Caregiving for Uganda's elders with disability: Using cross-sectional surveillance data to identify healthcare service gaps in low- and middle-income settings

Background

Disability is highly prevalent in low-and-middle-income countries (LMICs), but there is a relative dearth of disability and caregiving research from LMICs.

"We're tired, not sad": benefits and burdens of mothering a child with a disability

Caregiver burden has received considerable emphasis in the literature on the social experience of mothering children with disabilities. Little attention has been paid, however, to either the nature of the burdens perceived or to maternal ability to see beyond the burdens to the benefits of their caregiving role. This study utilizes a mixed methods approach to examine these neglected aspects of the social experience of mothering children with disabilities. Findings of a survey of 81 mothers of children with disabilities in Florida, USA and follow-up interviews with 7 of these mothers indicate that: 1. For most of the mothers included in the study, "the burden of care" is a matter of socio-structural constraints (Objective Burden) rather than emotional distress (Subjective Burden); 2. Despite the socio-structural constraints associated with caring for a child with complex needs, most mothers perceive valuable benefits in having a child with a disability; and 3. Perceived Stigma has an important positive impact on both dimensions of burden and, through its impact on Subjective Burden, can decrease the perceived benefits of caring for a child with a disability.     

Interventions utilising contact with people with disabilities to improve children's attitudes towards disability: A systematic review and meta-analysis

Background

Children with disabilities are often the target of prejudice from their peers. The effects of prejudice include harmful health consequences. The Contact Hypothesis has previously shown to promote positive attitudes towards a range of social groups.

Developing a systematic search strategy related to people with disability: A brief report testing the utility of proposed disability search terms in a search about opioid use

Background

The varied use of the term “disability” in the scientific literature makes it challenging to conduct systematic reviews of health issues among people with disability. Utilizing general disability search terms has been suggested as an efficient way to ensure a broad capture of the literature related to disability.

Health and educational status of children raised by a caregiver with a disability

Background

Research on children raised by adults with disability is limited. Our goal was to provide a profile of the health and educational status of children raised by a caregiver with disability.

Methods

In 2007-2008, 4571 adults completed the North Carolina Behavior Risk Factor Surveillance System (BRFSS) and Child Health Assessment Monitoring Program (CHAMP) surveys. Analyses using weighted data provided population-based health/educational status comparisons of children (0 to 17 years old) raised by caregivers with and without disability.

Results

Twenty-three percent of caregivers reported disability. Rates of insurance coverage and preventive care did not differ by caregiver disability status, although children of caregivers with disability were more likely to have publicly funded insurance. The majority of children of caregivers with disability were in excellent/very good health (70%), healthy weight (58%), and making above-average grades (74%). Nonetheless, children raised by caregivers with disability appear to be at disproportionately higher risk for overall poorer outcomes. Children raised by caregivers with disability were more likely to be in fair/poor health (adjusted odds ratio [aOR] 2.2; 95% confidence interval [CI] 1.3 to 3.6), overweight/obese (aOR = 1.5, 95% CI 1.1-2.0), need medical/educational services (aOR = 2.0, 95% CI 1.5-2.6), have lower grades (aOR = 1.9, 95% CI 1.4-2.5), and higher rates of school absenteeism (aOR = 2.4, 95% CI 1.8-3.4), compared to children of caregivers without disability.

Conclusion

Children raised by a caregiver with disability show good overall wellness; however, caregiver disability status was found to be associated with an increased risk for poor child health and educational outcomes. Future research is needed to clarify the causes of these disparities and inform policies to alleviate them.     

中国0?4岁儿童残疾发生现状:家庭环境的支持效应分析

目的 探讨家庭环境(家庭经济条件、父母社会经济角色)对低龄儿童罹患残疾的关联效应。方法 从2006年第二次全国残疾人抽样调查原始数据库中截取0~4周岁儿童及其父母的信息形成新样本, 总量为73394个。应用SPSS16.0软件, 率或构成比的比较用X2检验, 多因素分析用binarylogistic回归模型。结果 残疾发生的风险在3岁前随着年龄的增长不断升高(0~4岁Ofl值分别为0.47、0.66、0.90、1.56和1.47), 与描述残疾现患水平的“累积”特性密切相关;男童的残疾发生风险要高于女童(0R=0.82);家庭收入越低子女残疾的发生风险则越高(家庭人均收人≤683元, 0?=1.80;彡7255元, 0fi=0.34);在父母同居的家庭中子女残疾发生风险与父母文化程度显著关联, 如是否识字(父P<0.001, OR=2.18;母P=0.02, 0R=1.82)和是否上过小学(父P=0.05, OR=1.56);父亲就业状况与子女残疾的发生关联不显著, 而与母亲的就业状况则显著关联(P=0.02, OR=1.19)。单因素分析显示, 母亲是否为初婚、再婚均与子女残疾发生显著关联, 而与父亲是否再婚的关联显著, 初婚则不显著。但在多因素分析中, 无论父亲还是母亲的婚姻经历均不再显著。结论 家庭环境是影响低龄儿童残疾的直接因素。     

Urban built environments and trajectories of mobility disability: Findings from a national sample of community-dwelling American adults (1986–2001)

As people age, they become more dependent on their local communities, especially when they are no longer able to drive. Uneven or discontinuous sidewalks, heavy traffic, and inaccessible public transportation, are just some of the built environment characteristics that can create barriers for outdoor mobility in later adulthood. A small body of literature has been investigating the role of the built environment on disability, but has been limited to cross-sectional analyses. The purpose of this paper is to further advance this area of research by examining the role of the built environment on long-term trajectories of mobility disability in a national sample of American adults (age 45+) followed over a 15-year period. Using multilevel logistic growth curve models with nationally representative data from the Americans' Changing Lives Study (1986–2001), we find that trajectories of mobility disability are steeper in older age groups. Women and those with lower education had a higher odds of mobility disability over time. The presence of just one chronic health condition doubled the odds of mobility disability at each of the four study waves. Among older adults (age 75+), living in neighborhoods characterized by more motorized travel was associated with an odds ratio for mobility disability that was 1.5 times higher in any given year than for older adults living in environments that were more pedestrian friendly. These results suggest that the built environment can exacerbate mobility difficulties for older adults. When considering ways to minimize disability as the population ages, simple changes in the built environment may be easier to implement than efforts to change risk factors at the individual level.     

Parental stress,coping strategies and social support in families of children with a disability

The aim of this research was to compare parental stress, coping strategies and social support perceived in families of children with low functioning autism (n = 8), high functioning autism (n = 10), Down syndrome (n = 12) and parents of typically developing children (n = 20). Specifically, the objective was to investigate which variables (coping strategies and perception of social support available) might better predict different stress outcomes in the four groups. Parents were asked to fill in three questionnaires: Parent Stress Index, Coping Orientation to Problems Experienced and Social Support Questionnaire. Significant differences among groups in all of the variables considered were found. These results suggest the advisability of fostering functional coping strategies and social support received in families of children with disabilities, and especially in those with children with low functioning autism.     

老年人失能的流行病学研究进展

中国目前老年人口的总体健康状况不容乐观,患病率和残疾率升高,其中失能老年人的人口数已逾千万。多项研究显示,老年人失能率因年龄、性别、居住地域的不同而存在差异,且受健康、社会学及生活行为等多方面因素的影响,本文分析国内外老年人失能流行病学的研究进展,以期对该人群长期照料护理政策的制定提供依据。     

Unintentional injuries among Chinese children with different types and severity of disability

PurposeLittle research has been done in China to study injury in individuals with disability. We investigated the impact of type and severity of disability on injury among children with disability in Hubei Province of China.MethodsA sample of 1201 children with disability were matched with 1201 healthy children on gender, age, and neighborhood. Disability type and severity were determined using the Chinese national standards. Caregivers were interviewed face-to-face about nonfatal unintentional injuries suffered by the child in the past 12 months before the interview. Univariate χ² test and logistic regression models were used to investigate association between disability type/severity and nonfatal unintentional injuries.ResultsInjury rate among children with disability was significantly higher than that among children without disability (10.2% vs. 4.4%; P < .001). Children with multiple disabilities had the highest risk of injury after controlling for confounding variables (odds ratio, 4.54; 95% confidence interval, 2.82–7.30; P < .001). The magnitude of the association between disability and injury varied by type and severity of disability.ConclusionsThe magnitude of the association between the presence or absence of disability in children and their risk of injury was large and significant, regardless of the type or severity of the children's disabilities.     

It takes a village: Fixed-effects analysis of neighborhood collective efficacy and children's development

Background

Previous studies suggest that neighborhood social capital is associated with children's mental health. The purpose of this study was to examine the association between neighborhood collective efficacy and children's psychosocial development.

Comparing effects of question set order and location within a survey instrument of two commonly used disability question sets among a U.S. population of adults

BackgroundIn nationally representative household surveys conducted in the United States (U.S.), two distinct sets of questions are commonly used to identify persons with disabilities. The six-question sequence (6QS) measures, in a yes/no fashion, limitations in cognition, hearing, independent living, self-care, vision, and walking. The Washington Group Short Set (WG-SS) captures more nuanced yet similar information, although instead of including a measure of independent living asks about communication. To date, research has not estimated, among the same set of survey respondents, variations in disability prevalence using these two sets of questions nor how prevalence estimates vary by question set order and placement of these questions at the beginning or end of a survey.Objective/HypothesisThe objective was to examine adjusted differences in disability prevalence among three measures of disability based on the 6QS and the WG-SS question sets, controlling for differences in question set order and placement within a survey.MethodsWe fielded an Internet survey (N = 13,277) in September 2020 that included these questions, but varied question set order and placement among respondents, using four different versions of the survey. We first tested for bivariate differences by survey design between an “any disability” measure as well as between specific types of limitations using Chi square. Finally, we examined pairwise adjusted differences in prevalence estimates.ResultsThe 6QS provided the most consistent prevalence estimates (26%–28%) (p < .05), regardless of survey design. Estimates varied more widely for the WG-SS measures, ranging from 43 to 60% for WG-SS1 and from 10% to 15% for WG-SS2, among survey versions.ConclusionsQuestion set order and placement was not associated with differences in prevalence for the 6QS but was associated with differences in estimates from the WG-SS. Further research is needed to understand the possible survey priming effects that might influence estimates from the WG-SS.     

Which source should we use to measure quality of life in children with asthma: The children themselves or their parents?

This study compares the reproducibility, construct validity and responsiveness of self-report and parent-report quality of life questionnaires How Are You (HAY) for 8–12-year-old children with asthma. A total of 228 Dutch children with asthma and their parents completed the HAY and daily recorded the child's asthma symptoms in a diary. Additionally 296 age- and -gender matched healthy children and their parents completed the generic part of the HAY. Reproducibility and responsiveness were examined in a sub-group of 80 children with asthma. In this group, three measurements were carried out, at baseline, after one week and once during the following 6 month when the clinical asthma status had changed. The within-subject standard deviations (SD) of three dimensions (physical activities, social activities, self-management) differed significantly (p < 0.05) in favour of the parent-version, indicating that the reproducibility of the parent version was better than that of the child version. The mean score-differences between children with asthma and healthy children as reported by parents did not significantly differ from those reported by children, except for cognitive activities (e.g. be able to concentrate on school work). The mean differences with regard to children with a different actual asthma status (symptom analysis), as reported by both informants, did not differ. Compared to the child-version, the parent-version showed greater ability to detect changes in children's quality of life over time for all but one dimension, indicating better responsiveness. The results indicate that in discriminative studies child and parents reports can be substituted on a group-level. In longitudinal studies data have to be obtained from parents. Consequently, caregivers collecting quality of life data for longitudinal purposes in daily practice should collect these data simply from parents. This revised version was published online in June 2006 with corrections to the Cover Date.     

Getting comfortable with disability: The short- and long-term effects of a clinical encounter

BackgroundPhysicians report discomfort when interacting with patients with disabilities, which can negatively impact the quality of healthcare they provide.Objective/HypothesisAn intervention structured around a formative clinical encounter was assessed for its effectiveness in changing comfort towards treating patients with disabilities. It was predicted that this encounter would have a positive short- and long-term impact on medical students.MethodDuring the 2017–2018 academic year, 169 third-year medical students conducted a patient encounter with a person who had a disability. Students met individually with the “patient” and completed a brief social and medical history as if they were meeting a new patient to establish care. A measure of perceived comfort caring for patients with disabilities was administered to students before and after the encounter. One year after the patient encounter, 59 students were surveyed about their satisfaction and the impact of the patient encounter.ResultsThe impact of encountering people with disabilities in a clinical setting was positive, with statistically significant improvements across all items on the measure of perceived comfort. Students were highly satisfied with the experience and anticipated feeling more confident, more comfortable, less awkward, and more skilled and efficacious when encountering a person with a disability in their future practice. A thematic analysis of the one year follow-up data suggest that students valued the encounter and desired more content on disability throughout their education.ConclusionsMedical education should include dedicated exposure to persons with disabilities and a simulated patient experience allowing for a safe environment to gain skills and confidence.     

Cow's urine poisoning in Nigeria: cardiorespiratory effects of cow's urine in dogs

“Cow's urine” concoction (CUPR) is a traditional remedy for convulsive seizures in Nigeria. Its administration has been associated with severe poisoning, sometimes with a fatal outcome in Nigerian children. Recently, we showed that several of the components of the concoction are toxic. We have demonstrated in the present study certain cardio-respiratory effects of cow's urine concoction in dogs. On the cardiovascular system, an initial bradycardia followed by tachycardia and a biphasic effect on blood pressure characterized by a fall followed by a rise were demonstrated. Progressive hypotension following repreated administration of CUPR was also shown in all experimental dogs. On the respiratory system, a short period of respiratory arrest and/or respiratory depression, followed by tachyponoea with associated hypoventilation of the lungs, were observed. The possible explanations for the observed cardiorespiratory effects of the concoction were discussed. On the basis of our findings, an hypothesis is advanced for the possible mechanisms of the neurological sequelae and/or death following cow's urine poisoning.     

The development and testing of a module on child functioning for identifying children with disabilities on surveys. II: Question development and pretesting

Background

This paper is part of a series of articles documenting the development of a module on child functioning by UNICEF in collaboration with the Washington Group on Disability Statistics (WG). This paper documents the contribution of Cognitive Interview (CI) question evaluation methods to the development of the final module.

The development and testing of a module on child functioning for identifying children with disabilities on surveys. I: Background

This is the first of three papers that will document the development of a survey module on child functioning developed by UNICEF in collaboration with the Washington Group on Disability Statistics (WG), and demonstrate – both conceptually and through test results – the strengths of that module compared with alternative tools for identifying children with disabilities in household surveys.This first paper in the series sets the background and reviews the literature leading to the development of the UNICEF/WG Child Functioning Module (CFM) and presents the WG Short Set of questions (WG-SS) and the Ten Question Screening Instrument (TQSI) as precursors, outlining some of their shortcomings and how the UNICEF/WG CFM was designed to meet those challenges.Subsequent articles will summarize results from the cognitive and field testing of the CFM including comparisons with results derived from the TQSI and the WG-SS.