Optimising general practice support for autistic adults: A realist review.

PI Title:  Kelly Birtwell

Lead member:  Manchester

"Background
This research aims to find out how, why, and when general practice best supports (or not) autistic adults throughout their lives, in order to suggest improvements.

Autism refers to differences in the brain that affect how people experience the world. Some autistic people have strong memory skills, very good attention to detail, can focus on certain tasks for a long time, are very creative, and feel intense empathy. Without appropriate support or adjustments, some autistic people may experience difficulties, to different degrees. For example, difficulties with planning, focusing attention, being in social situations, understanding and describing emotions, and making sense of feelings in the body. Some autistic people may be non-speaking, and senses may be more or less heightened than non-autistic people, e.g. sounds may seem louder, lights might be painfully bright.

Mental and physical health conditions are more common in autistic people, including anxiety, depression, digestive problems, cancer, epilepsy, and heart disease. Unmet health needs and stress from stigma may contribute to this. General practice is often the first point of contact for patients, yet research has found that autistic people face barriers to healthcare, report lower satisfaction with healthcare, and have more unmet health needs than non-autistic people. This can be due to misunderstandings about the needs of autistic people, different communication styles, the clinic environment, challenges making and getting to appointments, and slow sharing of important new research.

The current project builds on existing research and is in line with the UK government’s strategy to reduce the health and care inequalities that autistic people face.

What we plan to do
We will: 1) search for and bring together what has already been written about general practice support for autistic adults; 2) develop a theory to explain how general practice can best support autistic adults throughout their lives; and 3) find existing resources that could be used or adapted for general practice to support the different needs of autistic adults throughout their lives.
Autistic individuals helped to design this research and will be involved throughout, along with family members/carers, and general practice staff. Together, we will discuss the type of information to include (e.g., from medical journals, charity websites and blogs), what we find, and how to share our findings with others.

Outputs and impact
We will use the learning from the review and from the resources we find, to produce guidance for 1) general practice on potentially helpful changes to service, and 2) autistic people to help them gain the support they need. Findings will be shared with patients, community organisations, general practices, and researchers using a range of accessible formats. This will help to improve the health and wellbeing of autistic individuals."

The funding has provided additional support to an NIHR RfPB funded award: https://fundingawards.nihr.ac.uk/award/NIHR206157 

Amount awarded: £87,094