Disability-related inequalities in the prevalence of loneliness across the lifespan: trends from Australia, 2003 to 2020.

BACKGROUND: Experiencing loneliness can be distressing and increasing evidence indicates that being lonely is associated with poor physical and mental health outcomes. Cross-sectional studies have demonstrated that people with disability have increased risk of experiencing loneliness compared to people without disability. However, we do not know if these inequalities have changed over time. This study investigated the prevalence of loneliness for people with disability in Australia annually from 2003 to 2020 to examine whether disability-related inequalities in loneliness have changed over time, and disaggregated results for subgroups of people with disability by age group, sex, and disability group. METHODS: We used annual data (2003-2020) from the Household, Income and Labour Dynamics in Australia Survey. Loneliness was measured by a single question assessing the subjective experience of loneliness. For each wave, we calculated population-weighted age-standardised estimates of the proportion of people experiencing loneliness for people with and without disability. We then calculated the absolute and relative inequalities in loneliness between people with and without disability for each wave. Analyses were stratified by 10-year age groups, sex, and disability group (sensory or speech, physical, intellectual or learning, psychological, brain injury or stroke, other). RESULTS: From 2003 to 2020, the prevalence of loneliness was greater for people with disability, such that people with disability were 1.5 to 1.9 times more likely to experience loneliness than people without disability. While the prevalence of loneliness decreased for people without disability between 2003 and 2020, the prevalence of loneliness did not decrease for people with disability during this period. Inequalities in loneliness were more substantial for people with intellectual or learning disabilities, psychological disability, and brain injury or stroke. CONCLUSION: This study confirms that people with disability have increased risk of loneliness compared to people without disability. We add to the existing evidence by demonstrating that disability-related inequalities in loneliness have persisted for two decades in Australia without improvement. Our findings indicate that addressing inequalities in loneliness for people with disability is a critical public health concern given that loneliness is associated with a wide range of poor health outcomes.

A call to action for more disability-inclusive health policy and systems research.

To date, the exclusion of people with disability participating in research has limited the evidence base informing health system strengthening policy and practice more generally, and addressing disability-related inequalities in access to health services and better health outcomes more particularly. Given that more than 1 billion people, or 16% of the world's population, have a disability, we may fail to respond to the needs of a large proportion of the population unless we are purposeful with inclusion. Our research in this area indicates that online qualitative methods can be effective in engaging under-represented groups and are essential to ensure their input into health policy and systems research. This has important implications for researchers whose responsibility it is to make all health research disability inclusive, for ethical and methodological reasons, so they do not perpetuate the under-representation of people with disability in health policy and systems research. Our paper puts forward several recommendations to facilitate more people with disability participating in health policy and systems research. By critically reflecting on a health system strengthening research project, in which we purposefully aimed to support the participation of people with disability, we identify lessons learnt and issues to consider when planning and conducting accessible research. We also propose a set of actions for moving the agenda forward.

Health Statistics in Australia: What We Know and Do Not Know.

Australia is a federation of six states and two territories (the States). These eight governmental entities share responsibility for health and health services with the Australian Government. Mortality statistics, including causes of death, have been collected since the late 19th century, with national data produced by the (now) Australian Bureau of Statistics (ABS) from 1907. Each State introduced hospital in-patient statistics, assisted by State offices of the ABS. Beginning in the 1970s, the ABS conducts regular health surveys, including specific collections on Aboriginal and Torres Strait Islander peoples. Overall, Australia now has a comprehensive array of health statistics, published regularly without political or commercial interference. Privacy and confidentiality are guaranteed by legislation. Data linkage has grown and become widespread. However, there are gaps, as papers in this issue demonstrate. Most notably, data on primary care patients and encounters reveal stark gaps. This paper accompanies a range of papers from expert authors across the health statistics spectrum in Australia. It is hoped that the collection of papers will inform interested readers and stand as a comprehensive review of the strengths and weaknesses of Australian health statistics in the early 2020s.

Health and Access to Health Services for People with Disability in Australia: Data and Data Gaps.

The right of people with disability to enjoyment of the highest attainable standard of health without discrimination on the basis of disability is enshrined in the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Among its obligations as a signatory to the CRPD, Australia is required to collect appropriate information, including statistical and research data, to inform development and implementation of policies to give effect to the Convention. In this commentary, we first describe how the International Classification of Functioning, Disability and Health (ICF) conceptual model of disability can be operationalised in statistical data collections, with a focus on how this is achieved in key Australian data sources such that people with disability can be identified as a population group. We then review existing statistical data on health and health service use for people with disability in Australia, highlighting data gaps and limitations. Finally, we outline priorities and considerations for improving data on health and access to health services for people with disability. As well as conceptual, practical, and ethical considerations, a key principle that must guide future disability data development is that people with disability and their representative organisations must be involved and participate fully in the development of disability data and statistics, and in their use.

Disability, Loneliness and Health in the UK: cross-sectional survey.

BACKGROUND: Research has suggested that exposure to loneliness can have a powerful detrimental impact on health, including mental health. Addressing socially determined health inequity requires understanding of the situation of marginalized or vulnerable groups. People with disability are increasingly being recognized as one such group. Little population-based research has addressed the association between loneliness and health among working age adults with and without disability. METHODS: Secondary analysis of data collected in waves 8 and 9 of Understanding Society, the UK's main annual household panel study. RESULTS: Rates of exposure to substantial loneliness were 25.4% (95%CI 23.5-27.3%) among adults with persistent disability (disability at W8 and W9), 15.4% (13.3-17.5%) among adults with disability onset (disability at W9 only), 12.3% (10.1-14.5%) among adults with disability offset (disability at W8 only), and 6.9% (6.5-7.3%) among adults with no disability. Exposure to loneliness was positively associated with the incidence (GHQ-12) and prevalence (SF-12 Mental) of mental health problems, but not the prevalence of physical health problems (SF-12 Physical). Disability status appeared to moderate the association between loneliness and health, with the difference between the persistent disability and no disability group increasing with exposure to greater levels of loneliness. CONCLUSION: Loneliness may be an important determinant of the poorer mental health of working age adults with disability in the UK. Exposure rates are significantly higher than among the non-disabled population. The strength of association between exposure to loneliness and poorer mental health is greater for people with persistent disability than people with no disability.

Area-Level Associations between Built Environment Characteristics and Disability Prevalence in Australia: An Ecological Analysis.

The importance of health-promoting neighborhoods has long been recognized, and characteristics of local built environments are among the social determinants of health. People with disability are more likely than other population groups to experience geographic mobility and cost restrictions, and to be reliant on 'opportunity structures' available locally. We conducted an ecological analysis to explore associations between area-level disability prevalence for people aged 15-64 years and area-level built environment characteristics in Australia's 21 largest cities. Overall, disability was more prevalent in areas with lower walkability and lower local availability of various neighborhood amenities such as public transport, healthier food options, public open space, physical activity and recreation destinations and health and mental health services. These patterns of lower liveability in areas of higher disability prevalence were observed in major cities but not in regional cities. Our findings suggest that geographically targeted interventions to improve access to health-enhancing neighborhood infrastructure could reduce disability-related inequalities in the social determinants of health.

The Disability and Wellbeing Monitoring Framework: data, data gaps, and policy implications.

OBJECTIVE: To develop a framework and indicators to monitor inequalities in health and the social determinants of health for Australians with disability. METHODS: The development drew on existing frameworks and input from people with lived experience of disability. RESULTS: The Disability and Wellbeing Monitoring Framework has 19 domains. Australian national data are available for 73% of the 128 indicators in these domains. Data gaps and limitations include the absence of national data and the absence of disability identifiers in some data sources. CONCLUSIONS: The framework will be used to report baseline data for people with and without disability and to monitor inequalities over time in Australia. It will also be used to locate policy priorities and focus efforts to address data gaps. Implications for public health: Inequality between people with and without disability in relation to health and the social determinants of health is a public health issue that warrants greater attention than it has received to date. The framework provides a robust, evidence-informed tool to address the health inequalities of people with disability, inform the development of effective policy and practice responses, and monitor change over time.

The wellbeing of working-age adults with and without disability in the UK: Associations with age, gender, ethnicity, partnership status, educational attainment and employment status.

BACKGROUND: Few population-based studies have examined the association between disability and personal wellbeing (PWB) among working-age adults. OBJECTIVE/HYPOTHESIS: To determine: (1) the magnitude of differences in wellbeing between working-age adults with and without disability in contemporary samples representative of the UK population; and (2) whether the size of any observed differences between people with and without disability is moderated by age, gender, ethnicity, partnership status, educational attainment or employment status. METHODS: Secondary analysis of data from three national cross-sectional surveys. RESULTS: In each survey, people with disability scored lower than people without disability on all four indicators of PWB. Adjusting for the main effects of potentially moderating variables reduced the effect size of disability on PWB by an average of 24%. Subsequently adjusting for the two-way interaction terms between disability and potentially moderating variables reduced the effect size of disability (main effect) on PWB by an additional average of 73%. PWB among people with disability was significantly lower for: (1) men; (2) younger people; (3) those who belong to the majority ethnic group (white British); (4) those without a partner; and (5) people with lower socio-economic position. CONCLUSIONS: Our findings indicate that demographic characteristics and exposure to specific social determinants of poor health play a major role in the negative association between disability and personal wellbeing. A more sophisticated understanding of how social determinants interact to produce inequities associated with identities such as disability, gender, race, sexuality, and class (intersectionality) can inform effective policy interventions.

In search of an integrative measure of functioning.

International trends towards people-centred, integrative care and support require any measurement of functioning and disability to meet multiple aims. The information requirements of two major Australian programs for disability and rehabilitation are outlined, and the findings of two searches for suitable measures of functioning and disability are analysed. Over 30 current measures of functioning were evaluated in each search. Neither search found a generic measure of functioning suitable for these multibillion dollar programs, relevant to a wide range of people with a variety of health conditions and functioning experiences, and capable of indicating support needs, associated costs, progress and outcomes. This unsuccessful outcome has implications internationally for policy-relevant information for disability, rehabilitation and related programs. The paper outlines the features of an Integrative Measure of Functioning (IMF) based on the concepts of functioning and environmental factors in the International Classification of Functioning, Disability and Health (ICF). An IMF would be applicable across a variety of health conditions, settings and purposes, ranging from individual assessment to public health. An IMF could deliver person-centred, policy-relevant information for a range of programs, promoting harmonised language and measurement and supporting international trends in human services and public health.

Fundamental questions before recording or measuring functioning and disability.

PURPOSE: This paper seeks to contribute to thoughtful description, recording and measurement of functioning, by discussing some fundamental questions to consider before starting, framed as: why, what, how and who. METHOD: Generic literature on measurement methods and the more specialised literature on application of the ICF over the last decade inform the consideration of these questions. The context of recording or measurement is examined, including the moral and legal framework of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) and the technical framework of the International Classification of Functioning, Disability and Health (ICF). RESULTS: Whatever the setting in which describing, recording or measuring is being undertaken - in policy development, service planning and management, clinical management or population health monitoring - determining the purpose is the key starting point. Purpose (why) frames the consideration of content (what), method (how) and source (who). Many generic measurement methods can be applied in the disability field, but there are challenges particular to the field. The perspectives of people with disabilities and "patients" require consideration, especially with the trend to person-centred care and the social justice principles emanating from the UNCRPD. CONCLUSIONS: Considering these basic questions is a pre-requisite to meaningful recording and measurement of functioning and disability. Future challenges include: incorporating environmental factors into measurement; setting thresholds on the disability spectrum; and combining the views of the person concerned with those of various professionals.