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Background: Patient and public involvement (PPI) is a critical priority in research, policy, academia and advocacy organizations. PPI in dementia research is gaining momentum. However, these efforts are missing in international projects aimed at those living with advanced dementia in long‐term care (LTC) homes. Additional complexities can arise in enacting PPI within the context of integration of a palliative approach to care and experiences around end‐of‐life in (EOL) dementia. The mySupport study involved implementing the Family Carer Decision Support (FCDS) intervention for care partners of those living with advanced dementia in LTC in six countries. Research Design and Objective: An interpretive description study was conducted to explore the perspectives of international researchers from six countries on engaging people with lived experiences of dementia and EOL care in research processes. The findings from this study informed the development of a PPI strategy and a subsequent toolkit for the FCDS intervention. Findings: Thirty‐eight interviews were completed with project researchers: 12 from the United Kingdom, 8 from Canada, 7 from Ireland, 4 each from Italy and The Netherlands and 3 from the Czech Republic. Four broad themes describe international researchers' perspectives on advancing methods of engagement for people with lived experiences of dementia and EOL in international PPI activities: (1) Groundwork to engage in research; (2) planning for research activities is key; (3) focus on meaningful engagement and (4) having foresight for practical issues shaping PPI. Discussion and Implications: International projects that involve PPI can present many sources of challenges. The findings in this study highlight important considerations for foundational work for incorporating PPI in international projects. Learning from world leaders and those with lived experiences in various regions can be insightful and help share tools and resources. Patient or Public Contribution: PPI was envisioned as a critical part of conducting the mySupport study. The findings from this study informed the development of a PPI strategy and an international Strategic Guiding Council that included family carers of those living with advanced dementia in LTC homes in six countries. This manuscript focused on the perspectives of researchers on their engagement with people with lived experiences of dementia and EOL. The perspectives of persons with lived experiences on engaging in the mySupport research study will be reported in a forthcoming manuscript. [ABSTRACT FROM AUTHOR]

Background: Fibromyalgia is a chronic pain condition which has recently been linked with eating, drinking and swallowing difficulties (dysphagia). However, to date, sample sizes within completed research are small and study designs heterogeneous, and therefore, little is known about the lived experiences of dysphagia among people with fibromyalgia. To go some way towards addressing this gap in the literature, this study collected and analysed the first‐hand experiences of the physical symptoms, the psychosocial impacts and environmental factors that influenced the lived experience of a sample of people living with fibromyalgia‐associated dysphagia. Methods: Qualitative semi‐structured interviews were conducted with adults with dysphagia and fibromyalgia. Reflexive thematic analysis was employed and themes were identified regarding the reported experience and impact of swallowing problems. The same researcher conducted the interviews and extracted all data, and a second researcher analysed a random sample of 5% of the data for accuracy, with no disagreements arising between the two researchers. Results: All participants (n = 8) reported the negative psychosocial impact of their dysphagia. Participants reported managing their dysphagia independently, primarily using compensatory strategies. Participants discussed feeling unsupported in healthcare interactions due to clinicians not understanding the occurrence, nature or impact of eating, drinking and swallowing difficulties. Participants also reported that they did not have access to evidence‐based management strategies that adequately addressed their fibromyalgia‐related swallowing problems. Conclusions: Despite minimal previous research in this area, findings here highlight the impact that dysphagia has on people with fibromyalgia. A broad range of physical symptoms were reported to have negative consequences across both social and emotional domains. The reported symptoms often required complex coping strategies and sometimes impeded participants from seeking suitable medical intervention from healthcare providers. There are both broad‐ranging implications of fibromyalgia‐associated dysphagia and reported poor perceptions of medical interactions for this cohort of patients. Therefore, there is evidently a need for clinical research into the management of this condition to develop patient‐centred care delivery options and to equip healthcare professionals with the knowledge and skills necessary to provide efficacious management to this group. Patient or Public Contribution: Before initiation of the qualitative interviews, the interview schedule was piloted with an individual living with fibromyalgia and dysphagia, with feedback provided on the appropriate wording and format of semi‐structured questioning. [ABSTRACT FROM AUTHOR]