Children with Disabilities and Chronic Health Problems

There are programmes of work and expertise relevant to children with disabilities and chronic health problems that extend across Medicine, Nursing, Education, Pharmacy, Psychology, Sociology, Social Policy and Social Work at QUB. Many of these projects also have strong community-based links including the NHS and schools. However each of these disciplines have been investigating aspects of child health (clinical and epidemiological), care and management, quality of life, psychological adjustment, social behaviour and theory and educational issues but in relative isolation from one another.

Medicine, Nursing and Pharmacy have track records in research involving babies born requiring intensive care and specialist management; monitoring and surveillance of childhood populations who survive with cerebral palsy; and children who manage chronic health conditions like asthma; chronic respiratory disease secondary to prematurity; impaired growth, poor nutrition and obesity. There are also a number of projects investigating the effects of inequalities and deprivation on health. This work is also linked to Psychology with world-leading research into fetal development and its clinical application including childhood disability and psychological adjustment in disability and acquired brain injury and autism. Psychological problems in childhood disability and chronic illness are often overlooked but are associated with significant social impairment for the child and family. Developing and evaluating early psychological interventions could be one of the research areas of the group. Sociology, Social Policy and Social Work (SSPSW) have been investigating behavioural aspects in relation to children with autism and the perspectives of children with disability and their families in relation to social support services, a very under researched topic. Finally, with increasing numbers of children surviving with complex problems one of the central issues is how these children’s conditions are managed at school and in the community.  School placement has implications for the child’s immediate well-being but also determines their future role and adjustment in society (employment, wealth, quality of life) and remains a contentious issue. The School of Education and ICCR have considerable experience researching issues related to the inclusion of children with special educational needs and the legal framework around special educational needs and school placement. Bringing the threads of education and health together is potentially one of the unique aspects of this SIG.

Update

September 2009: A group of academics led by Dr Laura Lundy from Education, Pharmacy, Nursing and Medicine are currently developing a collaborative research proposal to explore the experiences of children with chronic illness in mainstream schools using a children’s rights perspective.  More news about the finalisation and submission of the project for funding will follow shortly.

This year the School of Nursing and Midwifery were successful in attracting a number of DEL awards for doctoral study, one of which will be taken up by a graduate in Psychology who will investigate the mental health of children and young people with cerebral palsy at European, national and local level.  This project will be supervised collaboratively by Drs Jackie Parkes (Nursing) and Dr Chris McCusker (Psychology).  In addition the Improving Children’s Lives Initiative advertised six PhD studentships which included a collaborative proposal between Nursing and Medicine on the participation and quality of life of children with chronic conditions.

The Northern Ireland Cerebral Palsy Register research team (Nursing) will be hosting a Training and Study Day to disseminate research and good clinical practice with regard to the care and management of children and young people with cerebral palsy.  This will be held on 31st March 2010 (venue to be confirmed) and also has the support of the British Association for Community and Child Health (BACCH).

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People

Dr Fiona Alderdice (Nursing)
Dr Karola Dillenburger (Social Work)
Professor Henry Halliday (Medicine)
Professor Peter Hepper (Psychology)
Dr John Jenkins (Medicine)
Dr Berni Kelly (Social Work)
Dr Claire Kerr (Nursing)
Dr Mark Linden (Nursing)
Prof Laura Lundy (Education)
Nichola McCullough (Nursing)
Dr Chris McCusker (Psychology)
Professor James McElnay (Pharmacy)
Patricia McNeilly (Nursing)
Dr Jeff Millership (Pharmacy)
Dr Jackie Parkes (Nursing)
Jayne Price (Nursing)
Dr Bettina Schock (Medicine)
Professor Mike Shields (Medicine)
Seaneen Sloan (Child Care)
Dr Moira Stewart (Medicine)
Dr Colin Willoughby (Medicine)

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