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Impact of transition to an individualised funding model on allied health support of participation opportunities
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Introduction: The National Disability Insurance Scheme is the new consumer-controlled funding system for people with disability in Australia, and is expected to enhance participation outcomes of people with disability. This research explored participation opportunities for people with disability during the formative period of transition to the scheme, through stakeholder accounts of changes in allied health service contexts.
Materials and methods: Qualitative data were generated during interviews, workshops and meetings with industry, policy, practice and education stakeholders involved in scheme services. Inductive coding explored key themes within the data. The International Classification of Functioning model was then applied as a deductive coding framework to illuminate how the scheme was perceived to be impacting participation opportunities for recipients of scheme funding.
Results and discussion: Using the International Classification of Functioning helped us illuminate whether changes resulting from scheme transition posed participation opportunities or barriers for scheme recipients. Research participants often framed these changes negatively, even when examples suggested that changes had removed participation barriers for scheme recipients. Some participants viewed changes as obstructing equitable and quality professional practice. We explore potential opportunities to resolve tensions that also optimise the participation outcomes of individuals who receive services through individualised funding.
Documentation of everyday life and health care following gastrostomy tube placement in children: a content analysis of medical records
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Background: Everyday routines play a vital role in child functioning and development. This study explored health professionals’ documentation of everyday life and health care during the first year following gastrostomy tube placement in children and the content of intervention goals.
Methods: The medical records of 39 children (median age 38 months, min–max: 15–192) in one region of Sweden were analysed. A content analysis approach was used with an inductive qualitative analysis supplemented by a deductive, quantitative analysis of documented intervention goals following the ICF-CY.
Results: One overall theme, “Seeking a balance”, captured the view of life with a gastrostomy and the health care provided. Two categories, “Striving for physical health” and “Depicting everyday life” with seven sub-categories, captured the key aspects of the documentation. Twenty-one children (54%) had intervention goals related to the gastrostomy, and these goals primarily focused on the ICF-CY component “Body functions”.
Conclusions: To some extent the medical records reflected different dimensions of everyday life, but the intervention goals clearly focused on bodily aspects. Understanding how health care for children using a gastrostomy is documented and planned by applying an ecocultural framework adds a valuable perspective and can contribute to family-centred interventions for children using a gastrostomy.
Identifying and validating housing adaptation client profiles – a mixed methods study
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Purpose: An increasing number of people will live with disabilities in their homes and consequently, the need for home-based interventions will increase. Housing adaptations (HAs) are modifications to the physical home environment with the purpose to enhance independence for a heterogeneous group of people. Increasing the knowledge of the characteristics of HA clients by exploring their heterogeneity, could facilitate the planning of interventions and allocation of resources. The purpose of this article was to identify and validate HA client profiles.
Materials and methods: This cross-sectional study applied a mixed methods design to identify profiles of HA clients through cluster analysis confirmed by qualitative interview data. The sample consists of 241 HA clients in Sweden with a mean age of 75.1 years.
Results: A classification into five groups emerged as the one best describing the heterogeneity of characteristics among this sample of clients. Five client profiles were outlined based on their age and level of disability, and the variation between the profiles was confirmed through the qualitative interview data.
Conclusions: The identified client profiles are a step towards a better understanding of how home-based interventions could be delivered more effectively to groups of HA clients, based on their different characteristics.
Adding meaning to physical fitness test results in individuals with intellectual disabilities
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Purpose: Evaluating physical fitness in individuals with intellectual disabilities (ID) is challenging, and a multitude of different versions of tests exist. However, psychometric properties of these tests are mostly unknown, and both researchers as clinical practitioners struggle with selecting appropriate tests for individuals with ID. We aim to present a selection of field tests with satisfactory feasibility, reliability, and validity, and of which reference data are available.
Methods: Tests were selected based on (1) literature review on psychometric properties, (2) expert meetings with physiotherapists and movement experts, (3) studies on population specific psychometric properties, and (3) availability of reference data. Tests were selected if they had demonstrated sufficient feasibility, reliability, validity, and possibilities for interpretation of results.
Results: We present a basic set of physical fitness tests, the ID-fitscan, to be used in (older) adults with mild to moderate ID and some walking ability. The ID-fitscan includes tests for body composition (BMI, waist circumference), muscular strength (grip strength), muscular endurance (30 second and five times chair stand), and balance (static balance stances, comfortable gait speed).
Conclusions: The ID-fitscan can be used by researchers, physiotherapists, and other clinical practitioners to evaluate physical fitness in adults with ID. Recommendations for future research include expansion of research into psychometric properties of more fitness tests and combining physical fitness data on this population in larger datasets.
The ‘compliant’, the ‘pacified’ and the ‘rebel’: experiences with Swiss disability insurance
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Switzerland’s social policies in the field of disability have been significantly reshaped over the last two decades by reducing the number of allowances awarded and by increasing the recourse to vocational rehabilitation measures. What stances do individuals who experience the implementation of these policies adopt? What kind of tests are they subjected to? How can we explain the posture they adopt – be it ‘compliant’, ‘pacified’ or ‘rebellious’ – when facing the (re)assignations of their identity and professional status? Drawing on interviews conducted with individuals who have recently been involved in programmes set up by Swiss disability insurance, we highlight their uncertainties and concerns relating to their place in society, as well as their reactions to disability insurance’s interventions.
Persons with profound intellectual disability and their right to sex
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This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.
Public stigmatisation of people with intellectual disabilities: a mixed-method population survey into stereotypes and their relationship with familiarity and discrimination
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Purpose: Stigmatisation can negatively affect opportunities for people with intellectual disabilities to participate in society. Stereotyping, a first step in the process of stigmatisation, has been insufficiently explored for people with intellectual disabilities. This study examined the general public’s set of stereotypes that is saliently attributed to people with intellectual disabilities as well as the relationship of these stereotypes with discriminatory intentions and familiarity.
Materials and methods: A mixed-method cross-sectional survey within a representative sample of the Dutch population (n = 892) was used. Stereotypes were analysed with factor analysis of a trait-rating scale, and qualitative analysis of an open-ended question. The relationship between stereotypes and discrimination as well as familiarity with people with intellectual disabilities was explored through multivariate analyses.
Results and conclusions: Four stereotype-factors appeared: “friendly”, “in need of help”, “unintelligent”, and “nuisance”. Stereotypes in the “nuisance” factor seemed unimportant due to their infrequent report in the open-ended question. “Friendly”, “in need of help”, “unintelligent” were found to be salient stereotypes of people with intellectual disabilities due to their frequent report. The stereotypes did not relate to high levels of explicit discrimination. Yet due to the both positive and negative valence of the stereotypes, subtle forms of discrimination may be expected such as limited opportunities for choice and self-determination. This may affect opportunities for rehabilitation and might be challenged by protest-components within anti-stigma efforts.
Psychological well-being in adults with spinal muscular atrophy: the contribution of participation and psychological needs
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Purpose: Patients with spinal muscular atrophy (SMA) suffer from slowly progressive weakness of axial, respiratory and proximal muscles, leading to restrictions in activity and participation. This study aims to investigate patients’ level of psychological well-being, using the International Classification of Functioning model and self-determination theory as theoretical frameworks.
Materials and methods: In this cross-sectional study, adults with SMA were invited to complete a questionnaire. Instruments to assess psychological well-being included the Satisfaction with Life Scale, the Rosenberg Self-Esteem Scale and the Positive and Negative Affect Scale. Hierarchical lineal regression analyses were performed to investigate the contribution of participation (International Classification of Functioning model) and satisfaction of the need for autonomy, competence and relatedness (self-determination theory) to well-being.
Results: Ninety-two respondents (67%) returned the questionnaire. Levels of psychological well-being were comparable to that of healthy reference samples. Well-being was unrelated to sociodemographic variables or illness characteristics. By contrast, well-being was closely related to respondents’ satisfaction with participation, and their sense of autonomy, competence and relatedness.
Conclusions: This study illustrates the relevance of psychological needs for understanding well-being of individuals with SMA. Supporting patients in meeting their psychological needs should become an objective of person-centred care for this population.
Employees with hearing impairment. A qualitative study exploring managers’ experiences
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Purpose: Explore managers’ experiences regarding employees with hearing impairments.
Materials and methods: Individual interviews with ten managers having employees with hearing impairment. The interviews were analyzed using Systematic text condensation.
Results: The managers felt great responsibility for their employees’ functioning, but hearing loss issues were easily forgotten. They found access to information as imperative to secure workplace adjustments, and temporary needs, rather than permanent ones, were easily met. Despite their challenging nature, meetings were not accommodated to meet hearing loss needs. Support in accommodation processes at the workplace was not requested since minor adjustments were perceived as sufficient.
Conclusion: The results show that there are barriers towards developing less strenuous working conditions for employees with hearing impairments. The implications of hearing loss should be recognized as risk factors for fatigue and treated accordingly. Appropriate services are necessary to support the stakeholders at the workplace and utilize the room for manoeuver in the accommodation process. Further studies should identify how such services can accommodate both the employees, and managers’ needs.
A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness
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Purpose: Parents’ attendance, participation and engagement are thought to be critical components of children’s rehabilitation services; however, these elements of therapy are typically under-investigated. The purpose of this study was to develop a substantive theory of parents’ attendance, participation and engagement in children’s rehabilitation services.
Methods: A constructivist grounded theory study was conducted. Data collection included interviews with parents (n = 20) and clinicians (n = 4), policies regarding discharge, and child-health records. Data was analyzed using constant comparison, coding and memoing. To promote credibility, authors engaged in reflexivity, peer debriefing, member checking, triangulation and recorded an audit trail.
Results and conclusions: The Phoenix Theory of Attendance, Participation and Engagement was developed. This theory is described metaphorically as a journey to child health and happiness that has six components including: parent’s feelings, skills, knowledge, logistics, values and beliefs and parent’s relationship with the professional. The child, parent, service provider, and organizational factors that impact engagement are described. Service providers, policy makers, organizational leaders and researchers can use this information to promote engagement in children’s developmental rehabilitation services.
Living with Ménière’s disease: an interpretative phenomenological analysis
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Purpose: To explore the meanings of Ménière’s disease from the perspective of people living with this condition and to understand what was considered significant and important in participants’ everyday lives.
Materials and methods: Four women with Ménière’s disease participated in face-to-face semi-structured interviews. Accounts were recorded, transcribed, and analysed using an iterative process integral to Interpretative Phenomenological Analysis.
Results: Three interconnected themes were identified. “You have no control whatsoever” conveys participants’ perceptions of vertigo as having a disruptive and ongoing impact on physical and psychosocial function in everyday life. “Ménière’s takes away your life completely” describes Ménière’s as impinging on participants’ most meaningful activities and relationships, and as restricting their ability to live their lives on their own terms. “You get on with life” recounts participants’ efforts to refashion their lives whilst living with this condition and manage its most harmful effects. The psychosocial impact of living with Ménière’s disease and its relevance to rehabilitation is discussed.
Conclusions: Ménière’s disease has an enduring physical and psychosocial impact. Clinicians who acknowledge and respond to an individual’s subjective experience of their condition may be key to their engagement in therapy. Service users should have a voice in health service design and delivery.
Time to update the ICF by including socioemotional qualities of participation? The development of a “patient ladder of participation” based on interview data of people with early rheumatoid arthritis (the Swedish TIRA study)
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Purpose: The aim of was to identify and illustrate in what situations and with what qualities people with early RA experience participation in every day’s life.
Methods: Fifty-nine patients (age 18–63 years) were interviewed; 25 men and 34 women. Content analysis was used to identify meaning units that were sorted based on the type of situations described and later on, categories based on quality aspects of participation were developed.
Results: Participation was described as: 1. being part of a group, where a sense of belonging arose. 2. In doing activities with others for example at work or in leisure. 3. When sharing everyday chores and responsibilities for example in domestic duties. 4. When experiencing influence on actions such as when being asked for opinions on how to conduct a specific task. 5. When having the possibility to give direction of goals in rehabilitation, or elsewhere. 6. When sharing decision making and experiencing a high degree of influence in the situation.
Conclusions: Participation from an individual’s perspective is about belonging and having influence that mediates a positive feeling of being included and that you matter as a person. The results are important when using participation as a goal in clinical care. It is important to expand participation beyond the definitions in ICF and guidelines to include the patients’ socio-emotional participation in order to promote health.
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.
Investigating barriers teachers face in the implementation of inclusive education in high schools in Gege branch, Swaziland
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Background: The kingdom of Swaziland is a signatory to policies on universal education that ensure high quality basic education for all. Education for All is a commitment to provide equal opportunities for all children and the youth as provided for in the country’s constitution of 2005. The tone for the introduction of inclusive education in Swaziland was inevitably set by the new constitution of 2005. Since then several policies have been produced by the government, all aimed at providing equal education opportunities to all children in the country. These policies include the Swaziland National Children’s Policy (2009), Poverty Reduction Strategy and Action Plan (2006) and Draft Inclusive Education Policy (2008). The Education for All Policy (2010) is the policy that upon implementation became a stimulus for the introduction of inclusive education into mainstream schools; as a result, all teachers in the country’s schools were expected to be competent enough to teach learners with a wide range of educational needs. However, in-service teachers received inadequate staff development and training ahead of the implementation of inclusive education and a majority of teachers were not professionally developed for inclusive education, as pre-service students at tertiary training level.
Objectives: This study investigated barriers in the implementation of inclusive education at high schools in the Gege branch, Swaziland, with a view to finding lasting solutions to inform research and government policy.
Method: This research is a qualitative interpretive case study based on selected schools in the Gege branch of schools. Data was obtained through semi-structured research interviews and document analysis. It was processed and analysed through data coding, unitising, categorising and emergence of themes, which became the findings of the study.
Results: Lack of facilities in the governments’ schools and teachers’ incompetence in identifying learners facing learning challenges in their classrooms are some barriers to inclusivity.
Conclusion: The study concludes that there is a need for the Ministry of Education and Training to craft an inclusive curriculum in line with the inclusive policy in order to cater for the diverse educational needs of all learners in mainstream schools. It is thought that instituting a vibrant in-service and pre-service teacher training programme by the Ministry of Education and Training will increase teachers’ capacity to a level where teaching in inclusive classrooms does not negatively affect their competence.
Inclusive Classroom Profile (ICP): a cultural validation and investigation of its perceived usefulness in the context of the Swedish preschool
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The Inclusive Classroom Profile (ICP) is a structured observation instrument. It has been developed to support high-quality early childhood inclusion of children with special educational needs and disabilities. The aim of this study is to examine the cultural validity of the instrument in Swedish preschools and to investigate its perceived usefulness in a Swedish preschool context. Ten special educators, who conducted professional dialogues with preschool teachers and other preschool staff members in a Swedish municipality, were enrolled. The instrument was compared with the Swedish national curriculum for the preschool, and the perceptions of special educators were collected by way of dialogue seminar method. Thematic analyses were conducted. The results of the study show that the instrument, with few exceptions, is valid in Sweden, and that the instrument can be useful for special educators conducting professional dialogues about early childhood inclusion with preschool teachers and other preschool staff members. The study has relevance for those who work with early childhood inclusion in Sweden as well as elsewhere, and for those who plan to validate the instrument and investigate its perceived usefulness in a context pertinent to them. High-quality inclusion is on the agenda in many nations, and a Sustainable Development Goal.
The impact of stroke on people living in central Uganda: A descriptive study
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Background: Knowledge about perceived impact of stroke on everyday life as well as rehabilitation needs after stroke in Uganda is necessary to identify and develop rehabilitation interventions.
Objectives: To explore and describe clinical characteristics and functioning during the acute or subacute phase and chronic phase, as well as the impact of stroke on everyday life during the chronic phase in stroke survivors in central Uganda.
Method: A cross-sectional observational study was conducted on a consecutively included acute or subacute (n = 58) sample and a chronic (n = 62) sample. Face-to-face interviews were conducted to collect demographic information and clinical characteristics. The Scandinavian Stroke Scale (SSS) was used to collect clinical characteristics, assess neurological impairment and define stroke severity. The Barthel Index was used to assess the level of dependence in activities of daily living. In addition, the Stroke Impact Scale (SIS) 3.0 Uganda version was used to assess the impact of stroke in everyday life as perceived by the individuals in the chronic sample receiving rehabilitation.
Results: The mean age of the acute/subacute sample was 49 years and 81% had moderate or severe stroke. The mean age of the chronic rehabilitation group was 53 years and 58% had mild stroke. Time since onset in the acute sample was between 2 days and 3 weeks, and time since onset for the chronic sample varied between 3 months and 3 years. Strength, hand function and participation were the most impacted SIS domains in the chronic sample.
Conclusion: People with severe and moderate stroke were more likely to be admitted to Mulago Hospital. The mean age in the study sample was lower than that in high-income countries. Further knowledge is needed regarding the impact of stroke to develop guidelines for stroke rehabilitation interventions feasible in the Ugandan healthcare context in both rural and urban areas.
Exploring the concerns of persons with disabilities in Western Zambia
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Background: Understandings of disability are rooted in contexts. Despite the world’s significant contextual diversity, postcolonial power dynamics allow influential actors from the global North to imagine that most people across the global South understand disability in one generalised way. When it informs programmes and services for persons with disabilities in the global South, this imagining of a single generalised view could reduce effectiveness while further marginalising the people for whom the programmes and services were designed.
Objectives: In the interest of better understanding a contextually grounded meaning of disability, we explored the expressed concerns of two organisations of persons with disabilities and their members in Western Zambia.
Method: In this qualitative constructionist study, data collection focused upon life with a disability and servicesavailable to persons with disabilities. Data were collected through 39 individual interviews and eight focus group discussions with 81 members of organisations of persons with disabilities. Data were analysed thematically.
Results: The participants’ main expressed concern was poverty. This concern was articulated in terms of a life of suffering and a need for material resources. Participants linked poverty to disability in two ways. Some participants identified how impairments limited resource acquisition, resulting in suffering. Others considered poverty to be an integral part of the experience of disability.
Conclusion: This study contributes to literature on disability theory by providing a contextually grounded account of a particular understanding of disability and poverty. The study also contributes to disability practice and policymaking through the demonstration of poverty as the main concern of persons with disabilities in this context.
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