A comparison of efficacy of the key informant and community survey methods in the identification of childhood disability in Jamaica.

A comparison of the efficacy of the key informant and the community survey methods for identifying children with disability was carried out in the Jamaican component of an international epidemiological study of childhood disability. Approximately 130 key informants were exposed to a 2-day workshop giving information on signs of disability, aspects of the project, and available services. Questionnaires were given to enable the informants to refer children and they were reminded 6 months later. In the survey method, eight community workers completed a house-to-house survey of all families and administered the 10-question screen with probes on 5475 children, 2 to 9 years old. Seventeen referrals were made by the key informants; of these, two were found to have disabilities. Of the 821 children who tested positive on the 10-question screen in the house-to-house survey, 193 had disabilities. We concluded that the key informant method would not be a satisfactory way of identifying cases of childhood disability.     

A community-based evaluation of disability resources and inclusion practices in rural Botswana

BackgroundCommunity-based approaches to enhance the inclusion of persons with disabilities have proven effective; however, not much is known about cultural and contextual factors that influence the capacity of policy implementation and inclusion practices in rural Botswana.ObjectiveThe study evaluated local disability education and health resources in rural Botswana to develop a deeper understanding of cultural and contextual factors impacting inclusion practices.MethodResearchers used socio-demographic and qualitative research methods to conduct a comprehensive community-based needs assessment. Sampling techniques included maximum variation and snowball sampling. Thirty-two individuals participated in the study. Data were collected between June and August of 2019 through participant observation, in-depth interviews, and focus group discussions. An inductive thematic analysis was conducted by examining participants’ attitudes, perceptions, and experiences of community members with disabilities.ResultsFour primary themes emerged identifying factors that affect people living with disabilities in the rural community: (1) culture of vulnerability, (2) determinants of disability, (3) educational resources for persons with disabilities, and (4) effective systems integration. Findings suggested that while policies associated with disability at the government level are in place, disparities among rural communities’ hindered local responses to managing the needs of persons with disabilities.ConclusionsSocial, environmental, and physical barriers prevent the full implementation of policies that advocate for the rights of persons with disabilities in Botswana's rural settings. Increasing awareness of cultural and contextual factors may help community stakeholders facilitate inclusive practices in Botswana.     

Estimation of incidence of poliomyelitis by three survey methods in different regions of the United Republic of Cameroon

Surveys were conducted in one urban and two rural regions of the United Republic of Cameroon to estimate the annual incidence of paralytic poliomyelitis. Three different survey methods were used: a review of hospital and clinic registers, a school survey, and a house-to-house survey. The house-to-house survey identified the highest number of lame children and gave estimates of incidence of between 18.8 and 32.6 per 100 000 population in the three regions. The estimates of incidence obtained by the two other survey methods in the urban region did not differ significantly from that obtained by house-to-house survey but, in the rural regions, were significantly lower. It is concluded that house-to-house surveys are a sensitive method of identifying lame children in both urban and rural regions. School surveys and review of hospital and clinic registers, while equally sensitive in urban regions, are less sensitive in rural regions and may significantly underestimate the annual incidence of paralytic poliomyelitis. These limitations should be borne in mind when using the survey methods.     

Daten zu Behinderung und Teilhabe in Deutschland

As a basis for political decisions and to meet the statistical requirements of the CRPD, reliable data and reporting on the situation of people with disabilities are essential. Based on results of the preliminary study for a German participation survey, this article firstly defines data requirements and areas of participation. Secondly, data sources regarding participation and disability in Germany that were identified in a literature search are described in detail. Only sources providing population-based data that are collected on a regular basis and that could contribute to participation reporting were taken into account. This includes data from official statistics, (panel) studies or surveys, administrative data and reporting systems. Finally, we exemplarily present the main statistical findings of the 2012 European health and social integration survey (EHSIS), a survey that was specifically designed to investigate participation of persons with disabilities. In addition to the surveys identified in the preliminary study for a German participation survey that could be used or expanded for participation reporting, and the data sources used in the participation report published by the federal government in 2013, the research yielded further publicly available data sources with a high potential for a participation reporting system.     

Inclusion of people with disabilities in telephone health surveillance surveys

OBJECTIVES: Telephone survey data are widely used to describe population health, but some fear that people with disabilities cannot participate. We tested the hypothesis that a telephone survey would underrepresent adults with disabilities, and that the adults with disabilities who responded would report lower prevalences of sensory, mental, self-care, and multiple limitations than those observed in people with disabilities in the general population. METHODS: We compared characteristics of adults with disabilities identified by the 2001 Washington State Behavioral Risk Factor Surveillance Survey (BRFSS) to Washington adults with disabilities in the Census 2000 Supplementary Survey (C2SS), to 2 BRFSS Disability Supplements, and to the Washington State Population Survey. All except the C2SS are telephone surveys. RESULTS: Contrary to expectations, post hoc analyses of all telephone surveys found significantly higher prevalence of disability in the Washington adult population than did the C2SS. The hypothesis of more sensory, mental, and self-care limitation in telephone disability samples was supported in only 2 of 11 instances in which a disability sample was asked about 1 of these limitations. Findings were not explained by differences in disability definition or type of informant. CONCLUSIONS: These results suggest that population telephone surveys do not underrepresent adults with disabilities. The counterintuitive finding of their higher survey participation raises further questions.     

Estimating the additional cost of disability: beyond budget standards

Disabled people have long advocated for sufficient resources to live a life with the same rights and responsibilities as non-disabled people. Identifying the unique resource needs of disabled people relative to the population as a whole and understanding the source of these needs is critical for determining adequate levels of income support and for prioritising service provision. Previous attempts to identify the resources and costs associated with disability have tended to rely on surveys of current resource use. These approaches have been criticised as being inadequate for identifying the resources that would be required to achieve a similar standard of living to non-disabled people and for not using methods that are acceptable to and appropriate for the disabled community. The challenge is therefore to develop a methodology that accurately identifies these unique resource needs, uses an approach that is acceptable to the disabled community, enables all disabled people to participate, and distinguishes 'needs' from 'wants.' This paper describes and presents the rationale for a mixed methodology for identifying and prioritising the resource needs of disabled people. The project is a partnership effort between disabled researchers, a disability support organisation and academic researchers in New Zealand. The method integrates a social model of disability framework and an economic cost model using a budget standards approach to identify additional support, equipment, travel and time required to live an 'ordinary life' in the community. A survey is then used to validate the findings and identify information gaps and resource priorities of the community. Both the theoretical basis of the approach and the practical challenges of designing and implementing a methodology that is acceptable to the disabled community, service providers and funding agencies are discussed.     

Pilot study to develop a rapid assessment of tuberculosis care-seeking and adherence practices in rural Limpopo Province, South Africa

Studies of factors influencing tuberculosis (TB) care-seeking and treatment adherence in high TB/HIV co-burden African countries have typically surveyed urban patients' sociodemographic characteristics. To understand community perceptions and guide rapid assessment interviews, we interviewed key informants (nurses, tribal leaders, n = 9) and local researchers (n = 3) in poor, rural areas of South Africa. HIV-related stigma and misperceptions about TB causes and symptoms were cited as barriers. Key informants said older people preferred traditional healers; local researchers heard a preference for "western" care and suggested supporting clinic staff travel to remote villages with health education and diagnostic services. Key informants said not understanding the consequences of incomplete treatment and reluctance to relinquish disability grants decreased adherence. All reported that nonfamily DOTS supporters provided invaluable support. Rapid assessment should include drop-outs, re-treated, and co-infected patients and ask questions examining origins of misperceptions, stigma of testing, and pre-test messages to improve community perceptions about TB care-seeking and treatment adherence.     

Satisfaction,safety, and supports: Comparing people with disabilities’ insider experiences about participation in institutional and community living

BackgroundLegislation and court decisions in the United States mandate the right to least restrictive community living and participation for people with disabilities, yet little research has examined differences in participation across institutional and community settings, or over time in the community post-transition.ObjectiveAs part of a multi-site participatory action research project examining participation, we examined the differences in quality of life in institutional and community living environments among people with disabilities.MethodsWe conducted surveys with adults with disabilities between 18 and 65 years-old that transitioned from institutions to the community in the United States within the last five years. This paper reports on findings for a diverse sample of 150 participants.ResultsWe found significant differences between ratings of institutional and community experiences, with increased reports of satisfaction, personal safety, service access, and participation in community settings. We also found significant improvements in community integration and inclusion after transition to community living, although barriers to transportation and activity access often remained.ConclusionsThis study of insider experiences of previously institutionalized people with disabilities illuminates important understandings of community participation, integration, and quality of life for the disability community in the United States.     

Prevalence of disability among adolescents and adults in rural China

BackgroundDisability affects health status and quality of life; however, insufficient research has been done in developing countries using internationally accepted measurements.ObjectiveWe investigated disabilities, sociodemographics, health indicators, and health behaviors using a sample of rural residents in northern China. We reported disability prevalence by age for our study sample and for a sample of rural residents who participated in the 1999-2002 Colorado Disability Survey.MethodsFace-to-face interviews were conducted in 2008, and complete questionnaires were obtained from 2199 individuals 15 years old or older. The definition of disability was conceptually based on the International Classification of Functioning, Disability and Health.ResultsOf those who completed the survey, 154 (7.0%) reported having disabilities. The prevalence was 2.3% for limitations in activities of daily living (ADL) and 3.1% for limitations in instrumental activities of daily living (IADL). Significant differences in the disability prevalence were found across the categories of education, age, and marital status. Among individuals with disabilities, 54.6% rated their health status as poor or very poor compared to 13.4% of people without a disability. A strong association was seen between disability status and injury. A large proportion (79.9%) of persons with disabilities, as well as 82.2% of persons without disabilities, reported paying for their medical expenses out-of-pocket. The age pattern of disabilities (ADL and IADL) was similar to that seen in a rural Colorado population.ConclusionsMany rural Chinese individuals with disabilities report poor general health and may face further limitations in their daily activities and social participation without accessible and affordable health care.     

Development of an audio-computer assisted self-interview to investigate violence and health in the lives of adults with developmental disabilities

BackgroundAudio computer-assisted self-interviews (ACASIs) have safely and effectively obtained sensitive research data from the general public and have been recommended for use with people with disabilities. However, few studies have used ACASIs with people with disabilities and ACASIs have not been used to investigate the relationship between disability, interpersonal violence (IPV), and physical and psychological health among people with developmental disabilities (PWDD).ObjectiveWe developed an accessible ACASI specifically designed to allow PWDD to answer questions independently, while privately and securely collecting anonymous data related to their disability, IPV experiences, and physical and psychological health.MethodsWe used a safety protocol to apply community based participatory research (CBPR) principles and an iterative process to create, test, and administer a cross-sectional ACASI survey to 350 adults with developmental disabilities in urban and rural locales.ResultsMost participants completed the ACASI independently and reported that its accessibility features allowed them to do so. Most also agreed that the ACASI was easy to use, its questions were easy to understand, and that they would prefer using an ACASI to answer IPV and health-related questions rather than in a face-to-face interview. The majority agreed that health and safety were critical issues to address.ConclusionsACASI technology has the potential to maximize the independent and private participation of PWDD in research on sensitive topics. We recommend further exploration into accessibility options for ACASI technology, including hardware and Internet applications.     

Differences in social connectedness and perceived isolation among rural and urban adults with disabilities

BackgroundSocial isolation has been compared to smoking in terms of risk to public health. Some groups are at particularly high risk for these feelings, including people with disabilities and rural residents. Few studies have considered the potentially compounding effects of disability status and rural residency.ObjectiveTo evaluate how reported satisfaction with social participation and perceived isolation relate to the health of rural and urban people with disabilities, and to consider whether number of disabilities, living arrangement, and employment status were associated with differences in reported satisfaction with social participation and perceived isolation.MethodsThis observational, cross-sectional analysis utilized data from working-age adults with disabilities (n = 1246) collected by the Collaborative on Health Reform and Independent Living (CHRIL).ResultsThere were significant associations between reported health and measures of satisfaction with social participation and perceived isolation (all ps < .001). Increased number of disability issues, not being employed, and living with at least one other person were associated with reduced satisfaction with social participation (ps < .01), and number of disability issues and not being employed were associated with increased perceived isolation (ps < .01). Urban residents reported feeling more isolated (ps < .05) and there were multiple predictor x geographic residency (rural versus urban) interactions.ConclusionThese results underscore the importance of considering geography as a factor in understanding satisfaction with social participation and perceived isolation and how these factors relate to health in people with disabilities.     

Evolving views of disability and public health: the roles of advocacy and public health

Promoting health, quality of life, and participation of persons with disabilities is a relatively recent development in public health. Its brief history reflects three distinct public health perspectives toward disability-a traditional approach that focuses on preventing disability, a contemporary approach that regards disability as a minority group experiencing disparities relative to people without disabilities, and an emerging perspective where disability status is considered one of multiple determinants of health. The field of disability and health has been influenced by the interaction of disability advocacy with the public health process of surveillance, epidemiology research, and intervention. Advocacy draws on political and legal arguments to press for action on issues such as health care access, control of services, and choice of residence. Public health uses surveillance to document magnitude of problems; epidemiology to identify specific groups, develop measures, and apply rigorous research methods; and intervention to improve health behaviors and health outcomes. The field of disability and public health, however, has lagged in addressing the role of environmental factors in the disabling process, in moving to societal participation as an outcome, and in implementing population scale interventions.     

Differences in Obesity Rates Between People With and Without Disabilities and the Association of Disability and Obesity: A Nationwide Population Study in South Korea

Objectives

The objective of this study was to identify the differences in obesity rates among people with and without disabilities, and evaluate the relationship between obesity rates and the existence of disabilities or characteristics of disabilities.

Methods

Mass screening data from 2008 from the National Disability Registry and National Health Insurance (NHI) are used. For analysis, we classified physical disability into three subtypes: upper limb disability, lower limb disability, and spinal cord injury. For a control group, we extracted people without disabilities by each subtype. To adjust for the participation rate in the NHI mass screening, we calculated and adopted the weight stratified by sex, age, and grade of disability. Differences in obesity rates between people with and without disabilities were examined by a chi-squared test. In addition, the effect of the existence of disabilities and grade of disabilities on obesity was examined by multiple logistic regression analysis.

Results

People with disabilities were found to have a higher obesity rate than those without disabilities. The obesity rates were 35.2% and 35.0% (people with disabilities vs. without disabilities) in the upper limb disability, 44.5% and 34.8% in the lower limb disability, 43.4% and 34.6% in the spinal cord injury. The odds for existence of physical disability and grade of disability are higher than the non-disabilities.

Conclusions

These results show that people with physical disability have a higher vulnerability to obesity.     

Leadership/citizen participation: perceived impact of advocacy activities by people with physical disabilities on access to health care,attendant care and social services

Increasingly, the climate of shrinking health care resources will impact access to health care for the people most vulnerable-those with disabilities. This study looked at the perceived impact of leadership and participation by people with physical disabilities and at their ability to gain increased access to health care, attendant care and social services. Respondents were randomly selected from Canada and the United States, from a pool of participants with physical disabilities serving in leadership roles within disability organizations in either country. Responses from a mail-out survey questionnaire were tabulated using logistic regression procedures to identify the perceived impact of advocacy activity on improved access to health care, attendant care and social ser- vices. Findings suggest that those who participated in advocacy activities were significantly more likely to feel that their action improved access to health care resources, attendant care resources and social services. Advocates also perceived the impact of access for their family, local organizations, and at a regional/national level. This study highlights the value of consumer/citizen participation, and the vital role this action can play in collaboration with social work professionals for system changes, health resource planning and policy development.     

Routine identification of patients with disabilities in primary care: A mixed-methods study

BackgroundPeople with disabilities experience barriers to receiving healthcare and often have worse health outcomes, but data on disability is rarely routinely collected in a standardized way.ObjectiveThis study examined how patients responded to being asked about disabilities as part of a routine, self-administered sociodemographic survey.MethodsWe conducted a mixed-methods study in a multi-site primary care organization. We compared the characteristics of people who responded to a question about disabilities to those who did not respond using logistic regression. We also compared survey responses to data available in medical charts. In-depth interviews were conducted with a sample of patients following survey completion.ResultsOver 28 months, 15,221 patients were offered the survey and 14,247 (93.6%) responded to at least one question. Of these, 11,275 (79.1%) patients answered the question about disabilities. Older patients, patients who rented their home, and non-White patients were less likely to respond to the question. When comparing survey responses to data from medical charts we identified discrepancies. Patients interviewed reported they had difficulty judging what constituted a disability. Stigma related to mental illness and substance use led them to avoid disclosing those conditions.ConclusionsDirectly asking patients whether they have a disability may be challenging given confusion about what constitutes a disability and stigma associated with certain disabilities. Future research should examine whether asking about barriers faced in accessing health services could adequately identify patients with disabilities and also be used to identify tangible actions an organization could take to lower barriers to care.     

Awareness among community-dwelling elderly of assistive devices for mobility and self-care and attitudes towards their use

The researchers conducted a survey by personal interview of elderly people (75 +years) receiving home nursing (N= 117) in Belgium to investigate the extent of their awareness and perceptions of the existing supply of assistive devices for mobility and selfcare (ADs). A new scale has been developed to measure the possession and the awareness of ADs, the Assistive Devices Awareness Scale. The researchers identified important gaps regarding the awareness of ADs, despite their widespread usefulness and their commercial availability. Even persons with specific disabilities were not necessarily aware of the ADs available to assist with their particular problems. Nevertheless, the elderly persons presented positive attitudes regarding the possibility of using devices as a partial substitute for care and advocated participation in financing the purchase of ADs. Opinions regarding the effect of using ADs on feelings of loneliness differed quite extensively. Most people who were receiving home nursing already possessed ADs. These elderly people perceived mainly positive consequences from using the ADs they already possessed. Linear forward regression analysis revealed that for the elderly clients of home nursing services, the possession of devices is correlated with the extent to which there is a growing need for care, people are aware of the existing devices and people perceive the consequences of using ADs as positive. Implications for future research are discussed.     

Health Promotion for Individuals with Disabilities

Health promotion programs that are offered in the general community often present physical, attitudinal and knowledge barriers that limit participation by those with disabilities. These environmental barriers and the lack of information on how to overcome them make it difficult for individuals with disabilities to engage in health-promoting behaviors. This paper presents a brief overview of health promotion for individuals with disabilities in the areas of exercise, nutrition and health education, and describes a service delivery model that addresses the needs of this important subgroup. The primary emphasis of the model is to provide instructional guidance to those with disabilities in the supportive transitional setting that will assist them in overcoming environmental barriers to participation in their community (i.e. home or Wellness facility). The supportive transitional setting is used to empower people with disabilities to adopt healthier lifestyles and manage various secondary conditions related to their disability (e.g. fatigue, weakness, and pain). A sample program conducted in this setting is described.     

When work and satisfaction with life do not go hand in hand: Health barriers and personal resources in the participation of people with chronic physical disabilities

People with chronic physical disabilities participate less in both paid and voluntary work and are less satisfied with their lives than people without health problems. Governments and scientists have suggested that participation in employment is the main road to well-being. We analysed national survey data on the participation in work and satisfaction with life, comparing people with a chronic illness and a physical disability (n = 603) to people with a chronic illness but without a physical disability (n = 1199) and the general population (n = 6128) in the Netherlands. The results show that the relationship between happiness and work is different for people with a chronic illness and a physical disability, as compared to the other two populations. Fewer people with a chronic illness and disability were categorized as ‘satisfied people with work’ (i.e. participating in work and satisfied with their life), while most people belonged to a group of ‘satisfied people without work’ and, surprisingly, not to the expected group of ‘dissatisfied people without work’. In order to explain this exceptional distribution we modelled satisfied participation in work as an outcome of a balance between personal resources and barriers. By means of discriminant regression analysis, we identified the severity of motor disability as the main barrier, and education level and age, as the main resource factors that distinguish between ‘satisfied people with work’ and others among the group of people with a chronic illness and a physical disability.     

Impediments to community‐based care for people ageing with intellectual disability in rural New South Wales

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.     

New obstacles and widening gaps: A qualitative study of the effects of the COVID-19 pandemic on U.S. adults with disabilities

BackgroundPrior research has demonstrated that the needs of the disability community have not been met during public health emergencies. The COVID-19 pandemic has exacerbated existing inequities for many populations including people with disabilities, and data is needed to develop inclusive public health response policies.ObjectiveTo identify how COVID-19 has uniquely impacted the lives of adults with disabilities.Methods38 participants were recruited through disability advocacy groups and social media. Semi-structured virtual focus groups were conducted with adults (≥18 years) who self-identified as having a disability. Focus groups were conducted for each of six disability sub-groups: vision, hearing, mobility and physical, mental health, cognitive, intellectual, and developmental, and chronic illness. Using inductive coding, major themes were identified and compared across the disability sub-groups.ResultsThree major themes and thirteen sub-themes were identified from the focus groups. The three major themes comprised: new problems created by the pandemic, obstacles in daily life that were exacerbated by the pandemic, and broader changes to accessibility and disability identity. Sub-themes such as difficulty with COVID-19 testing and regular medical care were reported by participants of all disability sub-groups, while other sub-themes like direct care needs and medical rationing were reported by participants from a subset of the disability sub-groups.ConclusionsThese results indicate how the COVID-19 pandemic unequally impacts disabled people. The participants indicated that to fully address their needs, disability perspectives must be included in the public health pandemic response. As new research shows that COVID-19 can cause long-term disability, the urgency to ensure the disability community is part of public health policies will increase.