for patients has often been suboptimal. The neglect of a focus on empowerment and the presence of implementation barriers have been put forward as possible explanations for this. This study aimed to gain insight into how to co-create and develop an empowerment theory-based health education intervention for urological cancer patients. Design: Bravo’s empowerment intervention model provided the theoretical foundations for the work undertaken with urological cancer patients in the Netherlands, using a participatory interactive learning and action approach. Method: Insights into needs regarding health education were obtained through semi-structured interviews with patients (n = 22) and health professionals (n = 17). Subsequently, eight co-creation sessions (n = 30) were organised to translate these needs into a health education intervention. Results: An intervention in the form of digital patient information was developed. The information offered provides a view of the different care steps based on clinical guidelines but personalised in different ways. By connecting patients’ empowerment needs to the information provided, and by taking health professionals’ perspectives into account, barriers to health education were made visible and addressed. Conclusion: Patient empowerment theory proved valuable in better aligning a participatory research process with the empowerment needs of urological cancer patients. The programme theory developed may offer a valuable template for the development of future health education interventions

“The challenge of managing insecurities”: Parents’ experiences with the care for their child with congenital diaphragmatic hernia

Purpose: Last decennia remarkable advances have been made in decreasing the mortality rate of children with congenital diaphragmatic hernia (CDH), resulting in a relatively growing patient group with long-term complications and complex care needs. These consequences have a huge impact on the quality of life of both children and their families. To provide practical recommendations for improving the quality of care for this patient group, the present study sought to obtain insights into the experiences and needs of parents with a child with CDH. Design and Methods: A qualitative study was conducted on the experiences and needs of parents with a child with CDH living in the Netherlands. Data was obtained by means of a discourse analyses of 17 weblogs written by parents and three online focus groups with 8–12 parents per group (n = 29). The data was analysed thematically and structured by using the model of Lawoko (2007) on parental satisfaction with care. Results: Although parents were generally satisfied with the delivered care, they frequently encountered challenges in managing insecurities throughout the care process. Besides the unpredictable disease progress, insecurities were exacerbated by: (a) limited specialized knowledge of long-term consequences, (b) logistical problems, and (c) nontransparent communication. Providing security through, for instance, a clear care plan and by engaging parents in the decision-making process helped them feel more in control. Practice Implications: This study showed that parents’ main challenge was to manage insecurities. Creating securities by providing a care plan and involving parents in the decision-making process helped parents to feel more in control. To improve quality of care for children with CDH, future measures should, therefore, focus on reducing insecurities by managing expectations, improving transparency and stimulating engagement

A research agenda on oral health care as a boundary object that unites the perspectives of patients and practitioners

Abstract Context A research agenda for oral health care was established in the Netherlands using the Dialogue Model. This project served as a case study in which we applied boundary‐work theory as a framework to understand boundaries (ie demarcations) between and within groups, and how these boundaries can be overcome. Objective To gain insights into the boundaries encountered when setting a research agenda, we analysed how this agenda served as a boundary object (ie circumstances, situations or material that connect actor groups and allow boundary crossing) that facilitated crossing boundaries and uniting the perspectives of patients and practitioners. Methods We used a thematic approach to analyse researchers' observations, meeting materials, emails, interviews with patients (n = 11) and a survey among patients and practitioners (n = 18). Results Setting the research agenda helped to cross boundaries in oral health care, which demonstrates its role as a boundary object. First, this made it possible to integrate research topics representing the perspectives and priorities of all patients and also to unite those perspectives. It was essential to involve practitioners at an early stage of the project so that they could better accept the patients' perspectives. This resulted in support for an integrated research agenda, which facilitated the crossing of boundaries. Conclusions The research agenda‐setting project was found to serve as a boundary object in uniting the perspectives and priorities of patients and practitioners. Patient contribution Patient involvement in this case study was structured in the process of research agenda setting using the Dialogue Model

Patient engagement in the design of clinical research in Noonan syndrome spectrum disorders: a scoping review

Background: Noonan syndrome spectrum disorders are a group of disorders caused by mutations in several genes of the RAS/MAPK pathway. Because of a highly heterogeneity and variable phenotypical manifestations of the disorders, these children and adults have a variable number of symptoms. Inclusion of their perceived experience of their health and developmental problems in research (design) could contribute to increased relevance of the research process and outcomes. The aim of this study is to get insight in what way patients with a Noonan syndrome spectrum disorder have been involved in the research process in order to learn for future engagement practices. Methods and results: To that end, the degree of engagement was measured by the eight levels of the participation ladder of Arnstein. Using a scoping review approach, 18 articles were selected in which patient engagement in the design of studies in patients with Noonan syndrome spectrum disorders was described over the past twenty years. Six of these articles reported engagement on the level of informing (level 3), 8 on the level of consultation (level 4), 2 on the level of placation (level 5)and 2 on the level of partnership (level 6). Conclusions: The current results do show a positive albeit still modest development of patient engagement over the last few years. A promising way to stimulate engagement is aiming to yield insights in the most important patients’ needs by developing a patient guided research agenda. However, this is not automatically followed by patient engagement at higher levels of participation in subsequent research steps. For this reason, in the Netherlands for example, a Dutch Noonan syndrome spectrum disorders research agenda is being developed, in a collaboration between the Dutch Noonan Syndrome Foundation and national scientific and clinical professionals

A Multiple Case Study of Implementing Community Service-Learning in Large-Scale Higher Education Courses

Community service-learning (CSL) is implemented mainly in smallscale classes. To date, little is known about how large-scale CSL courses could best be designed. This study seeks to identify benefits and potential strategies for designing large-scale CSL courses. A qualitative multiple case study was performed of three large-scale university courses (> 100 students) at Vrije Universiteit Amsterdam. Based on three core concepts of CSL, reflection, reciprocal learning, and transformational learning experiences were used as sensitizing topics in the thematic analysis. Implementing CSL in large-scale courses showed multiple benefits, such as the amount of work that could be completed and the potential to reduce students’ individual workload. At the same time, realizing CSL in large-scale courses offered some challenges. This article presents nine hands-on strategies to implement CSL in large-scale courses

Transdisciplinary learning trajectories:developing action and attitude in interplay

Addressing complex societal challenges requires professionals capable of integrating multiple perspectives on problems and possible solutions. This requires crossing disciplinary boundaries and boundaries between science and society. Transdisciplinary approaches respond to this demand by deliberately integrating knowledge of different disciplinary specialists and societal actors for a joint framing and co-creation of new options for addressing societal challenges. There is, however, limited understanding of which assets transdisciplinary work requires and how students can be trained in these. We studied transdisciplinary learning in the context of a novel course in which students engaged in multi-actor agenda-setting and facilitated multi-actor dialog sessions at a community event. We found that with the support of teachers and a detailed script, and by acquiring knowledge and skills through theoretical learning and exercises, students were able to facilitate safe and structured multi-stakeholder dialog sessions. Shifts towards a more transdisciplinary attitude were sparked by eye-opening experiences in transdisciplinary encounters if students processed these critically and openly. Based on our findings we propose “Transdisciplinary Learning Trajectories” which conceptualizes transdisciplinary learning as developing the ability to engage in transdisciplinary action and developing towards a transdisciplinary attitude. Based on our findings, we argue for a combination of experiential and instruction approaches that support learning in both dimensions, simultaneously and in interplay.</p