Addressing the Health Inequalities of People with Intellectual Disabilities (ID)
Submitting InstitutionUniversity of Ulster
Unit of AssessmentAllied Health Professions, Dentistry, Nursing and Pharmacy
Summary Impact TypeHealth
Research Subject Area(s)
Medical and Health Sciences: Public Health and Health Services
Summary of the impact
Research undertaken at the Centre for Intellectual and Developmental
Disabilities(CIDD), has significantly impacted upon:
- The identification of health inequalities through improved health
- The development of a network of Health Facilitators linked to GP
Practices to promote health screening/annual checks.
- The development of accessible information to assist people with ID in
making positive lifestyle choices and access healthcare services.
- The development of health promotion interventions targeting secondary
health conditions for people with ID.
- The translation of this research into pre/post multi-disciplinary
- The preparation of regional, national and international policy
The CIDD is led by Prof McConkey and a team of tenured staff including
Prof Barr, Dr Slevin, Dr Taggart and Mrs Sowney. A focus of their research
is addressing health inequalities (1). Over the last five years the CIDD
has established an international profile with research grants totalling
over £3million supplemented by over 20 PhD/MSc projects. Innovative
research projects addressing the health disparities of this population
have been completed and over 100 papers in international peer-reviewed
journals have been published. Examples of these are presented below: (The
numbers in parentheses relate to the references to the research):
- Two studies analysed the health screens conducted on over 800 persons
with ID and identified the most common conditions, the referral patterns
and follow-up actions taken (1).
- Over 20 women with ID were individually interviewed about their
understanding of breast cancer and experiences of receiving a mammogram
(2). Key support and breast screening staff were also interviewed. This
led to three publications.
- Another study involving nearly 200 respondents with ID and diabetes
explored their health and identified whether the diabetes quality of
care indicators were met (3). This highlighted the poor management of
diabetes for many people with ID.
- Two studies identified the attitudes of over 500 mainstream health
personnel to patients with ID. In addition the enablers/barriers to
accessing primary healthcare, A&E and acute hospitals were
identified through 1-1 interviews and focus groups involving over 50
service users, family carers and healthcare staff (4 and 5).
- The knowledge and perceptions of risk and protective factors were
explored with over 30 H&SC staff working with women with ID who have
psychiatric disorders (6).
A strategic objective of the CIDD is the promotion of practice-based
research and education, alongside knowledge exchange partnerships between
Higher Education, Health & Social Care (H&SC) services and the
voluntary sector with a particular focus on mainstream health services.
Hence our programme of research has included healthcare practitioners,
acute hospital staff and specialist services (breast screening services,
palliative care). Two staff have held joint appointments with H&SC
Trusts, and seven doctoral theses and one Master's thesis by research have
been completed by H&SC personnel.
Patient and public involvement has been central to the work of the CIDD.
Working alongside key stakeholders from statutory and voluntary agencies
(and with representation from service users and their families), the
research aims and methods of projects were developed. This has assisted
greatly with the dissemination of the research findings.
CIDD undertook literature reviews commissioned by the Bamford Review of
Mental Health and Learning Disability Services in NI (2006) and the
Equality Commission (NI) (2008). The latter led to a formal investigation
into how people with ID accessed health information and health services
that confirmed the inequalities and discrimination encountered by this
population and their families (Source 1). The Bamford Review's
recommendations for health service improvements (see source 1; chapter 7)
were informed by our research which also underpinned the regional guidance
issued by DHSSPS (2010) for all health and social care staff in Northern
Ireland to support equity of access to, and use of general healthcare for
people with intellectual disabilities (GAIN guidance) (Source 2).
References to the research
1. Barr O, Gilgunn J, Kane T and Moore G. (1999) Health screening for
people with learning disabilities by a community learning disability
nursing service in Northern Ireland. Journal of Advanced Nursing,
29 (6) pp.1482-1491. (Impact Factor: 1.5) (citation H index from Scopus is
45 and Google Scholar H index is 90)
2. Truesdale-Kennedy, M. N., Taggart, L. & McIlfatrick, S. J. (2011):
Breast cancer knowledge among women with intellectual disabilities and
their experiences of breast mammography. Journal of Advanced Nursing,
67 (6), 1294 - 1304. (impact Factor 1.5) (citation H index from Scopus is
5 and Google Scholar H index is 9)
3. Taggart, L., Truesdale-Kennedy, M. & Coates, V. (2012): Management
and quality indicators of diabetes mellitus in people with intellectual
disabilities. Journal of Intellectual Disability Research.
(online: 29 OCT 2012, DOI: 10.1111/j.1365-2788.2012.01633.x) (Impact
factor: 1.8) (Google Scholar H index is 1)
4. McConkey, R. & Truesdale, M. (2000) Reactions of nurses and
therapists in mainstream health services to contact with people who have
learning disabilities. Journal of Advanced Nursing. 32, 158-163.
(Impact Factor: 1.5) (citation H index from Scopus is 33 and Google
Scholar H index is 44)
5. Sowney M and Barr O (2006) Caring for adults with intellectual
disabilities: perceived challenges for nurses in accident and emergency
units. Journal of Advanced Nursing, 55 (1) pp.36-45. (Impact Factor:
1.477) (citation H index from Scopus is 15 and Google Scholar H index is
6. Taggart, L., McMillan, R. & Lawson, A. (2010): Staffs' knowledge
and perceptions of working with women with intellectual disabilities and
psychiatric disorders. Journal of Intellectual Disabilities Research,
54 (1), 90-100. (Impact factor: 1.8) (citation 3 index from Scopus is 4
and Google Scholar H index is 6)
2008-2013 £133,552 Chair of Learning Disability: Joint Appointment with
the Eastern Health & Social Services Board.
2008: £20,000 Breast Cancer Campaign, London: `The experiences of women
with intellectual disabilities accessing breast screening services'. (PI:
Dr L Taggart)
2010: £96,067 Research & Development Office, Belfast. Promoting the
health of young people with intellectual disabilities through a blended
e-learning resource designed for teachers, classroom support assistants
and parents. (PI: Dr L Taggart)
2012: £291,678: Diabetes UK: Diabetes education for adults with
intelelctual disabilities with Type 2 diabetes and their carers. (PI: Dr L
Details of the impact
The programme of research undertaken within CIDD has been instrumental in
addressing the health inequalities and the health promotion needs of
people with ID. The impact is evident in the following six areas:
- The identification of health inequalities through health
Members of CIDD through robust research have clearly identified the
health needs of this population (1-6). As a result, a `health passport'
was developed which provides a structured nursing assessment and assists
in the communication of information between the person with ID and
mainstream healthcare professionals (Source 3). In addition training
courses for over 150 acute hospital staff in Northern Ireland were
devised by University personnel in collaboration with a theatre company
of people with ID. The training supported the implementation of the GAIN
Guidelines (Source 2).
The learning gained from this work led to an exploration of other
chronic health conditions and a focus on diabetes emerged. A new project
has brought together an inter-disciplinary team of international experts
from across the four UK countries in order to adapt and test a diabetes
education programme for people with ID. This is funded by a grant from
Diabetes UK £291,678 in 2012.
- The development of a network of Health Facilitators in GP Practices
to promote health screening/annual checks:
The research undertaken by members of the CIDD was cited in Equal Lives
(DHSSPSNI, 2005) (Source 1) that led to the pioneering appointment of
nine Health Facilitators for people with ID across the five Health and
Social Care Trusts in Northern Ireland. The health facilitators
encourage attendance at annual health screens undertaken by GPs: with
uptakes in certain areas (76%) exceeding those reported for other
regions of the UK. They also support the implementation of health action
plans within ID services and they have adapted and instigated health
promotion activities around healthy hearts and exercise (Source 4).
- The development of accessible information to assist people with ID
to make positive lifestyle choices:
A colourful, user friendly information booklet on breast
cancer/screening was developed that allows women to make more informed
decisions about monitoring their own health and accessing breast
screening services. It gives women with ID, their carers and
professional staff a greater understanding of what breast cancer is, the
signs/symptoms, what to do and the process involved in receiving a
mammogram. This innovative publication was developed in collaboration
with women with ID within an advocacy network and has been circulated
widely within the UK and internationally (www.easyhealth.org.uk)
(Source 3). A similar booklet on promoting good mental health has been
- The translation of research into pre/post multi-disciplinary
Findings from research undertaken by CIDD researchers have guided the
development of best practice standards for `Care of People with Learning
Disabilities in General Hospitals' (DHSSPSNI, 2010). Three major
hospitals in Northern Ireland have implemented these standards focusing
on the care of people with ID through service improvement plans. These
plans focus on increased use of accessible information to explain
admission, consent and care and treatment processes: as well as
facilitating a comprehensive assessment of their needs and improving
communication among hospital staff in meeting these needs. More
recently, a new innovative e-learning module has been designed for
teachers, classroom support assistants, H&SC professionals and
parents to promote the physical and mental health of children and
adolescents with developmental and ID. Also a training DVD a resource
manual has been produced to increase the partnership between palliative
care and ID services focusing on end of life care for people with ID
(McLaughlin, PhD thesis, 2012)..
- The influence of regional, national and international policy
The research undertaken by CIDD researchers has resulted in specific
recommendations in key Northern Ireland H&SC policy documents aimed at
improving access to healthcare for people with ID (DHSSPSNI, 2005, Ch.7: www.dhsspsgov.uk/equallivesreportchpt7.pdf)
and across the UK (Michael Report, 2008). These research findings were
also cited in the World Report on Disability produced by the WHO in
2011(p.8) (Source 1).
Sources to corroborate the impact
— DHSSPS (2005) Equal Lives: Review of Policy and Services for People
with a Learning Disability in Northern Ireland, Belfast DHSSPS. Chapter 7:
Health and Well being. www.dhsspsni.gov.uk/equallivesreportchpt7.pdf.
— Equality Commission Northern Ireland (2008) A formal investigation
under the disability discrimination legislation to evaluate the
accessibility of health information in Northern Ireland for people with a
learning disability. Belfast: Equality Commission. Available at: http://www.equalityni.org/archive/pdf/FormalInvestDisability(Full).pdf
— World Health Organisation and the World Bank (2011) World Report on
Disability. Geneva, WHO Press. www.who.int/disabilities/world_report/2011/en/index.html
— Guidelines and Audit Improvement Network (DHSSPS 2010)
— Guidelines on caring for people with a learning disability in General
Hospital. Belfast, DHSSPS. www.gain-ni.org/images/Uploads/Guidelines/Gain%20learning.pdf.
— Letter of Support from K Fodey, Nursing Officer, DHSSPS.
— Health Passport (About me)
— Guidance on completing Health Passport: E-mail from Mr Maurice Devine
about Health Passport
— Letter from Compass Advocacy network to support the importance of
health promotion project.
— Centre for Intellectual and Developmental Disabilities (CIDD): http://www.science.ulster.ac.uk/inhr/cidd/index.php
— A series of e-mails from front-line staff providing positive feedback
on the breast screening booklets.
— Letter from Molly Kane and Aidan Murray about the Health Facilitators.