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Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis
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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.
Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.
Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.
Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.
Working life trajectories with hearing impairment
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Purpose: The aim was to identify and explore factors, which facilitate or hinder work participation for people with hearing impairment.
Materials and methods: In-depth interviews with 21 hearing impaired individuals of 32–67 years of age with a present or recent vocational affiliation were conducted. The analysis was conducted using a grounded theory approach.
Results: The analysis resulted in a conceptual framework of working life trajectories evolving through three phases of acknowledgement of hearing loss impact: the pre-acknowledgement, acknowledgement, and post-acknowledgement phase. The phases were influenced by the qualities of three contexts: the personal, the workplace, and the service provider. The qualities of the contexts, together with the amount of time spent in a pre-acknowledgement phase, formed the trajectories towards continuation of work participation or towards a disconnection. Accumulated risk factors constituted increased likelihood of disconnecting trajectories, while accumulated facilitating factors supported sustainable trajectories.
Conclusions: The results revealed a need for extended support at the workplaces, which includes the manager, colleagues, and professionals in the aim of preventing exhaustion and facilitate work participation among employees with hearing impairments. Joint action in facilitating communicative participation would share the responsibility for accommodation measures and broaden the room for manoeuver at the workplace.
Making it work: experience of living with a person who falls due to multiple sclerosis
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Purpose: The purpose of this study was to describe how everyday life is experienced by next of kin sharing residence with a person who falls due to multiple sclerosis (MS).
Methods: Twenty face-to-face interviews were analysed using a qualitative content analysis.
Results: The overall theme “Making it work” represents the next of kin’s struggle to make life work. It comprises three themes: “Taking responsibility”, “Making adjustments”, and “Standing aside for someone else”. The two first themes reflect what relatives do to make the situation work, and the last theme represents what they give up.
Conclusion: Next of kin who share residence and everyday life with a person with MS are affected by that person’s occasional falls. They often take on the responsibility of preventing such falls and adapt their lives practically and emotionally. However, adaptation is neither always enough or always possible. In these cases, relatives often deprioritize their own needs and free time to make everyday life in the home work.
Nationwide implementation of a national policy for evidence-based rehabilitation with focus on facilitating return to work: a survey of perceived use, facilitators, and barriers
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Aim: The aim is to assess whether the national policy for evidence-based rehabilitation with a focus on facilitating return-to-work is being implemented in health-care units in Sweden and which factors influence its implementation.
Methods: A survey design was used to investigate the implementation. Data were collected at county council management level (process leaders) and clinical level (clinicians in primary and secondary care) using web surveys. Data were analyzed using SPSS, presented as descriptive statistics.
Results: The response rate among the process leaders was 88% (n = 30). Twenty-eight percent reported that they had already introduced workplace interventions. A majority of the county councils’ process leaders responded that the national policy was not clearly defined. The response rate among clinicians was 72% (n = 580). Few clinicians working with patients with common mental disorders or musculoskeletal disorders responded that they were in contact with a patient’s employer, the occupational health services or the employment office (9–18%). Nearly, all clinicians responded that they often/always discuss work-related problems with their patients.
Conclusions: The policy had been implemented or was to be implemented before the end of 2015. Lack of clearly stated goals, training, and guidelines were, however, barriers to implementation.
“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia
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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.
Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.
Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.
Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.
Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.
What do Dutch general education teachers do to facilitate the social participation of students with SEBD?
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Few studies have addressed the daily practice of applied teacher strategies aimed at facilitating the social participation of students with social-emotional problems or behavioural difficulties (SEBD). In this paper, we present two interlinked studies that address this topic. The main study reports on the development of the Teacher Strategy Questionnaire on Social Participation in the Classroom (TSQ-SPC). We tested the questionnaire’s construct validity by performing a second-order confirmatory factor analysis. The follow-up study presents the results of a survey of 163 Dutch general primary education teachers of inclusive classes using a modified version of the TSQ-SPC. It provides insights on the strategies that teachers apply in their daily practice to facilitate positive social participation of students with SEBD. The findings of both studies suggest that general primary education teachers apply a limited repertoire of strategies. Accordingly, there is an urgent need for further research focusing on the development of interventions and revisions of the pre- and in-service teacher development curricula aimed at adequately supporting and preparing general education teachers.
Analysing disability policy in Namibia: An occupational justice perspective
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Background: The Namibian disability policy of 1997 has not been reviewed for about 20 years, which has raised concerns with persons with disabilities and stakeholders in the fields of disability and rehabilitation. In March 2017, the government publicised its intention to review the policy. Thus, this study’s purpose was to generate evidence that can contribute to the development of a more current disability policy that will promote occupational justice.
Objectives: The aim of the study was to develop an alternative disability policy option for Namibia and to present outcomes and trade-offs using a policy analysis approach while applying the occupational justice framework to gather evidence.
Method: A qualitative research design and Bardach’s eightfold path approach to policy analysis were used. Critical disability theory provided the theoretical framework. The occupational justice framework was the conceptual framework for the study. Evidence from preceding phases of this study and appropriate literature was utilised to construct possible disability policy alternatives in Namibia, set evaluative criteria, project outcomes and confront trade-offs.
Results: Three main disability policy alternatives emerged: access policy, support policy and universal coverage policy. Access policy had the fewest trade-offs, and the support policy had the most trade-offs in the Namibian context. Access policy was projected to foster occupational participation among persons with disabilities.
Conclusion: Results have implications for selecting disability policy alternatives that promote occupational participation and justice among persons with disabilities in Namibia. Furthermore, the study has implications for advancing the practice of occupational justice in disability policy formulation.
Prioritizing barriers and solutions to improve employment for persons with developmental disabilities
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Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.
Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.
Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.
Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.
Key factors for the bicycle use of visually impaired people: a Delphi study
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Purpose: This study aims to identify the most important factors that influence the independent bicycle use of visually impaired people in the Netherlands.
Materials and methods: Both visually impaired people and professionals participated in a two-round online Delphi study (n = 42). In Round 1 the participants identified the factors which they ranked by relevance in Round 2.
Results: The participants prioritised environmental factors related to the traffic situation, the characteristics of the infrastructure, and weather and light conditions (Kendall’s W = 0.66). They indicated that the most influencing personal factors are related to personality, traffic experience, and personal background (W = 0.58). Glaucoma was ranked as the most relevant ophthalmic condition (W = 0.74), while glare was regarded as the most important factor with respect to the visual functions (W = 0.78).
Conclusions: The factors provided by this study can be used to optimise the independent cycling mobility of visually impaired people. More research is needed to investigate, both, how and to what extent the mentioned factors influence the cycling behaviour.
Severe-to-profound hearing impairment: demographic data, gender differences and benefits of audiological rehabilitation
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Purpose: The purpose of this study was to identify and report demographic data of patients with severe-to-profound hearing loss, assess participation in audiological rehabilitation and analyze the benefits of various rehabilitation methods.
Materials and methods: Data on 4286 patients with severe-to-profound hearing impairments registered in the Swedish Quality Register of Otorhinolaryngology over a period from 2006–2015 were studied. Demographic data, gender differences, audiological rehabilitation and benefits of the rehabilitation were analyzed.
Results: Group rehabilitation and visits to a hearing rehabilitation educator provided the most benefits in audiological rehabilitation. Only 40.5% of the patients received extended audiological rehabilitation, of which 54.5% were women. A total of 9.5% of patients participated in group rehabilitation, with 59.5% being women. Women also visited technicians, welfare officers, hearing rehabilitation educators, psychologists and physicians and received communication rehabilitation in a group and fit with cochlea implants significantly more often than did men.
Conclusions: The study emphasizes the importance of being given the opportunity to participate in group rehabilitation and meet a hearing rehabilitation educator to experience the benefits of hearing rehabilitation. There is a need to offer extended audiological rehabilitation, especially in terms of gender differences, to provide the same impact for women and men.
Everyday life in older men living alone – a complex view needing a biopsychosocial perspective
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Purpose: To explore how older men living alone, describe their everyday activities and their abilities as well as how they could be helped in everyday life.
Materials and methods: Qualitative semi-structured interviews were analysed with inductive content analysis. Eight men aged 65+ years were included. They were all living alone, albeit with home help services. They were able to walk and had sufficient cognitive ability.
Results: The analysis resulted in one theme “A driving force of managing activities and overcome hindering factors requires a broad spectrum of prerequisites for participating in everyday life” with the following four categories: Importance of everyday activities; individual prerequisites enabling everyday activities; body and mind inhibit, and react to the decreased, abilities; and importance of the environment.
Conclusions: The results generate a complex view of older men’s everyday life. It is important for older men’s independence that health care and rehabilitation staff adopt a comprehensive view and work from a biopsychosocial (BPS) perspective.
Employers’ views on disability, employability, and labor market inclusion: a phenomenographic study
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Purpose: This study aims to increase our understanding of employers’ views on the employability of people with disabilities. Despite employers’ significant role in labor market inclusion for people with disabilities, research is scarce on how employers view employability for this group.
Methods: This was a qualitative empirical study with a phenomenographic approach using semi-structured interviews with 27 Swedish employers from a variety of settings and with varied experience of working with people with disabilities.
Results: The characteristics of employers’ views on the employability of people with disabilities can be described as multifaceted. Different understandings of the interplay between underlying individual-, workplace-, and authority-related aspects form three qualitatively different views of employability, namely as constrained by disability, independent of disability, and conditional. These views are also characterized on a meta-level through their association with the cross-cutting themes: trust, contribution, and support.
Conclusions: The study presents a framework for understanding employers’ different views of employability for people with disabilities as a complex internal relationship between conceived individual-, workplace-, and authority-related aspects. Knowledge of the variation in conceptions of employability for people with disability may facilitate for rehabilitation professionals to tailor their support for building trustful partnerships with employers, which may enhance the inclusion of people with disabilities on the labor market.
‘We need “culture-bridges”: professionals’ experiences of sex education for pupils with intellectual disabilities in a multicultural society
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This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.
Target population’s requirements on a community-based intervention for stimulating physical activity in hard-to-reach physically disabled people: an interview study
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Purpose: To explore ideas of the target population about a community-based intervention to stimulate physical activity in hard-to-reach physically disabled people.
Materials and methods: Semi-structured interviews were performed with 21 physically disabled people, and analyzed using thematic analyses. Findings were interpreted using the integrated Physical Activity for People with a Disability and Intervention Mapping model.
Results: The intervention should aim to stimulate intrinsic motivation and raise awareness for the health effects of physical activity. It should provide diverse activities, increase visibility of these activities, and improve image of physical activity for physically disabled people. Participants suggested to provide individual coaching sessions, increase marketing, present role models, and assign buddies. Potential users should be approached personally through intermediate organizations, or via social media and word of mouth promotion. Participants suggested that users, government, sponsors, and health insurers should finance the intervention. Self-responsibility for being physically active was strongly emphasized by participants.
Conclusions: An intervention to stimulate physical activity in hard-to-reach physically disabled people should be individualized, include personal support, and should include marketing to improve image of physical activity of physically disabled people. The intervention that fulfills these requirements should be developed and tested for effects in future research.
Gender and diagnostic impact on everyday technology use: a differential item functioning (DIF) analysis of the Everyday Technology Use Questionnaire (ETUQ)
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Background: As the use of everyday technology is increasingly important for participation in daily activities, more in-depth knowledge of everyday technology use in relation to diagnosis and gender is needed. The purpose of this study was to investigate the stability of the perceived challenge of a variety of everyday technologies across different samples of varying diagnoses including both males and females.
Methods: This cross-sectional study used 643 data records from clinical and research samples, including persons with dementia or related disorders, acquired brain injury, intellectual disability, various mental or medical disorders, and adults without known diagnoses. The Everyday Technology Use Questionnaire, comprising 93 everyday technology artifacts and services (items) measuring the level of everyday technology challenge and relevance of and perceived ability to use these was used for data gathering. A two-faceted Rasch model in combination with differential item functioning (DIF) analyses were used for comparing item hierarchies across samples.
Results: Only three items (3.2%) demonstrated a clinically relevant DIF by gender, and nine items (9.7%) by diagnosis.
Discussion: The findings support a stable hierarchy of everyday technology challenge in home and community that can facilitate planning of an accessible and inclusive society from a technological departure point
The intersection of disability and food security: Perspectives of health and humanitarian aid workers
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Background: Most people with disabilities the world over can be found in the Majority (or ‘economically developing’) World. This is also where most of the world’s hungry and malnourished are found. We argue that the intersectionality between disability and nutrition may best be understood through a food security framework, and we position all people living with disability, including those experiencing feeding and swallowing disabilities, as at risk for food insecurity, especially those living in humanitarian emergency contexts.
Objectives: This study aimed to explore and describe the knowledge and experience of humanitarian aid workers (HAWs) and health care professionals (HCPs) in food assistance contexts with regard to the nutrition and food security of people living with disabilities.
Method: In this exploratory, descriptive study, 16 participants with experience in sub-Saharan Africa and Southern Asia participated in an online survey. Three survey participants with extensive experience were also interviewed. Data analysis involved descriptive statistics and thematic content analysis.
Results: Results revealed that participants had generally low levels of exposure to and experience with disability, including swallowing and feeding disorders.
Conclusions: Reduced knowledge of HAWs and HCPs regarding disability and the lack of professionals such as speech–language therapists, who manage disability-specific issues such as feeding and swallowing disorders, may affect the food security of people living with disabilities in food assistance contexts.
Hearing children of Deaf parents: Gender and birth order in the delegation of the interpreter role in culturally Deaf families
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Background: Culturally, hearing children born to Deaf parents may have to mediate two different positions within the hearing and Deaf cultures. However, there appears to be little written about the experiences of hearing children born to Deaf parents in the South African context.
Objective: This study sought to investigate the roles of children of Deaf adults (CODAs) as interpreters in Deaf-parented families, more specifically, the influence of gender and birth order in language brokering.
Method: Two male and eight female participants between the ages of 21 and 40 years were recruited through purposive and snowball sampling strategies. A qualitative design was employed and data were collected using a semi-structured, open-ended interview format. Themes which emerged were analysed using thematic analysis.
Results: The findings indicated that there was no formal assignment of the interpreter role; however, female children tended to assume the role of interpreter more often than the male children. Also, it appeared as though the older children shifted the responsibility for interpreting to younger siblings. The participants in this study indicated that they interpreted in situations where they felt they were not developmentally or emotionally ready, or in situations which they felt were better suited for older siblings or for siblings of another gender.
Conclusion: This study highlights a need for the formalisation of interpreting services for Deaf people in South Africa in the form of professional interpreters rather than the reliance on hearing children as interpreters in order to mediate between Deaf and hearing cultures.
Compliance with standards of practice for health-related rehabilitation in low and middle-income settings: development and implementation of a novel scoring method
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Purpose: To (A) develop a method for measuring compliance with standards, and (B) implementation of the method in 12 rehabilitation centers in six low and middle-income countries (LMICs).
Methods: In part A, existing standards were compiled and operationalized into scores, organized into 5 ‘scorecards’ and 15 ‘sub-scorecards’, then tested and refined in an iterative process. In part B, 12 rehabilitation centers in 6 countries implemented the standards using the new method, revealing relative performance between centers, and across different standards. Internal consistency of scores within domains was computed using Chronbach’s alpha.
Results: A standardized method for scoring compliance with standards for rehabilitation was developed. The method evaluated compliance with standards in five domains of practice: user focused approach, service outputs, finances, staff, and general management. Multiple standards within domains were strongly related, with Chronbach’s alpha >0.80 for all but the equipment and supplies domain. Overall, in the 12 rehabilitation centers examined, 36% of standards were met or exceeded. Compliance within each scoring domain was 56% (user-focused approach), 38% (service outputs), 27% (financial management), 30% (staff management), and 33% (general management). Two out of 12 (17%) of centers met more than two-thirds of the standards, 3 (25%) met more than one-third of standards, while the remaining 7 (58%) met less than one-third of standards.
Conclusions: A new, standardized method for measuring performance of rehabilitation services in LMICs was developed. The method examines standards in five rehabilitation practice domains, and can be used to understand barriers to quality performance, particularly in resource-constrained settings. Implementation of the method demonstrated that current compliance with standards is modest. Ongoing interest in new standards for rehabilitation practice should be accompanied by measures to ensure they are used to strengthen quality in an emerging rehabilitation sector.
Dyslexic learners’ experiences with their peers and teachers in special and mainstream primary schools in North-West Province
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Background: Inclusive education requires that the framework within which education is delivered should be broad enough to accommodate equally the needs and circumstances of every learner in the society. This includes learners with disabilities like dyslexia who have been excluded from the formal education system. This article reports the findings of a qualitative study that explored and described the dyslexic learners’ experiences with their peers and teachers in special and public schools in North-West Province of South Africa.
Methods: The study adopted a qualitative methodology and used a phenomenology research design. The sample was purposively selected and comprised nine dyslexic learners. All the learners were in public schools previously and were later moved to a special school after being diagnosed as dyslexic. The participants were aged 9–12 years. The researchers conducted one-on-one interviews with the participants and content-analysed the data.
Findings: The findings revealed that in public schools the dyslexic learners were exposed to ill-treatment by other learners who despised, ridiculed, bullied and undermined them. The findings further revealed that teachers in public schools were not patient with dyslexic learners, did not give them extra attention and that some teachers used negative comments that embarrassed them.
Conclusion: The article spells out the barriers experienced by dyslexic learners in public schools and also recommends training of teachers so that they know how to deal with dyslexic learners, thereby eliminating the barriers. The study further recommended awareness campaigns among the student body about dyslexia.
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