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Learning disabilities: why nurse support is vital when moving from child to adult care

Study finds service users need key relationships to help navigate next steps

Young adults with complex learning disabilities need nurses to help them navigate next steps, says professor of nursing Michael Brown

Despite a range of policy guidelines highlighting the need for early planning and coordination before, during and after the transition, the process of moving from child to adult health services remains challenging for some young adults with complex learning disabilities and their families. And little is known about the nursing contributions to help facilitate these transitions.

This is why

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Young adults with complex learning disabilities need nurses to help them navigate next steps, says professor of nursing Michael Brown

The process of moving from child to adult health services can be challenging for some young adults with complex learning disabilities and their families
Picture: iStock

Despite a range of policy guidelines highlighting the need for early planning and coordination before, during and after the transition, the process of moving from child to adult health services remains challenging for some young adults with complex learning disabilities and their families. And little is known about the nursing contributions to help facilitate these transitions.

This is why Queen’s University Belfast undertook a three-year Scotland-wide research study – funded by the Burdett Trust for Nursing – to find out more about service users’ experiences of transition. We spoke to the families of young adults with learning disabilities and received input from 46 nurses and other health practitioners.

Families revealed a sense of loss, as well as physical and emotional struggles

The young adults with learning disabilities had a range of diagnoses, such as epilepsy, visual impairment, musculoskeletal conditions, kidney and metabolic issues, gastrointestinal and respiratory problems, mental health and speech and language difficulties.

For most, the transition process to adult services began after the age of 14 and was completed by the age of 19, although for one individual it took place between the ages of 24-26.

‘Some families described a sense of dread at having to start a new ‘‘fight’’ in adult services to ensure ongoing care and support’

Families who participated in our research revealed a sense of loss, as well as physical and emotional struggles, before, during and after the transition to adult services. One parent said: ‘All of a sudden it’s like someone taking hold of a rug and just pulling it out beneath you.’

Some families described a sense of dread at having to start a new ‘fight’ in adult services to ensure ongoing care and support.

Others chronicled care becoming fragmented in adult services, with concerns about the effect on their health and that of their family member, and having to take on the responsibility for coordinating the process.

Seven ways to improve child to adult health transition services

The Queen’s University Belfast study, Transition from Child to Adult Health Services for People with Complex Learning Disabilities, developed seven evidence-based recommendations to improve the transition from child to adult health services and the role of nurses:

  1. Involve young adults with learning disabilities and their families throughout all stages of the transition process
  2. Enhance strategic planning and leadership to ensure effective health transitions
  3. Develop and implement transition pathways from child to adult health services
  4. Child and adult health services need to collaborate early on in the transition process
  5. A lead health professional needs to be in place with responsibility for the transition process
  6. The nurse’s role needs to be developed to contribute to the transition of young adults with complex health needs
  7. All nurses need to undertake education about effective transitions for young people with learning disabilities and their families

Source: Queen’s University Belfast (2021)

Pressing need to enhance and develop nursing roles

Nurses often played an important role in providing education and support, and many of the families had developed close and trusting relationships with professionals over many years.

Families saw nurses as making important contributions to transition by enabling effective communication, coordination and collaboration throughout the process.

‘Nurses play key roles in developing new transition policies and care pathways, such as improving and enhancing the transition journey and experience’

The nurses we spoke to told us there was a pressing need to enhance and develop their roles further to respond to the increasing complexity of health needs of young adults with learning disabilities.

Some nursing groups – such as child health and school nurses – often play important roles in supporting young adults and their families over a sustained period of time. They also provide education and information about the transition process and all it involves.

There were some examples of new transition nursing roles having been established and aimed at coordinating the process. Nurses play key roles in developing new transition policies and care pathways, such as improving and enhancing the transition journey and experience.

We already know that the number of young adults with learning disabilities and complex health needs is increasing. There are about 3,000 people with profound and multiple learning disabilities in Scotland, while in England there are estimated to be 16,000.

Prioritise transition training for nurses and nursing students to help young service users

All health services will see more young adults transition from child to adult health services in the coming years. It’s clear that nurses in acute care everywhere need to develop their roles to meet these future needs and to help support transitions for young adults with learning disabilities and their families.

Training must be a priority for nurses and nursing students to ensure the process is smooth and effective.

All nurses, wherever they practice, can contribute to ensuring that the transition from child to adult health services for young adults with learning disabilities and their families is planned and coordinated effectively.


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Acknowledgements

Co-investigators included NHS Lothian chief nurse research and development Juliet MacArthur; Edinburgh Napier University research assistant Anna Higgins; University of Glasgow senior lecturer of intellectual disabilities Maria Truesdale; and Abertay University professor in mental health Zoë Chouliara


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