Our Research

COVID-19 IDD: A global survey exploring family members’ and paid staff’s perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers

In 2020, Associate Professor Christine Linehan received grant funding from the Health Research Board to explore caregivers’ perceptions of the impact of COVID 19 on individuals who have intellectual and developmental disabilities and their caregivers. Under the auspices of the Comparative Policy and Practice Special Interest Group of IASSIDD ((opens in a new window)https://iassidd.org/) a total of twenty-six researchers worldwide collaborated to undertake an online survey of caregivers in 18 countries. A list of the collaborators is presented below.

The study protocol and study findings from 3,745 participants are openly published by the Health Research Board and can be accessed in full here (opens in a new window)https://hrbopenresearch.org/collections/coronavirus (type COVID-19 IDD into the search box on the right of the page). The curated dataset, data dictionary and other documentation is openly published on the Open Science Framework and can be accessed here (opens in a new window)https://osf.io/gk2vf/ Our group encourages others to access this dataset for secondary data analysis.

A series of infographics below highlight some of the key findings

Click here to download the info graphics as pdf.

Meet our Collaborators

Leadership

Recent exposure of the mistreatment of individuals with intellectual disabilities at Aras Attracta has shocked the disability sector in Ireland.  Addressing this expose, the Centre is working with colleagues from Trinity College Dublin on the need for leadership in the disability sector. The Centre has contributed to a new book on this topic led by Associate Professor Fintan Sheerin who was pivotal in exposing the abuse at Aras Attracta. Leadership for Intellectual Disability Services: Motivating Change and Improvements (in press for 2019) aims to respond to the failings in leadership evident in scandals both at home and abroad.  The Centre is leading on a submission to the IASSIDD (the International Association for the Scientific Study of Intellectual and Developmental Disabilities) 2019 World Congress for a symposium on leadership supported by Trinity College and the Tizard Centre, University of Kent.

Inclusive Research

In conjunction with colleagues at Radboud University Medical Centre in the Netherlands, the Centre has supported a number of research activities investigating good practice in inclusive research. Inclusive research involves actively involving people with intellectual disabilities in various aspects of disability research, such as formulating the research question, gathering and analyzing data, and interpretation and dissemination of findings.   This collaboration has produced the first structured literature review on inclusive health research published in Research in Developmental Disabilities and a consensus statement on inclusive research issued by an international group of researchers published in the Journal of Intellectual Disability Research.

Living in localities: do people with intellectual disabilities really belong in their neighbourhoods?  Examining social inclusion and neighbourhood connectedness of adults with intellectual disabilities.

Geraldine Boland (PhD candidate) is examining the extent to which adults with intellectual disabilities engage with and have a sense of belonging in their neighbourhoods. The lived experiences of adults with intellectual disabilities of their local areas will be explored, along with the role of adult siblings in supporting participation. The actions of service providers related to supporting social inclusion in localities is also considered. Geraldine presented early findings from a systematic review of the international literature on social inclusion in neighbourhoods at the International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) European Congress on Diversity and Belonging in 2018. A second oral presentation on the conceptual frameworks on social inclusion in neighbourhoods and measurement tools is included in the IASSIDD Futures for All, World Congress in August 2019.

Contact by email: geraldine.boland@ucdconnect.ie    Twitter: @gmboland1

Precious Jenga is completing a Doctorate of Governance, supervised in collaboration with the Institute of Public Affairs.  This research explores how multidisciplinary teams in disability organisations come to a decision on whether a fictitious person with an intellectual disability is ready to move from a congregated setting to a life in the community. The research is of relevance for the national deinstitutionalisation programme which aims to move thousands of individuals to community living.

Shauna McGillen is conducting research supported by the Dublin Region Homeless Executive (DRHE) investigating attitudes towards individuals with intellectual disability held by staff working in homeless services. This research follows from the Centre’s collaboration with DRHE in hosting “Intellectual Disability Awareness Session for Homeless Services Staff” in December 2017. The event was attended by DRHE staff, and staff working in voluntary agencies including the Peter McVerry Trust, Focus Ireland and Crosscare.  This event aimed to create awareness among staff working in homeless services of the specific needs of individuals who present with intellectual disabilities. The event highlighted the need for further research in this area.  Preliminary findings from this research have been submitted for consideration at the IASSIDD (the International Association for the Scientific Study of Intellectual and Developmental Disabilities) World Congress which hosted in Glasgow in 2019.

ESBACE, the European Study of the Burden and Cost of Epilepsy in Europe

ESBACE is an EU funded consortium of 19 European centres that aims to explore the burden of epilepsy across four European countries employing a standard methodology.  The UCD Centre for Disability Studies is one of four leading partners including Aarhus University, the Karolinksa Institutet and the University of Liverpool. The objectives of ESBACE are to firstly, develop and apply a common case ascertainment methodology to validly enumerate this population inclusive of the new clinical definition of epilepsy, and secondly, compare quality of life and cost outcomes between epilepsy cases and matched controls using a 12-month prospective case-control design. This study links with numerous international bodies including the International League against Epilepsy, the International Bureau for Epilepsy and Epilepsy Alliance Europe.  Prof Jakob Christensen who leads this research recently met with MEPs to discuss this research at European Epilepsy Day, 12th February 2019, at the European Parliament.  Publications from this research are now in preparation with a first study, outlining the provision of epilepsy care in Europe accepted for publication in Epilepsia Open.

Acquired Brain Injury and Suicide

This research, conducted with the support of Acquired Brain Injury Ireland, explores the relationship between acquired brain injury and suicide. Ciara Higgins commenced this research by conducting a scoping review of literature on individuals who sustain their acquired brain injury as a consequence of a suicide attempt. This scoping review is now submitted to the peer reviewed journal Brain Injury for consideration. Adam Nolan continues this research by examining suicide awareness and knowledge among staff supporting people with acquired brain injury. Acquired Brain Injury Ireland ask that this research be submitted for consideration to the World Congress of Brain Injury 2021 which will be hosted in Dublin, supported by Acquired Brain Injury Ireland.

Neuropsychological outcomes of Irish children treated for brain injury and epilepsy

The UCD Centre for Disability Studies and the UCD School of Psychology Neuropsychology Laboratory led by Dr Michelle Downes, in collaboration with Temple Street Children’s University Hospital (TSCUH), are investigating the burden of neuropsychological dysfunction in children treated for brain injury.  This study aims to identify gaps in treatment pathways and evaluate the effectiveness of clinical care in Ireland for this population.  This project is funded by the Temple Street Foundation.  Recruitment advertisements for a doctoral candidate to conduct this research will be disseminated in early 2019.

Dr Alex Gunko, St Vincent’s Hospital Dublin, is completing an MD in conjunction with the UCD Centre for Disability Studies and the UCD School of Medicine.  Alex’s research examines presentations of patients experiencing seizures at emergency departments, and more specifically whether some presentations are deemed ‘avoidable’. This research is part of a wider pan-European exploration of the presentation of patients experiencing seizures in European countries entitled EuroNASH, led by the University of Liverpool and supported by the UCD Centre for Disability Studies.

Clare O’Dea investigated the relationship between parents’ coping styles, their social comparison orientation (SCO) and their parental response to their child’s epilepsy.  The study found that the interaction between parents’ SCO and their coping styles, i.e. the ‘comparison/coping model’, significantly predicted two parental responses, family life/leisure and child autonomy. In particular, those parents with higher SCO and higher dysfunctional coping engaged less in family activities. Those with higher SCO also enforced greater restrictions on their child’s independence. These findings may be helpful in informing clinical practice regarding interventions to promote parents’ positive adjustment to their child’s epilepsy, facilitating greater adaptation for the child and their family.

Enhancing the attitudes and disability literacy of medical students taking a university module on disability.

Julie Lynch conducted a pre-post survey of medical students at UCD taking a mandatory module on disability; the only mandatory disability module in any Irish medical degree. The study aimed to investigate whether students’ attitudes, empathy, anxiety and competency changed before, during and after students’ participation in the module.  Supported by the UCD School of Medicine this research was published in early 2019 in Disability and Health Journal.  Mark Cecchetti continued this research by conducting a longitudinal survey of the same students one year later. This study sought to determine whether the positive gains observed before and after the disability module are still evident one year later. Findings from this longitudinal survey were presented at the HSE’s conference Translating Health and Social Care Professions Research into Policy and Practice on November 14th 2018 in Dublin Castle.  This research is now submitted to Academic Medicine for consideration.  

An investigation into the effects of level of education and years of experience on the perceived self-efficacy of early years educators in Ireland to implement inclusive practices

Lara Sinnott surveyed ‘early years educators’ (providing education supports to the 0-6 year age group) to explore their perception of how well they included children with diverse needs, such as special educational needs (SEN) and disabilities, in mainstream classrooms. Findings from over 200 early years educators indicated that teachers with longer length of service and with higher qualifications were more confident in their inclusive practice. The findings have implications for initial teaching training and ongoing professional development of early years educators.