Background: 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, little is known regarding how end-of-life affects the individual’s personal relationships with family, friends and staff. Methods: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability. Results: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of ‘Active and Ongoing’, ‘Active but Limited’ and ‘After Death’. Relationships with Friends had two sub-themes of ‘Positive Experiences’ and ‘Negative Experiences’, and Staff Roles had two sub-themes of ‘Loss of Contact’ and ‘Default Decision Making’. Discussion: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual’s end-of-life. A lack of counselling support was noted as potentially impairing the individual’s friends’ ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.

Aim: There is an emerging need for end-of-life care for people with intellectual disabilities; however, there is limited research that concurrently examines support issues within both rural and metropolitan localities. The aim of the current study was to gain insights from paid carers in both city and country areas of Australia in order to identify facilitators and barriers to the provision of appropriate end-of-life care support. Method: Seven focus groups with a total of 35 participants were conducted in metropolitan (Sydney and Brisbane) and rural (Armidale, Inverell, Lismore and Warwick) locations using a semi-structured interview guide. All focus group data were independently transcribed, and thematic analysis was undertaken. Results: There were seven main themes recognised in the data. These were Training and Staff Support; Health Services; Relationships; Policy and Practice Barriers; Pain and Medication Management; Quality of Life; and Infrastructure. Similarities and differences based upon geographic location were identified. Conclusion: The differing end-of-life needs of rural and metropolitan residents are nominated. Specific recommendations are made for Australian-based services regarding changes to daily practice that better support people during their end-of-life.

Background: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. Methods: Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. Results: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of 'isolation,' 'support from doctors,' 'general health support access' and 'internal staffing issues.' Conclusions: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Background: Access to support services in rural areas is known to be problematic both in Australia, and in other countries around the world, but the majority of research on the population of people ageing with learning disability has so far focussed on metropolitan residents. The authors report about select aspects of the lived experience of older adults with learning disability resident in rural locations in two states of Australia. Materials and Methods: This pilot project examined data drawn from 34 semi-structured interviews conducted with 17 older adults and 17 carers. Responses were analysed for thematic areas. Results: It was observed that the capacity of certain rural areas to support meaningful choice-making was limited due to constraints of access to key services, including community-based aged care, generic and specialist health services, and both supported disability and aged-care residential options. Responses indicated that those living in both small- and medium-sized congregate care settings (such as group homes and residential aged-care facilities) had more limited choices and only partial (if any) control over their living situation. Conclusion: An understanding of the needs of older adults with learning disability resident in rural areas is important to ensure that both aged-care and disability support structures are built on individuals' needs.