Supporting end-of-life care across geographic diversity: What works and what needs to change?
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.
Translating research into practice: Academia and disability services working together
A productive and collaborative partnership between academia and disability organisations can be developed. However, it requires a substantial amount of work by both sides. It cannot survive on goodwill of one or two people alone; it will only work if significant numbers of people from both sides are truly committed and perceive that there are genuine benefits out of the relationship. If the relationship is one-sided in either direction, it simply will not survive beyond the short-term. One key learning for the disability organisation was that not all University departments are created equal. Potential partnerships were explored with three different faculties before the current positive relationship with the School of Rural Medicine was established. It was also found that getting several disability industry partners to collaborate was feasible, if complicated. This mechanism overcome the problem of limited funding to different individual organisations. The approach resulted in a two-state multiple organisation research proposal being submitted to the Australian Research Council with potential benefits for all disability providers nation-wide.
Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia
Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability. Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses. Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation. Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.
End of life care for people with intellectual disability
Aims: Life expectancy for a person with an intellectual disability has increased dramatically in recent years, and consequently the morbidity and mortality patterns are also shifting. These changing health demographics are resulting in an increasing need for the provision of and access to End of Life (EoL) care. The purpose of the current study was to explore and examine the needs of people with intellectual disability and their support network as they approach the end of their life. Method: A series of focus groups, composed of both paid and unpaid carers across rural and metropolitan areas of Australia, discussed the EoL needs of people with intellectual disability and their network of family, friends and supporters. Results: The paper will report the findings of the research, with a focus on how a dignified and supportive EoL for people with intellectual disability can be provided across both rural and metropolitan localities. Conclusion: EoL care for people with intellectual disabilities is an area receiving an increased research focus, however the differences between rural and metropolitan areas are still largely unexplored. There are key differences in issues such as service access that require remediation to better meet the needs of individuals.