A carer’s journey: what are the needs and experiences of South Asian informal parent-carers for individuals over aged 18 with a learning disability?

Introduction
The prevalence of learning disabilities amongst the South Asian community is high. South Asian people with a learning disability are considered to be one of the most neglected groups in the UK and can experience double discrimination due to their learning disability and ethnicity (NHS Race and Health Observatory; NHS-RHO, 2023b; pg. 11). Within the South Asian community, there is stigma around learning disabilities and many South Asian informal carers are unaware of what a learning disability is. Overtime, South Asian informal carers learn to adjust to their child having a learning disability whilst supporting their physical, emotional and medical needs with reduced support. Little is known about their experiences and their needs across the lifespan through significant phases, including childhood, the transition phase (aged 16-18) and adulthood/the present day. This research seeks to understand and build on this.
Method
Semi-structured interviews were completed with six female South Asian informal-carers who were a parent to their adult-aged son/daughter who had a learning disability. Data was analysed using Interpretative Phenomenological Analysis (IPA).
Results
The findings highlighted the individual and shared experiences of all six participants. Shared experiences included a lack of support, feeling disempowered, hidden experiences and feeling abandoned as a South Asian informal carer.
Discussion
The findings are discussed in relation to the current literature. The role of an informal carer was found to be physically and emotionally demanding and is often completed with little support or preparedness. This research has highlighted a need for more support to guide South Asian informal-carers and people with learning disabilities through the lifespan to ensure they are supported. The strengths and limitations of the research have been considered, alongside implications and suggestions for future research.