Out of sight, out of mind? The inclusion and identification of people with intellectual disability in public health research.

AIMS: Adults with intellectual disability experience substantial health inequities. Public health research aiming to improve the lives of this population group is needed. We sought to investigate the extent to which a sample of international public health research includes and identifies people with intellectual disability. METHODS: In this systematic review, we examined a select number of public health journals to determine (1) how often people with intellectual disability are explicitly included in randomised controlled trials (RCTs) and cohort studies and (2) how the presence of intellectual disability is identified and reported. RESULTS: Among eligible articles in these selected public health journals, it was found that cohort studies passively exclude people with intellectual disability, while RCTs actively exclude this population. Most general population articles that explicitly identified people with intellectual disability did so through self-report or proxy report and databases. CONCLUSIONS: A more extensive and adequate evidence base relating to the health of this overlooked population group is needed. A useful first step would be for researchers specialising in intellectual disability to identify how we can best assist mainstream researchers to include and identify people with intellectual disability in their population-level studies.

Supporting primary healthcare professionals to care for people with intellectual disability: a research agenda.

BACKGROUND: The vast health inequities experienced by people with intellectual disability remain indisputable. Persistent and contemporary challenges exist for primary healthcare providers and researchers working to contribute to improvements to the health and well-being of people with intellectual disability. Over two decades after the only review of supports for primary healthcare providers was published, this paper contributes to an evolving research agenda that aims to make meaningful gains in health-related outcomes for this group. METHODS: The present authors updated the existing review by searching the international literature for developments and evaluations of multinational models of care. RESULTS: Based on our review, we present three strategies to support primary healthcare providers: (i) effectively using what we know, (ii) considering other strategies that offer support to primary healthcare professionals and (iii) researching primary health care at the system level. CONCLUSIONS: Strengthening primary care by supporting equitable provision of health-related care for people with intellectual disability is a much needed step towards improving health outcomes among people with intellectual disability. More descriptive quantitative and qualitative research, as well as intervention-based research underpinned by rigorous mixed-methods evaluating these strategies at the primary care level, which is sensitive to the needs of people with intellectual disability will assist primary care providers to provide better care and achieve better health outcomes. ACCESSIBLE ABSTRACT: Many people with intellectual disability have poor health. The authors reviewed what has been written by other researchers about how to improve the health of people with intellectual disability. In the future, people who support adults with intellectual disability should continue doing what they do well, think of other ways to improve health, and do more research about health. At all times, the needs of people with intellectual disability should be the greatest concern for those trying to support them.

"We can talk while we're walking": seeking the views of adults with intellectual disability to inform a walking and social-support program.

To better understand how physical activity programs may contribute to improved health and social-support outcomes for people with intellectual disability, the authors conducted semistructured interviews with 11 people with intellectual disability and community-based volunteers in Brisbane, Australia. Three broad themes emerged: individual factors that generally facilitated activity, external factors that posed barriers to participation, and broader normative factors that directed participation. A key reflection arising out of the thematic analysis was that participants with intellectual disability and volunteers highlighted subtle but pervasive differences in barriers and facilitators to being active. Recommendations are provided for interventions aiming to improve physical activity and social support among those with intellectual disability. The authors' research process demonstrates the utility of seeking the views of potential participants before program rollout to inform implementation and demonstrates the usefulness of a qualitative, actively inclusive approach to health interventions.

A systematic review of interventions aiming to improve involvement in physical activity among adults with intellectual disability.

BACKGROUND: Evidence suggests that most adults with intellectual disability do not participate in sufficient amounts of physical activity (PA). A systematic review of peer-reviewed studies that reported an intervention aiming to improve PA levels of adults with intellectual disability was conducted. METHODS: Keywords related to intellectual disability and physical activity were used to search relevant databases. Studies were excluded if they did not measure PA as an outcome for adults with intellectual disability, were non-English, and were not peer-reviewed. All relevant studies were included in the review regardless of methodological quality and design. RESULTS: Six articles met the inclusion criteria. These included health education or health promotion programs with PA, nutrition, and weight loss components. The quality of studies included in this review was generally poor. Most studies used a prepost design, sample sizes were small, and measurement tools were used that are not valid and reliable for the population assessed. CONCLUSIONS: PA interventions have the potential to improve the health and wellbeing of people with intellectual disability, a vulnerable group who require attention from public health practitioners and researchers. Given the health inequities that exist, public health researchers should target efforts to improve PA levels among this group.

A comparison of risk factors for hepatitis C among young and older adult prisoners.

Internationally, the prevalence of hepatitis C infection is higher among prisoners when compared to the general population, particularly among people who inject drugs. This study estimates the prevalence of, and compares the risk factors for, hepatitis C in young (< 25 years) and older (≥ 25 years) prisoners with a history of injection drug use. Participants were 677 sentenced prisoners in Queensland, Australia, with a lifetime history of injection drug use, recruited in the 6 weeks prior to release from custody. The prevalence of hepatitis C exposure was significantly lower in young prisoners than in older prisoners (20.7% vs. 29.4%, p = .03). Risk factors for hepatitis C varied between young and older prisoners. Young people who inject drugs and who have had shorter time at risk of hepatitis C exposure are an important target group for hepatitis C prevention efforts.

Psychotropic medication use in adolescents with intellectual disability living in the community.

PURPOSE: Information on the use of psychotropic medications in adolescents with intellectual disability is scant. Such information can guide interventions to improve psychotropic medication use in this population. We investigated the prevalence of, and factors associated with, psychotropic medication use in adolescents with intellectual disability in Australia who live in the community. METHODS: Cross-sectional data were obtained from adolescents with intellectual disability living in the community in South East Queensland, Australia, between February 2007 and September 2010. Self-reported information on medication use was extracted from a health screening tool. Demographic and medical data were collected through parent/caregiver surveys. Medications were classified according to the Anatomical Therapeutic Chemical classification system. Psychopathology was assessed using the Developmental Behaviour Checklist Short Form. Logistic regression analysis was used to assess the association of demographic and medical characteristics with psychotropic medication use. RESULTS: There were 176 participants (median age = 16 years, range = 11-19 years; 55% male). Psychotropics were used by 20% of participants. Psychostimulants were the commonest psychotropic class, used by 9% of participants. Multipsychotropic prescribing was not common with only seven participants using more than one psychotropic agent. After adjusting for potentially confounding variables, use of psychotropic medications was significantly associated with male gender (adjusted odds ratio = 3.6; 95% confidence interval = 1.3-9.5) and having major behaviour problems (3.1; 1.1-8.9). CONCLUSIONS: Adolescents with intellectual disability use a wide range of psychotropic medications. Being male and having major behaviour problems are associated with the use of psychotropic medications. Research examining the rationale for psychotropic prescribing in this population is needed.

Topics, methods and challenges in health promotion for people with intellectual disabilities: a structured review of literature.

People with intellectual disabilities (ID) experience substantial health inequities compared, with the general population. Many secondary conditions and lifestyle related health problems could be, prevented with adequate health promotion. The aim of this structured review is to provide insight into, the main characteristics of published health promotion intervention studies for people with ID and, in, doing so, to identify best practice and knowledge gaps. Relevant studies were identified through a, structured literature search of multiple electronic databases (PubMed, CINHAS, Scopus, PsychINFO), the search strategy covered health promotion and intellectual disabilities for available papers, published between February 2002 and 2012. In total, 25 studies were included and analyzed. Overall, studies were diverse and explored a variety of health issues. Papers included a variety of participants (in relation to level of disability) and intervention approaches. With regard to quality, many studies, failed to report how they recruited their participants, and there were substantial challenges identified, by authors in relation to recruitment, implementation of interventions, and the selection of outcome, measures used as well as the usability of measures themselves. Our findings suggest that this field, experiences methodological weaknesses and inconsistencies that make it difficult to compare and, contrast results. Theoretically driven studies that take into account the views and expectations of, participants themselves are needed, as is research that investigates the reliability and validity of, outcome measures for the ID population. Collaboration with mainstream health promotion research is, critical.

Improving access to electronic health records for people with intellectual disability: a qualitative study.

People with intellectual disability represent ~2-3% of the Australian population and experience elevated rates of mortality and morbidity compared with the general population. People with intellectual disability, and their families and carers, must keep track of extensive medical information while also managing turnover of paid staff, general practitioners and other health professionals, making them beneficiaries of Australia's new eHealth record system. Although they are key users, there is a lack of knowledge about the accessibility of the system for individuals with intellectual disability, or those responsible for managing their health information. This is a missed opportunity to improve the lives of an already overlooked group. This study aimed to identify the facilitators and barriers to registering for an eHealth record network for people with intellectual disability and those supporting them to manage their health information. We interviewed potential users of eHealth records, including four people with intellectual disability, three family members and two residential support workers. Our findings suggest that decision-makers involved in the roll-out of the eHealth record networks should incorporate 'reasonable accommodations' to improve accessibility for people with intellectual disability and those who support them to manage their health information. This includes identifying and eliminating the barriers to accessibility of eHealth records and taking appropriate measures to promote access to individuals with intellectual disability. People with intellectual disability and the people who support them are a diverse group with a range of abilities. The translation of their views into practice will help to improve the eHealth system for this and other vulnerable population groups.

Risk of death for young ex-prisoners in the year following release from adult prison.

BACKGROUND: In the community, all-cause mortality rates among those younger than 25 years are considerably lower than those of older adults and are largely attributable to risk-taking behaviours. However, given the unique health profiles of prisoners, this pattern may not be replicated among those leaving prison. We compared rates and patterns of mortality among young and older ex-prisoners in Queensland, Australia. METHODS: We linked the identities of 42,015 persons (n=14,920 aged <25 years) released from adult prisons in Queensland, Australia with the Australian National Death Index. Observations were censored at death or 365 days from release. We used Cox proportional hazards regression to explore associations between mortality and demographic and criminographic characteristics. We used indirect standardisation to compare rates of all-cause mortality for both age groups with those for the general population. We calculated proportion of deaths across specific causes for each age group and relative risks for each cause for young versus older ex-prisoners. RESULTS: Being young was protective against death from all causes (AHR=0.7, 95% CI 0.5-0.8); however, the elevation in risk of all-cause death relative to the general population was greater for those aged less than 25 years (SMR=6.5, 95% CI 5.3-8.1) than for older ex-prisoners (SMR=4.0, 95% CI 3.5-4.5). Almost all deaths in young ex-prisoners and the majority of those in older ex-prisoners were caused by injury or poisoning. CONCLUSIONS: Young people are at markedly increased risk of death after release from prison and the majority of deaths are preventable.

Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation.

Menstrual myths may influence decisions about menstrual and fertility management for women with intellectual disabilities and high support needs. We identify six myths (related to menstruation, menstrual management, communication, sexual feelings, menstrual difficulties, and surgical elimination) and the evidence that dispels these myths. We provide reflexive questions for practitioners to help them critically reflect on their own approaches to menstrual management. We encourage those supporting women with disabilities to consider the reflective questions we have provided and to strive to support informed decision-making about menstruation and the related areas of fertility and sexual feelings.

Does biodiversity improve mental health in urban settings?

BACKGROUND: Globally, the human and economic burdens of mental illness are increasing. As the prevalence and costs associated with mental illness rise, we are progressively more aware that environmental issues such as climate change and biodiversity loss impact on human health. HYPOTHESIS: This paper hypothesises that increased biodiversity in urban environments is associated with improved mental health and wellbeing. It proposes the ecological mechanism through which the association may exist, and explores the extant literature to determine the extent of empirical evidence to support our hypothesis. EVIDENCE: While there is a substantial literature investigating the impact of 'green space' and contact with nature on mental health, we identified only one original research paper that directly investigated the link between biodiversity and mental health. This suggests that the extant evidence considers only 'one part of the story', providing an evidence base which is inadequate to inform policy on biodiversity conservation and public health. IMPLICATIONS: Our hypothesised relationship between environmental change and mental health proposes conservation and restoration of biodiversity in urban environments as a form of intervention for improving human health. It also highlights the need for a better evidence base to demonstrate the synergistic benefits of increased biodiversity and mental health to decision makers. Well-designed quantitative epidemiological research is needed to establish the strength of any such causal relationship.

Beyond reintegration: a framework for understanding ex-prisoner health.

PURPOSE: This paper proposes a framework to better understand ex-prisoner health, and pilot-tests the framework using qualitative interviews with ten people who have been out of prison for two years or more. The proposed framework considers different stages of re-entry (from pre-incarceration through to post-release), individual and structural factors influencing health, and health outcomes. DESIGN/METHODOLOGY/APPROACH: The authors conducted qualitative, open-ended interviews with ex-prisoners released from prison two or more years ago, who could be considered to have transitioned "successfully" out of prison. The aim of the interviews was to generate insights into the strategies that ex-prisoners use to negotiate the post-release period. FINDINGS: Most of the themes that emerged from interviews were consistent with the proposed framework. Structural factors are important concerns for ex-prisoners that may have to be resolved before other issues, such as drug addiction, can be addressed. However, these findings suggest that it is inappropriate to view health-related experiences during re-entry as homogenous, given the diversity of individual characteristics and backgrounds among ex-prisoners, notably including pre-incarceration social status. ORIGINALITY/VALUE: To explain the health-related experiences of people following their release from prison, we need to think beyond reintegration and move beyond homogenous notions of the ex-prisoner population. Addressing sociocultural, demographic and incarceration-specific factors that ameliorate or intensify the challenges faced by ex-prisoners is of critical importance.

Young prisoners: an important group for health research?

This study contrasted the health of young prisoners (18 to 24 years) with that of adult (25 to 40 years) and older adult (older than 40 years) prisoners. Young prisoners reported good physical health but poor educational and employment histories, involvement in the juvenile justice system, and a high prevalence of substance misuse. Young prisoners represent an important group for research aiming to improve prisoner health.

Early weaning and alcohol disorders in offspring: biological effect, mediating factors or residual confounding?

AIMS: This study explores associations between early weaning and alcohol use disorders in youth and mechanisms by which these associations may operate. DESIGN: We used data from the Mater University Study of Pregnancy and its outcomes, an Australian birth cohort study based in Brisbane. SETTING AND PARTICIPANTS: This study is based on a subsample of 2370 participants for whom complete data were available at age 21 years. Length and method of breastfeeding were assessed at 6 months. MEASUREMENTS: Alcohol use disorders were assessed at age 21 using the life-time version of the Composite International Diagnostic Interview-computerized version (CIDI-Auto). We adjusted for maternal age, marital status, education, alcohol, tobacco use, anxiety, depression and maternal attitudes towards the baby. Attention Deficit and Hyperactivity Disorders (ADHD) and Intellect Quotient (IQ) were measured with the Child Behaviour Checklist (5 years) and the Ravens SM (14 years), respectively. FINDINGS: Those who had been weaned within 2 weeks of being born and breastfed at regular intervals were at increased risk of meeting criteria for alcohol use disorders at age 21 [odds ratio (OR) 1.71, 95% confidence interval (CI):1.07, 2.72]. CONCLUSION: This study confirms a small but robust association between early weaning and increased risk of alcohol use disorders.