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The prevalence of disability among children: paradigms and estimates.

Every examination of disability among children must first grapple with definition of disability. The challenges to identifying disability among children involve not only determining the appropriate paradigm for defining disability, but also applying that paradigm to children in a meaningful way. This discussion of the prevalence of disability among children starts by examining the various paradigms utilized to identify disability and how they are interpreted when applied to children. Estimates of the prevalence of childhood disability, under different definitions of disability are presented. The goal of the discussion is to illustrate the sensitivity of the estimates of disability prevalence to the particular definition and data set used. Finally, the potential influence of the choice of paradigm on further measurement and service delivery is outlined.

Activities of Daily Living↗

Paid employment of mothers and fathers of an adult child with multiple disabilities.

Paid employment is increasingly undertaken by mothers as their children age, with the majority of women being in employment by the time their offspring are adult. Opportunities to engage in employment appear to be reduced for mothers of children with disabilities; however, little is known about the employment of mothers or fathers of adults with disabilities. Data were collected regarding the employment decisions of parents of a young adult with multiple disabilities and contrasted with those of parents whose children were all developing normally. Twenty-five mothers and 12 fathers of a young adult with multiple disabilities were interviewed, as were 25 comparison mothers and 19 comparison fathers. Data collected included hours of work, reasons for employment status, attitudes towards work and child care, and psychological well-being. Clear differences were found between the two groups. Mothers and fathers of a child with multiple disabilities showed different engagement patterns with the paid workforce from comparison parents. Hours of work for fathers of a young adult with multiple disabilities showed a bi-modal distribution, with some fathers working fewer hours than usual and others working very long hours. For mothers in both groups, the number of hours in paid employment was negatively associated with reports of psychological problems. Increased attention needs to be given to the employment opportunities of parents of children with disabilities since employment appears to play a protective role for mothers, in particular. Services provided to adults with disabilities will need to change if parents are to have the same life chances as parents without adult offspring with a disability.

Adolescent↗

Disclosure of developmental disability: a study of paediatricians' practices.

OBJECTIVE: To investigate paediatricians' practices in disclosure of disability and the influences on their practices, including attitude to people with disabilities. METHODOLOGY: Interviews were conducted with 26 paediatricians regarding their disclosure practices and their experience, training, contact with children with significant disabilities and influences on practices. Anonymous self-report questionnaires to the same group of practitioners relating to attitude to disability were also employed. RESULTS: Paediatricians' practices in the disclosure process scored relatively low on an index based upon recommended practices. No significant relationships were found between index scores and the experience or training of the paediatrician or the amount of contact of the paediatrician with children with disabilities. However, more experienced paediatricians were found to be more likely to mention the practice of informing both parents together and the presence of a support person at the time of disclosure. Paediatricians having more contact with children with disabilities were more likely to mention that they would disclose disability in a child as soon as possible. The major modifying influences on disclosure practices were reported to be the intelligence of the parents and their emotional state of at the time of disclosure. Time was the most frequently reported constraint upon disclosure practices. CONCLUSIONS: The low 'disclosure practice index' scores in this study are not necessarily an indication that practices are poor, as there are challenges to the validity of the advocated practices. There were few significant associations found between the practices of paediatricians in disclosure and their experience, training, contact with children with disabilities and attitude to people with disabilities.

Australia↗

Measuring disability with parsimony: evidence for the utility of a single item.

PURPOSE: To provide evidence for the utility of a single item measure designed to quantify disability in the past 30 days. METHOD: Australian data from studies comprising a community-dwelling elderly sample (N = 328) and a sample of chronic osteoarthritis (OA) patients (N = 119) are reported. Degree of disability was classified as 0-30 days, 0 vs. 1 or more days, and 0-9 vs. 10 or more days. Associations between disability and a range of demographic, health-related, and psychological variables were assessed. RESULTS: Participants with OA reported a significantly higher level of disability than participants from the community sample regardless of how disability was classified. Modest levels of association were noted between the number of disability days (0-30) and both health and psychological indices in both samples. The three alternative classifications of disability made little difference to the significance of associations. On balance, the comparison of 0-9 vs. 10 or more days appeared the more predictive classification of disability. CONCLUSIONS: The performance of the single item measure of disability was generally very satisfactory. Future investigations into the clinical application of the item across a range of patient groups are encouraged.

Activities of Daily Living↗

Prevalence and impact of disability in north-western Ethiopia.

PURPOSE: To assess the prevalence and impact of disability in one urban and three rural areas in north-western Ethiopia. METHODS: The study design is cross-sectional and quantitative. Data was collected by using pretested and standardized structured questionnaires containing socio-demographic characteristics, type of disability, functional, and social dysfunction. RESULTS: A total of 932 individuals with disability were found out of a total of 24,453 individuals giving the overall crude disability rate for the three towns as 3.8%. Disability in the lower locomotor was the most frequently reported type - 442 (47.0%) - followed by blindness 269 (28.6%), upper motor 152 (16.1%), mental retardation 97 (10.3%) and hearing loss 78 (8.3%) respectively. The major self-care problem experienced by the disabled is toileting in 292 (31.1%) cases, bathing in 248 (26.4%) and dressing 157 (16.7%). Other problems experienced by the respondents are parents' negative attitudes towards the disabled, evidenced by hiding them. This was observed in 340 (36.2%) cases. No care was provided by caregivers in 221 (23.6%) cases. CONCLUSION: The majority of disabled people have problems with activities of daily life especially toileting, bathing and dressing. Interventions to alleviate the problems of the disabled should be designed and implemented.

Activities of Daily Living↗

Measuring disability with parsimony.

PRIMARY OBJECTIVE: Health surveys, especially those for older persons, include numerous detailed items about disability. There has been little effort to develop a global disability item, that is, one question that covers the concept of disability briefly but well. This article discusses how parsimony can be achieved through a single item, or less desirably by reductions of detailed items. MAIN OUTCOME AND RESULTS: Results of three analyses on the issue of compact disability indicators, using public-use data sets (AHEAD, HRS, BRFSS), are presented. The analyses study relationships of global disability to both detailed disability items and global health. Overall, the results show that a global disability item has good coverage of specific disabilities and is distinct from self-rated health. CONCLUSIONS: Routine inclusion of a global disability item in surveys is recommended, and specific suggestions are made to aid its design.

Activities of Daily Living↗

Contribution of developmental disabilities to childhood mortality in the United States: a multiple-cause-of-death analysis.

Although developmental disabilities are among the major chronic health problems affecting children in the United States, the contribution of developmental disabilities to childhood mortality is unknown. To investigate the magnitude of this contribution, multiple cause-of-death data were examined for US children, aged 1-19 years, for 1980 and 1983-1989. The following conditions were included as developmental disabilities: autism, attention deficit disorder, learning disorders, mental retardation, cerebral palsy, epilepsy, muscular dystrophy, blindness and deafness. Based on underlying cause only, it was found that developmental disabilities were the fifth leading cause of nontraumatic death for children between 1 and 14 years of age and the third leading cause of non-traumatic death for children between 15 and 19 years. When a multiple cause approach was used to define developmental disability-related deaths (i.e. when contributing as well as underlying cause was considered), the number of such deaths nearly doubled. On the basis of both underlying- and multiple-cause analyses, cerebral palsy was the developmental disability most frequently cited as a cause of death. Mental retardation ranked second according to the multiple-cause approach but only fourth according to the underlying-cause approach. The least frequent causes of death (autism, attention deficit disorder, learning disorders, blindness, and deafness) were the ones most likely to be coded as contributing rather than underlying causes. Developmental disability-related mortality rates were highest among children aged 1-4 and 15-19 years, highest among blacks and lowest among racial groups other than blacks and whites, and higher among males than females. Although results of multiple-cause-of-death analyses more accurately reflect the proportion of deaths related to developmental disabilities, even this approach may underestimate the degree to which mortality is associated with a developmental disability.

Adolescent↗

Functional disability in elderly Nigerians: Results from the Ibadan Study of Aging.

Functional disability is a common reason for loss of independence and need for informal care by elderly persons. There is little information on the profile of disability and the level of unmet need for care in elderly persons living in sub-Saharan Africa. Using a multistage clustered sampling of households conducted in the Yoruba-speaking area of Nigeria (representing 22% of the national population), persons aged 65 and older (N = 2,152) were assessed for disability in activities of daily living and instrumental activities of daily living. Respondents were assessed for self-reports of physical health, for major depressive disorder, and for availability of informal care. The prevalence of any functional disability (defined as inability to independently perform any function) was 9.2% (standard error 0.6). In logistic regression analysis, high risks of disability were associated with female sex, older age, and urban dwelling. Risks were also high for persons with chronic pain, those with poor self-reported overall health, and those with evidence of undernutrition. Disabled persons had poorer quality of life and were more likely to suffer from major depressive disorder; 19.8% of disabled elderly persons lacked any informal care, and this unmet need for care increased the likelihood of having depression. The findings suggest a high burden of unmet need for care in a large section of disabled elderly persons in this African community undergoing demographic and social changes. Social factors relating to urbanization and poverty may be associated with the occurrence of disability and inability to access informal care.

Activities of Daily Living↗

Doctors and patients don't agree: cross sectional study of patients' and doctors' perceptions and assessments of disability in multiple sclerosis.

OBJECTIVES: To compare the judgments of clinicians on which domains of health in the short form questionnaire (SF-36) would be most important to patients with multiple sclerosis with the opinions of patients themselves; to compare assessment of physical disability in multiple sclerosis by a clinician using Kurtzke's expanded disability status scale and a non-clinically qualified assistant using the Office of Population Census and Surveys' (OPCS) disability scale with self assessment of disability and other domains of health related quality of life by patients using the SF-36 and the EuroQol questionnaire; and to compare the scores of patients for each domain of the SF-36 with control data matched for age and sex. DESIGN: Cross sectional study. SETTING: Clinical department of neurology, Edinburgh. SUBJECTS: 42 consecutive patients with multiple sclerosis attending a neurology outpatient clinic for review or a neurology ward for rehabilitation. MAIN OUTCOME MEASURES: Scores on the SF-36; EuroQol; Kurtzke's expanded disability status scale; the OPCS disability scale. RESULTS: Patients and clinicians disagreed on which domains of health status were most important (chi 2 = 21, df = 7, P = 0.003). Patients' assessment of their physical disability using the physical functioning domain of the SF-36 was highly correlated with the clinicians' assessment (r = -0.87, P < 0.001) and the non-clinical assessment (r = -0.90, P < 0.001). However, none of the measures of physical disability correlated with overall health related quality of life measured with EuroQol, Quality of life correlated with vitality, general health, and mental health in the SF-36, each of which patients rated as more important than clinicians and for each of which patients scored lower than the controls. CONCLUSIONS: Patients with multiple sclerosis and possibly those with other chronic diseases are less concerned than their clinicians about physical disability in their illness. Clinical trials in multiple sclerosis should assess the effect of treatment on the other elements of health status that patients consider important, which are also affected by the disease process, are more closely related to overall health related quality of life, and may well be adversely affected by side effects of treatment.

Adult↗

The psychosocial versus material hypothesis to explain observed inequality in disability among older adults: data from the West of Scotland Twenty-07 Study.

OBJECTIVES: The possible mechanisms for explaining health inequality are subject to debate. This study considers the roles of psychosocial and material mechanisms in observed inequalities in disability among older people. DESIGN: Cross-sectional analysis of cohort study. PARTICIPANTS: 723 respondents aged 63 years from the West of Scotland Twenty-07 Study. MAIN OUTCOME MEASURE: The Office of Population Census and Surveys Multidimensional Disability Severity Score. Respondents were dichotomised to the highest scoring tertile, and compared with the lowest and mid-tertiles combined. EXPLANATORY MEASURES: Socioeconomic position across adulthood was measured in three ways. Respondents reported perceptions of their own financial position (perceived financial hardship) across four decades of adult life. Data on possession of several indicators of material wealth (eg, ownership of television and washing machine; material conditions) during the same periods were also ascertained. Standard occupational classification was also recorded, based on longest held occupation. The relationship between the measures of socioeconomic position and disability was examined using logistic regression, adjusting for sex, morbidity and lifestyle factors. RESULTS: Perceived financial hardship and material conditions in earlier decades of life were found to be associated with reported disability. However, in the fully adjusted model, there was stronger evidence for material conditions as a predictor of disability: across four decades they remained an independent risk factor for disability after adjustment for sex, morbidity, lifestyle factors and perceived financial hardship. Those in the most deprived material conditions group had 2 1/2 times the odds of reporting severe disability than those in the reference group. After adjustment, evidence for an association between perceived financial hardship and reported disability was not convincing. CONCLUSION: The data provide evidence to support the "material" explanation for observed inequalities in reported disability among older people.

Comorbidity↗

Disability, identity and the "expressivist objection".

The practice of prenatal screening for disability is sometimes objected to because of the hurt and offence such practices may cause to people currently living with disabilities. This objection is commonly termed "the expressivist objection". In response to the objection it is standardly claimed that disabilities are analogous to illnesses. And just as it would be implausible to suppose reduction of the incidence of illnesses such as flu sends a negative message to ill people, so it is not plausible to suppose prevention of disability sends a negative message to disabled people. The expressivist objection hinges, however, upon a view of the relationship between disability and self identity which sees disability as part of the identity of the disabled person, in a way in which illnesses such as flu cannot be. This possibility is generally not considered in critiques of the expressivist objection. In this paper, an "identity claim" to the effect that disabilities can be identity constituting is accepted and the force of the expressivist argument is reconsidered in the light of its acceptance. It is concluded that even when such an identity claim is accepted, the expressivist objection is still not morally compelling.

Disability Evaluation↗

Connecting impairment, disability, and handicap in immune mediated polyneuropathies.

BACKGROUND: In the World Health Organisation (WHO) International Classification of Impairments, Disabilities, and Handicaps (ICIDH), it is suggested that various levels of outcome are associated with one another. However, the ICIDH has been criticised on the grounds that it only represents a general, non-specific relation between its entities. OBJECTIVE: To examine the significance of the ICIDH in immune mediated polyneuropathies. METHODS: Four impairment measures (fatigue severity scale, MRC sum score, "INCAT" sensory sum score, grip strength with the Vigorimeter), five disability scales (nine hole peg test, 10 metres walking test, an overall disability sum score (ODSS), Hughes functional grading scale, Rankin scale), and a handicap scale (Rotterdam nine items handicap scale (RIHS9)) were assessed in 113 clinically stable patients (83 with Guillain-Barré syndrome, 22 with chronic inflammatory demyelinating polyneuropathy, eight with a gammopathy related polyneuropathy). Regression analyses with backward and forward stepwise strategies were undertaken to determine the correlation between the various levels of outcome (impairment on disability, impairment on handicap, disability leading to handicap, and impairment plus disability on handicap). RESULTS: Impairment measures explained a substantial part of disability (R(2) = 0.64) and about half of the variance in handicap (R(2) = 0.52). Disability measures showed a stronger association with handicap (R(2) = 0.76). Combining impairment and disability scales accounted for 77% of the variance in handicap (RIHS9) scores. CONCLUSIONS: In contrast to some suggestions, support for the ICIDH model is found in the current study because significant associations were shown between its various levels in patients with immune mediated polyneuropathies. Further studies are required to examine other possible contributors to deficits in daily life and social functioning in these conditions.

Adolescent↗

Psychiatric disability among tortured Bhutanese refugees in Nepal.

OBJECTIVE: Most refugees live in low-income countries. There is a lack of data on psychiatric disability among such refugees. The authors compared psychiatric disability in tortured and nontortured Bhutanese refugees living in Nepal and examined factors associated with psychiatric disability among the tortured refugees. METHOD: A cross-sectional survey was conducted among 418 tortured and 392 nontortured Bhutanese refugees, matched for age and gender. The Composite International Diagnostic Interview, version 2.1, and the World Health Organization Short Disability Assessment Schedule were used to measure ICD-10 psychiatric disorders and disability, respectively. RESULTS: Approximately one in five tortured and nontortured Bhutanese refugees were found to be disabled. Posttraumatic stress disorder, specific phobia, and present physical disease were identified as factors associated with disability among the tortured refugees. On the other hand, present physical disease, greater age, and generalized anxiety disorder were associated with disability among the nontortured group. CONCLUSIONS: These findings show that the tortured and nontortured refugees were equally likely to be disabled. Different sets of predictors were identified among tortured and nontortured refugees, indicating the need for comprehensive psychiatric assessment of both tortured and nontortured refugees in clinical practice.

Adult↗

Ethical analysis of the concept of disability.

The concept of disability from an ethical viewpoint was examined. Whether disability results from the way society is built and the way ideas and judgments considering disability are established in a communal interaction was discussed (i.e., is disability socially created and constructed?). Although views on disability emphasizing its social nature are basically sound, they are also insufficient because they fail to consider the normative dimension attached to the concept of disability. The core of the concept of disability is ethical, which is why a moral philosophical examination of the concept is needed. Three possible ethical theories of disability (universal, objective, subjectivist, and communitarian) are briefly presented and discussed and a preliminary outline of a basis for a sound ethical model of disability presented.

Child↗

[An approach to indirect costs of disability in Colombia].

OBJECTIVES: This document studies the relationships between economic policy and disability, representing an attempt at providing a theoretical analysis for economic policy of disability in Colombia. METHODS: The absolute figures and percentages of distribution of disability in the Colombian population from 1981 to 2003, obtained from 3 official sources, were used. The following variables were selected: age, education, employment, socio-economic level, income and dependence. Several hypotheses were formulated and contrasted with frequency analysis and the Chi-square test to estimate differences between groups. RESULTS: The analysis demonstrated that vulnerability to disability is different according to: 1. Sex, with a greater impact on males; 2. Age: greater impact for older age groups and, in the last 3 years, greatest impact in the 25 to 55 year age group under potential risk of disability; 3: Region: greater vulnerability in rural areas and 4. Socio-economic level: persons with disabling conditions belong to the lower socio-economic strata. The typical profile of persons with disabling conditions is poor education, income of less than a minimum monthly wage, unemployed, belonging to the 1 or 2 socio-economic strata, forming part of homes defined as poor, being male and living in rural areas. CONCLUSIONS: Poverty seems to enhance disability increasing vulnerability, risk and restricting opportunities for welfare. These results can be used as arguments for redirecting the policies and actions for greater access of disabled persons to social and economic opportunities.

Adolescent↗

Work disability and diabetes.

OBJECTIVE: To determine the rates and demographic determinants of work disability, hours worked per week, work-loss days, and wages in individuals with diabetes. RESEARCH DESIGN AND METHODS: A probit regression analysis was performed on a cross-sectional population-based survey of U.S. noninstitutionalized civilian population (National Medical Expenditures Survey--2, 1987). The sample was restricted to individuals aged > or = 25 years. A total of 1,502 individuals reported having diabetes, and 20,405 did not. Information on workforce participation and income were collected quarterly. Work disability was defined as a self-report of having been unable to work because of illness or disability for > or = 2 quarters in 1987. RESULTS: Work disability was reported by 25.6% of individuals with diabetes, compared with 7.8% of those without diabetes. Work disability rates were higher for older people, females, and African-Americans, and lower for Hispanics and for individuals with greater non-wage income. Individuals with diabetes engaged in the workforce had more work-loss days than did nondiabetic individuals, but had similar hourly wages. Predicted mean earnings were significantly lower for individuals with diabetes at all ages, resulting in $4.7 million loss in earnings in 1987 due to work disability. CONCLUSIONS: Work disability is significantly higher for individuals with diabetes than for those without diabetes at all ages, and results in a significant decrease in earnings. A disproportionate burden of work disability is borne by older individuals and women with diabetes. Better information on the determinants of work disability in individuals with diabetes is needed.

Absenteeism↗

Evaluation of a postal screening questionnaire to identify the physically disabled.

In this study a postal screening questionnaire was compared with an interviewer-administered questionnaire for identifying disabled persons living in the community. Disability was defined as difficulty with specified activities of daily living, specified medical problems which often cause disablement, and frequent use of a formal health or social service. A 91 per cent response rate to the screening questionnaire was obtained from a random sample of 793 adults in a general practice; 89 were classified as "disabled". Seventy-eight per cent of those subsequently interviewed changed their response to at least one item; this figure fell to 29 per cent when frequent use of formal services was excluded from the definition of disability. None of the persons classified as disabled from the postal survey were considered to be non-disabled after interview. Interviews with a sample of persons who did not report disability on the postal questionnaire resulted in no changes in classification. General practitioners (GPs) who completed screening questionnaires on respondents with the help of practice records were aware of only 79 of 206 disability items reported. The GPs were more aware of respondents' difficulties with activities of daily living than of their medical problems.

Disability Evaluation↗

The sensory profile: a discriminant analysis of children with and without disabilities.

OBJECTIVES: The purpose of this study was to determine which factors on the Sensory Profile, a measure of children's responses to commonly occurring sensory experiences, best discriminate among children with autism or pervasive developmental disorder (PDD), children with attention deficit hyperactivity disorder (ADHD), and children without disabilities. METHOD: Data for three groups of children 3 to 15 years of age were used: 38 children with autism or PDD, 61 with ADHD, and 1,075 without disabilities. The researchers conducted a discriminate analysis on the three groups, using group membership as the dependent variable and the nine factors of the Sensory Profile as independent variables. RESULTS: The analysis yielded two discriminant functions: one that differentiated children with disabilities from children without disabilities and another that differentiated the two groups of children with disabilities from each other. Nearly 90% of the cases were correctly classified with these two functions. CONCLUSION: The Sensory Profile is useful for discriminating certain groups of children with disabilities. Children with disabilities are accurately classified into disability categories with the factors described by previous authors. This suggests that patterns of behavior associated with certain developmental disorders are reflected in populations of children without disabilities. It may be the frequency or intensity of certain behaviors that differentiate the groups.

Adolescent↗