Search

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.

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.

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.

Background: As research focuses on the concept of resilience, evidence suggests that greater levels of personal hope may have a mitigating effect on the mental health impact of adversity. In view of the adversity affecting rural communities, a better understanding of factors influencing personal hope may help identify foci for mental health promotion and mental illness prevention research and interventions.Aim: To explore the relationship between demographic, socioeconomic and mental health factors and personal hopefulness, including the influence of locality and remoteness.Method: Using data from two community-based longitudinal cohorts from New South Wales – one urban and one rural – we analysed cross-sectional relationships between a range of factors and personal hopefulness using logistic regression techniques, as part of a common follow-up. Personal hopefulness was measured using a 12-item scale and scores were categorised as low (

In high income countries the life expectancy of people with Down syndrome (DS) rose significantly during the 20th century, from around nine years in 1949 to 57 years by 2000, equating to an increase of approximately 1 year of age per calendar year. This presentation quantifies survival patterns for people with DS using comprehensive population-based data collected over a 56-year period (1953–2009). All known persons diagnosed with DS were sourced from four complementary health and disability State-based databases (Disability Services, Death Registrations, Hospitalisations and Birth Defects Notifications) in Western Australia. Survival to 2010 was confirmed by the absence of a death registration between 1969 and 2010. Life expectancy was assessed using Kaplan Meier survival using the 1,948 cases born since 1953, which ensured that no death records were lost prior to the start of the earliest database. Deaths had occurred in 590 cases (25.3%). The results showed that survival rates started to decline between 55–60 years of age. Gender disparity was apparent, with females observed to have a slightly lower mean survival age than males throughout the lifespan. Although major improvements in the survival of children with DS are evident in recent decades, overall life expectancy appears to have plateaued with only minor increases in more recent years. The study findings suggest the possibility of a current natural upper survival limit for people with DS of around 60 years of age, and/or gaps in addressing health needs later in life through appropriate screening and early treatment.

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.

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.

Injecting drug use plays a critical role in the transmission of HIV in Vietnam. This paper provides a comprehensive review of studies on risks of HIV infection among injecting drug users (IDUs) in Vietnam. Current research evidence shows that the age at which drug initiation starts is becoming younger and the transition time between non-injecting to injecting drug use becoming shorter. The practice of needle sharing and unprotected sex was quite common among the IDUs. Although most of the IDUs generally had good knowledge of HIV transmission routes, most IDUs were not aware of their infection status. Data from a national surveillance programme shows that a third of the IDUs were HIV positive. Amongst all HIV positive cases, almost two-thirds had a history of intravenous drug use. A number of studies have identified a range of risk factors and barriers to minimize the risk of HIV infection in IDUs. This paper discusses these issues and makes recommendations for changes to HIV/AIDS policies, programme interventions as well as future research on the topic.

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.

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.

Background: Down syndrome (DS) affects ∼1 per 650-1000 live births and is the most common known genetic cause of intellectual disability. A highly significant change in the survival of people with DS has occurred during the last two generations, with life expectancy estimates increasing from 12 to nearly 60 years of age. Subjects and Methods: Detailed information on 1332 people in Western Australia with DS was abstracted from a specialist statewide database for the period 1953-2000 and electronically linked with three other state or national health and mortality data sources and the state Birth Defects Registry. Results: Over the last 25 years the percentage of women over 35 years giving birth increased from 4.8 to 18.6%, accompanied by an increase in the overall prevalence of DS from 1.1 to 2.9 per 1000 births. Four life stages of DS were identified: prenatal, childhood and early adulthood, adulthood, and senescence. Although pneumonia, or other types of respiratory infections, was the most common cause of death across the entire lifespan, ranging from 23% of deaths in adulthood to 40% in senescence, each life stage exhibited a particular profile of comorbidities. Congenital heart defects were common causes in childhood (13%) and adulthood (23%), whereas in senescence coronary artery disease (10%) and cardiac, renal, and respiratory failure (9%) were leading causes of mortality. Conclusions: A major re-appraisal in attitudes towards DS is required to ensure that the medical and social needs of people with the disorder are adequately met across their entire lifespan. In particular, specific recognition of the comorbidities that can arise at different ages is needed, accompanied by the provision of appropriate levels of care and management.

The majority of people with dementia, even at advanced stages, receive most of their care and support from family members, friends, and neighbors, rather than formal support systems. This qualitative research undertaken in the Australian state of Queensland explored how family carers of people with dementia living in the community successfully manage and sustain informal caring. It also considers challenges these carers anticipated in continuing to support their family member with dementia in the future. What emerges through this analysis of the carers’ perspective on the sustainability of care is the impact of factors including the living arrangements, generational cohort and life stage of the carer, financial issues, and ability to effectively combine caring with their other roles and responsibilities in life.

The uptake of mammography for breast cancer screening is considerably lower among women with intellectual disability than for women in the general population. The purpose of the present study was to investigate carer perceptions of barriers and enablers to mammography use by these women.To determine the reasons why women with intellectual disability are not utilising screening services, a series of focus groups were held with social trainers working in accommodation provided for people with intellectual disability.The major themes identified included the need for a medical referral or invitation from the mammography service to motivate people to attend; the belief that many women with intellectual disability would not understand the procedure or why it needs to be done and therefore would experience fear and anxiety to a greater extent than women in the general population; and that physical disabilities comorbid in many of the women would limit their ability to be adequately accommodated by the machines used to take a mammogram.The social trainers agreed that many of the barriers to screening would be difficult to overcome and supported alternative strategies to mammography, such as clinical breast examination.

Objective: During the last 50 years there have been significant improvements in life expectancy among people with intellectual disability (ID), and so their incidence of age-associated diseases, such as cancer, is rising. The aim of this study was to compare the rate of cancer in people with ID with that found in the general population. Methods: Information on 9409 individuals registered with the Disability Services Commission of Western Australia was linked to the State Cancer Registry, with 200 cases of cancer detected over 156,729 person-years. Standardised incidence ratios (SIRs) and 95% confidence intervals were calculated for both sexes separately by 5-year age groups for the period 1982-2001. The same procedures were adopted in the estimation of SIRs for specific types of cancers. Results: The age-standardised incidence of all cancers in people with ID was not significantly different from the general population. However, males with ID were observed to have a significantly increased risk of leukaemia, brain and stomach cancers, and a reduced risk of prostate cancer, while leukaemia, corpus uteri and colorectal cancers were significantly higher in females. Conclusions: Health practitioners need to be aware that with improvements in life expectancy the incidence of cancer in people with ID is likely to rise. More proactive health promotion campaigns may be needed for people with ID, who are likely to be poor users of screening services and whose symptoms may not be reported until they are in more advanced, less treatable stages of disease.

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.

The preliminary findings from an ongoing large-scale Australian study assessing health, well-being and health service use for older people with intellectual disability (PwID), compared to their normative age-peers, have revealed the nature of the burden of chronic disease experienced by PwID aged ≥60 years (n=356). Preliminary results confirm a significant burden of chronic disease including: arthritis (41%), persistent pain (28%), diabetes (23%), asthma (16%), heart disease (15%), cancers (8.7%), depression (22%), anxiety (20%), schizophrenia/bipolar (3.3%) and dementia (2.2%). Many respondents reported multiple co-morbidities. For most conditions, there was a noted discrepancy in the proportion of respondents with a chronic disease diagnosis versus those who were prescribed medication, which alludes to inadequacy of appropriate healthcare for PwIDs by primary-care physicians. Comparative data from OECD countries reveal patterns of chronic disease for older PwID; given this there are significant challenges of healthcare service provision across disability and aged-care services.

The emerging phenomenon of ageing with an intellectual disability has become subject to an increasing research focus in recent years. However, there remains little knowledge regarding the specific impediments that community workers face in supporting this cohort. The aims of the current study were to identify the major factors that, direct care staff believe, have most impact upon individuals ageing with an intellectual disability in the community. A three-round Delphi project was conducted across rural areas of New South Wales in Australia with 31 disability support workers to gain their perspectives on the main impediments facing a person ageing with intellectual disability. The 2010 study identified that the issue of ageing with an intellectual disability was presenting significant problems for community-based service delivery to this group of people. The panel identified 25 different impediments to the provision of support. A thematic analysis of the items indicated three main themes of 'funding', 'training' and 'access to services'. By identifying these impediments to supporting people ageing with an intellectual disability in the community, both services and government funding bodies have the ability to plan to overcome both current and future problem areas. This identification of impediments may facilitate individuals to receive more appropriate assistance, which in turn may lead to an improved quality of life and maintenance of a community-based placement rather than premature admission to the congregate-care system. This study is particularly timely, given that Australia is in the midst of implementing a National Disability Insurance Scheme, and is an opportunity for all levels of government to agree on the mechanisms to appropriately assist individuals with an intellectual disability to continue to be supported in the community as they age.

Dementia is one of the major causes of disability and dependence amongst older people and previous research has highlighted how the well-being of people with dementia is inherently connected to the quality of their relationships with their informal carers. In turn, these carers can experience significant levels of emotional stress and physical burden from the demands of caring for a family member with dementia, yet their uptake of formal services tends to be lower than in other conditions related to ageing. This paper is based on a qualitative study undertaken in the Australian state of Queensland and explores issues of access to and use of formal services in dementia care from the perspective of the informal family carers. It identifies three critical points at which changes in policy and practice in the formal care system could improve the capability of informal carers to continue to care for their family member with dementia: when symptoms first become apparent and a diagnosis is sought; when the condition of the person with dementia changes resulting in a change to their support needs; and when the burden of informal care being experienced by the carer is so great that some form of transition appears to be immanent in the care arrangement.

BACKGROUND The present study was undertaken to evaluate the determinants of acute (30-day) mortality after spontaneous intracerebral hemorrhage (ICH) in a developing country setting, and to compare these findings with those available from studies conducted in the West. METHODS Medical records of 146 patients admitted to a major tertiary hospital in Karachi, Pakistan between 1990 and 1991 with a diagnosis of spontaneous ICH were reviewed. The level and intensity of care provided to these patients was similar to that available at modern neurosurgical centers. The salient prognostic indicators that were studied included hypertension, pulse pressure, GCS score, neurologic deficits, and CT-scan predictors including site, size, and intraventricular spread of hemorrhage. These data were used to determine independent predictors of 30-day mortality by univariate and multivariate analysis. Additionally, 30-day survival probabilities for these outcome predictors were also computed. RESULTS The 30-day mortality after spontaneous ICH was 39.7%. Two-thirds of the patients had a history of hypertension. The important clinical predictors at the multivariate level included GCS score ≤8 and progressive increase in pulse pressure. The CT scan predictors included intraventricular spread of hemorrhage, ventricular enlargement, and size of the bleed. Location of the lesion did not appear to significantly influence mortality. Survival analysis showed a large clustering of deaths within the first 72 hours of hospitalization. CONCLUSIONS The 30-day mortality rate and prognostic predictors for spontaneous intracerebral hemorrhage were found to be similar to those reported in the Western hemisphere. However, the correlation of incremental increase in pulse pressure with deteriorating prognosis was a new and significant finding.

Childhood pneumonia continues to be the second highest contributor to childhood morbidity and mortality in all ethnic groups in Pakistan. Information on community perceptions and management is largely limited to the Punjabi populace. In this study, ethno-specific illness terminologies, recognition and severity indicators and resort to treatment options for childhood pneumonia are explored among the two main ethnic groups in Sindh. Results are based on focus group discussions with 90 caretakers and 16 case history interviews. The findings indicate that pneumonia recognition is almost universal. The main recognition and severity indicator was pasli chalna (chest indrawing) followed by signs and symptoms relating to the quality of breathing and presence of high fever, lethargy and anorexia. Recognition of rapid breathing was low and mostly associated with fever. Exposure to thand (cold) through a variety of mechanisms was perceived to be the dominant causal model. The concept of contagion was virtually non-existent. Despite this, belief in efficacy of allopathic care was very high. Most caretakers reported seeking outside care within one to three days of the onset of symptoms. However, unrealistic expectations of cure often led to change in physicians and treatment regimen, if no improvement was observed by the second day. On the other hand, the quality of care provided by the physicians (both licensed and unlicensed) left much to be desired. Female autonomy and mobility did not appear to be a major constraint in seeking outside care other than for hospitalisation. Implications of these findings for the national acute respiratory infections control programme and future research are discussed

Socioeconomic and health disadvantage is widespread within and across indigenous communities in the world, leading to differentials in morbidity and mortality between indigenous and non-indigenous populations. Sexually transmitted infections (STIs), including HIV/AIDS, among indigenous populations are an emerging public health concern. The focus of this paper is on examining the STI epidemiology in indigenous communities in various parts of the world utilizing a range of data sources. Most of the STI research on global indigenous communities has concentrated on developed countries, neglecting more than half the world’s indigenous people in the developing countries. This has resulted in major gaps in data at global level for STIs and HIV/AIDS among indigenous populations. Available data show that the prevalence of STIs is increasing among the indigenous communities and in several instances, the rates of these infections are higher than among non-indigenous populations. However, HIV still remains low when compared with the rates of other STIs. The paper argues that there is an urgent need to collect more comprehensive and reliable data at the global level across various indigenous communities. There is also an opportunity to reverse current trends in STIs through innovative, evidence-based and culturally appropriate targeted sexual health programmes.

Background. To date, relatively few representative data have been available to health planners and advocacy groups on the life expectancy of people with intellectual disability. A study of trends in the survival profiles of people with intellectual disability was undertaken to assist in the planning of appropriate medical and support services. Methods. Since 1953, the Disability Services Commission of Western Australia has maintained a database of persons diagnosed with intellectual disability. The database was used to calculate survival probabilities on a total of 8724 individuals, 7562 of whom were still alive at the time of sampling in December 2000. Results. Kaplan-Meier survival plots showed a strong negative association between severity of intellectual disability and survival, with median life expectancies of 74.0, 67.6, and 58.6 years for people with mild, moderate, and severe levels of handicap. Significant negative associations also were observed with male gender, Indigenous Australian parentage, and individuals diagnosed with a specific genetic disorder. Conclusions. The findings indicate a major and expanding increase in the service requirements of this aging, intellectually disabled population during the past two generations.

Objectives. Partner violence is linked to cervical cancer and other gynaecological conditions. However, results of current research into associations between partner violence and cervical cancer screening have been inconclusive. Therefore, the current research investigates the association between partner violence and inadequate cervical cancer screening. Methods. Participants were 7312 women aged 45-50 years who responded to the Australian Longitudinal Study on Women's Health population-based surveys in 1996 and 2004. The women self-reported frequency of Pap smears via mailed questionnaire. Results. Women who had experienced partner violence at least eight years earlier, compared with those who had not, were more likely to report current inadequate screening (OR: 1.42, 95%CI: 1.21; 1.66). After adjusting for known barriers to preventive screening (education, income management, marital status, general practitioner visits, chronic conditions) and depression, partner violence was independently associated with inadequate Pap tests (OR: 1.20, 95%CI: 1.01; 1.42). This association was no longer significant once access to a GP of choice was added to the model (OR: 1.18, 95%CI: 0.99; 1.40). Conclusions. The significance of this study lies not just in confirming a negative relationship between cervical cancer screening and partner violence, but in suggesting that good access to a physician of choice appears to significantly decrease this negative relationship. (C) 2008 Elsevier Inc. All rights reserved.

Background: Physicians’ inadequate involvement in sexual risk assessment has the potential to miss many asymptomatic cases. The present study was conducted to explore sexual risk assessment by physicians in clinical practice and to identify barriers in eliciting sexual histories from patients. Methods: A stratified random sample of 15% of general practitioners (GP) from New South Wales was surveyed to assess their management of sexually transmissible infections (STI). In total, 409 GP participated in the survey with a response rate of 45.4%. Results: Although nearly 70% of GP regularly elicited a sexual history from commercial sex workers whose presenting complaint was not an STI, this history taking was much lower (

Background: The health and well-being of Indigenous people is a significant global problem, and Aboriginal Australians suffer from a considerably higher burden of disease and lower life expectancy than the non-Indigenous population. Intellectual disability (ID) can further compromise health, but there is little information that documents the prevalence of ID among indigenous populations. This study provides information on ID among the Aboriginal population of Western Australia. Methods: The Disability Services Commission (DSC) of Western Australia has maintained a statewide database of people with ID since 1953. Data on people of Aboriginal descent were extracted from the DSC database and linked to two other state-based databases, the Hospital Morbidity Data System and the Deaths Registry, with additional linkage to the National Death Index. The linked data were used to assess the prevalence, survival patterns and causes of death in Aboriginal people with ID. Results: Although comprising 3.5% of the population, Aboriginal Australians represented 7.4% of all people registered for ID services. The level of ID was assessed as borderline or mild in 40.7% of cases, moderate in 19.9%, severe or profound in 12.1%, but had not been specified in 27.2% cases. Median survival was 55.1 years for men and 64.0 years for women, with a mean age at death (n = 102) of 19.6 years. The leading causes of death were respiratory diseases, diseases of the circulatory system, and accidents. Conclusions: The study presents unique population summary data for ID in the Aboriginal community of Western Australia. To provide appropriate prevention and intervention strategies, there is an urgent need for more detailed information on the prevalence and patterns of ID.

The study examined correlates of three common sexually transmitted infections (STIs) among Australian women. The sample comprised 9582 women aged 22–27 years who took part in the second postal survey in 2000, of the young cohort of the Australian Longitudinal Study on Women's Health. Self-reported rates of diagnosis in past four years were: chlamydia 1.47%( n = 141), genital herpes 1.75% ( n = 168), and genital warts 3.45% ( n = 331). Multivariate analyses revealed that the odds of all three STIs increased with number of male sexual partners and illicit drug use. Younger and rural women had higher odds of being diagnosed with chlamydia. The odds of both genital herpes and genital warts were higher with longer oral contraceptive pill use and higher stress, while women who had experienced violence were found to have higher odds of herpes. The identification of factors associated with common STIs among young Australian women will inform better-targeted health promotion and disease prevention programmes.

Consanguinity is defined as marriage between blood relatives and is commonly used to describe relationships that include up to second cousin marriages (Bittles, 1994). At a biological level, consanguineous unions may increase the risk in the homozygous state in their children [note 1] (Modell and Darr, 2003). This might be reflected in relatively higher probability of an autosomal recessive inherited disease and certain types of congenital malformations. However consanguinity does not increase the risk of autosomal dominant or X-linked disorders. Studies on consanguinity have focussed on the probable higher risk of prenatal or postnatal mortality and/or morbidity due to congenital malformations and/or intellectual disability (Bundey and Aslam, 1993) [note 2].

Background. It is estimated that approximately 50% of women in Australia with intellectual disability will live to 70 years of age and as a result many will fall within the age group at highest risk for breast cancer (50 1369 years). Methods. Subjects were identified through the Western Australia Disability Services database. To determine the number of women diagnosed with breast cancer during the period 1982 132000, individual records (n = 2,370) were linked to the Western Australia Cancer Registry and the Mammography Screening Registry. Results. The incidence of breast cancer among women with intellectual disability was 64.0 per 100,000 person-years, by comparison with 146.7 per 100,000 person-years in the general population. The uptake of breast cancer screening was examined in a subgroup of 380 women, 34.7% of whom had used mammographic screening, as opposed to 54.6% screening uptake in the general population. Failure to use screening services was highest in women who were unmarried, and was positively associated with severity of intellectual disability, presence of physical disabilities, and urban residence. Conclusions. The lower incidence of breast cancer in women with intellectual disability may in part be attributable to decreased life expectancy, but it also appears to reflect significant under utilization of the readily available screening services.

In virtually all countries life expectancy is longer in females than in males. A multigeneration, population-based dataset was used to investigate whether a gender-specific difference in life expectancy could be determined in a large cohort (n = 1,332) of people with Down syndrome resident in Western Australia. Contrary to the established pattern of longevity in the general population, and in most people with intellectual disability, males with Down syndrome had a significantly greater life expectancy than females with the same disorder. The reasons for this atypical finding are discussed in terms of the patterns of morbidity experienced by people with Down syndrome, especially at early and late stages of their lifespan.

Purpose– While ageing with an intellectual (learning) disability has been subject to increased research in recent years, there remains little knowledge regarding the daily practice issues that disability workers struggle most to support in this cohort. The purpose of this paper is to gain feedback directly from staff regarding the problems they experience in daily work, and to evaluate whether any changes to legislation or practice could potentially alleviate identified areas of concern.Design/methodology/approach– A Delphi project was conducted over three rounds with participants from rural areas of New South Wales (NSW). The panel was composed of support workers who assist people ageing with a learning disability. Participants were asked their perceptions of the main practice issues facing them while they provide support.Findings– The panel identified 29 issues that were considered problematic in the provision of support to people ageing with a learning disability. A thematic analysis indicated three main themes of access to services; time constraints; and funding.Research limitations/implications– The participants in this study were all disability workers employed by non-government organisations in rural NSW, and as such, many of the issues identified may be specific to this population cohort and geographic setting. Any generalisation of these results to other locations or populations must be considered within these limitations.Originality/value– Identification of the issues facing disability staff may facilitate government, health care providers and disability organisations to proactively plan to address current and future problem areas. The consequent effect of improving practices can assist individuals to receive better support and lead to a corresponding improvement in their quality of life. The current implementation of the National Disability Insurance Scheme in Australia is an ideal opportunity for cross-sectoral collaboration to change practice to facilitate better support for a highly vulnerable group of the community.

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 comparative...

The past century has seen a dramatic improvement in the life expectancy of people with Down syndrome. However, research has shown that individuals with Down syndrome now have an increased likelihood of early onset dementia. They are more likely than their mainstream peers to experience other significant co-morbidities including mental health issues such as depression. This case study reports a phenomenon in which three individuals with Down syndrome and dementia are described as experiencing a rebound in their functioning after a clear and sustained period of decline. It is hypothesized that this phenomenon is not actually a reversal of the expected dementia trajectory but is an undiagnosed depression exaggerating the true level of functional decline associated with the dementia. The proactive identification and treatment of depressive symptoms may therefore increase the quality of life of some people with Down syndrome and dementia.

Background The issue of ageing within the cohort of people with intellectual disabilities has been an increasing focus for research. However, the training needs of the staff who support them has not been subject of extensive examination. Materials and Methods A multiround Delphi project was conducted focusing upon the impact ageing issues have on the support provided by disability workers, and what training is required to address the identified areas. Results Three rounds of the Delphi identified twenty-six separate important issues. A thematic analysis identified five main themes including Generic Training Issues; Medical Issues; Emerging Ageing Issues Requiring Changing Support; Mental Health Issues; and Quality of Life. Conclusions The study identified a series of training priorities for staff assisting people ageing with an intellectual disability. It would appear possible for many training programmes to be developed and delivered with minimal cost impacts even within rural localities.

Accessible summary This paper is about older people with learning disabilities who live in the country in Australia. We talked to both individuals and their carers to find out what things helped them they got older, and what things made it harder. These people said that they were well supported by the local community and particularly their doctors. However, many people in this project also reported problems about living in the country such as limited choices and being forced to make decisions they did not like. Abstract 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.