Suicide amongst people with intellectual disability: An Australian online study of disability support staff experiences and perceptions
Background Individuals with intellectual disability (ID) have a higher likelihood of exposure to identified risk factors for suicide when compared with the general community and have been recognised as being both capable of forming intent for suicide and acting on this intent. However, in spite of research outlining these concerns from the 1970s, there remains a dearth of studies that examine suicide amongst the population of people with ID. Method An online cross-sectional survey was purposively developed, with questions aimed at identifying both the experiences and current practices of support staff who assist people with ID in relation to suicide, suicidal behaviour and suicide assessment. It was undertaken across both rural and metropolitan areas in Australia. The survey was open for a period of 12 months. A total of 139 respondents (109 female/30 male), with a mean age of 41 and an average 12 years of experience in supporting people with ID, completed the tool. Results A total of nine suicides by people with ID were reported. Seventy-seven per cent of the respondents reported that they had individuals with ID display suicidal behaviours, and 76% noted that a person had specifically talked about wishing to end their life. Only four participants (3%) noted that they did not support individuals with a dual diagnosis of ID and mental health concern. Sixty per cent of participants reported that no one in their organisation had ever completed a suicide risk assessment, and only 28% reported that they would do a suicide risk assessment if an individual that they supported was diagnosed with a mental health issue. Conclusions The current findings indicate that support staff recognise the capacity of people with ID to conceptualise suicide, note the existence of suicidal discussions and behaviours and report on actual suicides. This represents one of the few Australian studies that has specifically considered suicide amongst this cohort of people and reinforces the fact that suicide is not unknown in this population. The data indicate a possible divide between the reports of people with ID actively talking about and acting on suicidal thoughts and the lack of any proactive use of any tools to assess for this risk.
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.
Challenges in providing end-of-life care for people with intellectual disability: Health services access
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.