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Access to human rights for persons using prosthetic and orthotic assistive devices in Sierra Leone
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Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.
Methods: Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone.
Results: About half of the participants considered their overall physical health good, while 37% said their mental health was bad. Most said they lacked access to medical care. About half of the participants had regular access to safe drinking water. Most had reasonable housing and 60% could read and write. Half of the participants were married and 70% had children. Almost all reported that they could vote if desired and about half were working.
Conclusions: There is still a need for improved access to medical care when needed for persons with lower limb physical disability in Sierra Leone. Better access to food and clean water are also necessary to facilitate a standard of living adequate for health, to realize the health rights of persons with disabilities.
Expectations management; employer perspectives on opportunities for improved employment of persons with mental disabilities in Kenya
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Purpose: In Kenya, the employment rate for persons with disabilities is about 1% compared to 73.8% for the general population, and the situation is even worse for persons with mental disabilities. Persons with mental disabilities are often regarded as “mad”, and stand little or no chance of employment. We undertook an exploratory study with employers and potential employers to understand factors that hinder or facilitate their employment and to gain insight into employers’ perceptions of mental disability.
Materials and methods: We adopted a mixed method study design, including in-depth interviews (n = 10) and questionnaires (n = 158) with (potential) employers in Kenya to explore the barriers and facilitators of employment for persons with mental disabilities.
Results: Out of the 158 employers who completed the questionnaire, only 15.4% had ever employed persons with mental disabilities. The perceptions that these persons are not productive and may be violent was associated with an unwillingness to employ them (OR: 10.11, 95%CI: 2.87–35.59 and OR: 3.6, 95%CI: 1.34–9.64, respectively). The possession of skills was the highest reported facilitator of employing persons with mental disabilities. Employers suggested that information about mental illness and the disclosure by prospective employees with mental disabilities are relevant for the provision of reasonable accommodation in the workplace.
Conclusion: Possession of skills and disclosure by persons with mental disabilities could improve their employability. Information targeted at all actors including employers, employees, government, and policymakers is necessary for balancing employers and employees expectations.
Is there really a “golden hour” for work disability interventions? A narrative review
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The subacute phase of low back pain has been termed as the “golden hour” to intervene to prevent work disability. This notion is based on the literature up to 2001 and is limited to back pain. In this narrative review, we examined whether the current literature indicate an optimal time for return to work (RTW) interventions. We considered randomized controlled trials published from 1997 to April 2018 assessing effects of occupational rehabilitation interventions for musculoskeletal complaints (15 included), mental health disorders (9 included) or a combination of the two (1 included). We examined participants’ sick leave duration at inclusion and the interventions’ effects on RTW. Most studies reporting an effect on RTW included participants with musculoskeletal complaints in the subacute phase, supporting that this phase could be a beneficial time to start RTW-interventions. However, recent studies suggest that RTW-interventions also can be effective for workers with longer sick leave durations. Our interpretation is that there might not be a limited time window or “golden hour” for work disability interventions, but rather a question about what type of intervention is right at what time and for whom. However, more research is needed. Particularly, we need more high-quality studies on the effects of RTW-interventions for sick listed individuals with mental health disorders.
Support persons’ views on remote communication and social media for people with communicative and cognitive disabilities
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Purpose: The purpose of this study was to explore support persons’ views on remote communication for persons with communicative and cognitive disabilities, and on factors enabling self-determination and participation.
Materials and methods: Five focus groups with 21 support persons were conducted. They were recorded and transcribed and data were analyzed qualitatively using focus group analysis methodology.
Results: The participants experience how remote communication can enable users to have increased control in their lives and how remote communication can enable self-determination and participation. Access to remote communication has a dual effect on safety. There are experiences about communicative rights of the users not being met and there is a need for better access to technology, information, and experts. There is also a need for more competence and coordination among staff and support to the users. Challenges emerge in the support persons’ dedication to the users’ right to communicate.
Conclusion: People with communicative and cognitive disabilities need access to remote communication in order to have control over their own lives and to achieve self-determination and participation in society. Support persons carry a large responsibility and can provide valuable insights of users’ communication situation.
Development of an evidence-based practice framework to guide decision making support for people with cognitive impairment due to acquired brain injury or intellectual disability
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Purpose: At least 5% of people in Australia and the USA have cognitive impairment and require support for decision-making. This paper details a research program whereby an evidence-based Support for Decision Making Practice Framework has been developed for those who support people with cognitive disabilities to make their own decisions across life domains.
Methods: The La Trobe framework was derived from a research program modeled on the Medical Research Council four-phase approach to development and evaluation of complex interventions. We completed phase one (development) by: (1) systematically reviewing peer-reviewed literature; and (2) undertaking qualitative exploration of the experience of support for decision-making from the perspectives of people with cognitive disabilities and their supporters through seven grounded theory studies. Results of phase two (feasibility and piloting) involving direct support workers and health professionals supported phase three (evaluation) and four (implementation), currently underway.
Results: The framework outlines the steps, principles, and strategies involved in support for decision-making. It focuses on understanding the will and preferences of people with cognitive disabilities and guides those who provide support including families, support workers, guardians, and health professionals.
Conclusions: This framework applies across diverse contemporary contexts and is the first evidence-based guide to support for decision-making.
Challenges of inclusion: a qualitative study exploring barriers and pathways to inclusion of persons with mental disabilities in technical and vocational education and training programmes in East Africa
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Purpose: To explore barriers and pathways to the inclusion of persons with mental and intellectual disabilities in technical and vocational education and training programmes in four East African countries, in order to pave the way to greater inclusion.
Materials and methods: An explorative, qualitative study including 10 in-depth interviews and a group discussion was conducted with coordinators of different programmes in four East African countries. Two independent researchers coded the interviews inductively using Atlas.ti. The underlying framework used is the culture, structure, and practice model.
Results: Barriers and pathways to inclusion were found in the three interrelated components of the model. They are mutually reinforcing and are thus not independent of one another. Barriers regarding culture include negative attitudes towards persons with mental illnesses, structural barriers relate to exclusion from primary school, rigid curricula and untrained teachers and unclear policies. Culture and structure hence severely hinder a practice of including persons with mental disabilities in technical and vocational education and training programmes. Pathways suggested are aiming for a clearer policy, more flexible curricula, improved teacher training and more inclusive attitudes.
Conclusions: In order to overcome the identified complex barriers, systemic changes are necessary. Suggested pathways for programme coordinators serve as a starting point.
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.
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.
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.
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
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.
Association between social factors and performance during Functional Capacity Evaluations: a systematic review
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Purpose: Determine the association of different social factors with Functional Capacity Evaluation (FCE) performance in adults.
Materials and methods: A systematic literature search was performed in MEDLINE, CINAHL, and PsycINFO electronic databases. Studies were eligible if they studied social factor’s association with the performance of adults undergoing FCE. Studies were assessed on methodological quality and quality of evidence. The review was performed using best-evidence synthesis methods.
Results: Thirteen studies were eligible and 11 social factors were studied. Considerable heterogeneity regarding measurements, populations, and methods existed among the studies. High quality of evidence was found for the association of FCE performance with the country of FCE and examiner’s fear behavior; moderate quality of evidence with previous job salary; and low or very low quality of evidence with compensation status, litigation status, type of instruction, time of day (workday), primary or mother language, and ethnicity. Other social factors were not studied.
Conclusions: Evidence for associations of various social factors with FCE performance was found, but robust conclusions about the strength of the associations cannot be made. Quality of evidence ranged from high to very low. Further research on social factors, also within a biopsychosocial context, is necessary to provide a better understanding of FCE performance.
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