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Background: The Assisted Decision-Making (ADM) (Capacity) Act 2015 was enacted by Dáil Éireann in December 2015. The purpose of the act, as it applies to healthcare, is to promote the autonomy of persons in relation to their treatment choices, to enable them to be treated according to their will and preferences, and to provide healthcare professionals with important information about persons and their choices in relation to treatment. In practice, those patients with cognitive impairment, particularly dementia, and those with complex needs requiring composite decisions present the greatest challenge to healthcare professionals practicing in accordance with this legislation. Patients with complex needs requiring multifaceted decisions are often over 70 years of age and present in acute hospitals experiencing some form of cognitive impairment. Objectives: The aim of this project is to develop an educational tool which will promote understanding of ADM among healthcare professionals working in acute care settings, and encourage their adoption of this understanding into their care planning with older people. Research design: The study design for this project is mapped out over four consecutive work packages combining a multimethod approach including rapid realist review, qualitative exploration, participatory learning and action sets and intervention trialling and revision. This incremental and context sensitive approach to research design is appropriate for the exploration, development and evaluation of a complex behaviour change intervention. Conclusion: The targeted beneficiaries of this project are healthcare professionals working within acute care settings as well as older people and their family carers who are interacting with the acute care system. The potential impact is improved communication between healthcare professionals and their patients in relation to assisted decision-making and care planning. This educational intervention will be embedded into the pedagogic strategies of the RCPI in their postgraduate education curricula as well as the continuous professional development scheme.

BackgroundEmbedding Public and Patient Involvement (PPI) in postgraduate research has been recognized as an important component of post-graduate training, providing research scholars with an awareness and a skillset in an area which prepares them for future roles as healthcare researchers. Improving Pathways for Acute STroke And Rehabilitation (iPASTAR) is a structured PhD training program [Collaborative Doctoral Award (CDA)] which aims to design a person-centered stroke pathway throughout the trajectory of stroke care, to optimize post-stroke health and wellbeing. PPI is embedded at all stages.PurposeThe iPASTAR research programme was strongly informed by a round-table PPI consultation process with individuals who experienced stroke and who provided broad representation across ages, gender, geographical locations (urban and rural) and the PhD themed areas of acute care, early supported discharge and lifestyle-based interventions after stroke. Four PhD scholars taking part in the CDA-iPASTAR now work collaboratively with four stroke champions, supported by a wider PPI advisory panel.MethodsThis study will evaluate the process and impact of embedding PPI during a PhD program. We will conduct a longitudinal mixed-methods evaluation, conducting focus groups at 24, 36, and 48 months to explore the experiences of the key stakeholders involved. The participants will include PhD scholars, PPI partners (PPI Advisory Group and PPI Champions), PhD supervisors and a PPI manager. An independent researcher will conduct the evaluation. We will include focus groups, individual interviews and participant reflections. Qualitative data will be analyzed using thematic and content analysis, quantitative data will be analyzed using descriptive statistics.DiscussionPPI and patient voice initiatives bring together researchers, family, and people with health care issues into meaningful dialogue and allow the development of a patient-voice learning network. Embedding PPI training within a PhD program can build meaningful capacity in PPI partnerships in stroke research.

Background: This protocol outlines research to explore family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care. Methods: An anonymous online survey will be conducted with caregivers, both family members and paid staff, to explore their perceptions of the impact of COVID-19 in terms of demographics, living arrangements, access to services, social distancing, and carer wellbeing. The survey will be developed by the research team, many of whom are experts in intellectual disability within their own jurisdictions. Using back-translation our team will translate the survey for distribution in 18 countries worldwide for international comparison. The survey team have extensive personal and professional networks and will promote the survey widely on social media with the support of local disability and advocacy agencies. Statistical descriptive and comparative analyses will be conducted. Ethical approval has been obtained for this study from University College Dublin’s Human Research Ethics Committee (HS-20-28-Linehan). Dissemination: Study findings will be prepared in a number of formats in order to meet the needs of different audiences. Outputs will include academic papers, lessons learned paper, practice guidelines, reports, infographics and video content. These outputs will be directed to families, frontline and management delivering disability services, national-level policy makers, healthcare quality and delivery authorities, national pandemic organisations and international bodies.

The University College Dublin (UCD) PPI Ignite Connect Background: Network will fundamentally embed public and patient involvement (PPI) in health-related research, education and training, professional practice and administration in UCD's institutional structures and procedures. A significant focus of the programme of work is on actively engaging and developing long-term reciprocal relationships with seldom heard groups, via our ten inaugural partners. This rapid realist review will explore what are the mechanisms that Methods: are important in actively engaging seldom heard groups in health and social care research. The review process will follow five iterative steps: (1) clarify scope, (2) search for evidence, (3) appraise primary studies and extract data, (4) synthesise evidence and draw conclusions, and (5) disseminate findings. The reviewers will consult with expert and reference panels to focus the review, provide local contextual insights and develop a programme theory consisting of context-mechanism-outcome configurations. The expert panel will oversee the review process and agree, via consensus, the final programme theory. Review findings will follow the adopted RAMESES guideline and will be disseminated via a report, presentations and peer-reviewed publication.The review will update and consolidate evidence on the Discussion: mechanisms that enable the reciprocal engagement and participation of 'seldom heard' groups in health and social care research. Via the expert and reference process, we will draw from a sizeable body of published and unpublished research and grey literature. The local contextual insights provided will aid the development of our programme theories. This new evidence will inform the design and development of the UCD PPI Ignite program focused on ensuring sustained reciprocal partnerships.