A Leaflet describing the work of the Centre for Intellectual and Developmental Disabilities at the University of Ulster

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A Leaflet describing the work of the Centre for Intellectual and Developmental Disabilities at the University of Ulster
  Centre for Intellectual andDevelopmental Disabilities University of Ulster/Health and Social Care Board Appendix 1: Present Membership of the Centre Name Job Title Owen Barr Professor and Head of SchoolRosario Baxter LecturerWendy Cousins LecturerRoy McConkey Professor – Joint appointment with HSC BoardBrian McGowan LecturerEamonn Slevin ReaderMargaret Sowney LecturerLaurence Taggart LecturerLisa-Marie Hanna PhD studentDorry McLaughlin PhD studentJoe Tracey PhD studentOrla Watt PhD studentOwen Doody PhD Student (part-time)Liz McKeown PhD Student (part-time)Michael McKeown PhD student (part-time) Research Associates Maurice Devine Nursing Ofcer, DHSSPS Sandra Dowling Research ConsultantMaria Truesdale-Kennedy Research AssociateDiane Harvey-Smith Research Associate (part-time)  Background The Intellectual and Developmental Disabilities Research Group within the Institute ofNursing Research at the University of Ulster was established in 1997 with the appointmentof Professor Roy McConkey: a jointly-funded post with the then Eastern Health andSocial Services Board. It is one of the leading research centres on learning disabilityin these islands with a growing international reputation. In 2010 it became the RegionalCollaborating Centre for Special Olympics in Europe/Eurasia (jointly with the Sports andExercise Research Institute at Ulster).The group of eight staff and seven doctoral students has around 150 publications inpeer-reviewed journals and research income in excess of £1.5 million. It has strongcross-border links with Trinity College, Dublin and with similar centres around the world. Aims of the Centre: • To initiate research and evaluation projects that will inform the development andorganisation of policy and services for people with disabilities taking account of therecommendations in the Bamford Review of Mental Health and Learning Disability. • To undertake research into the health and wellbeing of children and young people,and with their families. • To forge alliances with practitioners and users, primarily in the Health and SocialCare Agencies and with the independent sector, but also in Education, Housing andEmployment. • To undertake joint projects with similar research groupings and networks primarilyin Ireland and UK but also internationally. • To forge alliances with the wider research community to further the inclusion ofpeople with disabilities in mainstream projects. • To respond to requests from agencies wishing to undertake research andevaluation of services relating to developmental disabilities and to children, youngpeople and their families. • To communicate the insights from research and promote evidence-based practicethrough training courses, publications and workshops. Programmes of work The Centre focuses on three main strands of work. These are informed by therecommendations contained in the Bamford Review of Mental Health and LearningDisability but have national and international applicability. • Vulnerability and complex needs  This includes issues such as: • Challenging behaviour and mental health problems. • Development of communication and social skills. • Building self-esteem and resilience. • Supporting family carers. A model of vocational training and employment for young adultswith developmental disabilities Paid employment is an aspiration of many young people with developmental disabilitiesand in recent years great strides have been made in making this a reality. However itrequires a complex network of supports. In Belfast, the Orchardville Society has been tothe fore in developing a model of service designed to meet these challenges. This studyaims to describe and validate their model and to test its applicability more widely so asto inform service transformation regionally as well as nationally and internationally. The Orchardville Society is funding this study as part of their ESF Programme. Past projects A description of past projects in contained in the Annual Reports of the Institute ofNursing Research. These can be down-loaded at:http://www.science.ulster.ac.uk/inr/groups/ddch/projects.html. Collaborations Centre staff have ongoing links with the following centres and research groupings.  Translational Research Group for Mental Health, Learning Disability and Ageing (sponsored by the R& D ofce: NI)  National Institute of Intellectual Disability, Trinity College, Dublin.  Health Research Board, Dublin  Albany Center for Excellence in Aging Services. State University of New York.  Centre for Disability Studies, University of Cape Town, South Africa  Centre for Disability Studies, University of Sydney, Australia  Global Collaborating Centre for Special Olympics, Centre for Social Developmentand Education, University of Massachusetts, Boston. Publications A listing of recent publications by Centre staff is available from this web site.http://www.science.ulster.ac.uk/inr/publications/index.html  • Promoting the health and wellbeing of people with developmental disabilities  This includes: • Health ageing. • Accessing healthcare services • Enhancing emotional well-being • Health promotion strategies for vulnerable groups and their carers. • Social Inclusion and Advocacy  Topics include: • Sports and leisure • Education options and choices • Accommodation and Employment options • Citizenship and participation in decision-making. Cross-cutting themes  Within each programme, our research has a strong focus on the person withinthe context of the family and local community.  We endeavour to take a life-span perspective from early childhood to old age.  We aim to involve users of services in our project planning and implementation.  Service evaluations will be undertaken as part of our programme of work. Ongoing Research Projects • Vulnerability and complex needs  Impact on younger siblings of having a child with ASD in the family Younger siblings are at risk of delays in their communication and language development.This study looks at communications within the family when there is a child with ASD anduses a mix of observational measures and interviews to monitor possible impacts on thelanguage acquisition and communication development of siblings aged between 18 and30 months. Orla Watt obtained a DEL studentship to undertake this doctoral research. Supporting families whose children have severe challenging behaviours Three services in Scotland and Wales have been developed especially to meet the needsof these young people and their families and the evaluation aims to identify the featuresthat have most impact on their lives. This includes short-break (respite) provision as wellas in-home supports and advice to parents. This evaluation has been commissioned by Action for Children (UK). Care for the Rare: Inherited Metabolic Disorders & Paediatric Pathways inPrimary Care Inherited metabolic disorders (IMDS) are a group of individually rare yet collectively notuncommon diseases which usually affect children although increasingly adult phenotypesare being described. A lack of accurate epidemiological   data creates difculties for those seeking to plan and provide   appropriate clinical services for these patients. This researchwe are working with co-researchers with intellectual disabilities to document people’slives and their aspirations. Nearly 200 persons have participated in focus groups held around the island and the ndings will be used to stimulate debate about ways in peoplecan be empowered to live more fullled lives. A further strand involves the collection of life-stories of persons aged 55 years and over which will be available in a speciallyconstructed web-site. This research is funded by an EU Marie Curie Grant to Trinity College, Dublin. Promoting the social inclusion of children and young people with AutismSpectrum Disorders (ASD) AutismNI have developed a number of innovative programmes aimed at developingthe social competence of young people with ASD. These include training in socialskills, promoting their inclusion in mainstream leisure and youth activities, and issuesaround sexuality and relationships. Evaluations are undertaken to help develop theseprogrammes and encourage their wider implementation. AutismNI fund this research in part with grants from Children in Need. Transitions and young people with Autism Spectrum Disorders (ASD) Increasing number of young people are now entering secondary education with a diagnosis of ASD. Within three to ve years there will be a marked rise in the numbers seeking post-school placements. The views of parents, the young people and of staffworking in education, health and social services, were sought in order to lay the groundfor the services and supports that will be required by the young people and their families. The Health and Social Care Board in association with the Belfast and South-Eastern Education and Library Boards commissioned this study. Furthering the social integration of youth through Unied Sports (2009-2011) Special Olympics International have commissioned an evaluation of the Unied Sports Programme that they provide in various European countries. This involves data collectionfrom the various stake-holders – athletes, partners, coaches as well as family members and community representatives. This will be the rst cross-cultural exploration of the social inclusion of teenagers and young adults. This research is undertaken with Dr David Hassan from the Sports and Exercise Research Institute and funded by a grant to Special Olympics from U.S. Centers for Disease Control and Prevention. Coaching in the context of Special Olympics World Games Building on the success of the above project, the Centre has been commissioned bySpecial Olympics International to undertake an evaluation across four countries fromaround the world as to how athletes are prepared for competing at international eventssuch as the next World Games in Athens, 2011. This research is undertaken with Dr David Hassan from the Sports and Exercise Research Institute and funded by a grant to Special Olympics from U.S. Centers for Disease Control and Prevention.  takes an exploratory approach to analyzing data held on the General Practice ResearchDatabase with regard to the care provided to children with Inherited Metabolic Disorders. This research is funded by an Institute of Nursing Research Fellowship award. The needs of children and adolescents on assisted ventilation at home A growing number of children are discharged from hospital who are reliant on assistedventilation. This study looks at the impact on their lives and that of their families and alsoreviews the experience of the various professional staff who support these young people. Brian McGowan is undertaking this study as part of his doctoral studies. Inreach Family Support for children with complex physical healthcare needs Following on from research previously undertaken by Centre staff at the request of the Chief Nursing Ofcer, DHSSPS, the Cedar Foundation in association community children’s nursing of the Belfast HSC Trust sought support from the Big Lottery to developa model of home support to give parents a break from caring for their son or daughterwith complex needs. The evaluation will consider the impact of the service from theperspectives of the main stakeholders. The evaluation is funded by the Big Lottery. Development of a health promotion module The aim of this project is to transfer knowledge to teachers, classroom support assistants,health care staff and parents involved within mainstream and special schools in order topromote the physical and mental health of children and adolescents with learning andother developmental disabilities. This will take the form of blended e-learning resourcesupported by face-to-face workshops. The project is funded by the R&D Ofce (NI) . • Promoting the health and wellbeing of people with developmental disabilities. Ageing in persons with an Intellectual Disability: An all-island, longitudinal study   In association with Trinity College Dublin, we are piloting instruments to be used in aproposed longitudinal study of ageing in people with an intellectual disability aged 40years and over in 2009/2010. This will link with the Longitudinal Study of Ageing in theGeneral population that is underway in the Irish Republic and provide comparative data for the rst time internationally. This is funded by a small cross-border grant from Centre for Ageing Research and Development in Ireland (CARDI). Developing an Epilepsy Care Plan In the UK around 450,000 people have epilepsy, one in every 131 of the population. Aneffective, coordinated epilepsy service can reduce morbidity and improve quality of life for people with epilepsy and their families however a raft of reports over the last fty years have continued to criticise epilepsy care standards. This study seeks to improvehealth care services for people with epilepsy by reviewing relevant research and policy,providing an important conduit for the views of all stakeholders (and in particular, thevoice of the patient) in order to develop an outline for a patient-centred care plan. This project is funded by Epilepsy Action. The palliative care of people with intellectual disabilities An educational resource is being developed and evaluated for use with specialist palliativecare teams and learning disability staff to address the particular needs of persons with anintellectual disability at the end-of-life. This will be informed through information gatheredfrom carers, professional staff and advocacy groups. Dorry McLaughlin has been funded  by a R&D Ofce HSC Fellowship to undertake this research as part of her doctoral studies.   The experiences of women with learning disabilities accessing breast screening services (2009) The aim of this preliminary study is to identify the experiences of women with LD, theircarers and primary care staff concerning breast screening uptake. This qualitative studywill involve a series of focus groups with women with LD (aged 50-70yrs), their familycarers and residential staff, to identify the factors that lead them to use services and alsothe factors that prevent them from utilising these facilities. Other focus groups will beheld with GP’s, primary care staff and community learning disability nurses to exploretheir perspective and experience and of providing breast screening to women with LD inNorthern Ireland. Funded by the Breast Cancer Campaign. The impact of an educational programme on the emotional literacy skills of women who have a learning disability (2008/2009) The main aim of the study is to evaluate the effectiveness of an educational programmetargeted at improving the emotional literacy skills of women who have a learning disability(i.e. empowerment and self-esteem). This is a quantitative study involving two groups ofwomen: one group of women with learning disabilities will receive a nine month educationprogramme and another group of women with learning disabilities will act as a control group. The education programme will be co-ordinated and delivered by two identied staff working within Compass Advocacy Network. Planning for the future: an exploration of the needs of older family caregivers ofolder people with learning disabilities living at home This project aims to aid policy planners, commissioners and service providers inascertaining and meeting the future needs of older family caregivers of older personswith learning disabilities living at home. Currently there is little known about the physicaland mental health, resilience, care burden, service experiences and in/formal supportnetworks of older family caregivers who provide care for older PWLD: and the intertwinedneeds of these ‘two-generation elderly families’.   The project also aims to study the roleof people with learning disability in caring for older parents. This project is funded by a grant from the Dunhill Medical Trust. • Social Inclusion and Advocacy  “All we want to say”: the lives of people with intellectual disabilities on the islandof Ireland In association with the National Institute for Intellectual Disability at Trinity College Dublin,
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