Search Results (17)

Background: Rare diseases are defined as clinical conditions that affect only a small number of persons in a population, considered fewer than 1 per 2000 in the European Union or fewer than 1 per 1600 in the United States They are serious, often chronic and progressive conditions, characterized by a pronounced clinical polymorphism that crosses all medical specialties. Multiple areas of life beyond just physical health are affected with significant impact on patients, families, and healthcare systems. Objective: To analyze the socio-demographic, medical, and vocational characteristics that correlate with functional status and work disability as a measure of quality of life in rare diseases. Methods: An observational retrospective study of adults with rare diseases evaluated for eligibility for social insurance rights in the National Institute of Medical Assessment and Work Capacity Rehabilitation Bucharest (INEMRCM, the Romanian abbreviation) over a 5-year period was made. Descriptive analysis was used to present sample characteristics. Means and standard deviations (SD) were calculated to describe numerical variables, frequencies were used to describe categorical variables, and logistic regression analysis was conducted to evaluate potential predictors of work capacity. All statistical analyses were performed by PSPP.3 software. p < 0.05 was the cut-off for statistical significance with a 95% confidence interval. Results: 90 consecutive persons were included in the survey. The mean age of the group was 44.5 years ± SD 10.61 years, with a female/male ratio of 48/42 persons. The mean disease duration was 10.61 years ± SD 9.76 years. Men had more severe disease (73.81%); p = 0.018 and significantly younger retirement age, M/F = 39.10 ± 12.26/43.06 ± 9.32; p = 0.037. Less disabling diseases were predominant autoimmune conditions (85.71% of cases); genetic conditions had a more severe functional impact in 63.75% of cases; p = 0.037. People with multisystem diseases but with specific or targeted treatment can work more frequently (76.19%); those with visual impairment have more severe impairments (73.77%); p < 0.001. All individuals who received specific therapy had a better functional status, unlike only 37.21% of those who received symptomatic treatment or treatment for complications; p = 0.023. Logistic regression analysis indicated that the type of impairment and the availability of specific treatments could serve as predictors of a reduced likelihood of employment in rare disease cases. Education level and occupation were not correlated with functional impairment and work disability (NS). Conclusions: Several factors, including some that are modifiable, were associated with better outcomes, such as reduced disability and an increased potential for work participation. Sex, disease etiology, type of impairment, and treatment were all significantly linked to functional capacity. Among these, the type of impairment and the availability of specific treatments might be predictors of employment. Addressing these parameters requires a multidisciplinary team, involving specialized care and comprehensive support services to improve the overall quality of life of individuals affected by rare diseases. Full article

Developmental coordination disorder (DCD/Dyspraxia) is a commonly misunderstood and under-recognized specific learning difficulty (SpLD) in educational settings. This lifelong condition affects fine and gross motor coordination and significantly interferes with many activities of daily living, academic achievement, and employment opportunities. However, most Higher Education Institutions (HEIs) are unaware of its prevalence within their context, even though 5% of the general population have DCD and the enrolment of students in UK Higher Education with a known disability has increased by 42.4% between 2018 and 2023. Thus, understanding the lived experiences of students with DCD within Higher Education in the UK remains a considerable gap in knowledge. Through the use of focus groups, the lived experiences of 10 students with DCD at two UK HEIs were investigated. The thematic analysis identified four main themes: ‘Awareness of DCD’, ‘Participation in Higher Education for individuals with DCD’, ‘Wellbeing’, and ‘Everyday living’. Students shared that HEIs appeared to lack awareness of DCD and felt they had an inability to specify the correct support at university. Importantly, whilst the students in the study were not always confident in identifying the specific support they needed, they shared the strategies they used to aid their university experience. The students described the physical toll that many everyday living tasks can take, which subsequently negatively impact academic participation and wellbeing. On a positive note, many of the students discussed positive experiences at university, such as enjoying their own autonomy (and flexibility) to be independent and inform strategies for their own learning. Importantly, the findings from this work highlight the complexity and heterogeneity of DCD and the need for a tailored approach to supporting individuals with this condition. Given the importance of educational qualifications to enter the workplace, and the contribution of employment to quality of life, these findings help signpost areas where HEIs can improve the experiences of students with DCD that may also enhance academic success. Full article

Employer disability confidence is a concept being used increasingly in employment interventions and policies targeting the demand side of the labour market to support the employment of people with disability. However, the concept is not well-defined and lacks a theoretical basis, inhibiting its application to best effect. This study aims to develop a conceptual model of employer disability confidence to fill in the definitional and theoretical gap in the current practice and literature. The paper presents a synthesis of the Theory of Planned Behaviour (TPB) and explores the literature that reports on use of TPB in disability employment contexts. We have applied the TPB to explain the concept of employer disability confidence. In the proposed framework, disability confidence is theorised to be the sum of the attitudes towards hiring people with disability, the perceived social expectations, and the perception of the employer and workplace of control over factors enabling and hindering employment of people with disability. Development of a theory-based and action-oriented framework for employer disability confidence could contribute to designing initiatives and interventions aimed at employers and workplaces to remove barriers to employment for people with disability, as well as understanding and assessing the effectiveness of implementation of such interventions. Full article

Background/Objectives: An individual socioeconomic status index (ISESI) was used to analyse inequalities in participation and colonoscopy acceptance in the Valencia Region Colorectal Cancer Screening Programme (VR-CRCSP). Methods: This is a cross-sectional study of men and women aged 50–69 who had been invited to participate in the VR-CRCSP as of February 2020 (N = 1,066,763). The variables included in the ISESI were nationality, employment status, disability, healthcare coverage, risk of vulnerability, and family size. The ISESI was categorised into quartiles (Qs), with Q4 corresponding to the lowest socioeconomic status (SES). Odds ratios (ORs) and 95% confidence intervals (CIs) were estimated using mixed logistic regression models. Results: The results showed that Q2 (OR = 1.30, CI = 1.28–1.33) and Q3 (OR = 1.07, CI = 1.05–1.09) are more likely to participate in the CRCSP than Q1 (the highest SES), and that Q4 (OR = 0.77, CI = 0.76–0.78) is less likely to participate than Q1. In addition, Q2 (OR = 2.03, CI = 1.78–2.32), Q3 (OR = 1.90, CI = 1.67–2.16), and Q4 (OR = 1.55, CI = 1.36–1.76) are more likely to accept a colonoscopy than Q1. The following socioeconomic characteristics were related to both non-participation and colonoscopy refusal: not Spanish, disabled, no family unit, at risk of social vulnerability, and private mutual health insurance. Conclusions: Inequalities were observed in VR-CRCSP participation and colonoscopy acceptance. Full article

Digital storytelling has been applied in research in varied contexts and with varied purposes. Implicit in the process of digital storytelling is the potential to develop and/or enhance a range of individual skills (e.g., multimedia, literacy, communication, etc.). However, further research is needed to gain a deeper understanding of the potential impact of digital storytelling on skill enhancement for disabled youth. This paper provides an overview of Phase 1 of the study “My life. My story: The Youth Digital Storytelling Project” that utilized elements of a community-based participatory action research approach to host a peer-facilitated digital storytelling workshop for young adults with developmental disabilities aimed at capturing and sharing their lived experiences with, knowledge of, and perspectives on significant life-stage transitions in the areas of education, employment, or living. The results from the pre- and post-workshop questionnaires suggest that the participants improved skills in media literacy, communication, and leadership. Additionally, the participants highlighted the importance of considering the delivery format, fostering connections, and enhancing self-confidence in the development of the workshop’s design and delivery. This research adds to the extant literature demonstrating the potential of digital storytelling as a pedagogical tool, offering implications for the design and implementation of online workshops for disabled youth. Full article

Adolescence is a developmental period of significant change and increasing independence, during which parents and caregivers play a critical role guiding their teen toward adulthood. Parents of adolescents with disability face heightened challenges managing their teens’ growing independence and shift to adult-based services across health, recreation, and employment. Using a mixed-methods-treatment-group-only design, this study explored the implementation and outcomes of a program designed to build parenting capacity to support their adolescent with disability. Parents enrolled in one of ten groups were invited to attend three sessions covering content tailored to adolescent development including post-school opportunities, financial support, risk-taking and decision-making, future planning, relationships, and mental health. Surveys were administered pre-program, post-program, and six months after program participation (n = 160) to measure intervention outcomes including parenting self-efficacy, self-advocacy, adolescent self-advocacy, parent confidence to support their adolescent’s growing independence, confidence to support their adolescent through sensitive developmental stages, parental hopes and aspirations, and parental empowerment. A subset of parents (n = 11) also participated in semi-structured interviews about the program’s acceptability and usefulness, and their satisfaction with the program content and delivery. All outcome variables except parent hopes and aspirations increased significantly from pre- to post-program. Parent self-efficacy, self-advocacy, and parental empowerment remained higher 6 months after program completion. Thematic analysis identified program strengths as the co-facilitation model of program delivery, practical and actionable content, the use of narratives and the facilitator’s lived experience as parents of adolescents with disability, the use of visualizations (video, pictures, diagrams), and the service provider’s trusted reputation and credibility. In conclusion, an online co-facilitated group program for parents of adolescents with disability can contribute to positive change for families by improving parent confidence, self-advocacy, and parental empowerment. Full article

Background: Disabled people in Vietnam are some of the most vulnerable to disadvantage. Employment involving microenterprises can provide economic empowerment and wealth generation. This qualitative study aims to address a gap in the literature regarding the establishment of microenterprises for physically disabled people in Vietnam. Method: Semi-structured interviews were undertaken with seven physically disabled individuals, including the founder and Director of ‘Company of Grace’ a non-governmental organisation with a mission to support physically disabled people in establishing their own microenterprises. Company of Grace (COG) supported six entrepreneurs in establishing microenterprises that provided English language instruction to school-aged children after regular school hours. Data were analysed utilising a framework that improves the probability of entrepreneurial success in developing countries. This framework aided in examining the approach of establishing microenterprises by the non-government organisation. Results: The physically disabled entrepreneurs reported earnings above average wages and feeling empowered by participating in the microenterprises. These feelings of empowerment were reportedly associated with greater independence, increased self-efficacy and confidence in planning for their futures. Conclusion: Microenterprises, exemplified by COG’s model, empowered disabled individuals to teach English, enhanced student engagement and fostered confidence and economic self-sufficiency among disabled entrepreneurs, thereby making a notable contribution to entrepreneurship for disability inclusion. Full article

It is widely recognized that work serves a dual role by not only ensuring financial independence but also functioning as a vital source of psychosocial well-being and contributing significantly to the attribution of meaning in life. The cost of work disability can be a multifactorial problem for both employers and workers; thus the inability to return to work (RTW) may have a destructive effect on mental health and confidence. Shoulder surgery is one of the conditions that inevitably impacts patients’ ability to work. As current data focus on restoring range of motion, strength, and the patients’ activity, to this day the data about RTW post shoulder surgery remain limited. The purpose of this study was to evaluate the return-to-work time of patients treated with an arthroscopic Bankart repair and to evaluate if patient-reported outcomes (PROM) correlate with the incapacity to work after an arthroscopic Bankart repair. We performed a retrospective review by conducting a questionnaire with patients more than 12 months after surgery and we identified 31 patients who met the criteria for the study and were able to contact 17 of them. In this paper we demonstrated that on average among groups working physically and at the office we may expect patients who underwent arthroscopic Bankart repair to return to work within 7 weeks from the surgery, with office workers tending to return significantly faster with an average of 2.5 weeks (p = 0.0239). Full article

This study aimed to increase the understanding of this disability disclosure of people with intellectual disability by examining the determinants of their disclosure at work. For this aim, six individuals with intellectual disability were interviewed, and consensual qualitative research (CQR) was used to identify factors related to their disability disclosure. As results, the factors that affect the disability disclosure were largely divided into personal variables and environmental variables, and various factors including confidence, disability severity, employment type, employers, co-workers, and organizational culture were mentioned. The results of this study can help people have better understanding about disability disclosure in employment settings. We also discuss how vocational education for individuals with intellectual disability should be offered. Full article

Despite legislation affirming the rights of people with intellectual disabilities to take equal part in society, marginalization persists. Accessibility needs can impact this group’s ability to engage in the digital society and in aspects of daily living, such as employment and socializing. The Digi-ID PLUS study was established with a team of seven people with an intellectual disability. Team members were hired as a diverse group to give insight into their lived experiences in reviewing and validating research findings. Their insights were key to every aspect of Digi-ID PLUS. It has been recognized that user-centered design enhances technology development and accessibility; therefore, the aim of establishing a Citizen Advisory Panel (CAP) in our program design and delivery is to include the critical role of users by experience to review, validate and test our solution to enhance the accessibility of all aspects of the program. Working with Digi-ID PLUS, the CAP spoke of the impact being paid team members had on their lives. Analysis of insights shared indicated that being a part of the team had a positive impact on their self-image confidence and digital skills acquisition CAP members discussed the importance of supporting each other and the value of being paid for their insights. Full article

Background: Dyslexia is a specific learning disability affecting around 1 in 10 Australian adults. It presents unique challenges for employees in the workforce, yet community and workplace awareness of the challenges of dyslexia is limited. The aim of this preliminary research was to explore the experiences and perspectives of Australian employers and managers responsible for supervising employees with dyslexia in the workplace. Materials and Methods: Using a qualitative research design, we conducted in-depth interviews with four managers who had current or previous experience managing employees with dyslexia. We used a deductive approach to analyse the data and categorise responses to the study questions. Results: Participant responses indicated that there is a lack of awareness and understanding of dyslexia within Australian workplaces. Participants identified challenges facing employees with dyslexia in the workplace including, differing personal levels of confidence and comfort in disclosing disability; the possibility of discrimination, and a lack of inclusive organisational practices and processes. Suggestions for ways to improve workplaces for dyslexic employees included: additional support for leaders and managers to drive inclusive leadership, and additional training for leaders and managers on how to best support employees with dyslexia. Conclusions: While only a small sample size, this study indicates that further research is needed to better understand the working environment of Australian leaders and managers. It appears that leaders and mangers need skills and knowledge to better support employees with dyslexia and in doing so create more inclusive workplaces. Full article

Despite efforts to integrate society, persons with disabilities (PWD) still experience considerable discrimination. Therefore, this study examined the association between experiences of discrimination and stress/depressive symptoms in wage working PWD. This study used data from the Panel Survey of Employment for the Disabled 2016–2018 in South Korea. This study included 1566 wage working PWD aged 15–64. The dependent variable was stress and depressive symptoms, and the independent variable was the experience of discrimination due to disability in daily life (Never, Rarely, Often, and Regularly) and the experience of discrimination at the workplace (0, 1, 2, ≥3). This study used a generalized estimating equations model to consider the repeated measurement data. Wage working PWD who experienced more discrimination in their daily life due to disability and at workplaces showed a higher odds ratio (OR) of stress and depressive symptoms than those who did not experience discrimination. As a result of the analysis including both discrimination experiences, those who always experienced discrimination due to disability in daily life had the highest OR to stress and depression (OR = 2.64, 95% Confidence Interval (CI): 1.37–5.08; OR = 4.96, 95% CI: 2.58–9.56, respectively). According to the experience at workplaces, wage working PWD who faced discrimination by two factors (OR = 1.66, 95% CI: 1.22–2.25) had the highest OR of stress, and those who experienced three or more factors had the highest OR of depressive symptoms (OR = 1.33, 95% CI: 0.83–2.11). Discrimination due to disability in daily life was more associated with the mental distress of working PWD than discrimination at workplaces. For the mental health of working PWD, not only policies or systems to eliminate discrimination in the workplace, but also overall social integration efforts based on improving awareness, are needed so that they do not experience discrimination in their daily life. Full article

This propensity-matched analysis utilized the publicly available Behavioral Risk Factor Surveillance System (2017–2019) data to compare the burden of disabilities among transgender/non-binary (TGNB) and cisgender groups. The groups were matched (1:1 ratio) on demographic variables using Nearest Neighborhood Matching. Categorical variables were compared among groups using a Chi-square analysis to test differences in the proportions. Multivariate logistic regression analysis was fit to predict the likelihood of the physical and mental disabilities among the TGNB group compared with the cisgender group while controlling for healthcare access factors, income, and employment. Survey weights were included in the model to account for the complex survey design. In a weighted sample of 664,103 respondents, only 2827 (0.4%) self-identified as TGNB. In the matched sample, a higher proportion of the TGNB group belonged to the low-income group (39.5% vs. 29.8%, p < 0.001), were unable to work (12.5% vs. 8.6%, p < 0.001), and delayed care due to cost barriers (19.0% vs. 12.4%, p < 0.001). Compared with the cisgender group, the odds of having difficulty making decisions were 1.94 times higher (95% CI: 1.67–2.27) and odds of difficulty walking were 1.38 times higher (95% CI: 1.19, 1.59) among the TGNB group. Additionally, the TGNB group had 59.8% higher adjusted odds ratio (aOR) (aOR 1.598, 95% Confidence interval (CI): 1.256, 2.034) of experiencing difficulty dressing and 83.3% higher odds (aOR 1.833, 95% CI: 1.533, 2.191) in having difficulty doing things alone. The findings of this study advocate for developing policies and interventions to deliver culturally competent care to the TGNB population with disabilities. Full article

This study investigated smoking behaviors by disability type among people with disabilities in Korea and identified factors associated with attempted smoking cessation and successful four-week smoking abstinence. Data were collected between 1 January 2018 and 31 December 2019. Predictors of attempted smoking cessation and successful four-week smoking abstinence were analyzed by disability type in 557 participants. Compared to people with mental health disorders, people with physical disabilities or brain lesions were more likely to attempt smoking cessation, and people with physical or internal disabilities were more likely to successfully abstain for four weeks. Common predictors of smoking cessation attempts and four-week abstinence were education level and CO level. Employment status predicted attempted cessation, while confidence in smoking cessation predicted four-week abstinence. To provide effective smoking cessation services for people with disabilities, disability type should be considered, and comprehensive and sustainable community-based programs need to be developed. Furthermore, a standardized survey of people with disabilities should be conducted to examine socioeconomic factors, including health status, employment, and education level, and to explore fundamental measures needed to address the problem of smoking among people with disabilities. Full article

The aim of this study was to explore the association between employment status and World Health Organization Disability Assessment Schedule, Second Edition (WHODAS 2.0) scores of working-age subjects with hearing impairment. The data of 18,573 working-age subjects (age ≥ 18 and <65 years) with disabling hearing impairment were obtained from the Taiwan Data Bank of Persons with Disability (TDPD) for the period from 11 July 2012 to 31 October 2018. Demographic data and WHODAS 2.0 scores for each domain were analyzed to identify their relationship with employment status. Unemployed subjects with disabling hearing impairment had higher WHODAS 2.0 scores in all domains compared with the employed subjects. Binary logistic regression revealed that older age, female sex, lower educational level, institutional residence, rural residence, lower family income, and moderate to severe impairment were more strongly associated with unemployment status. The data in this large population-based study offer comprehensive information on important factors associated with the employment status of people with disabling hearing impairment. Early identification of risks of unemployment of patients with hearing impairment can raise awareness for aggressive community and government campaigns regarding public health to improve the self-confidence, social participation, and related psycho-social wellbeing of people. Full article