Transition from child to adult health services for people with complex learning disabilities: Learning from nurses and families

A three-year Scotland-wide research study, funded by the Burdett Trust for Nursing, involving collaborators from across the UK was undertaken to identify the views and experiences of families of young adults with complex learning disabilities and Registered Nurses of the transition from child to adult health services.  The objectives of the study were to:

• Investigate and more fully understand the experience of transition between child and adult health services, the challenges involved and the barriers to the provision of person-centred care by obtaining the perspectives of nurses and families as the key stakeholders
• Develop best practice strategies in providing person-centred care during transition, embedded in the perspectives of stakeholders
• Develop and pilot an on-line learning resource for nurses and other health professionals in practice regarding how effectively manage the transition from child and adult health services for people with learning disabilities and their families.

The experiences of the families who participated revealed a story of loss, physical and emotional struggle before, during and after the transition to adult services.  The experiences of Registered Nurses highlighted the wide range of contributions made throughout the transitions process and the need to enhance and develop their role further to respond to the increasing complexity of health needs. The study also involved developing and piloting of an on-line education resource for Registered Nurses and other health professionals, entitled Transitions from child to adult healthcare for young adults with learning disabilities. The resource aimed to enhance the knowledge and awareness of effective transition to enable Registered Nurses and other health professionals to contribute to and facilitate the process.

Based on the study findings seven evidence-based recommendations were made to (i) enhance strategic planning and leadership, (ii) involve young adults with learning disabilities and their families throughout the process, (iii) develop and implement transition pathways from child to adult health services, (iv) early collaboration in the transition process involving child and adult health services, (v) a lead health professionals with responsibility for the transition process, (vi) developing the role of Registered Nurses to contribute to the transition of young adults with complex health needs and (vii) provide education for Registered Nurses and other health professionals regarding effective transitions for young people with learning disabilities and their families.

For further information about the study please contact Professor Michael Brown m.j.brown@qub.ac.uk. 

Download the full report here.  Download the short report here.