Stuart Wark1, Rafat Hussain1, Arne Muller2, Trevor Parmenter2
1University of New England, Australia, 2University of Sydney, Sydney, NSW, Australia
Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, limited knowledge is available regarding the barriers to accessing necessary end-of- life care support, particularly in rural locations in Australia.
Focus group interviews were undertaken with disability support workers from four rural locations in NSW and Queensland. A semi-structured interview guide was used, with a focus on gaining an understanding of the barriers and impediments to providing appropriate and timely end-of-life care for individuals with intellectual disability. All focus group data were independently transcribed, with thematic analysis then performed.
The thematic analysis identified eleven key thematic areas under three over-arching levels; Government, including community infrastructure failings and inaccessible generic health services access, Organisation, which included internal policy & practice restrictions and poor staff training, and Individual, such as religious beliefs, personal relationships and end-of-life expectations.
It is already known that access to services is often poor for rural residents. However, these findings indicated that rural people with intellectual disability are further restricted in their ability to access generic and specialist services during their end-of-life. Exemplars including the lack of counselling support, and access to appropriate residential options. Improved access to end-of- life services is urgently required in rural areas, with a need to consider implementing innovative care models. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.
Stuart is the Year 2 Clinical Academic Coordinator in the School of Rural Medicine at University of New England. He has extensive prior experience in community and public health sectors in both rural and metropolitan settings. He currently teaches across the Joint Medical Program and supervises PhD students in the fields of intellectual disability, ageing and/or public health.