Context Patient engagement in research consists in involving patients as partners across the research cycle. This practice has quickly become an international standard, with funding bodies actively encouraging it. As the increased incentive to engage patients can lead to tokenistic partnerships, it is important to consider the experiences of patient-partners. Objective To synthesize the qualitative literature on the experience of patients as partners in research. Design A systematic review of the literature with thematic synthesis was realized, guided by the framework developed by Thomas and Harden (Bmc Med Res Methodol 8: 45, 2008). Data collection A search strategy was developed to encompass keywords relating to patient-partners in research, their experience, and the qualitative nature of the target studies. 10 databases were searched using the EBSCO-host engine, along with the Scopus engine to include EMBASE. The search results were screened for the following inclusion criteria: articles written in English; articles reporting on the experience of patient-partners in research; qualitative studies or mixed-methods studies with a distinct qualitative section. Analysis Included articles were charted for general information. The CASP qualitative checklist was used for critical appraisal. The “results” section of each article was coded line by line. Codes were aggregated inductively to form descriptive themes and analytical themes, in order to synthesize the ideas found in the selection of articles. Results The initial search yielded 10,222 results. After the removal of duplicates, 5534 titles and abstracts were screened, 88 full-text reports were evaluated, and 41 studies were included. Articles reporting on these studies were published between 2005 and 2020. Seven themes emerged from the analysis: “motivations to engage in research”, “activities in patient engagement”, “structure”, “competence”, “team dynamics”, “impacts on broader life”, and “illness”. Articles reported varying degrees of perceived impact on research and satisfaction concerning the level of engagement. The importance of power differentials and team dynamics were widely stated. Conclusions Findings provide an in-depth view of the experiences of patient-partners in research. Most articles reported a generally positive experience, but challenges and pitfalls of patient engagement were identified. This will serve research teams by highlighting good practices and possible improvements.

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Context Implicating patients in research is gaining popularity around the world and is now the reference of many funding agencies. Understanding these partnerships is necessary to grasp this new reality. The experiences of researchers who have involved patient-partners (PPs) in health research are important for a better understanding of these practices. Objective This study aimed to identify and analyze the existing qualitative scientific literature on the experiences of academic researchers involved in health research with patient engagement (PE). Design A scoping review of the available literature with an inductive thematic synthesis, guided by the methodological framework of Arksey and O’Malley. Data collection A search strategy was developed to include keywords relating to researchers, patient-partners, experiences, and the qualitative methodologies of the targeted studies. Five databases were searched using the EBSCO-host engine. The search results were screened by four reviewers to only include articles written in English on the topic of the experience of academic researchers having worked with PPs in health research based on qualitative studies or mixed-methods studies with a distinct qualitative section. Analysis Articles included were charted for general information. All “results” sections were coded line by line. These codes were organized inductively to form descriptive and analytical themes. This led to the synthesis of the ideas found in the selected articles. Results The search strategy yielded 7616 results, of which 2468 duplicates were removed. The remaining 5148 articles were screened, resulting in the exclusion of 5114 off-topic studies. The remaining 29 full-text articles were evaluated for inclusion from which 5 additional studies were identified. The final selection consisted of 11 articles that met all the criteria. These articles were published between 2009 and 2019. Five general themes inductively emerged from the analysis: the understanding of PE, motivations, contexts, attitudes, and practical aspects of PE that are central to researchers. Conclusion This scoping review provides a better understanding of the experiences of researchers who have implemented patient partnerships in health research projects. Our findings reveal many positive elements central to health researchers’ discourses about PE, but they provide insights into the challenges and postures of resistance. This knowledge can support the development of empirically sound improvements in PE practices.

Gambling disorder is a major public health issue in many countries. It has been defined as a persistent, recurrent pattern of gambling and is associated with substantial distress or impairment, lower quality of life, and living with a plurality of psychiatric problems. Many people suffering from gambling disorder seek help in ways other than formal treatment seeking, including self-management strategies. One example of responsible gambling tools that has gained popularity in recent years is self-exclusion programs. Self-exclusion entails individuals barring themselves from a gambling venue or a virtual platform. The aim of this scoping review is to summarize the literature on this topic and to explore participants’ perceptions and experiences with self-exclusion. An electronic literature search was conducted on 16th May 2022 in the following databases: Academic Search Complete, CINAHL Plus with Full Text, Education Source, ERIC, MEDLINE with Full Text, APA PsycArticles, Psychology and Behavioral Sciences Collection, APA PsychInfo, Social Work Abstracts, and SocINDEX. The search yielded a total of 236 articles, of which 109 remained after duplicates were removed. After full-text reading, six articles were included in this review. The available literature shows that although there are many barriers and limitations to the current self-exclusion programs, self-exclusion is generally viewed as an effective responsible gambling strategy. There is a clear need to improve the current programs by increasing awareness, publicity, availability, staff training, off-site venue exclusion, and technology-assisted monitoring, as well as by adopting more holistic management approaches to gambling disorders in general.

IntroductionResearch undertaken since the beginning of the COVID-19 pandemic has provided us information about the impact of the pandemic on the gambling habits of the general population. However, very little is known about certain subgroups at increased risk of developing gambling disorder, such as the LGBTQIA2S+ population. The purpose of this study is to describe the impact of the COVID-19 pandemic on gambling behaviours among LGBTQIA2S+ individuals. In addition, we want to understand the experiences of the LGBTQIA2S+ population with gambling disorder and identify interventions that LGBTQIA2S+ people have found to be effective in addressing problem gambling during the COVID-19 pandemic.Methods and analysisThis study has a sequential explanatory mixed-method design in two phases over 2 years. The first phase is a correlational study. We will conduct a cross-sectional survey using a stratified random sampling among Canadian residents who are 18 years of age or older, self-identify as sexually and gender-diverse (ie, LGBTQIA2S+) and have gambled at least once in the previous 12 months. This survey will be administered online via a web panel (n=1500). The second phase is a qualitative study. Semistructured interviews will be conducted with LGBTQIA2S+ people with problematic gambling (n=30).Ethics and disseminationThis research project has been ethically and scientifically approved by the Research Ethics Committee and by the CIUSSS de l’Estrie—CHUS scientific evaluation committee on 3 March 2022 (reference number: 2022-4633—LGBTQ-JHA). Electronic and/or written informed consent, depending on the data collection format (online survey and online or in-person interviews), will be obtained from each participant. A copy of the consent form and contact information will be delivered to each participant.