Pattern of multimorbidity in middle-aged and older-aged people with mild intellectual disability in Australia.

BACKGROUND: Non-communicable diseases (NCDs), also known as chronic diseases, now constitute a major proportion of ill-health across most adult and older populations including in people with intellectual disability. The current paper is a comparative analysis of prevalence of NCDs across mid-aged and older-aged people with mild intellectual disability. METHOD: Comparative data comes from two cross-sectional surveys using similar methodology and timeframes. The analysis sample comprises mid-aged group (30-50 years, N = 291) and older-aged group (≥60 years, N = 391). RESULTS: People with mild intellectual disability start developing NCDs in early to mid-adulthood and increases with age. The mean number of NCDs in mid-aged group was 0.86 (SD, 0.84) compared to 3.82 in older group (SD, 2.67). CONCLUSION: There needs to be early identification and management of NCDs using relevant health promotion and preventative measures at optimal intervention points. The training of healthcare professionals needs improvement.

Perceived health and wellbeing among community-dwelling older Australians with intellectual disability: A comparison with age peers.

Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age ≥ 60]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.

Mitigating the impact of the 'silos' between the disability and aged-care sectors in Australia: Development of a Best Practice Framework.

BACKGROUND: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. METHODS: Mixed-methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in-depth interviews; and survey of health professionals. RESULTS: There is an urgent need to develop inter-sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well-being indicators; development and adoption of nationally consistent policies/standards across integrated aged- and disability-care sectors; improved strategies for workforce planning; and upskilling of existing staff including place-based collaboration. CONCLUSIONS: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person-centred support systems.

Societal Need for Interdisciplinary Ageing Research: An International Alliance of Research Universities "Ageing, Longevity and Health" Stream (IARU-ALH) Position Statement.

Ageing is a global concern with major social, health, and economic implications. While individual countries seek to develop responses to immediate, pressing needs, international attention and collaboration is required to most effectively address the multifaceted challenges and opportunities an ageing global population presents in the longer term. The Ageing, Longevity and Health stream of the International Alliance of Research Universities (IARU-ALH) was built on a solid foundation of first-class interdisciplinary research and on innovative outreach and communication centres. This interdisciplinary network conducts projects that span biology, medicine, social sciences, epidemiology, public health, policy, and demography, and actively engages with the public and other societal stakeholders. Here we posit that such international interdisciplinary networks are needed and uniquely placed to address major challenges related to health and ageing and ultimately will produce new understanding and knowledge to promote the awareness of healthy ageing and encourage societal change via novel, science-informed interventions. Global interdisciplinary research presents great potential and opportunities to accelerate our understanding of human ageing and to produce new, more effective solutions to a pressing, complex problem. However, more focused, strategic efforts and investments are required in order to deliver on these potentials and reap maximum benefits for individuals and societies. IARU-ALH members are determined to contribute, in collaboration with others, to delivering on this vision.

Multimorbidity in older people with intellectual disability.

BACKGROUND: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+. METHODS: A cross-sectional survey was used with community-dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi-prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. RESULTS: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). CONCLUSIONS: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.

Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability.

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 the 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.

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia.

Australia has one of the world's highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents' age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers' time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents' own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

An explanation of turnover intention among early-career nursing and allied health professionals working in rural and remote Australia - findings from a grounded theory study.

INTRODUCTION: Rural health workforce shortages are a global phenomenon. Countries like Australia, with industrialised economies, large land masses and broadly dispersed populations, face unique rural health challenges in providing adequate services and addressing workforce shortages. This article focuses on retention of early-career nursing and allied health professionals working in rural and remote Australia. Some of Australia's most severe and protracted rural workforce shortages, particularly among early-career health professionals, are in public sector community mental health (CMH), a multidisciplinary workforce staffed primarily by nurses and allied health professionals. This study investigated how employment and rural-living factors impacted the turnover intention of early-career, rural-based CMH professionals in their first few years of working. METHODS: A constructivist grounded theory methodological approach, primarily guided by the work of Charmaz, was selected for the study. By implication, the choice of a grounded theory approach meant that the research question would be answered through the development of a substantive theory. Twenty-six nursing and allied health professionals working in CMH in rural New South Wales (NSW) for the state health department services participated in in-depth, semi-structured interviews. The study sought to identify the particular life factors - workplace conditions, career-advancement opportunities and social and personal determinants - affecting workers' turnover intention. The substantive grounded theory was developed from an identified core category and basic social process. RESULTS: The turnover intention theory provides a whole-of-person explanation of turnover intention. It was developed based on an identified core category of professional and personal expectations being met and an identified basic social process of adjusting to change. The theory posits that an individual's decision to stay or leave their job is determined by the meeting of life aspirations, and this relates to the extent of the gap between individuals' professional and personal expectations and the reality of their current employment and rural-living experience. The extent of individuals' professional and personal expectations can be measured by their satisfaction levels. A major finding from the identification of the basic social process was that, in the adjustment stages (initial and continuing), turnover intention was most strongly affected by professional experiences, in particular those relating to the job role, workplace relationships and level of access to continuing professional development. In this stage, personal satisfaction mostly concerned those with limited social connections in the town (ie non-local - newcomers). Having reached the 'having adapted' stage, the major influence on turnover intention shifted to personal satisfaction, and this was strongly impacted by individuals' life stage. By drawing on the turnover intention theory and the basic social process, it is possible to make a risk assessment of individuals' turnover intention. Three levels of risk were identified: highly vulnerable, moderately vulnerable and not very vulnerable. CONCLUSIONS: The study offers a holistic explanation of life factors influencing the turnover intention of early-career health professionals working in public health services in rural NSW. These findings and the turnover intention risk matrix are thought to be suitable for use by Australian public health services and governments, as well as in other highly industrialised countries, to assist in the development of policies and strategies tailored for individual health professionals' work-experience level and life stage. By adopting such a whole-of-person approach, health services and governments will be better positioned to address the life aspirations of rural-based, early-career health professionals and this is likely to assist in the reduction of avoidable turnover.

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.

Factors affecting job satisfaction of Aboriginal mental health workers working in community mental health in rural and remote New South Wales.

Objective The aim of the present study was to identify factors affecting the job satisfaction and subsequent retention of Aboriginal mental health workers (AMHWs). Methods Five AMHWs working in New South Wales (NSW) for NSW Health in rural and remote community mental health (CMH) services participated in in-depth, semi-structured interviews to understand how employment and rural living factors affected workers' decisions to stay or leave their CMH positions. Results Using a constructivist grounded theory analysis, three aspects negatively impacting the job satisfaction of AMHWs were identified: (1) difficulties being accepted into the team and organisation; (2) culturally specific work challenges; and (3) professional differences and inequality. Conclusions Policy and procedural changes to the AMHW training program may address the lower remuneration and limited career opportunities identified with regard to the Bachelor Health Sciences (Mental Health) qualification. Delivering training to increase levels of understanding about the AMHW training program, and cultural awareness generally, to CMH staff and NSW Health management may assist in addressing the negative team, organisational and cultural issues identified. What is known about the topic? The Bachelor Health Sciences (Mental Health) qualification and traineeship pathway undertaken by AMHWs differs significantly from that of other health professionals working in NSW Health's CMH services. The health workforce literature identifies that each health professional group has its own culture and specific values and that forming and maintaining a profession-specific identity is an extremely important aspect of job satisfaction for health workers. What does the paper add? AMHWs working in rural and remote NSW CMH services commonly experience low levels of job satisfaction, especially while undertaking the embedded training program. Of particular concern is the health sciences qualification not translating into NSW Health's 'professionalised' workplace, as well as having negative effects with regard to remuneration and career opportunities within NSW Health. In addition, role challenges involving cultural differences and managing additional professional and personal boundaries negatively affects the job satisfaction of AMHWs. What are the implications for practice? The current structure of the AMHW training program creates workplace conditions that contribute to job dissatisfaction among rural and remote-based AMHWs. Many issues could be rectified by NSW Health making changes to the degree qualification obtained under the training program, as well as raising the level of understanding about the program and Indigenous cultural awareness generally among CMH staff and NSW Health management.

Self-reported physical and mental health of Australian carers: a cross-sectional study.

OBJECTIVE: To report on self-reported physical and mental health of informal carers in rural regions of New South Wales, Australia. METHODS: A cross-sectional community-based sample (n=222) of carers completed a questionnaire incorporating self-reported measures of health from validated international instruments including Medical Outcomes Study Scale (SF-36), the Centre for Epidemiology-Depression (CES-D) and Kessler-10 (K-10) Psychological Distress Scales, along with information on participant demographics and other key caregiving characteristics such as health condition of care recipient. RESULTS: Rural carers' self-reported health was poor as evident on the SF-36 Physical and Mental Health component scores as well as each individual domain of the SF-36. Results from the CES-D and K-10 scores indicated very high rates of depressive symptoms and psychological distress. Over 70% of carers within the current study had CES-D scores indicative of depressive symptoms. Scores on the K-10 indicate almost half the carers were experiencing high levels of psychological distress, which is over 4 times the rate reported in the general Australian population. CONCLUSIONS AND IMPLICATIONS: Results from this study were compared to Australian population normative data and were found to be significantly below Australian age-matched population norms for SF-36, CES-D and K-10. These findings illustrate the poor health profile of informal carers relative to the general Australian population, especially in terms of depressive symptoms and psychological distress. This highlights the need for additional support for rural carers in order to ease the accumulated mental and physical health burdens of this group.

Rurality and Self-Reported Health in Women with a History of Intimate Partner Violence.

OBJECTIVE: To investigate differences in self-reported health among Australian women with a history of intimate partner violence (IPV) in relation to rurality of residence. METHODS: Data were drawn from six survey waves of the Australian Longitudinal Study on Women's Health 1973-78 birth cohort. Self-reported general and mental health scores derived from the SF-36 scale were compared for women with a history of IPV living in metropolitan, regional and rural areas. Multivariable generalised estimating equations were constructed adjusting for income hardship, number of children, education, social support, age and marital status. RESULTS: Women with a history of IPV living in regional and rural areas had no significant differences in self-reported general health scores compared to their metropolitan counterparts. Rural women affected by IPV had slightly better self-reported mental health than equivalent women living in metropolitan or regional areas. The socio-demographic factors with the strongest association with self-reported health were income, education, social support, and number of children. CONCLUSIONS: Women in regional and rural areas were no more disadvantaged, in terms of self-reported general health or mental health, than IPV affected women living in major cities in Australia.

The main signs of ageing in people with intellectual disability.

OBJECTIVE: Investigations around ageing with an intellectual disability have increased substantially in the past three decades. A research gap continued to exist regarding the detection of ageing issues in this cohort of people, particularly in rural areas where access to specialist support continued to be limited. The purpose of this study was to identify the main signs of ageing in rural people with intellectual disabilities. DESIGN: A multi-round Delphi design was used to examine what signs of ageing were observed by disability support staff, who assisted people with intellectual disability. SETTING: The project was conducted across nine of the ten rural regions (as defined by the government funding body) in New South Wales (NSW). PARTICIPANTS: There were 31 participants representing 14 non-government organisations. The group was composed of 26 women and 5 men, with a mean age of 47 years, who averaged 10-year experience with people with intellectual disabilities. MAIN OUTCOME MEASURES: The objective was to gain the direct input of rurally based disability workers to identify the main signs of ageing in people with intellectual disabilities. RESULTS: Thirty-two specific signs of ageing, including emerging mental health issues, grief, loss of identity and aggression, were identified. A thematic analysis indicated two main categories: mental/emotional functioning and physical functioning. CONCLUSIONS: When carers have the information and skills needed to identify the main signs of ageing, they can more accurately recognise and address potential problems in a timely manner. Such understandings have the potential to reduce premature admissions to residential aged-care.

Influence of Intimate Partner Violence on Domestic Relocation in Metropolitan and Non-Metropolitan Young Australian Women.

Data from a national, population-based longitudinal study of Australian women (26-34 years) were analyzed to investigate the association between domestic relocation and multiple explanatory factors, namely intimate partner violence (IPV), metropolitan versus non-metropolitan residence, education, income, housing tenure, number of children, and changes in relationship status. Experience of IPV in the past 12 months was significantly associated with increased odds of domestic relocation. This association remained significant after controlling for age, social support, area of residence, income, number of children, education, and housing situation. Change in relationship status attenuated the association between recent IPV and domestic relocation. Metropolitan versus non-metropolitan residence had no major influence on these results.

Nurses' involvement in end-of-life care of patients after a do not resuscitate decision on general medical units in Saudi Arabia.

OBJECTIVES: To describe the essence of the nurses' lived experience and explore the meaning of their involvement in end-of-life care after a do-not-resuscitate decision has been made. RESEARCH METHODOLOGY/DESIGN: The research design embraced qualitative, exploratory and descriptive approaches utilising aspects of phenomenology. Purposive sampling of twenty-six registered nurses was used. Data was collected using the reflective journaling technique and were analysed using an integrated approach. Field notes were also used as a mean to enrich the description of the findings contextually. SETTING: Medical units in Saudi Arabia. RESULTS: Three main themes emerged: exhausted medical treatment, continuity of nursing care and cultural considerations in nursing care. Related sub-themes were also identified as an extension to the description of the main themes. CONCLUSION: The findings affirm that nurses working on medical units continue to maintain a constant level of care for patients and families after the do-not-resuscitate decision. Nurses found that caring for dying patients was a rewarding and worthwhile experience, albeit a challenging and demanding one. The findings suggest that improvement in end-of-life care would be best achieved by collaborative and interdisciplinary practices amongst the health care team members.

THE INFLUENCE OF SOCIAL SUPPORT ON PSYCHOLOGICAL DISTRESS IN OLDER PERSONS: AN EXAMINATION OF INTERACTION PROCESSES IN AUSTRALIA.

Social support is proposed as a coping mechanism against anxiety and depression amongst older persons, but few data have examined how this occurs. This study assessed the contributions of two sub-components of social support as mediators against psychological distress-broadly defined as anxiety and depression. 1,560 men and 1,758 women from the Hunter Community Study (Australia) completed the Duke Social Support Scale and the Kessler Psychological Distress Scale. The Duke Social Support Scale examined the amount of social interaction and satisfaction with social interactions. Significant mediating effects of social support were found in the Kessler Psychological Distress Scale items measuring depression but not anxiety. Satisfaction with social support was a significant predictor of Kessler Psychological Distress Scale total score and Sadness items, but the amount of social support was not a predictor of stress. Social support may assist with symptoms of depression, i.e., specific sadness/depressed mood, but not necessarily with anxiety. Implications for policy and service delivery were discussed.

The Fly-in Fly-out and Drive-in Drive-out model of health care service provision for rural and remote Australia: benefits and disadvantages.

CONTEXT: Rural Australians experience poorer health and poorer access to health care services than their urban counterparts, and there is a chronic shortage of health professionals in rural and remote Australia. Strategies designed to reduce this rural-urban divide include fly-in fly-out (FIFO) and drive-in drive-out (DIDO) services. The aim of this article is to examine the opportunities and challenges involved in these forms of service delivery. This article reviews recent literature relating to FIFO and DIDO healthcare services and discusses their benefits and potential disadvantages for rural Australia, and for health practitioners. ISSUES: FIFO and DIDO have short-term benefits for rural Australians seeking healthcare services in terms of increasing equity and accessibility to services and reducing the need to travel long distances for health care. However, significant disadvantages need to be considered in the longer term. There is a potential for burnout among health professionals who travel long distances and work long hours, often without adequate peer support or supervision, in order to deliver these services. A further disadvantage, particularly in the use of visiting medical practitioners to provide generalist services, is the lack of development of a sufficiently well-resourced local primary healthcare system in small rural communities. LESSONS LEARNED: Given the potential negative consequences for both health professionals and rural Australians, the authors caution against the increasing use of FIFO and DIDO services, without the concurrent development of well-resourced, funded and staffed primary healthcare services in rural and remote communities.