Information needs of caregivers of adults with intellectual and/or developmental disabilities in India.

Many families of adults with intellectual and/or developmental disabilities in India experience difficulty in accessing services/supports, due to lack of awareness/knowledge of disability rights/laws and available services, and in accessing the services. There remains insufficient research on the information needs of these caregivers and on designing interventions that aim to increase their awareness/knowledge about human rights and supports/services. A strengths-based mixed methods needs assessment was conducted to understand the information needs of these family caregivers. Results showed that caregivers ≥50 years had significantly higher information needs than younger caregivers. Specifically, caregivers with no proficiency in English needed more information on the available services for the care recipients (n = 100). Qualitative results showed that very few caregivers had any awareness or access to information on human rights, disability-related laws/policies or available supports/services (n = 15). Study findings underscore the government's role in improving awareness-raising initiatives and imparting the information in multiple Indian languages.

Formal support and service needs of family caregivers of adults with intellectual and/or developmental disabilities in India.

BACKGROUND: Despite the enactment of disability laws/policies in India, research shows that caregivers of adults with intellectual and/or developmental disabilities experience inadequate formal supports/services due to dissemination barriers and lack of awareness about them. To address discrepancy between caregivers' support needs and the professionals' understanding of their needs, the study proposed to conduct a caregiver needs assessment so that culturally-tailored programs are developed. METHOD: A strengths-based mixed methods needs assessment was conducted with a convenience sample of 100 caregivers in Hyderabad, India. One hundred caregivers completed the survey and 15 caregivers participated in semi-structured interviews. RESULTS: Caregivers needed more and improved formal supports/services, particularly from the government. Caregivers faced systemic and attitudinal barriers, and personal impediments to accessing them. Needs differed by care recipients' intellectual disability level, gender, and intellectual disability related conditions. CONCLUSIONS: Researchers, service providers and policymakers need to adopt innovative strategies to improve formal supports/services access.

Factors impacting community living outcomes among former long-term nursing home residents using the interdependence-Human Activity Assistive Technology (i-HAAT) model.

Despite an increased application of social theory in assistive technology (AT) outcomes research, there continues to be a gap in integrating AT conceptual models in research design, data analysis, and results interpretation. This paper merged two preexisting AT models, the Human Activity Assistive Technology model (HAAT) and the interdependence frame for AT into a novel framework, the interdependence-HAAT model (i-HAAT). This model was used to examine the outcomes of former long-term nursing home residents using AT. The model was also used as a framework to facilitate quantitative variable identification and categorization, emphasize the interconnectivity between domain variables, and explore the infrastructural supports necessary for the successful community reintegration of deinstitutionalized AT users. Meaningful integration of theory into practice is the essential next step in generating socially responsive research that addresses AT consumer needs and moves the field forward.

Falls perceived as significant by lower limb prosthesis users are generally associated with fall consequences rather than circumstances.

PURPOSE: To determine if falls perceived as significant by lower limb prosthesis (LLP) users were associated with fall circumstances and/or consequences. MATERIALS AND METHODS: The circumstances and consequences of LLP users' most significant fall in the past 12-months were collected using the Lower Limb Prosthesis User Fall Event Survey. Participants rated fall significance from 0 (not significant) to 10 (extremely significant), which was then dichotomized into "low" and "high". Binary logistic regression was used to assess associations between fall significance and fall circumstances and consequences. RESULTS: Ninety-eight participants were included in the analysis. Five fall consequences were associated with greater significance: major injury (OR = 26.7, 95% CI: 1.6-459.6, p = 0.024), need to seek medical treatment (OR = 19.0, 95% CI: 1.1-329.8, p = 0.043), or allied-health treatment (OR = 18.2, 95% CI: 2.3-142.4, p = 0.006), decreased balance confidence (OR = 10.9, 95% CI: 2.4-49.3, p = 0.002), and increased fear of falling (OR = 7.5, 95% CI: 2.4-23.8, p = 0.001), compared to two fall circumstances: impact to the arm (OR = 5.0, 95% CI: 2.0-12.1, p = 0.001), and impact to the face, head, or neck (OR = 9.7, 95% CI: 1.2-77.4, p = 0.032). CONCLUSIONS: Significant falls were generally more associated with fall consequence than fall circumstances.

Falls remain common, injurious, costly, and socially isolating events for lower limb prosthesis (LLP) users.Falls perceived as most significant by LLP users were associated with injury, reduced balance confidence, and increased fear-of-falling.Studying falls perceived by LLP users as significant may help reduce falls that matter most to LLP users.

Robotic-assisted laparoscopic removal of dermoid cyst mimicking an enlarged cystic mass in the seminal vesicle.

Introduction: Isolated seminal vesicle cysts not associated with Zinner syndrome is a rare disorder that can present initially with urinary obstructive symptoms or nonspecific groin pain. Case description: We present the uncommon case of a dermoid cyst mimicking a seminal vesicle cyst treated with robotic-assisted laparoscopic seminal vesiculectomy. Conclusion: For dermoid cysts, surgical excision is the gold standard of treatment with a high cure rate and little risk of regrowth if spillage is avoided and full resection is completed. Robotic-assisted laparoscopic surgery is a viable management option with good visualization of the anatomy.

Correlates of Social Participation of Adults with Intellectual and Developmental Disabilities.

Social participation has been linked to healthy aging, yet little is known about social participation during extended periods of time for adults with intellectual and developmental disabilities. The social participation of 777 adults with intellectual and developmental disabilities (aged 18-77 years), during a 4-year period, was examined. Sociodemographic, physical, and behavioral health-related correlates of engagement in social participation were investigated. Findings indicated that the majority of adults with intellectual and developmental disabilities engaged in at least a moderate level of social participation during the 4-years. Employment status, physical health, and Special Olympics participation were associated with a higher level of social participation. Findings have implications for supports and services seeking to promote social participation opportunities for adults with intellectual and developmental disabilities.

POWERSforID: Personalized online weight and exercise response system for individuals with intellectual disability: A randomized controlled trial.

BACKGROUND: Obesity is associated with early mortality and chronic disease among adults with intellectual disability (ID), yet there is a paucity of effective weight management interventions for this population. OBJECTIVE/HYPOTHESIS: This pilot study examined a tailored intervention on weight loss, waist circumference, A1c, and lipid profile among adults with ID. METHODS: Obese adults (BMI ≥ 30 kg/m2) with mild to moderate ID were randomized to an intervention (n = 17) or comparison group (n = 18) for a 24-week trial. All participants completed health-related questionnaires and clinic visits. Participants in the intervention group received access to an online weight management platform that assisted them in monitoring their diet and physical activity along with weekly coaching calls (weeks 1-12) that were tapered off to calls every other week (weeks 12-24). The comparison group completed questionnaires and clinic visits, but did not receive access to the online platform or calls. Differences in weight, waist circumference, percent body fat, A1c, lipid profile were assessed at baseline and at week 24. RESULTS: The intervention group reduced body weight by an average of 2.7% (-2.6 kg; p = 0.02) and waist circumference by 3.4% (-3.89 cm; p = 0.02) versus the comparison. There were no statistically significant group by time interactions observed among other variables. CONCLUSION: Adults with ID who received the intervention were able to maintain or slightly reduce their body weight and waist circumference after the 24-week intervention. Despite not achieving the targeted sample size, the pilot study findings serve as a basis for developing accessible weight management interventions for people with ID.

Examining Association Between Reported High Cholesterol and Risk Factors in Adults With Intellectual and Developmental Disabilities (IDD): A Five-Year Follow-Up.

Adults with intellectual and developmental disabilities (IDD) are at a greater risk of developing high cholesterol and cardiovascular disease. We examined whether physical inactivity, obesity, and diabetes were predictive of reported high cholesterol and whether there were any mediating effects of diabetes on the relationship between obesity and high cholesterol in 1,618 adults with IDD across five years. Results suggest that obesity and diabetes were significantly associated with high cholesterol after adjusting for age, sex, and residence type with a partial mediator effect of diabetes in the relationship between obesity and high cholesterol across all time points. Further research is needed to explore the causal mechanisms behind the relationships between obesity, diabetes, and high cholesterol.

Relationships among parenting stress, health-promoting behaviors, and health-related quality of life in Korean mothers of children with cerebral palsy.

Health-promoting behaviors have been shown to enhance the quality of life across diverse populations. In this study, we examined the indirect effects of several health-promoting behaviors on the relationship between parenting stress and health-related quality of life in mothers of children with cerebral palsy (CP). A convenience sample of Korean mothers (N = 180) of children aged 10 months to 12 years with CP was recruited from clinical and school settings. Health-promoting behaviors were measured using the health-promoting lifestyle profile II, which is comprised of six subscales: health responsibility, physical activity, nutrition, spiritual growth, interpersonal relations, and stress management. Multiple mediation analyses were conducted to examine the mediating role of these behavioral categories. Spiritual growth (ß = .56, p < .05) had an indirect effect on the relationship between parenting stress and physical health-related quality of life while spiritual growth (ß = -1.00, p < .01) and stress management (ß = -.80, p < .05) were found to mediate the association between parenting stress and mental health-related quality of life. The findings of multiple mediation analyses provide evidence of the influence of specific health-promoting behaviors on health-related quality of life, thereby informing the development of intervention programs for mothers of children with disabilities.

Associated Risk Factors for Depression and Anxiety in Adults With Intellectual and Developmental Disabilities: Five-Year Follow Up.

A better understanding of the factors associated with depression and anxiety in people with intellectual and developmental disabilities (IDD) is needed to provide guidelines for service providers, clinicians, and researchers as well as to improve the diagnostic process. The current study used a longitudinal dataset to explore demographic, health, and psychosocial risk factors of anxiety and depression in adults with IDD. Women were more likely to have depression while older adults, people with autism, and people with hearing impairments, were more likely to have anxiety. Chronic health conditions were associated with both anxiety and depression, while changes in stressful life events were associated with an increased risk of anxiety. Clinical and research contributions are discussed.

Low Levels of Physical Activity and Sedentary Behavior in Adults with Intellectual Disabilities.

Adults with intellectual disabilities (ID) are more likely to lead sedentary lifestyles and have low levels of physical activity (LLPA). The present study investigated the prevalence of reported LLPA and time spent watching TV in adults with ID and identified the associated factors for these behaviors. The proxy informants of 1618 adults with ID completed the surveys regarding their health behaviors. Multiple logistic regressions were employed for LLPA and multiple linear regressions for time spent watching TV. About 60% of adults with ID had LLPA and average time spent watching TV was 3.4 h a day. Some characteristics and health and function variables were identified as associated factors. While engaging in community activities and involvement in Special Olympics were inversely associated with LLPA, they were not associated with time spent watching TV. Attending day/educational programs or being employed were associated with spending less time watching TV. Findings highlight differential factors associated with LLPA versus TV-watching behavior in adults with ID. Hence, a key strategy aimed at increasing physical activity includes promoting participation in social and community activities, while targeted activities for reducing sedentary behavior might focus on providing day programs or employment opportunities for adults with ID.

Differences in physical health, and health behaviors between family caregivers of children with and without disabilities.

BACKGROUND: Providing care for children with disabilities can negatively influence the physical health and health behaviors of family caregivers. OBJECTIVES/HYPOTHESIS: The study purposes were to compare the prevalence of chronic conditions and health risk behaviors of family caregivers of children with and without disabilities and to examine associations between disability status of children and family caregivers' chronic conditions and health risk behaviors. METHODS: This study compared chronic conditions and health risk behaviors across adult family caregivers of children with a disability (FCG-D) and family caregivers of children without a disability (FCG) living in a U.S. household using 2015 National Health Interview Survey data. Health risk behaviors were defined as heavy drinking, current smoking, physical inactivity, and unhealthy sleep. Multivariable logistic regression was conducted to compare chronic conditions and health risk behaviors between FCG-D and FCG with adjustments for demographic and healthcare coverage covariates. RESULTS: FCG-D showed significantly greater likelihoods of chronic conditions (e.g., asthma, back pain, chronic bronchitis, heart conditions, migraine, and obesity) than FCG. FCG-D also exhibited significantly more smoking and unhealthy sleep. CONCLUSIONS: Family caregivers of children with a disability reported significantly greater likelihoods of various chronic conditions and were more likely to engage in health risk behaviors (smoking and unhealthy sleep). Further study is needed to develop intervention programs for encouraging effective health-promoting behaviors among family caregivers of children with a disability as well as health policies for decreasing health disparities experienced by this population.

Prevalence of overweight and obesity among students with intellectual disabilities in Taiwan: A secondary analysis.

PURPOSE: The study aims to investigate the prevalence and likelihood of overweight and obesity in a large sample of students with intellectual disabilities (ID) from Taiwan. METHOD: A secondary analysis of a cross sectional study was employed to examine the body weight status among 7 to 18 year-old students with ID enrolled in public special education schools in 2013. The students were divided into three age groups (7-12 yrs, 13-15 yrs, and 16-18 yrs), four ID levels (mild, moderate, severe, and profound) and six comorbidities of ID (ID only, ID caused by genetic disorders, ID with physical disability, ID with multiple disabilities without physical disabilities, ID with autism spectrum disorders, and others with rare diseases). RESULTS: The sample represented 34.8% of students with ID attending public special education schools in Taiwan. Within this sample, 35.2% were identified as being overweight or obese. The 16 to 18 year-old age group were approximately two times (AOR=2.02, more likely to be obese than the 7-12 year-old group. Students with ID caused by genetic disorders such as Down syndrome (AOR=2.00) appeared to be more overweight or obese in comparison to those with ID only. Students with moderate (AOR=1.64) and severe ID (AOR=1.49) were more overweight/obese compared to those with profound ID. CONCLUSION: The findings not only highlight the high prevalence of overweight/obesity but also stress the need for health promotion initiatives to address issues of overweight/obesity within this population.

Impact of adulthood stage and social-environmental context on body mass index and physical activity of individuals with intellectual disability.

Individuals with intellectual disability (ID) are at risk for obesity and physical inactivity. We analyzed a subset of 2009-2010 National Core Indicators (NCI) database to examine (1) the impact of three adulthood stages- younger (20-39 years), middle (40-59 years), and older (60 years and older) on Body Mass Index (BMI) and physical activity (PA); and (2) the relationship between social-environmental context (i.e., residence type, everyday choices, and community participation) and BMI and PA, with adjustment for individual characteristics of the adults with ID. Findings highlight the need to pay more attention to obesity by providing health education and emphasizing healthy choices. Results also suggest the importance of community participation as a way of promoting more physical activity.

Interventions to promote health: crossing networks of intellectual and developmental disabilities and aging.

BACKGROUND: People with intellectual and developmental disabilities experience lower levels of healthy behaviors as do older persons, making health promotion a key priority for these populations. OBJECTIVE: The aim of this paper is to review the two fields of developmental disability and aging health promotion research in order to understand strategies used by both and to identify emerging and innovative practices that disability researchers can learn from each other. METHODS: We conducted scoping reviews of health promotion intervention peer reviewed articles in English from 1991 to 2011 for intellectual and developmental disabilities and from 2007 to 2011 for the more extensive gerontological literature. Two reviewers extracted data. RESULTS: The disability review identified 34 studies and three main types of interventions: exercise, multi-component, and health screens. The aging review identified 176 articles which had a wider variety of intervention topics and techniques, with more articles including innovative approaches to bringing interventions to community settings across a wider variety of populations. CONCLUSIONS: As people with intellectual and developmental disabilities are living longer, disability health promotion can look to the aging literature for ideas to incorporate in future interventions for people with intellectual and developmental disabilities, while the gerontological research can learn from the research in intellectual and developmental disabilities on ways to adapt health promotion interventions to people with cognitive and physical limitations. Use of universal design principles could enable greater inclusion of people with disabilities in health promotion interventions for the general aging population.

Prevalence of falls and risk factors in adults with intellectual disability.

The purpose of this study was to examine the prevalence of falls and risk factors for falls in 1,515 adults (≥ 18 years) with intellectual disability using baseline data from the Longitudinal Health and Intellectual Disability Study. Nearly 25% of adults from the study were reported to have had one or more falls in the past 12 months. The prevalence of falls increased with advancing age. A series of univariate and multivariate logistic regressions were performed to identify risk factors for falls in the full sample and in subsamples. The risk factors for falls in adults with intellectual disability are being female, having arthritis, having a seizure disorder, taking more than 4 medications, using walking aids, and having difficulty lifting/carrying greater than 10 lb.

A conceptual model for identifying, preventing, and managing secondary conditions in people with disabilities.

Secondary conditions are considered a direct consequence of having a disability, and many are presumed to be preventable. Although a few researchers have noted that people with disabilities are exposed to several secondary conditions, including pain, fatigue, depression, and obesity, what is lacking in the literature is a conceptual framework for understanding the antecedents, risk factors, and consequences of secondary conditions. To move the rehabilitation and public health professions toward a more unified approach to understanding and managing secondary conditions as well as distinguishing them from chronic and associated conditions, this article proposes a set of criteria for defining secondary conditions and a conceptual model that considers the potential factors associated with their onset, impact, severity, and management.

Barrier removal in increasing physical activity levels in obese African American women with disabilities.

BACKGROUND: This pilot study examined the effectiveness of a telephone-based intervention to increase physical activity in obese African American women with mobility disabilities by targeting the removal of barriers to participation. METHODS: Severely obese (mean body mass index [BMI] = 49.1 kg.m²) African American women (n = 33) with mobility disabilities completed a 6-month telephone-based physical activity coaching intervention. RESULTS: The major environmental/facility barriers at preintervention were cost of the program (66.7%), lack of transportation (48.5%), not aware of fitness center in the area (45.5%), and lack of accessible facilities (45.5%). The major personal barriers were pain (63.6%), don't know how to exercise (45.5%), health concerns (39.4%), don't know where to exercise (39.4%), and lack of energy (36.4%). Despite only two personal barriers being significantly lower at posttest (don't know where to exercise and don't know how to exercise) (p < 0.01), total exercise time increased from < 6 minutes/day to 27 minutes/day at posttest (p < 0.001), and total physical activity time (structured exercise, leisure, indoor and outdoor household activity) increased from 26 minutes/day to 89 minutes/day at posttest (p < 0.001). CONCLUSIONS: Interventions aimed at increasing physical activity participation among obese African American women with mobility disabilities should start with increasing their awareness/knowledge on where and how to exercise. Other reported barriers (e.g., cost, transportation, finding an accessible facility, health concerns, pain) may not be as critical to alter/remove as identifying where participants can exercise (i.e., home, outdoors, gym) and providing them with a variety of routines that can be performed safely in their desired setting.

Health profile of aging family caregivers supporting adults with intellectual and developmental disabilities at home.

The health status of 206 female caregivers supporting adults with intellectual and developmental disabilities at home was investigated using objective (i.e., presence of chronic health conditions and activity limitations) and subjective (i.e., self-perceived health status) health measures compared with those of women in the general population in 2 age groups: middle age (Ages 40-59 years) and older ages (> or =60 years). Prevalence of arthritis, high blood pressure, obesity, and activity limitations for the caregivers in both age groups was significantly higher than that for women in the general population. Middle-age caregivers reported a higher prevalence of diabetes and high blood cholesterol than their age peers from the general population. Despite the potential health challenges, the caregivers generally perceived their health better than that of women in the general population. Older caregivers' perceptions on their psychological well being, however, appeared to an exception. Implications regarding potential health risks for caregivers and residential services for persons with intellectual and developmental disabilities are discussed.

Residential characteristics, social factors, and mortality among adults with intellectual disabilities: transitions out of nursing homes.

The present study examined the degree to which residential characteristics and social factors are associated with mortality, after controlling for personal characteristics, among adults with intellectual disabilities who have resided in nursing homes (facilities providing skilled care and related services) at baseline in the Chicago area. Initial assessments were conducted on 330 residents, and 2 follow ups were performed over 10 years. Seventy-one residents had died by the end of the study. The variables examined included personal characteristics of age, gender, intellectual level, health, and adaptive behavior; residential characteristics of type of residence, size of facility, attractiveness of physical environment (cleanliness, conditions, and aesthetic appeal), and diversity of physical environment (personalization of residents' rooms and distinctiveness of all living spaces); and social factors of family involvement and community integration. The results indicated, beyond age, adaptive behavior, and health, that size of residences, residential characteristics, and social factors are related to mortality.