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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.

Background The progressive increase in life expectancy of people with intellectual disability (ID) has resulted in enhanced survival into old age and has also seen a growth in research on both lifelong and emerging ageing-related health issues. Health issues amongst provider-supported adults have been previously studied, but these studies have not always included older community-dwelling adults with ID. Methods A study examining the extent of mental health of 391 community-dwelling adults with ID age 60 and older in both metropolitan and rural areas of two East Coast Australian states was undertaken using a cross-sectional survey. Examined were a range of demographic (age, sex, living arrangements, employment and socio-economic status) and life (co-morbidities, adverse life events and social support) factors. Data were parsed by two age groupings (60-65: n = 234 and >65: n = 157). Results Findings revealed that older community-dwelling adults with ID have many of the same mental health disorders as do other ageing people, with the exception of significant psychiatric disorders often associated with older age. Over a third (35%: n = 137) reported some one or more mental health disorders. Age, sex, location (rural or urban), financial hardship, social support or type of living arrangement were not statistically significant as risk factors for poor mental health. However, employment status was a clear predictor. Stepwise regression models showed a strong association between mental ill-health and adverse life events and between mental ill-health and multiple physical co-morbidities. Conclusions The cross-sectional nature of the study limits causal inference. The cumulative effect of chronic health conditions and adverse life events cannot be prevented retrospectively. However, greater awareness amongst both health professionals and care staff that older adults with ID have a high likelihood of significant and/or repeated traumas and need better health care to limit physical co-morbidity may assist in providing support that is better tailored to individual needs in older age to reduce the burden of mental ill-health.

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.

This study is based on findings from the Attitudes to Ageing in Australia (AAA) component of Australian Survey of Social Attitudes (AuSSA). The AAA Study is funded by the ARC Centre of Excellence in Population Ageing Research (CEPAR)

Objective This paper aims to contribute to the development of a more sustainable Australian rural community mental health workforce by comparing the findings from a literature search investigating impacting factors on retention with the experiences of community mental health service managers running services in rural Australia. Design Semi-structured interviews. Setting Public health sector, rural New South Wales. Participants Five community mental health managers, running services in rural Australia. Main outcome measures Interviews were undertaken as a pilot for a broader qualitative study investigating factors influencing the decision to stay or leave among community mental health professionals working in rural positions. The purpose of undertaking this pilot study was to test for validity and relevance of the retention phenomena and help inform the research design for the main study. Results Three key retention focussed themes were identified: (i) Staffing is a persistent challenge; (ii) Small remote towns pose the biggest challenge; and (iii) The decision to stay or leave is complex and multifactorial. Conclusions The findings of this pilot study support previous research and contribute to the understanding of influences on retention among health professionals working in rural community mental health services. Importantly, those who have worked for several years in rural positions hold important information through which to explore factors that impact retention in rural and remote regions.

Aim To describe women's experiences of sexuality and body image following treatment for early-stage vulvar cancer. Background There is limited information available on sexual function following treatment for early-stage vulvar cancer. A review of the literature has shown a lack of qualitative investigation into this topic. This study was undertaken to address this deficiency and to add to the existing body of knowledge describing the psychosexual outcomes for these women. Design Qualitative interview study. Methods A qualitative approach based on interpretive phenomenology was used to interview a purposive sample of 10 women (mean age 58 years) who had previously been treated for an early-stage vulvar cancer. Interviews were conducted from June–October 2009. Data were generated from verbatim transcription of the semi-structured in-depth interviews. Thematic analysis of these data revealed themes that were common to the women's experiences of sexuality and body image. Findings Four themes were identified that described the structure of the experience. Only two of these themes, sexuality and body image, will be discussed in this paper. Conclusions Findings from this study indicated that the majority of women experienced little to no long-term disruption to sexuality and body image following conservative treatment for early-stage vulvar cancer. Intimacy and relationship status were more closely linked to women's sexual satisfaction than physical arousal. Factors contributing to women experiencing negative emotions were radical vulvar excision, multiple vulvar procedures and/or the development of lymphoedema.

Accessible summary • People with learning disability are just as likely as people in the general population to get cancer. • In this study we have looked at how often clients who get cancer are admitted to hospital. • We found that clients who get cancer are admitted to hospital much more often than clients who do not get cancer. • We also looked at the experiences of two clients to show what clients have to go through when they get cancer. • This research could help parents/carers and clients to know what to expect when people with learning disability need treatment and care for cancer. Summary In Australia, general health and medical services are subsidised by the government. This includes care for people with disabilities, screening and diagnostic services for common diseases, including cancer, and care and treatment for various medical conditions. In Western Australia, the majority of state-provided health services are well documented in linkable databases. We have examined data from a large cohort of people receiving services for learning disability from the state and linked this with the state cancer registry and hospital records. While people with learning disability appear to be at similar risk for cancer, they may have poorer treatment outcomes as they already experience a range of health conditions which can exacerbate medical complications associated with treatment and/or other primary or secondary co-morbid conditions. Our results show that the mean number of hospital admissions were higher for the cancer group, even when adjustments were made for conditions such as childhood leukaemia and renal dialysis both of which often require frequent hospitalisations. Multivariate regression analyses showed that younger age, female sex and severe or unspecified level of disability were significant contributors to the frequency of hospital admissions. Qualitative information gleaned from detailed chart reviews showed that in addition to considerable morbidity, some patients were admitted repeatedly either because of lack of supportive environments and/or lack of compliance with treatment. Issues in providing appropriate support services for individuals and their carers are discussed.

Background Down syndrome is one of the commonest causes of intellectual disability. As life expectancy improves with early and more intensive surgical and medical treatments, people with the disorder are more likely to exhibit classic morbidity and mortality patterns and be diagnosed with diseases such as cancer. Methods A profile of cancer cases among people with Down syndrome has been compiled, based on the analysis of a linked data set that included information from the Disability Services Commission of Western Australian and the State Cancer Registry. Results and conclusions Although the total age- and sex-standardized incidence ratios (SIRs) for people with Down syndrome were similar to that for the general population, SIRs for leukaemia were significantly higher while the incidence of certain other types of cancers was reduced. Overall, there was a lower incidence of solid tumours in Down syndrome, possibly reflecting the age profile of the study cohort.

The aim of the study was to estimate the prevalence and sociodemographic predictors of consanguineous unions in the State of Qatar and to assess the association between consanguinity, fertility and child health. A representative sample of 1800 Qatari women aged > or =15 years was approached for the study. Of these, 1515 (84.2%) women agreed to participate. The consanguineous marriage rate was 54.0% with estimated population confidence limits of 52.3-55.7%. First cousin unions were the most common form of cousin marriage. The level of parental consanguinity (both in the respondent's parents and her parents-in-law) was quite high. In a multivariable analysis, both education of the respondent and her husband as well as parental consanguinity were found to be strong predictors of consanguineous unions in the index generation. Although fertility was high in both groups, the mean number of pregnancies was somewhat higher in respondents with first cousin unions. Concomitantly they also had a slighter higher rate of livebirths than women in non-consanguineous unions. The occurrence of asthma, mental retardation, epilepsy and diabetes was significantly more common in offspring of all consanguineous than non-consanguineous couples.

Cohort studies have indicated that the survival of individuals with Down's syndrome has dramatically increased over the past 50 years. Early childhood survival in particular has shown major improvement, due largely to advances in cardiac surgery and in general health management. The present study was based on a continuous cohort of 1332 people with Down's syndrome in Western Australia, registered for intellectual disability services between 1953 and 2000. Their life expectancy was 58.6 years, 25% lived to 62.9 years, and the oldest living person is 73 years of age. Life expectancy for males was greater than females by 3.3 years. The substantial increase in survival across the study period means that the life expectancy of people with Down's syndrome is approaching that of the general population, but accompanied by a range of significant mid-life health problems. The findings are of relevance to all developed countries and have considerable implications in terms of the counselling information provided to families at risk of having a child with Down's syndrome.