What is the Experience of Primary Eyecare for Children with an autistic spectrum disorder? A grounded theory investigation

Background
Autism spectrum disorder is a group of lifelong neuro-developmental disorders that
influence the way people interact, view and communicate with their world. It is
thought that people with autism spectrum disorders have a shorter life span because
they do not alert people to health problems that might be treatable. Healthcare in the
United Kingdom is intended to be accessible equally by all. Planning for services
requires the input of service users to ensure that they are accessible. There is
limited knowledge about the experience of eye-care from the service user’s
perspective.
Aim
The aim of this research is to investigate the experience of eye-care from the
perspective of children with autism spectrum disorders.
Methods
A grounded theory methodology was used. Eight primary carer and child dyads and
five eye-care professionals were interviewed. Data were analysed and the
categories that emerged were integrated to develop theory.
Findings
The overarching category that emerged from the children’s data was feeling in
control. There are facilitators and barriers to this which are dependent on the autism
spectrum disorder awareness of eye-care practitioners and the eye-care awareness
of primary carers.
Conclusion
The experience of primary eye-care for children with an autism spectrum disorder is
dependent on whether they feel in control of the situation. The theory generated
indicates that a child can be enabled to feel in control if their primary carer and eye
care professional work together to reduce the sensory burden, provide continuity,
and adapt the process in a person-centred way. This research shows that strategies
that enable the child to feel in control can reduce the challenges of the process of
primary eye-care. In order for this to be possible the primary carer and eye care
professional need effective communication pathways to plan for each individual’s
specific needs and to prepare the child for the experience.