Now showing 1 - 3 of 3
  • Publication
    What are the mechanisms that enable the reciprocal involvement of seldom heard groups in health and social care research? A rapid realist review protocol
    Background: The University College Dublin (UCD) PPI Ignite Connect 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. Methods: This rapid realist review will explore what are the mechanisms that 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. Discussion: The review will update and consolidate evidence on the 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 Via the expert and reference process, we will draw from a sizeable body of published and unpublished research and grey literature.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.
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  • Publication
    “What Bothers Me Most Is the Disparity between the Choices that People Have or Don’t Have”: A Qualitative Study on the Health Systems Responsiveness to Implementing the Assisted Decision-Making (Capacity) Act in Ireland
    Objective: The Assisted Decision-Making (ADM) (Capacity) Act was enacted in 2015 inIreland and will be commenced in 2021. This paper is focused on this pre-implementation stage withinthe acute setting and uses a health systems responsiveness framework. Methods: We conductedface-to-face interviews using a critical incident technique. We interviewed older people includingthose with a diagnosis of dementia (n=8), family carers (n=5) and health and social care professionals(HSCPs) working in the acute setting (n=26). Results: The interviewees reflected upon a healthcaresystem that is currently under significant pressures. HSCPs are doing their best, but they are oftenhalted from delivering on the will and preference of their patients. Many older people and familycarers feel that they must be very assertive to have their preferences considered. All expressedconcern about the strain on the healthcare system. There are significant environmental barriers thatare hindering ADM practice. Conclusions: The commencement of ADM provides an opportunityto redefine the provision, practices, and priorities of healthcare in Ireland to enable improvedpatient-centred care. To facilitate implementation of ADM, it is therefore critical to identify andprovide adequate resources and work towards solutions to ensure a seamless commencement ofthe legislation.>
      285Scopus© Citations 12
  • Publication
    Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process
    Objective: Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research. Methods: A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories. Main results: From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6). Conclusions: While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.
    Scopus© Citations 34  537