Struggling with the governance of interprofessional elderly care in mandated collaboratives: a qualitative study.

BACKGROUND: Governing interprofessional elderly care requires the commitment of many different organisations connected in mandated collaboratives. Research over a decade ago showed that the governance relied on clan-based mechanisms, while lacking formal rules and incentives for collaborations. Awareness and reflection were seen as first steps towards progression. We aim to identify critical governance features of contemporary mandated collaboratives by discussing cases introduced by the healthcare professionals and managers themselves. METHODS: Semi-structured interviews (n = 24) with two regional mandated collaboratives took place from November 2019 to November 2020 in the Netherlands to learn more about critical governance features. The interviews were thematically analysed by the project team (authors) to synthesise the results and were subsequently validated during a focus group. RESULTS: Critical governance features of interorganisational activities in mandated collaboratives include the gradual formulation of shared vision and clear client-centred goals, building trust and acquaintanceship for the advancement of an open collaborative culture, establishing a non-extreme formalised governance structure through leadership, mutual trust and innovation support and facilitating information exchange and formalisation tools for optimal elderly care. CONCLUSION: Trust and leadership form the backbone of interorganisational functioning. Interorganisational functioning should be seen in light of their national embedment and resources that are (being made) available, which makes them susceptible to constant change as they struggle with balancing between critical features in a fluid and intermingled governance context. The identified critical features of (contemporary) mandated collaboratives may aid in assessing and improving interprofessional functioning within integrated elderly care. International debate on governance expectations of mandated collaboratives may further contribute to sharpening the roles of both managers and healthcare professionals.

Establishing a Health CASCADE-Curated Open-Access Database to Consolidate Knowledge About Co-Creation: Novel Artificial Intelligence-Assisted Methodology Based on Systematic Reviews.

BACKGROUND: Co-creation is an approach that aims to democratize research and bridge the gap between research and practice, but the potential fragmentation of knowledge about co-creation has hindered progress. A comprehensive database of published literature from multidisciplinary sources can address this fragmentation through the integration of diverse perspectives, identification and dissemination of best practices, and increase clarity about co-creation. However, two considerable challenges exist. First, there is uncertainty about co-creation terminology, making it difficult to identify relevant literature. Second, the exponential growth of scientific publications has led to an overwhelming amount of literature that surpasses the human capacity for a comprehensive review. These challenges hinder progress in co-creation research and underscore the need for a novel methodology to consolidate and investigate the literature. OBJECTIVE: This study aimed to synthesize knowledge about co-creation across various fields through the development and application of an artificial intelligence (AI)-assisted selection process. The ultimate goal of this database was to provide stakeholders interested in co-creation with relevant literature. METHODS: We created a novel methodology for establishing a curated database. To accommodate the variation in terminology, we used a broad definition of co-creation that encompassed the essence of existing definitions. To filter out irrelevant information, an AI-assisted selection process was used. In addition, we conducted bibliometric analyses and quality control procedures to assess content and accuracy. Overall, this approach allowed us to develop a robust and reliable database that serves as a valuable resource for stakeholders interested in co-creation. RESULTS: The final version of the database included 13,501 papers, which are indexed in Zenodo and accessible in an open-access downloadable format. The quality assessment revealed that 20.3% (140/688) of the database likely contained irrelevant material, whereas the methodology captured 91% (58/64) of the relevant literature. Participatory and variations of the term co-creation were the most frequent terms in the title and abstracts of included literature. The predominant source journals included health sciences, sustainability, environmental sciences, medical research, and health services research. CONCLUSIONS: This study produced a high-quality, open-access database about co-creation. The study demonstrates that it is possible to perform a systematic review selection process on a fragmented concept using human-AI collaboration. Our unified concept of co-creation includes the co-approaches (co-creation, co-design, and co-production), forms of participatory research, and user involvement. Our analysis of authorship, citations, and source landscape highlights the potential lack of collaboration among co-creation researchers and underscores the need for future investigation into the different research methodologies. The database provides a resource for relevant literature and can support rapid literature reviews about co-creation. It also offers clarity about the current co-creation landscape and helps to address barriers that researchers may face when seeking evidence about co-creation.

Adult co-creators' emotional and psychological experiences of the co-creation process: a Health CASCADE scoping review protocol.

BACKGROUND: There is a growing investment in the use of co-creation, reflected by an increase in co-created products, services, and interventions. At the same time, a growing recognition of the significance of co-creators' experience can be detected but there is a gap in the aggregation of the literature with regard to experience. Therefore, the purpose of this scoping review is to uncover the breadth of existing empirical research on co-creation experience, how it has been defined and assessed, and its key emotional and psychological characteristics in the context of co-created products, services, or interventions among adults. METHODS: The development of the search strategy was guided by the research question, Arksey, and O'Malley's scoping review methodology guidelines, and through collaboration with members of the Health CASCADE consortium. The results of the search and the study inclusion process will be reported in full and presented both narratively and by use of the Preferred Reporting Items for Systematic Reviews and Meta-analyses extension for scoping review (PRISMA-ScR) flow diagram. Comprehensive searches of relevant electronic databases (e.g. Scopus) will be conducted to identify relevant papers. Snowball searches to identify additional papers through included full-text papers will be done using the artificial intelligence tool, namely, Connected Papers. All review steps will involve at least two reviewers. Studies in English, Dutch, Chinese, Spanish, and French, published from the year 1970 onwards, will be considered. Microsoft Excel software will be used to record and chart extracted data. DISCUSSION: The resulting scoping review could provide useful insights into adult co-creators' experience of participating in the co-creation process. An increased understanding of the role of emotional and psychological experiences of participating in co-creation processes may help to inform the co-creation process and lead to potential benefits for the co-creators and co-created outcome. SYSTEMATIC REVIEW REGISTRATION: 10.5281/zenodo.7665851.

"I am my own doctor": A qualitative study of the perspectives and decision-making process of Muslims with diabetes on Ramadan fasting.

BACKGROUND: Many Muslims with diabetes choose to fast against medical advice during Ramadan, potentially increasing their risk of acute complications. Patients are often reluctant to disclose fasting to their health care providers, and their needs regarding Ramadan are not met in consultations. For healthcare professionals to provide patient-centred care, it is important to gain more insight into patients' decision-making process. This study therefore aims to explore how Muslims with diabetes decide whether to fast during Ramadan. METHODS: A qualitative study was conducted consisting of 15 focus groups with Muslims with diabetes within a constructivist paradigm. Convenience sampling was used. All focus groups were transcribed verbatim and analyzed using Braun and Clarke's reflexive thematic analysis. RESULTS: Four themes were found to be important in the decision on whether to fast: (1) values and beliefs concerning Ramadan, (2) experiences and emotions concerning Ramadan, (3) the perception of illness, and (4) advice from health care professionals, imams and family. Many participants indicated fasting against medical advice and trusting their subjective assessments on whether they could fast. Moreover, three main stages in the decision-making process for eventually refraining from fasting were identified: (1) the stage where positive experiences with fasting dominate, (2) the stage where one encounters challenges but their determination to fast prevails and (3) the stage where one decides to refrain from fasting after experiencing too many physical difficulties with fasting. CONCLUSIONS: Muslims with diabetes experience autonomy in their decisions on Ramadan fasting. The decision to refrain from fasting often resulted from a difficult and dynamic decision-making process and was often made after participants reached their physical limits. These findings highlight the importance of not only shared decision-making to empower patients to make well-informed decisions on Ramadan fasting but also pre-Ramadan diabetes education to help people with diabetes have a safe Ramadan.

Perceptions of non-Western immigrant women on having breast cancer and their experiences with treatment-related changes in body weight and lifestyle: A qualitative study.

BACKGROUND: The number of non-Western immigrants with breast cancer in the Netherlands has increased over the past decades and is expected to triple by 2030. Due to insufficient representation in clinical studies, it is unclear what the specific experiences and needs of these women are. Understanding how culture and religion affect these women's experience of breast cancer and how they deal with chemotherapy and treatment-related changes in body weight and lifestyle is crucial for health care professionals to be able to provide effective support. METHODS: A qualitative study was conducted using semi-structured interviews with 28 immigrant women with a history of breast cancer treated with chemotherapy. RESULTS: Women often associated breast cancer with taboo, death or bad luck. Religion offered these women guidance, strength and meaning to the disease, but also limited the women to openly talk about their disease. Women perceived lifestyle factors to have little influence on the development and treatment of cancer. After treatment, however, their thinking changed and these lifestyle factors became of paramount importance to them. They realised that they missed out on information about managing their own diet, exercise and body weight and were eager to share their experiences with other women in their culture with newly diagnosed breast cancer. CONCLUSION: Women became aware during and after breast cancer treatment that it was difficult for them to actively deal with their illness under the influence of their culture and religion. Based on their own experiences and acquired knowledge, they would like to give advice to newly diagnosed women on how to deal with breast cancer within their own culture and religion. Their recommendations could be used by mosques, churches, support groups and health care professionals, to ensure interventions during breast cancer treatment meet their religious and cultural needs and thus improve their quality of life.