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1.
BackgroundThere is evidence that female youth with intellectual/developmental disabilities (IDD) experience poorer gynecological care compared to female youth without disabilities.ObjectiveThe objective of this study was to obtain baseline data on visits to a health care provider for a gynecological issue for females with IDD and compare that information to the experiences of female youth without IDD.MethodsThis study is a retrospective cohort study using population-level administrative health data from 2010 to 2019 for females aged 15–24 years, with and without IDD.Results6452 female youth with IDD and 637,627 female youth without IDD were identified in the data. Over the ten-year period, 53.77% of youth with IDD and 53.68% of youth without IDD had a visit to a physician for a gynecological issue. However, as females with IDD aged, the number of people seeing a physician for a gynecological issue decreased. In the group aged 20–24 years, 15.25% of females with IDD and 24.47% of females without IDD (p < 0.0001) had a Pap test done at any time; 25.94% of females with IDD had a visit for contraception management and 28.38% of females (p < 0.0001) without IDD had a visit for contraception management. Gynecological care also varied by type of IDD.ConclusionsFemales with IDD had a similar number of visits for a gynecological issue as female youth without IDD. However, the reasons for visits and the age at which visits occurred differed between youth with and without IDD. As females with IDD transition into adulthood, gynecological care must be maintained and improved.  相似文献   

2.
BackgroundResearch to date with children and youth with intellectual and developmental disabilities (IDD) has previously focused upon specific aspects of health (e.g., physical activity, nutrition). A broader focus on ‘wellness’ takes a positive approach to health by addressing how individuals can lead meaningful lives by focusing on their unique strengths and resources across multiple wellness dimensions, rather than focusing on deficits.ObjectiveThis study, conducted in partnership with Special Olympics (SO), aimed to understand the state of perceived wellness and wellness-promoting behaviours of children and youth with IDD from multi-stakeholder perspectives (i.e., SO athletes, caregivers, and coaches).MethodsA cross-sectional Likert survey methodology was employed to generate data on the perceptions of multiple stakeholders on different wellness dimensions identified through a literature review and consultations with SO stakeholders.ResultsAthletes, caregivers and coaches generally agreed rather than disagreed with wellness statements, with the exception of coaches' responses regarding healthy nutrition. Athletes agreed more than caregivers and coaches that they engaged in some wellness promoting behaviours (i.e., calming oneself down, participating in their communities). Athletes and coaches were more likely to agree than caregivers about athletes’ positive outlook.ConclusionAthletes’ perceptions of their own wellness are unique from those of caregivers and coaches. Focusing on wellness can broaden understandings of how to support young people with IDD by drawing on their strengths and resources to foster optimal health and a sense of wellness in ways that are meaningful and relevant to them.  相似文献   

3.
4.
BackgroundMothers with intellectual and developmental disabilities (IDD) frequently experience mental health problems. Yet, they are excluded from broader women's mental health efforts, and few services exist to support their unique mental health needs.ObjectivesOur objective was to identify key risk, protective, and resilience factors that affect mental health among mothers with IDD.MethodsWe interviewed mothers with IDD on: (1) a quantitative measure to assess demographics and depressive symptoms and (2) qualitative focus groups on parenting and mental health (analyzed through thematic analysis). There were three focus groups, for a total sample of 12 mothers with IDD.ResultsThe 12 women in the sample had a total of 28 children, with a mean age of 11.3 years (SD = 9.9). The mean depressive symptom score in the sample was 13.8 (SD = 5.5), with 7 women scoring above the cut-off for clinically significant symptoms. Nine thematic categories were identified, organized into risks, protective factors, and resilience factors. Risks were parenting stress, life stressors, feelings of powerlessness with the child welfare system, and feeling judged. Protective factors were formal and informal supports. Resilience factors were motherhood enjoyment, having a good family life, and wishing to be independent.ConclusionsEfforts to improve mental health among mothers with IDD should minimize risks that undermine adaptive capabilities and promote resilience to restore efficacy of protective systems. Better training of service-providers working with individuals with IDD, using strength-based approaches and developing alternative, autonomy-building sources of support in the form of peer support groups is recommended.  相似文献   

5.
BackgroundPeople with intellectual disabilities (ID) have high prevalence of cardiovascular disease (CVD) risk factors; yet, few behavioral health interventions are designed and implemented for people with ID.ObjectiveThis study examined Special Olympics Inc. (SOI) fitness models as a potential intervention to reduce CVD risk in people with ID.MethodsData from SOI fitness models implemented in 2016–2018 were assessed. Special Olympics Programs received funding, resources, and technical assistance from SOI to conduct fitness models centered on inclusive physical activity and goal setting. Weight, body mass index, systolic blood pressure (SBP), and diastolic blood pressure (DBP) were measured at baseline and 4–12 weeks into the model. Multi-level multivariable quintile linear regression assessed change.Results383 participants with ID (athletes) and 281 partners without ID met inclusion criteria. Mean weight loss among athletes was 0.67 kg and 132 (31.9%) lost ≥ 1 kg. Blood pressure decreased in SBP quintile 4 (−7.52 mm Hg, 95% confidence interval [CI]: 11.8, −4.0), SBP quintile 5 (−9.52 mm Hg, 95% CI: 13.5, −5.6), and DBP quintile 5 (−7.49 mm Hg, 95% CI: 13.1, −1.9). Partners had similar results. Strongest effects were in a ‘high-risk’ group that was in the quintile 4 or 5 in all baseline measures.ConclusionIn fitness models developed to improve fitness for people with ID, there was a reduction in weight and blood pressure. SOI fitness models show promise and potential as a health intervention. This work enables further examination of indicators for successful implementation and evaluation of health.  相似文献   

6.
BackgroundAcross and within countries there is a need to understand how the COVID-19 pandemic has impacted populations of individuals with intellectual and developmental disabilities (IDD).ObjectiveRates of COVID-19 positivity for adults with IDD, including Down syndrome, relative to adults without IDD in Ontario, Canada were compared. Health profiles and case-based rates of hospitalizations, intensive care unit admissions, and mortality within 30 days of testing positively were compared for those with IDD, including Down syndrome, versus those without IDD.MethodsThis retrospective cohort study linked health administrative databases using unique encoded identifiers to describe population-level COVID-19 positivity, related hospital use and mortality from January 15, 2020 to January 10, 2021. Incidence rate ratios (RR) and 95% confidence intervals were calculated.ResultsRelative to adults without IDD, COVID-19 positivity rates were 1.28 times higher for adults with IDD and 1.42 times higher for adults with Down syndrome.Compared to adults without IDD, adults with IDD were more than twice as likely to be hospitalized following COVID-19 (RR:2.21 (95%CI: 1.93,2.54)) and to die (RR:2.23 (95%CI: 1.86,2.67). These RRs were greater for adults under 65. For adults with Down syndrome, mortality rates were 6.59 (95%CI: 4.51,9.62) times higher than those without IDD.DiscussionIn Ontario, Canada, hospitalization and mortality rates associated with COVID-19 are higher for adults with IDD than other adults. These findings should inform vaccination strategies that often prioritize older adults in the general population resulting in people with IDD, who are often in younger age groups, being overlooked.  相似文献   

7.
BackgroundIndividuals with intellectual disabilities (ID) have poorer health statuses compared to the general population. Actions are needed to address health disparities and promote healthy lifestyles among individuals with ID. Moreover, studies that consider program settings for this population are needed.ObjectiveThe Special Olympics health program, Fit 5, was evaluated to assess effectiveness in improving health measures for individuals with ID. The settings of programs’ implementation were also considered.MethodsFour Special Olympics basketball teams participated as an intervention group, and three teams as a control group, in a study of the Fit 5 program that was implemented during, and as part of, a regular 8-week basketball season. Resting heart rate (RHR) and blood pressure, and height and weight to calculate Body Mass Index (BMI), were measured before and after the program. Differences in pre- and post-measures were compared between the two groups with paired samples t-tests and ANCOVA.ResultsParticipants in the intervention group had significantly greater improvements in resting systolic and diastolic blood pressures (p = 0.02 and 0.03, respectively) and RHR (p = 0.003). BMI increased for both groups; however, the increase in the intervention group was significantly less (p = 0.006). The Special Olympics setting was considered familiar and supportive and effectively reached individuals with ID.ConclusionThe Fit 5 program positively impacts RHR and blood pressure, and could help reduce extents of BMI increases, in individuals with ID when implemented in a common setting. Further investigation of the impact of Fit 5 and similar programs in additional settings is warranted.  相似文献   

8.
BackgroundThe COVID-19 pandemic led to an abrupt shift to virtual health care for many patients, including adults with intellectual and developmental disabilities (IDD). Approaches to virtual care that are successful for people without IDD may need to be adapted for adults with IDD.ObjectiveThe aim of this scoping review was to examine what is known about virtual health care for adults with IDD and in particular, the impact of virtual delivery on access to care for this population.MethodsA comprehensive search was conducted of the academic and grey literature. A two-stage screening process was conducted by two independent reviewers and a structured data extraction template was populated for each included study. Findings were analyzed thematically using Access to Care Framework domains.ResultsIn total, 22 studies met inclusion criteria. The majority were published in the past three years and focused on specialized IDD services. A subset of 12 studies reported findings on access to care for adults with IDD. Participants generally reported high acceptability of virtual care, though some preferred face-to-face encounters. Initial results on effectiveness were positive, though limited by small sample sizes. Challenges included internet quality and technical skill or comfort.ConclusionsThis review suggests that it is possible to deliver accessible, high quality virtual care for adults with IDD, however, relatively little research has been conducted on this topic. Due to COVID-19 there is currently a unique opportunity and urgency to learn when and for whom virtual care can be successful and how it can be supported.  相似文献   

9.
Abstract

Background: The voices of those who have grown up in a family with maternal intellectual or developmental disability (IDD) are valuable for gaining an understanding of their situation, which is essential in order to be able to support these families and avoid potentially detrimental situations.

Aim: The study aim was to describe the experience of having grown up in a family where the mother has an IDD, with a focus on everyday life and perceived health consequences in adult life.

Method: A qualitative method with retrospective narrative interviews and narrative content analysis was chosen. In-depth interviews were performed with four women who had experiences of a childhood with maternal IDD.

Findings: Four themes emerged: Living under adverse circumstances; Dealing with one’s everyday life situation; Receiving insufficient support and wishing for more; and The echo from childhood into adult life. The findings revealed a distressing childhood, characterized by neglect, abuse, anxiety, and overburdening responsibilities, and also endeavors to keep the family situation a secret, while at the same time wanting the adult world to react.

Discussion: The findings can hopefully stimulate occupational therapists and other professionals to more effectively identify the situation of these children and provide support to prevent adverse future health conditions and poor well-being.  相似文献   

10.
BackgroundA majority of youth with Autism Spectrum Disorder (ASD) have disrupted sleep patterns, but there has been limited research examining factors associated with sleep in this population. Objective: The objective of this study was to compare demographic and lifestyle behaviors with sleep quality in youth with ASD. Methods: A total of 49 children (12.44 years; 78% male) with ASD wore the Actigraph GT9X accelerometer over seven days and nights to assess moderate to vigorous physical activity (MVPA), sedentary behavior (SB), total sleep duration, and sleep efficiency. Parents reported their child’s weekly amount of screen time and demographic information. Participants were classified according to whether they met sleep criteria for duration and efficiency (8–9 h of sleep duration and ≥85% sleep efficiency). T-tests and ANOVA were used to compare demographic and lifestyle factors between the groups. Results: Participants who meet both sleep duration and efficiency criteria had greater minutes of MVPA per day (113.65 min/day) than participants who only met sleep efficiency criteria (40.27 min/day) and participants who did not meet either sleep criteria (67.5 min/day; p < 0.0001). Additionally, participants who met both sleep criteria had fewer minutes of SB compared to those who only met sleep efficiency criteria (384.79 vs 526.05 min/day; p = 0.02). Conclusions: Youth who had indicators of good sleep quality had greater amounts of MVPA and lower amounts of SB. Studies should further examine the relationship between sleep and health behaviors in youth with ASD to determine causal mechanisms, leading to more effective sleep interventions.  相似文献   

11.
BackgroundChildren with intellectual and developmental disabilities (IDD) often experience increased barriers to engaging in physical activity (PA) which can stem from lack of gross motor function (GMF) development. Intervening on GMF at an early age can create better opportunities for children with IDD to engage in regular PA. In turn, increased PA can improve health outcomes and increase social skills.ObjectiveThe primary objective of this pilot study was to explore the effectiveness of a community-based GMF-focused PA intervention for improving overall motor skills and PA for children with IDD.MethodsAll study participants (n = 24) engaged in 10 weeks of programming for 1 h each week. A convenience sample was utilized.ResultsResults indicated no statistically significant changes pre to post for motor skill scores. However, a visual analysis of mean changes showed a consistent pattern of increased scores from pre to post on most skills. Additionally, we found that a change in participant locomotor skills significantly predicted change in Moderate to Vigorous Physical Activity (MVPA), F (1,11) = 5.16, Adj R2 = .26, p = .04.ConclusionsThese results suggest individualized attention on GMF may help to increase motor skills for children with IDD. This study adds to the small but growing amount of research examining the efficacy of community based adapted PA interventions. Further, study results should support continued exploration of effective approaches to address the motor delays experienced by children with IDD.  相似文献   

12.
BackgroundPeople with intellectual and developmental disabilities (IDD) are at disproportionate risk for severe COVID-19 outcomes, particularly those living in congregate care settings. Yet, there is limited data on vaccine perceptions in the disability community.ObjectiveTo explore COVID-19 vaccine perceptions in individuals with IDD, their family members, and those who work with them, to inform a statewide vaccine information and messaging project.MethodsA national survey, adapted in five languages for the IDD community, was distributed to a convenience sample of IDD organizations throughout New York State. Constructs included vaccine intention, reasons for vaccine hesitancy, and trusted sources of vaccine information. Zip code data were used to map respondent location and vaccine preferences.ResultsOf n = 825 respondents, approximately 75% intended to or had received the vaccine across roles (i.e., people with developmental disabilities, family members, direct care workers) and racial/ethnic groups. Greater vaccine hesitancy was reported in younger individuals and those making decisions on behalf of a person with IDD. Concerns included side effects and the swiftness of vaccine development. Black and Hispanic participants had heightened concerns about being an “experiment” for the vaccine. Trusted sources of information included healthcare providers and family members. Respondents who intended to/received the vaccine were dispersed throughout the state.ConclusionsVaccine preferences in this New York State disability community sample align with national data. Identified concerns suggest the need for community education that addresses misperceptions. Age and race differences in perspectives highlight the need for tailored education, delivered by trusted messengers.  相似文献   

13.
PurposeIn this study, we describe the characteristics of adolescents with mental health problems among those presenting to primary care clinics in urban areas.MethodsThe sample included 1,076 adolescents aged 12–18 years who presented to federally qualified community health clinics in urban cities in the Midwest. Bivariate and multivariate logistic regression analyses were conducted to examine the associations between having a mental health problem with demographic characteristics, health-related variables, and other risk and promotive factors. We also examined the use of health services and involvement in activities among those with mental health problems.ResultsApproximately 14% of adolescents screened positive for a mental health problem; among those with a mental health problem, 42.8% received mental health services in the past 3 months. In the multivariate logistic regression analysis, adolescents who were female, with poorer grades, fair to poor self-reported health, using drugs, and lower parental monitoring were more likely to have a mental health problem. In bivariate analyses, adolescents with mental health problems were less likely to participate in school activities and community activities and more likely to use emergency room services.ConclusionsAdolescents with mental health problems were more likely to have several other difficulties including poor grades, poor self-rated health, drug/alcohol use, and sexual activity. This study highlights the importance of screening youth with multidimensional needs and referring them to the appropriate services.  相似文献   

14.
BackgroundStudies have shown women with intellectual and developmental disabilities (IDD) have elevated risks of perinatal complications, but few studies have examined how social, health, and disability-related factors affect these risks.ObjectivesTo identify and describe subgroups of pregnant women with IDD according to social, health, and disability-related factors and examine the risks of perinatal complications in these subgroups compared to women without IDD.MethodsWe performed a population-based cohort study in Ontario, Canada, of women with (n = 1922) and without (n = 1,126,854) IDD, with a singleton birth in 2003–2018. We used latent class analysis (LCA) to identify subgroups of women according to social (e.g., age), health (e.g., chronic medical conditions), and disability-related (e.g., IDD type) characteristics. Modified Poisson regression was then used to compare the risks of hypertensive disorders of pregnancy, cesarean delivery, and preterm birth across identified subgroups to women without IDD.ResultsThe LCA identified 4 classes of women with IDD: (1) young women who were mostly healthy and had little primary care before pregnancy (n = 253); (2) older women who were mostly healthy (n = 795); (3) young to mid-aged women who had significant comorbidities (n = 181); and (4) young women, many of whom were autistic, who had some medical comorbidities and significant psychiatric comorbidities (n = 693). Class 3 consistently had the greatest risks of perinatal complications, across all IDD groups, compared to women without IDD.ConclusionsThese findings underscore the importance of multidisciplinary care approaches tailored to the needs of at-risk women with IDD, in the preconception and perinatal periods.  相似文献   

15.
BackgroundDespite possibly higher risk of severe outcomes from COVID-19 among people with intellectual and developmental disabilities (IDD), there has been limited reporting of COVID-19 trends for this population.ObjectiveTo compare COVID-19 trends among people with and without IDD, overall and stratified by age.MethodsData from the TriNetX COVID-19 Research Network platform was used to identify COVID-19 patients. Analysis focused on trends in comorbidities, number of cases, number of deaths, and case-fatality rate among patients with and without IDD who had a positive diagnosis for COVID-19 through May 14, 2020.ResultsPeople with IDD had higher prevalence of specific comorbidities associated with poorer COVID-19 outcomes. Distinct age-related differences in COVID-19 trends were present among those with IDD, with a higher concentration of COVID-19 cases at younger ages. In addition, while the overall case-fatality rate was similar for those with IDD (5.1%) and without IDD (5.4%), these rates differed by age: ages ≤17 – IDD 1.6%, without IDD <0.01%; ages 18–74 – IDD 4.5%, without IDD 2.7%; ages ≥75– IDD 21.1%, without IDD, 20.7%.ConclusionsThough of concern for all individuals, COVID-19 appears to present a greater risk to people with IDD, especially at younger ages. Future research should seek to document COVID-19 trends among people with IDD, with particular attention to age related trends.  相似文献   

16.
BackgroundThere is evidence from two US states that people with intellectual and developmental disabilities (IDD) are at more severe risk during the COVID-19 pandemic. Research has not explored whether this increased risk is consistent across the US.ObjectiveThis study compared COVID-19 case-fatality rates among people with IDD in 11 states and the District of Columbia that are publicly reporting data.MethodsCumulative data reported through March 31 – April 13, 2021 were analyzed. Case-fatality rates and risk ratio with 95% confidence intervals for IDD settings were compared the overall case-fatality rate for the jurisdictions from Johns Hopkins’ Center for Systems Science and Engineering COVID-19 data.ResultsSettings were reported as receiving any services, community or institutional residential services, or living in own/family home. Comparison of case-fatality rates between people with IDD and their respective jurisdiction populations demonstrates that case-fatality rates were consistently higher for people with IDD living in congregate residential settings (fifteen instances) and receiving 24/7 nursing services (two instances). Results were mixed for people with IDD living in their own or a family home (eight instances).ConclusionsThese findings highlight that people with IDD, especially those living in residential settings, are experiencing higher case-fatality rates from COVID-19 than the general population across multiple US jurisdictions. Short-term and long-term public health interventions addressing COVID-19 risks will not be able to properly address the needs of people with IDD until all states begin reporting COVID-19 outcomes for this population.  相似文献   

17.
BackgroundParents of youth with intellectual and developmental disabilities (IDD) may have a higher prevalence of overweight and obesity and poorer weight management behaviors compared to the general population.ObjectiveTo describe the prevalence of overweight/obesity and related socioeconomic and lifestyle factors including diet quality, physical activity, and reported health habits in parents of youth with IDD.MethodsWe assessed: BMI (kg/m2), moderate-to-vigorous physical activity (MVPA), fruit and vegetable intake (FVI), parental diet and physical activity habits, and socioeconomic characteristics. Associations of BMI on MVPA and FVI were assessed with Spearman's correlation; differences in BMI by parental diet and physical activity habits were assessed with Kruskall-Wallis tests; and the relationships of BMI to household income, race, and education were assessed with Kendall Tau-b and Mann Whitney U tests.ResultsData was obtained from 110 parents (97.3% female) who were study partners for their adolescents/young adults with IDD participating in a weight loss clinical trial. Approximately 81% of parents were overweight or obese (25.7% overweight, 55.1% obese), with 46.3% and 20% meeting the recommended U.S. guidelines for MVPA and FVI, respectively. Higher FVI and higher income were significantly associated with lower parent BMI. BMI was significantly lower in parents who reported to be physically active and choose healthy food.ConclusionWe observed a high prevalence of overweight/obesity, low FVI and low levels of MVPA in parents of adolescents with IDD. These observations suggest that interventions designed to address these factors have the potential to improve the health and wellbeing of both parents and adolescents with IDD.Clinical trials numberNCT02561754.  相似文献   

18.
BackgroundPeople with intellectual and developmental disabilities’ (IDD’s) health is largely dependent on the government services they receive. Medicaid managed care has emerged as one mechanism used to provide services to people with disabilities in an attempt to reduce costs. In managed care, there has been an emphasis on reducing emergency department visits and hospital admissions in an effort to reduce expenditures.ObjectiveThe purpose of this exploratory study was to examine the impact social determinants of health –“conditions in the environments in which people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks” (n.p.)1 – had on the emergency department utilization of people with IDD.MethodsWe had the following research question: what is the relationship between social determinants and emergency department utilization (visits) among adults with IDD? To explore this research question, a negative binomial regression analysis was used with secondary social determinant outcomes data (from Personal Outcome Measures®) and emergency department visit data from a random sample of 251 people with IDD. We also examined relationships with participants’ demographics.ResultsOur findings revealed for every one unit increase in the number of social determinant outcomes present, there was a 7.97% decrease in emergency department visits. There were also significant relationships between emergency department visits, and complex support needs, intellectual disability level, primary communication method, and residence type.ConclusionsSocial determinants are critical to promote the quality of life and health equity of people with IDD.  相似文献   

19.
BackgroundPatients with intellectual and developmental disabilities (IDD) are more likely to experience poor health outcomes and family physicians receive inadequate training to provide appropriate care to this patient group. Little prior research has studied how to effectively train family physicians to care for patients with IDD.ObjectiveThe aim of this pilot study was to assess the value of adding an experiential component to didactic education strategies to improve family medicine resident perceived comfort, skills and knowledge related to caring for patients with IDD.MethodsStructured education programs for residents were implemented at three primary care practices in Ontario, Canada. Two practices received didactic information only (didactic-only group); one received didactic information and an experiential training model including clinical interactions and a written reflection on that experience (didactic plus experiential group). In this separate-sample pre-post design, residents were invited to complete a brief anonymous survey prior to and following the training assessing their perceived comfort, skills and knowledge related to patients with IDD.ResultsAt baseline, there were no significant differences between the two groups of residents. At follow up, the experiential group reported significantly higher levels of comfort, skills, and knowledge compared to baseline for most items assessed, while in the didactic-only group most items showed little or no improvement.ConclusionThis pilot study suggests that providing residents the opportunity to participate in clinical encounters with patients with IDD, as well as a structured process to reflect on such encounters, results in greater benefit than didactic training alone.  相似文献   

20.
OBJECTIVES: We used data from birth certificates, Medicaid, and the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) to examine the relationship of child participation in WIC to Medicaid costs and use of health care services in North Carolina. METHODS: We linked Medicaid enrollment, Medicaid paid claims, and WIC participation files to birth certificates for children born in North Carolina in 1992. We used multiple regression analysis to estimate the effects of WIC participation on the use of health care services and Medicaid costs. RESULTS: Medicaid-enrolled children participating in the WIC program showed greater use of all types of health care services compared with Medicaid-enrolled children who were not WIC participants. CONCLUSIONS: The health care needs of low-income children who participate in WIC may be better met than those of low-income children not participating in WIC.  相似文献   

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