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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 the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives to investigate whether upscaling the intervention adapted to local context and complemented by a question prompt list impacts family caregivers' uncertainty in decision-making and their satisfaction with care across six countries. Second, to investigate whether mySupport affects residents' hospitalisations and documented advance decisions. Design a pretest–posttest design. Setting in Canada, the Czech Republic, Ireland, Italy, the Netherlands and the UK, two nursing homes participated. Participants in total, 88 family caregivers completed baseline, intervention and follow-up assessments. Methods family caregivers' scores on the Decisional Conflict Scale and Family Perceptions of Care Scale before and after the intervention were compared with linear mixed models. The number of documented advance decisions and residents' hospitalisations was obtained via chart review or reported by nursing home staff and compared between baseline and follow-up with McNemar tests. Results family caregivers reported less decision-making uncertainty (−9.6, 95% confidence interval: −13.3, −6.0, P  < 0.001) and more positive perceptions of care (+11.4, 95% confidence interval: 7.8, 15.0; P  < 0.001) after the intervention. The number of advance decisions to refuse treatment was significantly higher after the intervention (21 vs 16); the number of other advance decisions or hospitalisations was unchanged. Conclusions the mySupport intervention may be impactful in countries beyond the original setting. [ABSTRACT FROM AUTHOR]

Background: A woman and girl centred, rights-based approach to health care is critical to achieving sexual and reproductive health. However, women with female genital mutilation in high-income countries have been found to receive sub-optimal care. This study examined documents guiding clinicians in health and community service settings in English-speaking high-income countries to identify approaches to ensure quality women and girl-centred care for those with or at risk of female genital mutilation. Method: We undertook a scoping review using the integrative model of patient-centredness to identify principles, enablers, and activities to facilitate woman and girl-centred care interactions. We developed an inclusion criterion to identify documents such as guidance statements and tools and technical guidelines, procedural documents and clinical practice guidelines. We searched the databases and websites of health professional associations, ministries of health, hospitals, national, state and local government and non-government organisations working in female genital mutilation in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The Appraisal of Guidelines for Research and Evaluation tool was used to appraise screened documents. Findings: One-hundred and twenty-four documents were included in this scoping review; 88 were developed in the United Kingdom, 20 in Australia, nine in the United States, three in Canada, two in New Zealand and two in Ireland. The focus of documents from the United Kingdom on multi-professional safeguarding (62), while those retrieved from Australia, Canada, Ireland, New Zealand and the US focused on clinical practice. Twelve percent of the included documents contained references to all principles of patient-centred care, and only one document spoke to all principles, enablers and activities. Conclusion: This study demonstrates the need to improve the female genital mutilation-related guidance provided to professionals to care for and protect women and girls. Professionals need to involve women and girls with or at risk of female genital mutilation in the co-design of guidelines and tools and evaluation of them and the co-production of health care. Plain Language Summary: High-quality health care for women and girls should be provided by health workers who are respectful and caring. Health workers should also work with others as a team and help women and girls make their own decisions about their health care. This approach is called patient-centred care. Female genital mutilation (FGM) is a cultural practice associated with poor health outcomes. Women who have experienced FGM have not always received quality health care. We studied the guidance and tools to help health workers provide care to women and girls with or at risk of FGM. This study aimed to understand how health workers are supported to provide woman and girl-centred health care in these documents. We searched for these documents on the websites of health professional associations, government health departments and organisations working in FGM in the United Kingdom, Ireland, Canada, The United States, New Zealand, and Australia. The documents were analysed using a tool that described all the important areas needed to provide patient-centred health care. Of the 124 documents, we found that only 12% contained information about all aspects of patient-centred care. Only one document had details about all the areas that are part of patient-centred care. This study shows that we need to improve the FGM-related guidance provided to health workers to care for and protect women and girls. There is a need for health workers to involve women and girls with or at risk of FGM in designing guidelines and tools and evaluating them to these documents best fit their needs. [ABSTRACT FROM AUTHOR]

This article reviews recent non-statutory attempts at charity fundraising regulation in the UK and Ireland. It explores the definition of success for each regime and examines whether broader policy lessons for fundraising regulation may be learnt from these implementation experiences to date. To this end, the article compares the UK framework for fundraising regulation (via the Fundraising Standards Board) with recent Irish proposals for non-statutory regulation. It also identifies the key challenges facing each regime. The article draws upon current Canadian, Dutch and American regulatory experiences and benchmarks these alternative non-statutory efforts against the Anglo-Irish models by way of comparative analysis. The article tackles the broader question of how we measure success in regulatory terms and argues for better identification of the constituency to be regulated, thereby enabling prioritisation of the salient performance indicators that should be included in any non-statutory framework. [ABSTRACT FROM AUTHOR]

The article discusses the history of the Irish language in Canada from the 17th century through the early 21st century. An overview of the history of Irish immigration to Canada, including to Canadian New France and Newfoundland, is provided. An overview of Great Britain's English language policy toward Ireland, including its impact on the language spoken by Irish immigrants to Canada, is provided. Irish linguistic preservation in Canada, particularly efforts of Canadian universities to teach the Irish language, is provided.