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- PublicationThe PIPPIN Project; Paediatric Intensive care Public Patient INvolvement, Where we started…The benefits of involving patients, families and service users in developing, implementing and evaluating healthcare services and research are being increasingly recognised. These include enhanced health outcomes, increased satisfaction with services and adherence to treatment. However, despite growing effectiveness of Paediatric Intensive Care (PIC) treatment and outcomes, there is a deficit in published evidence demonstrating the involvement of children and young people cared for in the Paediatric Intensive Care Unit (PICU) in developing research that matters to them. In this context PIPPIN was developed with the aim of promoting Paediatric Intensive Care Public and Patient involvement.
- PublicationSubmission to the Department of Justice and Equality Public Consultation on Flexible WorkingAs part of Future Jobs Ireland, Minister for Business, Enterprise and Innovation, Heather Humphreys TD, and Minister of State David Stanton TD, launched a public consultation on flexible working to inform the development of a national flexible working policy. The consultation is seeking the views of employees, employers, trade unions and the general public to help inform the future employment policy. In the face of changing demographics and an aging population, the provision of flexible work arrangements is becoming an increasingly pertinent issue for family carers who balance paid work with caregiving responsibilities for a person with a disability, chronic illness or frailty. This submission, by the CAREWELL team, aims to highlight the importance of flexible working options for these family carers.
- PublicationColliding worlds: Family carers’ experiences of balancing work and care in Ireland during the COVID‐19 pandemicThe COVID-19 pandemic public health and social protective measures imposed globally resulted in partial or full closure of key services and supports for people with a disability, chronic illness or age-related dependency. This caused huge disruption to care provision and family carers were relied upon to assume this care at home. Many family carers, including those in employment, found themselves navigating additional care responsibilities without ‘usual levels’ of support from family, friends, work, school, day care services, homecare and community services. The purpose of this study was to examine the impact of the COVID-19 pandemic on family carers, their employment and caregiving responsibilities, through the lens of the Conservation of Resources (COR) theory (Hobfoll, 1989). Adopting a qualitative research approach, sixteen family carers (14 females, 2 males) who were in employment prior to the onset of or during the pandemic, participated in an in-depth, semi-structured telephone or online video interview between June and September 2020. Interviews lasted between 45 and 100 minutes, were audio-recorded and transcribed verbatim. A thematic analysis of the interview data identified four main themes: colliding worlds; navigating unchartered waters alone; opportunity despite adversity; and the relentless unknowing. Findings indicate that the onset of the pandemic resulted in the sudden loss of valued resources, which disrupted routines and caused care and work life domains to become intrinsically intertwined. Consistent with the main principles of the COR theory, adapting and transitioning to different ways of working and caring with depleted resources and supports, generated considerable stress for family carers and impacted their wellbeing. The implications for employers, healthcare providers, policy makers and other key stakeholders are considered, to enable family carers to successfully reconcile work with care and protect their wellbeing, as the pandemic continues to unfold and in the event of future societal crises.
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- Publication“To stop #FGM it is important to involve the owners of the tradition aka men”: An Exploratory Analysis of Social Media Discussions on Female Genital MutilationFemale genital mutilation (FGM) remains a significant public health challenge and affects the lives of a million girls and women. Advocacy by men and their involvement in fighting the practice may influence the intention to have it performed; however, men often lack the opportunities and support to voice their stand. Increasingly, social media platforms are becoming effective and culturally relevant communication channels to engage ‘hard-to-reach’ populations on sensitive topics. This study explored the views on the involvement of men in discussions about FGM on Twitter. Data were obtained from Twitter-based activity for February 5th and 6th 2017 to coincide with the International Day of Zero Tolerance for FGM using the search terms ‘FGM and Men’. Thematic data analysis was conducted using a data- driven inductive approach and resulted in four main themes a) Prevailing attitudes of FGM b) Support for FGM c) FGM is an issue for men and d) Strategies to effect change. Our study suggests that men can play a role in the continuation of FGM but can also rally the abandonment of the practice. However, men were considered disengaged from the issue as most consider FGM a woman’s issue. The need to empower men through health literacy was deemed particularly influential in creating awareness and ultimately change. Young men may, in certain contexts, be important agents of change and male musicians or sportsmen may particularly be influential in effecting change. Our findings demonstrate that increased use and involvement of ‘hard to reach’ populations with social media can offer a window into real-time ongoing discussions of sensitive topics like FGM. Exploring the use of social media platforms and the content of the discussions among these populations can offer valuable insights of their perspectives on where change is needed in terms of designing effective interventions.
- PublicationWhat are the mechanisms that enable the reciprocal involvement of seldom heard groups in health and social care research? A rapid realist review protocol(Health Research Board, 2018-02)
; ; ; ; ; ; ; ; ; ; ; ; ; ; ;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. 388
- PublicationA systematic review and narrative synthesis of the experiences of caring for older people living with dementia in sub-Saharan AfricaThe broad review question will be: What are the experiences of caring for older people with dementia in sub-Saharan Africa (SSA)?
- PublicationAddressing Health and Wellbeing Challenges for Homeless Children and Families Living in Temporary and Emergency AccommodationData from homeless charities and service organisations suggest that the number of homeless families with young children has been increasing in Ireland, and particularly in Dublin, in recent years. In October 2019 in Ireland, 1700 families including almost 1000 single parents and 3826 children were in this situation. In Dublin this accounted for 1270 families, 700 single parents and 2795 children.
- PublicationDoes the sun hold the key to improving the lives and well-being of a growing older population in rural Africa?Globally the number of older people is rising. In Africa the number of people over 60 years is expected to increase from just under 50 million to nearly 200 million by 2050 1. Generally the number of older persons is growing faster in urban areas than in rural areas 1 however, a large share of the elderly reside in rural areas, where support and services are more difficult to find 2. Many older people across sub-Saharan Africa (SSA) live in chronic and profound poverty. Increasingly, older people also live alone or are disconnected from their families who may have moved into the cities or even abroad 3. Despite the changing demographics of Africa, the older population has largely remained invisible in international development initiatives and related health policy discourses. As a result, SSA is lagging in investment and development of infrastructure and support programs to meet the needs of their ageing citizens. Preparing for an ageing population is vital to achieving the goals of poverty eradication, good health, gender equality, economic growth and decent work, reduction of inequalities and creation of sustainable cities as set out in Agenda 2030 for sustainable development 4.
- PublicationWhy Should the Welfare of Therapy Animals Involved in Animal Assisted Interventions Matter to Child Healthcare Researchers and Professionals?The rising interest of Human Animal Studies (HAS) within academia is linked to the animal protection movement, debate, and interest in animals as a subject worthy of philosophical and ethical inquiry (DeMello, 2012). The moral considerations of animal welfare were highlighted by two humanistic philosophers, Singer (1975) – Animal Liberation, and Regan (1983) – The Case for Animal Rights. They raised concerns around factory farming, especially in relation to excessive usage of crates to house animals, such as pigs, indoors. The intense confinement practices in agriculture, in the 1970s, raised public awareness on animal welfare in the 1980s and led to further exploration in this area through the study of human-animal relationships (Shapiro, 2020).
- 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 IrelandObjective: 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.>
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