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Journal of Genetic Counseling Dec 2023The genetic counseling (GC) community has faced criticism about the duality of promoting patient autonomy while also advocating for individuals with disabilities. This...
The genetic counseling (GC) community has faced criticism about the duality of promoting patient autonomy while also advocating for individuals with disabilities. This study assessed the attitudes of the disability community and GCs to identify content that should be included in GC disability education and evaluate the landscape of GC disability education. Members of the disability community and GCs completed an electronic survey distributed through electronic listservs and partnering organizations. A total of 672 responses were analyzed from both the disability community (n = 596) and the GC community (n = 76). Members of the disability community noted differences in GC comfort level discussing different aspects of disability with GCs being perceived as being very knowledgeable about medical aspects 71% of the time versus 49% of the time when discussing social/lifestyle aspects of disability. This discordance was reflected in GCs reported comfort level in discussing medical aspects (89%) and social aspects of disability (65%) during a session. Most GC respondents (71%) felt they received adequate knowledge during their disability education and variation was reported in the execution of disability education by training programs. Disability education content recommendations from the disability community and GCs included emphasizing four key aspects of disability: medical, social/lifestyle, lived experience, and the disability rights movement. Respondents of both cohorts stressed the inclusion of and exposure to persons with disabilities in disability education to understand the lived experience of persons with disabilities. The disability community identified additional disability education content to be included such as empathy training, family hardships, and mental health. The results of this study have practice implications and provide a foundation for training expectations to ensure future GCs possess the necessary skills to improve the quality of services provided to families and persons with disabilities.
Topics: Humans; Counselors; Disabled Persons; Genetic Counseling; Surveys and Questionnaires
PubMed: 37877329
DOI: 10.1002/jgc4.1800 -
The Journal of Rural Health : Official... Sep 2019Disabilities are not evenly distributed across geography or age, yet few studies on disability have considered these factors. The purpose of this study was to explore...
BACKGROUND
Disabilities are not evenly distributed across geography or age, yet few studies on disability have considered these factors. The purpose of this study was to explore rural-urban differences in disability rates, particularly related to gender and race, and what other rural-urban disparities help explain these differences.
METHODS
Utilizing the 2008-2016 Current Population Survey (CPS), we first examined rural and urban disability trends by gender and race, estimating means and rural-urban percentage differences for men and women by race and conducting t test analysis to test group differences by age cohort (eg, comparing white, non-Hispanic, rural 15- to 24-year-old women to white, non-Hispanic, urban 15- to 24-year-old women). We then conducted a logistic regression to explore whether or not the effects of rurality on disability rates could be explained by rural-urban differences in demographic and socioeconomic characteristics.
RESULTS
Descriptively, rural people report disability at higher rates than urban people across nearly all age category, gender, and racial combinations. These differences are more pronounced for nonwhite respondents in middle to older age categories. Additionally, while some of the rural disability disparity can be explained by adding demographic and socioeconomic variables to the logistic regression model, the effect of rurality remains significant.
CONCLUSIONS
Our findings suggest that when researchers, policy makers, and service providers are addressing rural and urban differences in health and well-being, self-reported disability is another factor to consider. Future work should be mindful of how disability and space intersect with gender and race, creating significant disparities for people of color in rural places.
Topics: Adolescent; Child; Child, Preschool; Disabled Persons; Female; Humans; Logistic Models; Male; Rural Population; Urban Population
PubMed: 30566272
DOI: 10.1111/jrh.12338 -
JPMA. the Journal of the Pakistan... Dec 2022In the developed societies, supportive environmental, physical and social conditions enable participation of persons with disabilities in the mainstream through actions,... (Review)
Review
In the developed societies, supportive environmental, physical and social conditions enable participation of persons with disabilities in the mainstream through actions, like provision of ramps and reserved parking. In contrast, in the developing countries like Pakistan, with focus on visual disability, years lost to disabilities compromise and restrict the productive life span of the disabled. The current narrative review was planned to highlight the perspective of disability in the context of Pakistan to bring to limelight the issues requiring immediate focus of the health authorities and the government through a holistic and sustainable approach. Of the 177 publications found on literature search, 33(%) English-language, full-text studies were reviewed. To address disability issues, long-term sustainable actions, like health reforms, including ensuring availability of rehabilitation professionals in hospitals, legislative reforms to initiate relevant legislations, capacity-building of persons with disabilities, including their mainstreaming, are deemed essential.
Topics: Humans; Pakistan; Disabled Persons; Policy
PubMed: 37246676
DOI: 10.47391/JPMA.5090 -
Age and Ageing Aug 2020frailty and disability are very common in older adults; they share some risk factors and pathophysiological mechanisms. Yet, they are different clinical entities.
BACKGROUND
frailty and disability are very common in older adults; they share some risk factors and pathophysiological mechanisms. Yet, they are different clinical entities.
OBJECTIVES
this study aimed to explore a potential hierarchical relationship between frailty and disability along the continuum of the disablement process.
DESIGN
prospective cohort study.
SETTING
the French Three-City (3C) study.
SUBJECTS
the sample included 943 participants aged 75 and older.
METHODS
the Fried frailty phenotype, Instrumental Activities of Daily Living (IADL) and basic Activities of Daily Living (ADL) were used. We distinguished between four mutually excluding groups: (i) robust (no frailty and no disability); (ii) pure frailty (no disability); (iii) frailty with IADL disability (no ADL disability) and (iv) frailty with IADL and ADL disabilities. We used Cox's regression models to study the 4-year mortality risk associated with each status.
RESULTS
Eight-two per cent of participants were classified according to the assumed hierarchy: 61.3% was robust, 5.4% frail, 10.5% frail and IADL-disabled and 4.8% frail, IADL and ADL-disabled. An extra group of 17% was identified with IADL-disabled individuals without frailty. This extra group was similar to pure frailty in terms of characteristics and risk of death, placing them along the continuum at an intermediate stage between robustness and the two most disabled sub-groups.
CONCLUSIONS
our findings suggest that including frailty along the continuum could be relevant to describe the whole disablement process. Frailty would occur upstream of the process and might be relevant to identify an opportune time window, where specific monitoring and clinical interventions could be implemented in order to interrupt the process at a potentially more reversible stage.
Topics: Activities of Daily Living; Aged; Disabled Persons; Frail Elderly; Frailty; Humans; Prospective Studies
PubMed: 32365166
DOI: 10.1093/ageing/afaa031 -
Disability and Health Journal Jul 2024
Topics: Humans; Disabled Persons; Rehabilitation; Periodicals as Topic; Health Policy; United States
PubMed: 38839557
DOI: 10.1016/j.dhjo.2024.101644 -
Rehabilitation Psychology Nov 2020To inform the field of rehabilitation psychology about the impacts of the 2019 novel coronavirus (COVID-19) on the disability community in the United States and the... (Review)
Review
PURPOSE
To inform the field of rehabilitation psychology about the impacts of the 2019 novel coronavirus (COVID-19) on the disability community in the United States and the additional sources of stress and trauma disabled people face during these times.
METHOD
A review of the literature on disability and COVID-19 is provided, with an emphasis on sources of trauma and stress that disproportionately impact the disability community and the ways in which disability intersects with other marginalized identities in the context of trauma and the pandemic. We also reflect on the potential impacts on the field of psychology and the ways in which psychologists, led by rehabilitation psychologists, can support disabled clients and the broader disability community at both the individual client and systemic levels.
RESULTS
The COVID-19 pandemic introduces unique potential sources of trauma and stress within the disability community, including concerns about health care rationing and ableism in health care, isolation, and the deaths and illnesses of loved ones and community members.
CONCLUSIONS/IMPLICATIONS
Rehabilitation psychologists and other professionals should be aware of the potential for trauma and stress among disabled clients and work with them to mitigate its effects. Additionally, psychologists should also work with the disability community and disabled colleagues to address systemic and institutional ableism and its intersections with other forms of oppression. (PsycInfo Database Record (c) 2021 APA, all rights reserved).
Topics: COVID-19; Disabled Persons; Humans; Pandemics; SARS-CoV-2; Stress, Psychological; United States; Wounds and Injuries
PubMed: 33119381
DOI: 10.1037/rep0000368 -
International Journal For Equity in... Jan 2021Equity and inclusion are important principles in policy development and implementation. The aim of this study is to explore the extent to which equity and inclusion were...
BACKGROUND
Equity and inclusion are important principles in policy development and implementation. The aim of this study is to explore the extent to which equity and inclusion were considered in the development of Malawi's National Disability Mainstreaming Strategy and Implementation Plan.
METHODS
We applied an analytical methodology to review the Malawi's National Disability Mainstreaming Strategy and Implementation Plan using the EquIPP (Equity and Inclusion in Policy Processes) tool. The EquIPP tool assesses 17 Key Actions to explore the extent of equity and inclusion.
RESULTS
The development of the Malawi National Disability Mainstreaming Strategy and Implementation Plan was informed by a desire to promote the rights, opportunities and wellbeing of persons with disability in Malawi. The majority (58%) of the Key Actions received a rating of three, indicating evidence of clear, but incomplete or only partial engagement of persons with disabilities in the policy process. Three (18%) of the Key Actions received a rating of four indicating that all reasonable steps to engage in the policy development process were observed. Four (23%) of the Key Actions received a score five indicating a reference to Key Action in the core documents in the policy development process.
CONCLUSIONS
The development of disability policies and associated implementation strategies requires equitable and inclusive processes that consider input from all stakeholders especially those whose wellbeing depend on such policies. It is pivotal for government and organisations in the process of policy or strategy development and implementation, to involve stakeholders in a virtuous process of co-production - co-implementation - co-evaluation, which may strengthen both the sense of inclusion and the effectiveness of the policy life-cycle.
Topics: Community Participation; Disabled Persons; Health Policy; Humans; Malawi; Policy Making; Vulnerable Populations
PubMed: 33413443
DOI: 10.1186/s12939-020-01378-y -
Journal of the American Medical... Jul 2024This study aimed to examine reciprocal and dynamic associations between Social Isolation (SI), loneliness, and disability among Chinese older adults.
OBJECTIVES
This study aimed to examine reciprocal and dynamic associations between Social Isolation (SI), loneliness, and disability among Chinese older adults.
DESIGN
This is a prospective cohort study.
SETTING AND PARTICIPANTS
The global trend of population aging has resulted in a significant rise in the prevalence of disabilities, SI, and loneliness among older adults. These factors can severely impact the health and well-being of older adults. Therefore, it is crucial to implement more efficient interventions aimed at reducing disabilities, addressing SI, and combating loneliness among older adults in order to improve their overall health and well-being.
METHODS
Using a large, nationally representative sample spanning 16 years, we employed the general cross-lagged panel model to explore the relationships among 50,348 older adults with a mean age of 81.83 at baseline. Disability was measured by a comprehensive index tool that incorporated multiple dimensions. SI was measured using an SI index, and loneliness was evaluated using a single-item measure.
RESULTS
SI emerged as a stronger predictor of disability than loneliness. Longitudinal analysis revealed accumulative disadvantages in the association between SI and disability. Additionally, disability was found to contribute to increased SI and loneliness. However, our study did not detect any variance in the strength of the cross-lagged effects between social isolation and disability.
CONCLUSIONS AND IMPLICATIONS
The findings suggest that reducing SI is crucial for reducing disability among older adults. Initiating early interventions to minimize initial SI could aid in preventing later-life disability. Additionally, addressing disabilities may positively impact the reduction of loneliness and SI within this population.
Topics: Humans; Loneliness; Social Isolation; Male; Female; Prospective Studies; Aged; Disabled Persons; Aged, 80 and over; China; East Asian People
PubMed: 38583487
DOI: 10.1016/j.jamda.2024.02.013 -
Rehabilitation Psychology Aug 2022Purpose/Objective Research: Stigma is a common experience for people with disabilities. Stigmatization may lead to disparities in education, employment, and health care,...
UNLABELLED
Purpose/Objective Research: Stigma is a common experience for people with disabilities. Stigmatization may lead to disparities in education, employment, and health care, quality of life, and psychological distress. This study's purpose was to (a) determine the relationship between number of disability conditions and stigma for adults with disabilities; and (b) examine whether identifying as a person with a disability, noticeability of a disability or gender moderate relationship between number of disability conditions and stigma.
RESEARCH METHOD/DESIGN
We conducted secondary analyses of data from the Disability Health Identity survey, originally collected in 2017 ( = 711).
RESULTS
Multivariable linear regression analysis indicated the association between number of disability conditions and stigma was not significant (.567). However, the association between number of disability conditions and stigma was modified by noticeability ( = .007). The relationship between number of disability conditions and stigma was stronger for people with more noticeable disabilities.
CONCLUSION/IMPLICATIONS
This research is important because it increases understanding of factors that may play a role in stigma experiences for people with disabilities. (PsycInfo Database Record (c) 2022 APA, all rights reserved).
Topics: Adult; Disabled Persons; Employment; Humans; Quality of Life; Social Stigma; Stereotyping
PubMed: 35420866
DOI: 10.1037/rep0000446 -
International Journal of Environmental... Oct 2022Active tourism improves human health and well-being regardless of age or disabilities. The paper analyses and describes current issues concerning the tourism of people... (Review)
Review
Active tourism improves human health and well-being regardless of age or disabilities. The paper analyses and describes current issues concerning the tourism of people with disabilities. The starting point is the currently insufficient availability of tourist offers for individuals with considerable motor dysfunctions. One of the causes for these limitations stems from deficiencies in transport means for people with disabilities. It was found that for a disabled passenger using public transport, it is crucial to consider its accessibility in the context of the entire transport system. Another cause is the limited popularity of innovative, atypical assistive equipment for people with disabilities. Those insights point out that novel assistive technologies need to be developed, as it is necessary to more effectively support the activity of people with disabilities in all areas of life, including tourism, as this enhances their social rehabilitation. This paper indicates the needs and describes and analyses examples of own original, innovative devices supporting the areas mentioned above of activity for people with disabilities. These analyses resulted in developing an algorithm to design innovative equipment, considerably expanding the tourism potential of people with motor disabilities. This design process focuses on the needs of people with disabilities and facilitates the development of novel classes of assistive technologies, thus promoting new areas of activity for all.
Topics: Humans; Tourism; Self-Help Devices; Disabled Persons
PubMed: 36361066
DOI: 10.3390/ijerph192114186