Intellectual Disabilities Health Transitions Project

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.

Background 

There is a growing focus across services in ensuring that people with intellectual and developmental disabilities receive person-centred care and treatment. 

The point of transition from child health to adult general hospital services is an important milestone for young people with complex health needs, where person-centred care is of particular significance. However, there is limited published evidence regarding good practice and how best to enable and improve effective facilitation of transition.  

Aims of the Project 

By obtaining the perspectives of nurses, families and carers, this qualitative project aims to explore experiences of transition, best nursing practice as well as challenges and solutions to providing person-centred and family-centred care for people with complex intellectual and developmental disabilities at the point of transition from child health to adult general hospital services. The three main objectives of the project are to: 

1) Identify practice examples and solutions to enable person-centred and family-centred care at the point of transition 

2) Develop best practice strategies in providing person-centred care during transitions, embedded in the perspectives of stakeholders

3) Develop and pilot an education resource for nurses in practice on how best to manage transition between child health and adult general hospital services for people with intellectual and developmental disabilities and their families and carers

This project is funded by the Burdett Trust for Nursing (http://www.btfn.org.uk/) and will be completed by December 2018. 


International practice examples 


As part of the ID Transitions Project, we are seeking to collect practice examples of facilitating transition from child health to adult general hospital services for people with complex intellectual and developmental disabilities in the United Kingdom and internationally. 

How can you help? 

If you have experience of a project, programme or initiative related to facilitating the transition process from child health to adult general hospital services for people with complex intellectual and developmental disabilities, we would be very interested to learn more. 

We are looking for transition practice examples, which meet ALL of the following criteria: 

• The project or initiative is aimed at facilitating transition from child health to adult general hospital services and can be applied to people with complex intellectual and developmental disabilities
• The project or initiative is still active or it was stopped or completed in the past 2 years
• There is a designated named point of contact for the project or initiative
• The organisation responsible for the project or initiative gives consent for the details to be shared and published on the website and in the final project report

If your project meets the above criteria and you are interested in sharing your practice example, please complete the following online survey.

What will happen to the information? 

The project team will review all practice examples against the eligibility criteria, edit the material to ensure consistency and return it to the contact who submitted it for consideration and review. The practice examples may be presented on the project website and a selection will be published in the final project report. All organisations associated with the project or programme will be fully acknowledged on the website and in the final report. 

Contact us

If you have any questions or would like more information on the project, you can contact the research assistant Anna Higgins on +44 131 455 5654 or email us on idhealthtransitions@napier.ac.uk

Definitions

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 m.brown@napier.ac.uk 
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 carpenterbarry@mac.com
Elaine Kwiatek - NHS Education for Scotland elaine.kwiatek@nes.scot.nhs.uk 
Maura Lynch – SCLD maura.l@scld.co.uk 
Jenny Miller – PAMIS j.y.miller@dundee.ac.uk 
Ann Norman Royal College of Nursing Ann.Norman@rcn.org.uk 
Dr Laurence Taggart - Ulster University l.taggart@ulster.ac.uk 
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