The Intellectual Disabilities (ID) Health Transitions Project focuses on improving person-centred and family-centred care for people with complex intellectual and developmental disabilities and their carers at the point of transition from child health to adult general hospital services.
Transition can be defined as “a purposeful, planned process that addressed the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and health conditions as they move from child-centred to adult-centred health care systems” (Department of Health, 2006).
For the purpose of this project, people with complex learning disabilities are defined as having cognitive impairment and multiple health needs, alongside coexisting difficulties including physical disabilities, sensory impairments, mental health needs, developmental disorders, challenging behaviour and/or communication difficulties. They require long-term, high levels of support in many aspects of daily living.
Person-centred practice focuses on the needs of the individual rather than the needs of the service by engaging the individual in the process of personalisation, enabling them to express their preferences and needs and responding to those while ensuring the individuals are kept safe from physical, emotional or financial harm.
Family-centred practice is defined as an approach to the planning, delivery and evaluation of services that are governed by mutually beneficial partnerships between the individual, their family, carers and practitioners.
The Edinburgh Napier University Research team:
Prof Michael Brown – Principal Investigator email@example.com
Dr Zoe Chouliara – Co-Investigator Z.Chouliara@napier.ac.uk
Dr Juliet MacArthur - NHS Lothian Juliet.MacArthur@nhslothian.scot.nhs.uk
Anna Higgins – Research Assistant A.Higgins@napier.ac.uk
The Advisory Group Board Members:
Prof Barry Carpenter - University of Worcester firstname.lastname@example.org
Elaine Kwiatek - NHS Education for Scotland email@example.com
Maura Lynch – SCLD firstname.lastname@example.org
Jenny Miller – PAMIS email@example.com
Ann Norman Royal College of Nursing Ann.Norman@rcn.org.uk
Dr Laurence Taggart - Ulster University firstname.lastname@example.org
Alison White Social Work, Midlothian Council Alison.White@midlothian.gov.uk
Margaret Johnstone – carer Margaret.Johnston@Blueyonder.co.uk
Dr Barry Coughlan - University of Limerick Barry.Coughlan@ul.ie