Gwynnyth Llewellyn

The University of Sydney · Faculty of Health Sciences

Background: Self-harm is a critical public health issue for adolescents/young adults. Aims: To estimate the prevalence of self-harm among adolescents with/without disabilities in the United Kingdom. Method: Secondary analysis of data collected at age 17 in the UK’s Millennium Cohort Study. Results: Prevalence of self-harm was significantly greater...

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...

Background Loneliness can have a detrimental impact on health, yet little is known about the association between disability and loneliness. Methods Secondary analysis of three waves of data collected between 2017 and 2020 by the UK’s annual household panel study, Understanding Society. Direct age-standardisation was used to compare the prevalence...

People with disability face heightened vulnerability during disasters due to functional limitations and inadequate support. This study explores disaster preparedness, capabilities, and support needs among Australians with disability. A cross-sectional survey was conducted, aligned with the Person-Centred Emergency Preparedness (P-CEP) framework: a...

Background Loneliness is a significant public health concern due to its detrimental impact on health and wellbeing. Despite people with disability reporting higher levels of loneliness than the general population, there has been little research into how this is affecting their health and wellbeing. In light of this, the aim of our study was to scop...

Population-based studies undertaken in high-income countries have indicated that children and adolescents with disabilities are more likely than their non-disabled peers to experience emotional difficulties such as anxiety and depression. Very little is known about the association between disability and emotional difficulties among children growing...

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...

Women with disability experience significantly more violence and abuse than their nondisabled peers. Efforts to implement, evaluate, and scale-up strategies to prevent violence against women are rapidly expanding, but we know less about "what works" to prevent violence against women with disability. While secondary and tertiary prevention aim to id...

Objective: This article reports on research undertaken to develop self-report disability questions for a patient registration form that may be implemented in general practices across Australia as part of a voluntary patient registration program. Methods: There were four research components: rapid review of approaches for capturing disability inf...

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...

There is a paucity of robust nationally representative data from low- and middle-income countries (LMICs) on the prevalence and risk factors associated with exposure of women with/without disability to either discrimination or violence. We undertook secondary analysis of data collected in Round 6 of UNICEF's Multiple Indicator Cluster Surveys (MICS...

Child marriage, which the UN’s Sustainable Development Goal seeks to eliminate by 2030, represents a violation of the human rights of children. These concerns are driven by the negative impact of child marriage on the health of children married in childhood and their children. Little is known about the association between child marriage and disabil...

Background Little is known about disability-related inequities in personal wellbeing (PWB) in low- and middle-income countries (LMICs). Method Secondary analysis of data collected in Round 6 of UNICEF’s Multiple Indicator Cluster Surveys (MICS) undertaken in 27 LMICs (n = 296,693 women, 66,557 men). Data were aggregated across countries by mixed e...

Background: We sought to (1) update estimates of the prevalence of significant cognitive delay (SCD) among nationally representative samples of young children overall, and in upper-middle, lower-middle and low-income countries; (2) investigate whether variation in prevalence between countries was systematically associated with national wealth and...

Actions to support identification of people with disability in the Voluntary Patient Registration scheme.

Employment is an important social determinant of health and wellbeing. People with disability experience labour market disadvantage and have low labour force participation rates, high unemployment rates, and poor work conditions. Environmental factors are crucial as facilitators of or barriers to participation for people with disability. Understand...

Background It is commonly stated that people with disabilities are at significantly greater risk of living in poverty than their non-disabled peers. However, most evidence supporting this assertion is drawn from studies in high-income countries and studies of adults. There is relatively little robust evidence on the association between poverty/weal...

Concern has been expressed about the extent to which people with disabilities may be particularly vulnerable to negative impacts of the 2020 COVID‐19 pandemic. However, to date little published research has attempted to characterise or quantify the risks faced by people with/without disabilities in relation to COVID‐19. We sought to compare the imp...

Background Very little is known about the prevalence of disability among Roma children. Objective To estimate the prevalence of disability and significant cognitive delay among Roma and non-Roma children aged from 2-17 years in four West Balkan countries. Methods Secondary analysis of data collected in Round 6 of UNICEF’s Multiple Indicators Clus...

Objectives To estimate levels of COVID-19 vaccine hesitancy among working-age adults with disabilities in the United Kingdom. Study design Cross-sectional survey. Methods Secondary analysis of data collected on a nationally representative sample of 10,114 respondents aged 16–64 years. Results The adjusted relative risk for hesitancy among respon...

Focus of Presentation People with disability experience inequality in relation to social determinants of health such as employment, education and housing. Under the UN Convention on the Rights of Persons with Disabilities, Australia must collect data to assess fulfilment of its Convention obligations and to identify and address barriers faced by pe...

Background Little is known about the exposure of youth with disability to cyber victimisation. Objective /Hypothesis: To estimate the prevalence of peer cyber and non-cyber victimisation in a nationally representative sample of 14-year-old adolescents with and without disability and to determine whether gender moderates the relationship between di...

Background While emerging evidence shows increased mortality from COVID-19 among people with disability, evidence regarding whether there are disability-related inequalities in health during the pandemic is lacking. Objective This study compares access to COVID-19 and non-COVID-19 related health care and mental health of people with and without di...

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 pop...

Background: The coronavirus disease 2019 (COVID-19) pandemic may have a greater impact on people with disabilities than non-disabled people. Our aim was to compare the short-term impact of the 2020 COVID-19 pandemic and first lockdown on the employment and financial security of working age adults with and without disabilities in the UK. Methods:...

In line with growing interest in subjective well-being (SWB) as a goal of public policy, a substantial research base examining the correlates, effects and determinants of adolescent SWB is beginning to develop. However, there is a dearth of data on the SWB of adolescents with disabilities. The limited available data suggest that adolescents with di...

COVID-19 has exacerbated pre-existing difficulties children and adults with disability face accessing quality health care. Some people with disability are at greater risk of contracting COVID-19 because they require support for personal care and are unable to physically distance, e.g. those living in congregate settings. Additionally, some people w...

Background Little is known about the extent to which children and adolescents with disabilities are exposed to child labour. Objective To estimate prevalence rates and adjusted rate ratios of exposure to child labour among children and adolescents with/without disability in middle‐ and low‐income countries and to determine whether these rates vary...

Background Children with disabilities in high-income countries are more likely than their peers to be exposed to violence. To date, only two studies have reported nationally robust data on the association between child disabilities and exposure to violent parental discipline. Objective To estimate prevalence rates and adjusted rate ratios of expos...

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 l...

This article examines findings from a qualitative study exploring the experiences of young adults with disabilities regarding their perceptions of interpersonal discrimination on public transport in two Australian states. Interpersonal discrimination by members of the public included contests for accessible seating, receiving unwanted physical assi...

Objectives We sought to estimate risk of poor self-rated health (SRH) following exposure to disability-related and other forms of overt discrimination in a cohort of working age adults. Study design The study design is a population-based cohort survey. Methods Secondary analysis of data collected in Waves 1 and 2 of the UK's Life Opportunities Su...

Background Loneliness is significantly related to health and wellbeing. However, there is little information on the prevalence of loneliness among people with disability or the association between disability, loneliness and wellbeing. Objective/Hypothesis For a nationally representative sample of adults (age 16-64) with/without disability, to exam...

Background Research on intellectual disability has been criticized for primarily addressing the situation of people in high-income countries. Objective /Hypothesis. To determine whether MICS6 data on ‘functional difficulty associated with learning’ (FDAL) in low- and middle-income countries could be used as a proxy indicator for intellectual disab...

The Sendai Framework for Disaster Risk Reduction (Sendai Framework) sparked a global shift towards requiring active and meaningful participation of persons with disabilities in Disaster Risk Reduction (DRR). The aim of this paper was to examine the extent of inclusion of disability and representation of persons with disabilities in Indonesian natio...

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. Australia...

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...

There is increasing recognition of the value of coproduction and inclusion of people with disability in research, and a growing literature on inclusive methods, particularly involving people with intellectual disability. This article critically examines the ways leadership by, and collaboration and consultation with, people with disability informed...

Background: Undernutrition in early childhood is associated with a range of negative outcomes across the lifespan. Little is known about the prevalence of exposure to undernutrition among young children with significant cognitive delay. Method: Secondary analysis of data collected on 161 188 three- and four-year-old children in 47 low-income and...

Background: Pregnancy in women with intellectual disability (ID) is increasingly recognised, along with their increased likelihood of experiencing risk factors for adverse pregnancy and infant outcomes. Objectives: We aimed to compare risks of socio-demographic, pregnancy and infant outcomes of women with ID to other women. Methods: All mother...

Background: Exposure to discrimination can have a negative impact on health. There is little robust evidence on the prevalence of exposure of people with disabilities to discrimination, the sources and nature of discrimination they face, and the personal and contextual factors associated with increased risk of exposure. Methods: Secondary analys...

To examine geographic variation in labour force participation rate (LFPR) of working‐age people with disability in Australia and associated factors. This study uses Australian Census 2016 data at Statistical Area Level 2 (SA2) and engages multiple linear regression to explore the relationship between the dependent variable,= LFPR of people with dis...

Background Recent international meta-analyses show that children and adults with disabilities are more likely to experience interpersonal violence than those without disabilities. People with disabilities are a heterogeneous group, and further work is required to determine the variations in the experience of violence by impairment type. It is also...

Background: Little is known about the prevalence of emotional difficulties and self-harm among adolescents with a disability. Objective: Our aims were: (1) to estimate the prevalence of emotional difficulties and self-harm among British adolescents with and without disability; (2) to determine whether prevalence varies by gender, severity of dis...

People with disabilities and their representative organisations are recognised by the Sendai Framework for Disaster Risk Reduction as key contributing stakeholders in disaster resilience-building at the community level. What might be the role and contribution of disabled people’s organisations (DPOs) in realising the right of people with disabiliti...

Understanding the needs of children and young people with disability, and the likelihood of abuse they experience, is not a trivial problem. In Australia, there is now hard evidence that children and young people with disability are three times more likely to be maltreated than their non-disabled peers.

School satisfaction is a critical aspect of well-being for every child and adolescent. Yet studies have rarely investigated whether school satisfaction varies depending upon participant characteristics and school-related social factors. Here we investigated whether disability and gender moderate adolescents’ self-report of school satisfaction. We a...

Background: We sought to: (i) estimate the prevalence of significant cognitive delay (a marked delay in the development of general cognitive functioning) among nationally representative samples of young children in middle- and low-income countries; (ii) estimate the total number of children under 5 years of age with significant cognitive delay liv...

Objective: Among working-age Australian adults with a disability, we assess the association between disability-based discrimination and both overall health and psychological distress. Methods: Using data from the 2015 Australian Bureau of Statistics Survey of Disability, Ageing and Carers we estimated the proportion of working-age women and men...

Exposure to violence is damaging to peoples’ personal health and wellbeing and can limit their social, civic and economic participation in society. We know that people with disabilities are more likely to witness and be the victims of violence, including violent criminal acts, than their non-disabled peers. Unfortunately there is no system in place...

The Royal Commission into Institutional Responses to Child Sexual Abuse recognised early on the likely particular vulnerabilities of children with disability and the institutional contexts which they encounter. This commissioned discussion paper provides a reasoned analysis of the historical, social and policy context surrounding children with disa...

Background: Children of parents with intellectual impairment are thought to be at risk for poor social-emotional well-being. This study investigated the relationship between maternal intellectual impairment and poor child social-emotional well-being. Method: Secondary analysis of data from waves 2-4 of the Millennium Cohort Study (UK). Social-em...

Background Parenting by people with intellectual disability is attracting increasing attention, and policymakers and service providers require empirical evidence to develop sound policy and service responses. The purpose of the study was to identify prevalence and demographic data on parents with ID in Australia compared with parents with other dis...

Purpose: This paper describes a three-year research project leading to the development of the CBR Monitoring Manual and Menu (MM&M). The MM&M is a practical toolkit that meets the needs of CBR managers and stakeholders, and is consistent with the philosophy of CBR and communitybased disability-inclusive development. It is designed to produce meanin...

Increasing attention is being paid to the impact of discrimination on the health of oppressed groups. In this chapter, we review the impact of the personal experience of discrimination on the health and well-being of people with intellectual disabilities. We begin by addressing conceptual and methodological issues facing research on links between d...

Objectives: There are no population-based estimates of the prevalence of interpersonal violence among people with disabilities in Australia. The project aimed to: 1) estimate the prevalence of violence for men and women according to disability status; 2) compare the risk of violence among women and men with disabilities to their same-sex non-disab...

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...

A parent's response to a young person's mental illness can influence their recovery and wellbeing. Many parents devote considerable time and energy to supporting a young person experiencing mental illness and engage in numerous different practices to do so. Yet little is known about why parents use particular practices. This article explores this q...

Background News media frames public perceptions. As such, news media becomes a useful source of analysis to understand the presence (or otherwise) of people with disabilities, particularly intellectual disabilities, within parenting discourses in Australia.Method Using Critical Discourse Analysis, this article examines major Australian newspapers o...

Background In the face of limited research addressing the impact of mental health on parents with intellectual disability and their children, this article explores associations between socioeconomic disadvantage, social support, parent mental health, parenting practices, and child well-being for families where a parent has intellectual disability.M...

Parents of young people with mental illness use a variety of strategies to try to positively influence young people’s mental health-related behaviours. Evidence suggests that these parents can influence young people’s well-being and mental health trajectories. However little is known about how young people perceive and are affected by the strategie...

Background Very few population-based studies have investigated the association between the onset of health conditions/impairments associated with disability and subsequent well-being. Objective/Hypothesis: To examine the association between the onset of disability and four indicators of well-being (full-time engagement in employment or education, f...

Background The concept of disability is now understood as a result of the interaction between the individual, features related to impairment, and the physical and social environment. It is important to understand these environmental influences and how they affect social participation. The purpose of this study is to describe the social participatio...

Employment is a crucial avenue through which young people with disability can experience material wellbeing and social participation. While the low employment rates of young people with disability are well established, little is known about the stability of employment status - that is, the degree to which individuals remain in or move in and out of...

This document contains a ‘Menu’ of information and data items which can be used for monitoring CBR and other disability-inclusive community development programs with similar broad aims. The accompanying Manual explains the purpose and development of the Menu, and its links to the CBR Guidelines and the UN Convention on the Rights of Persons with Di...

The Monitoring Manual and Menu (MM&M) provides information on how to develop or improve monitoring, so that programs can collect the information they need. It has been designed for use by community based rehabilitation (CBR) programs and other community based disability inclusive programs. The development process involved collaboration with people...

The Monitoring Manual and Menu (MM&M) provide information on how to develop or improve monitoring, so that programs can collect the information they need. It has been designed for use by community-based rehabilitation (CBR) programs and other community based disability inclusive programs. This document contains a ‘Menu’ of information and data item...

This selective, critical literature review synthesizes recent research exploring disability-based disparities in the subjective well-being and living conditions of youth in high-income countries. Compared with their non-disabled peers, disabled youth report lower levels of happiness, lower global life satisfaction and higher rates of suicidal ideat...

To explore relationships between family quality of life, day occupations and activities of daily living (ADL) of young persons with Down syndrome. Data were collected from 150 families with a young person with Down syndrome aged 16-30 years participating in the Down syndrome "Needs Opinions Wishes" database. Data described the young person's charac...

According to Carol Thomas, individuals with impairment are subjected to disablism. They are disadvantaged in material areas of life and also in the non-material domain of psycho-emotional well-being, by the impact of negative ideas, images and stereotypes about impairment and disability. Families with children with impairment have also been describ...

Collaboration between service providers, DPOs and university researchers is an essential element in starting work on overcoming the lack of integrative cross-sectoral disability measures that are suitable for use in national programmes, which adhere to the key international policies of the CRPD and the standard information frameworks of the ICF. Th...

Purpose: To examine the relevance of the International Classification of Functioning, Disability and Health (ICF) to CBR monitoring and evaluation by investigating the relationship between the ICF and information in published CBR monitoring and evaluation reports. Method: A three-stage literature search and analysis method was employed. Studies...

Purpose: Adults with moderate or severe cerebral palsy often require significant lifetime support from family and formal services. The aim of this study was to use a life course approach to explore how previous life experiences impact on the later life relationships of people with moderate to severe cerebral palsy aged 40 years and over and their...

Research shows that people with mental illness are not enjoying the same life choices and opportunities as other Australians. As a signatory to the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), Australia is obliged to monitor and report on the level and nature of disadvantage faced by Australians with disabilities....

Background: The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school environment to an emerging adult life that may be characterised by a wide variation in adoption of adult roles related to employment, independent living, friendships, and day activities...

Purpose: To identify and analyse tools and methods that have been reported in the literature for the monitoring and evaluation of community-based rehabilitation (CBR) programmes. Method: A literature review and descriptive analysis were carried out to scope CBR monitoring and evaluation methods and tools. A search was conducted using PubMed and...

AimTo investigate the relationship between functioning and post-school day occupation for young adults with Down syndrome. Methods Families of young people with Down syndrome (n = 269) aged 15-30 years in 2009 were recruited from the population-based Down syndrome Needs Opinion Wishes' database in Western Australia. Questionnaires were mailed to pa...

Biological factors and/or the mothers' social-environmental situation may be responsible for the much higher relative risk for pregnant intellectually disabled women and their newborns reported in articles by Höglund et al. in this issue. This population has increased exposure to key social determinants of health such as poverty and social exclusio...

Objective: Human ‘functioning’ is about how people live on a day-to-day basis. This paper sets out the case for adopting a common language about functioning that would improve population health information and information sharing across health and community service systems. Approach: Modern health systems recognise the importance of human functioni...

The aim of this paper was to describe the meaning of wellbeing for children and youth with disabilities from their perspective. Twenty children and young people with a range of disabilities including, cerebral palsy, autism, Aspergers syndrome, Down syndrome, mild to moderate intellectual disability and vision impairment, participated in five focus...

Despite the frequency with which mothers with intellectual disability have their children removed, little theoretical or empirical work has understood the mothers' perspectives on this. A few studies have reported mothers' feelings of grief and loss and their sense of powerlessness in the child protection system. This qualitative study explores the...

To determine the extent to which the lower well-being of young Australians with disabilities could be accounted for by increased rates of exposure to adversity and reduced access to personal, economic, social and community resources. Secondary analysis of data extracted from Waves 1 (2001) to 8 (2008) of the annual longitudinal survey of Household...

Children of parents with intellectual disability are assumed to be at risk of poor outcomes but a comprehensive review of the literature has not previously been undertaken. A database and reference search from March 2010 to March 2011 resulted in 26 studies for review. Two groups of studies were identified. The first investigated an association bet...

A life-course methodology was used to explore the relationship between four adults with moderate/severe cerebral palsy with complex communication needs who used AAC, and six of their non-disabled siblings. In-depth interview data were analyzed using a constructivist grounded-theory approach. Elder's life-course paradigm illuminated the importance o...

Many parents with intellectual disability experience living conditions associated with risk for children and parents. This study used structural equation modeling to test a theoretical model of the relationships among parent, child, family, and contextual variables in 120 Australian families where a parent had an intellectual disability. Findings r...