Peer reviewed resources
This is a database of resources from open-access peer reviewed journals.
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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.
Community-Based Rehabilitation programming for sex(uality), sexual abuse prevention, and sexual and reproductive health: A scoping review
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Purpose: The United Nations Convention on the Rights of Persons with Disabilities aims to protect the human rights and dignity of all people with disabilities. In low-and middle-income countries (LMICs), one way this goal is pursued is through Community-Based Rehabilitation (CBR), a strategy to support the full and equal participation of people with disabilities. In spite of policy and community-based interventions, people with disabilities continue to experience inequities in many areas of life - one of these being their sexual and reproductive health (SRH) rights. This scoping review explored the literature to understand how CBR programming has supported sex(uality), sexual abuse prevention, and SRH for people with disabilities.
Methods: Arksey and O’Malley’s (2007) framework was used to identify relevant studies in academic and grey literature. This included six databases, the WHO website, and five Regional CBR Network websites. Relevant studies were selected using criteria and data was charted to examine the quantity, variation, and nature of CBR interventions.
Results: Fifteen studies were identified. The majority were implemented in Africa; targeted all people with disabilities, regardless of gender, age, or type of disability; and frequently focussed on the topic of HIV/AIDS. The interventions were most commonly designed to educate people with disabilities on issues of sex(uality), sexual abuse prevention, or SRH.
Conclusion: A number of studies discussed CBR programmes that aim to support sex(uality), sexual abuse prevention and SRH for people with disabilities, yet gaps were identified that indicate that certain populations and topics are being overlooked by CBR interventions.
Implications: CBR practitioners can focus on filling the gaps identified in this review through future programming. Further action must concentrate on implementing a variety of CBR Matrix strategies to address comprehensive issues related to sex(uality), sexual abuse prevention, or SRH.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
Access to Social Organisations, Utilisation of Civil Facilities and Participation in Empowerment Groups by People with Disabilities in Maharashtra, India
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Purpose: This survey aimed to assess the baseline level of access to social institutions, utilisation of civil facilities and participation in empowerment schemes by people with disabilities in Amravati district of Maharashtra State, India.
Method: Sixty villages from two blocks in Amravati district were randomly selected for the survey. From these villages, 522 households were sampled and 3056 individuals were surveyed. Interviews were conducted with 590 individuals with disability from among the surveyed population. The structured interview schedule consisted of demographic data, access to social organisations, utilisation of civil services, and participation in empowerment schemes.
Results: Locomotor disability was the most prevalent (44.6%) type of disability in the study area. Disabilities were more often present among male adolescents and young adults than among the older population and females. Over 50% of the study participants had no occupation (including children and students) and had not been to school. Only 48% had achieved secondary education and more. The proportion of disability among people belonging to Scheduled Castes and Scheduled Tribes was considerably higher than among the general population. Access to social institutions was less than 50% for most of the items, and was even lower among females. Except for the ration card and Aadhar card, civil services were generally under-utilised by people with disability. Only 3.2% of the participants were members of self-help groups, and not a single person was a member of the Disabled People’s Organisation.
Conclusions: In the study area access to social institutions, utilisation of civil services and participation in empowerment schemes was very low.
Limitations: Data, including general socio-demographic, access and utility data, was not collected for the general population but was limited to people with disabilities. This restricted the scope for comparison between people with and without disabilities.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
The Arabic version of Trinity Amputation and Prosthetic Experience Scale - Revised (TAPES-R) for lower limb amputees: Reliability and validity
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Purpose: Despite the importance of the evaluation process in lower limb prosthetic rehabilitation, prostheses are rarely evaluated properly in the Arab world. This is partly due to the absence of any suitable Arabic evaluative tool. The aim of this study is to translate TAPES-R (a standardised evaluative questionnaire) into Arabic and to investigate its psychometric properties on lower limb amputees. Such a tool would ultimately be of benefit for clinical follow-up and research purposes.
Method: International standards were followed for the forward- and back-translation of the TAPES-R questionnaire. A sample of 111 Arabic-speaking volunteers with lower limb amputation completed the translated version of the questionnaire. The responses were then statistically analysed using factor analysis and Cronbach’s α to assess the content and construct validity, and internal consistency (reliability) respectively.
Results: Factor analysis showed that the questionnaire’s items (included in the analysis) can be divided into three distinct dimensions as was originally suggested. The distribution of the items within the three dimensions is comparable with the original questionnaire. All three parts of TAPES-R showed high reliability; where Cronbach’s α were .892, .894, and .873 respectively.
Conclusion: This study found that the Arabic version of TAPES-R represents a valid and reliable tool.
Limitations: The questionnaire is designed to be emailed or posted, but the majority of the amputee population in Jordan did not have these services, so direct contact with each participant was necessary.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
Impact of parenting a child with cerebral palsy on the quality of life of parents: A systematic review of literature
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Purpose: The implications of parenting a child with cerebral palsy (CP) are multifaceted, as parents have to cope with their child’s functional limitations and specific needs, and prepare for the possibility of long-term dependence. There has been significant research on the consequences of managing these parenting tasks. This article reviews the literature on the effects of parenting children with CP, and summarises the related factors.
Methods: A systematic search of online databases was conducted and, based on the reference lists of selected articles, further studies were identified. Thirty-six articles that met the inclusion criteria were analysed.
Conclusion & Implication: Parents of children with CP were found to have lower quality of life, associated with high levels of stress and depression, due to factors such as child behaviour and cognitive problems, low caregiver self-efficacy and low social support. The implications of these findings in relation to the planning and development of interventions addressing the family as a whole are discussed. The aim is to enhance parents’ competence and resources so that they are better able to cope with the demands of parenting their children.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
Stereotypes about adults with learning disabilities: Are professionals a cut above the rest?
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Purpose: The study examined the differing perceptions of professionals and the public (non-professionals) regarding life success for adults with learning disability (LD).
Method: The sample (N = 342) consisted of 175 professionals (P) and 167 non-professionals (NP), with a mean age of 30.02 years and S.D. = 12.42 years. Their perceptions about life success of an individual with learning disability were studied with the help of four vignettes that provided hypothetical information about the age, class, and hobbies of a college student. The four vignettes were identical in describing the student and only differed in terms of gender (M and F), and presence and absence of learning disability (LD and NLD).
Results: No significant difference was found between attitudes held by professionals and non-professionals. Both the groups showed significantly greater negative attitudes about perceived life success for adults with learning disability than for those without learning disability. The results have been discussed with the help of social psychological theories in the areas of attitude, bias, and stigmatization.
Conclusion and Implications: It is clear that a negative bias exists toward individuals with learning disability in the urban Indian milieu. The fact that not only the public but also professionals were biased against individuals with learning disability regarding their life success implies that negative stereotypes are deeply embedded. This research may provide the impetus to address issues like prevalence of stigma against learning disability in society, its effective attenuation as well as equality and inclusion for individuals with learning disability.
Perceptions of primary caregivers about causes and risk factors of cerebral palsy in Ashanti Region, Ghana
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Purpose: Cerebral palsy (CP) is the most common chronic childhood disability, but in most cases the primary causes are largely unknown. The study sought to determine the perceptions about the causes and risk factors of CP among primary caregivers of children with CP in the Ashanti region of Ghana.
Method: A descriptive study design with a quantitative approach was used. A simple random sampling technique was adopted to select 100 participants from among the primary caregivers whose children with CP were attending the physiotherapy unit of the Komfo Anokye Teaching Hospital in Ashanti region. A structured questionnaire was administered to the respondents and data were analysed using SPSS version 21.0.
Results: CP was perceived as a disease caused by witchcraft (40%), punishment from God or Gods (12%), or by being cursed (10%). More than half (54%) of the respondents did not know of any risk factor for CP.
Conclusion and Implications: The perceived negative causes, as well as ignorance about the risk factors for CP, could result in primary caregivers stopping their children with CP from availing of the physiotherapy services. Public education and campaigns should focus on the causes and risk factors for CP, in order to change negative perceptions and improve awareness among the general public.
Changes in social participation of persons affected by leprosy, before and after multidrug therapy, in an endemic state in Eastern India
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Purpose: In general, multidrug therapy (MDT) completion rate and the change in disability levels before and after medical treatment are reported as outcomes in leprosy programmes. Changes in activity and social participation levels are rarely reported, possibly because the parameters are more difficult to measure. The study aimed to assess and evaluate the changes in social participation among leprosy-affected persons after completion of MDT.
Method: An observational study was conducted among 108 newly-diagnosed leprosy- affected clients, who were registered at the Leprosy Referral Hospital in Champa, Chhattisgarh. Their disability levels pre- and post- MDT were assessed using the WHO Disability Grading, and their social participation level was assessed using the Participation Scale.
Results: Of the 108 clients registered during the study period, 90 completed the full course of MDT and were included in the analysis. The majority of these 90 clients or 83% were multibacillary and 23% had Grade 2 disability at the time of diagnosis. At the end of MDT with steroids therapy for reaction and neuritis, the proportion of clients with no participation restriction increased from 76% to 93%. Clients with visible impairments had more restriction as compared to those with no deformity or no visible deformity, before and after MDT. Among those with visible impairments, 78% had mild to severe restriction before MDT and it declined to 26% on completion of treatment.
Conclusion: Presence of Grade 2 disability at the time of diagnosis was significantly associated with participation restriction. MDT and steroid therapy for management of reaction and/or neuritis improves the participation level of leprosy-affected clients, suggesting that early detection and appropriate management would reduce their risk of participation restriction.
Users’ satisfaction with assistive devices in Afghanistan
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Purpose: The objective of this study was to assess users’ satisfaction and effectiveness of assistive devices in four regions of Afghanistan, namely Mazar-e-Sharif, Ghazni, Jalalabad and Taloqan.
Method: A random sample of 785 users, who were provided with 874 mobility and assistive devices in four regional prosthetic and orthotic workshops of the Swedish Committee for Afghanistan (SCA), participated in the study.
Results: The study revealed that the majority of the participants rated the assistive devices as very useful. While 45% of respondents even described them as excellent, 49% expressed a good level of satisfaction with the services they received at treatment centres. Similarly, the majority of respondents (67%) mentioned a maximum level of improvement, while 15% claimed to have witnessed some improvement in their physical condition. Fitting, comfort, and ease of use, along with durability, weight and appearance were rated as the most important factors of assistive devices. On the other hand, slow service and limited access to maintenance and repair facilities were identified as reasons for dissatisfaction.
Conclusion: The study provided continuous and valuable information to rehabilitation professionals regarding device effectiveness and satisfaction. The findings also recommended a stronger focus on comfort and usefulness of mobility and assistive devices. Lastly, the study suggested that lack of local device-repair service needs to be addressed by rehabilitation professionals.
A comparison of disability rights in employment: Exploring the potential of the UNCRPD in Uganda and the United States
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The disability employment policy systems in the US and Uganda are compared, and areas identified to improve implementation by examining the broader socio-cultural contexts that have shaped disability policy and practices of the two countries over time. Using the United Nations Conventions on the Rights of Persons with Disabilities (UNCRPD) as the overarching analytical framework, the analysis is framed within the discussion of the right to employment, as both countries are recognized for policy advances in this domain, but continue to experience low labor market participation for persons with disabilities. It identifies three critical areas that impact the realisation of disability rights in each context: ideological frameworks; hiring and retention initiatives; and state level supports. Ultimately, it considers the limitations of the rights based framework for actualising employment rights in the context of limited state and individual resources.
Disability and the Global South, 2019, Vol.6, No. 2
Reimagining personal and collective experiences of disability in Africa
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This paper explores understandings of disability in Africa through the personal and collective experiences of a group of postgraduate students at the University of Cape Town in South Africa. The students, as disabled people themselves or practitioners working in the field across Africa, were required to capture their understanding of disability on the continent in a poster, set as a summative assessment task. What emerges from the students’ posters provides valuable insights into the complex social, political and economic factors that influence and shape the experience of disability in Africa. The paper argues that these insights are especially important to existing conceptual thinking around disability and its importance to discussions on Africa and its development. It suggests that grappling more carefully with the experience of disability in Africa brings much needed voices from Africa and the global South into the field of Disability Studies and deepens these debates in valuable and necessary ways.
Disability and the Global South, 2019, Vol.6, No. 2
Social participation and inclusion of ex-combatants with disabilities in Colombia
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The purpose of this paper is to explore ex-combatants’ understandings of disability and the pathways for social reintegration available to them in Colombia. The qualitative data for the study include seven in-depth interviews with ex-combatants and 29 with key informants, including disabled people’s organisations, government agencies, international organisations and academic groups. Findings suggest that transition to civilian life for ex-combatants is made more difficult by inadequate procedures, lack of support and complex administrative data vacuums. Social determinants, historical prejudice against persons with disabilities, high levels of unemployment and political polarisation in a post conflict context combine to trigger poverty traps. The findings indicate pitfalls in the early implementation of the Colombian peace process, which did not consider structural issues that affected transition to civilian life for ex-combatants with disabilities. Furthermore, key enablers for social inclusion such as peer-to-peer support have been identified by respondents. This paper concludes that more needs to be done to enhance the voices of ex-combatants with disabilities and to understand the profound meaning of acquiring impairments through participation in conflict, as well as how post-conflict responses could enable these individuals to gain the skills they need to successfully reintegrate into their communities.
Disability and the Global South, 2019, Vol.6, No. 2
‘Inclusive education’ in India largely exclusive of children with a disability
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Exclusion of children with a disability from education negatively affects national economic growth. Education is important for children with a disability to acquire skills that allow them to gain employment, and thus address a key driver of poverty. A cross-sectional study was conducted in 2015 to better understand the relationship between disability, education and health among children in India. Across 17 states in India, the study sample included 39,723 households with a child aged 0-59 months (163,400 individual cases in total), based on randomised cluster sampling methodology. Key outcomes of interest were school attendance, completion of early childhood education and highest level of education. The study found one percent prevalence of disability, nearly double among boys (1.38%) compared to girls (0.77%), and linked disability to lower level access to education and highest level of education. This study confirms the negative relationship between disability and educational exposure among children, and highlights that India’s efforts to make education a fundamental right of every child have not yet translated to benefits for children with a disability. There remains a pressing need for well-designed longitudinal studies that capture the barriers and protective factors of school attendance at every transition between stages of schooling in children with a disability.
Disability and the Global South, 2019, Vol.6, No. 2
Decolonizing schools: Women organizing, disability advocacy, and land in Sāmoa
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In the 1970s and 1980s, Sāmoan women organizers established Aoga Fiamalamalama and Loto Taumafai, two educational institutions, in the independent state of Sāmoa. This article examines these schools’ support of students labelled as ma’i (sick), specifically those with intellectual and physical disabilities. Through oral histories and archival research, I show the vital role performed by the women organizers in changing the educational system by drawing attention to the exclusion of disabled students. I focus on the collective labor of Sāmoan women and their influence in decolonizing schools. In this regard, the women organizers used Sāmoan concepts of fa’a Sāmoa (culture), fanua (land), and tautua (service) as ways to redefine the commitment of the education system. This is a story about daring to reimagine indigenous disabled bodies and their futures through knowledge systems, theory, and literature.
Disability & the Global South (DGS), 2019, Vol. 6 No. 1
Adapting an education program for parents of children with autism from the United States to Colombia
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One of the lingering aspects of coloniality in the Americas is paternalism. In Latin America, this power structure plays out among people with autism spectrum disorder (ASD) through beliefs that people with disabilities need to be protected and guarded at home, and that they are unable to learn and function in society. We developed a program to empower parents of children with ASD through peer education to help their children realize their potential. This program was implemented in the United States (US) for Latino immigrant families and then adapted for use in Bogotá, Colombia. In this paper, we discuss some of the ways the manifestations of colonialism have influenced the adaptation of this program from North to South. For example, in Colombian society it is not common to use non-professionals or peers to deliver scientific information because within a paternalistic society there is ‘respeto’ (respect) for persons who are older, male and have credentials. Therefore, promoting the use of peer-mothers in this context was a challenge in the adaptation that warranted compromise. We explore and discuss similarities and differences in the adaptation and delivery between North and South and problematize the idea of Latinos in the US versus Colombia.
Disability and the Global South, 2019 Vol.6, No. 1
Participation, agency and disability in Brazil: transforming psychological practices into public policy from a human rights perspective
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Participation is a little discussed or researched concept in the social sciences, despite its importance in understanding activism. This article presents some theoretical and methodological considerations for promoting social participation and agency for disabled people through the work of psychologists associated with Brazilian public policies. This article takes the form of a discursive study, based on the dialogue between: a) Brazilian legislation on disability; b) Bader Sawaia’s Ethical-Political Psychology; and c) Disability Studies. Based on the assumption that psychological practices should promote participation and agency for disabled people, we present the elements that hinder or control participation. We then present theoretical methodological contributions to build practices that promote participation and agency, highlighting: a) critiques of moral and biomedical models of disability; b) understandings of disability from intersectional perspectives that incorporate it as a category of analysis; c) including disabled people in the construction of research and professional practices disabled people and d) the rupture with ableism, which blocks the participation of disabled people. Participation has shown to be a multidimensional concept that covers a spectrum of aspects – from the practice of activism to the constitution of subjectivity in disabled people.
Disability & the Global South (DGS), 2019, Vol. 6 No. 2