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Enhancing Function, Fun and Participation with Assistive Devices, Adaptive Positioning, and Augmented Mobility for Young Children with Infantile-Onset Spinal Muscular Atrophy: A Scoping Review and Illustrative Case Report

LIVINGSTONE, Roslyn
PALEG, Ginny
2021

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Recent advances in medical interventions have changed the prognosis for children with infantile-onset spinal muscular atrophy (SMA-1); however, little has been published regarding rehabilitation management. A rapid scoping review was conducted in November 2020 using Medline and CINAHL databases. Evidence supporting use of assistive devices and equipment to enhance participation, mobility, function, and posture in lying, sitting, and standing positions was sought. From 239 articles, only five studies (describing use of augmentative communication, manual and power mobility, supported standing and orthotic devices) met inclusion criteria. Results are presented alongside a case report of a 5-year-old boy (treated with Nusinersen since 7 months-of-age) who uses a variety of devices to enhance his activity and participation in family life. While reclined and tilted sitting positions as well as power mobility were previously considered for children with SMA-1, this child has progressed to supported upright standing, self-propelling a lightweight manual wheelchair indoors, communicating using multiple methods and taking steps in a dynamic mobility device. Power mobility was introduced in a switch-adapted cart at 11 months and he was independently exploring indoors and outside in his power wheelchair before 20 months. Research evidence is limited, but alongside the case report highlights the importance of a comprehensive and proactive approach to enhancing function, fun and participation with family and friends through adaptive equipment for children with significant and life-limiting disabilities.

Wheelchair service provision education for healthcare professional students, healthcare personnel and educators across low- to high-resourced settings: a scoping review protocol

KAMALAKANNAN, Sureshkumar
RUSHTON, Paula W
GIESBRECHT, Ed
RUSAW, David F
BOUZIANE, Selsabil-A
NADEAU, Melodie
MCKEE, Jennifer
GOWRAN, Rosemary J
KIRBY, R L
PEDERSEN, Jessica P
TASIEMSKI, Tomasz
BURROLA-MENDEZ, Yohali
TOFANIN, Marco
GOLDBERG, Mary
PEARLMAN, Jon
2020

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Purpose

Appropriate wheelchair provision is necessary for addressing participation barriers experienced by individuals with mobility impairments. Health care professionals involved in the wheelchair service provision process require a specific set of skills and knowledge to enable wheelchair use that meets individual posture, mobility and daily living requirements. However, inconsistencies exist in academic programmes globally about providing comprehensive education and training programmes. The planned scoping review aims to review and synthesize the global literature on wheelchair service provision education for healthcare professional students, healthcare personnel and educators offered by universities, organizations and industries.

 

Methods

This scoping review will be guided by the Joanna Briggs Institute (JBI) methodological framework. Comprehensive literature searches will be conducted on various global electronic databases on health to seek out how wheelchair service provision education is organized, integrated, implemented and evaluated. Two independent reviewers will perform eligibility decisions and key data extractions. Data from selected studies will be extracted and analysed using conventional content analysis. Information related to wheelchair service provision education including curriculum development, content, teaching methods, evaluation and models of integration will be synthesized.

 

Implications and dissemination

The planned scoping review will be the first to examine all aspects of wheelchair service provision education across professionals, settings and countries. We anticipate that results will inform the content of a Wheelchair Educators’ Package, and if appropriate, a follow-up systematic review. An article reporting the results of the scoping review will be submitted for publication to a scientific journal.

Crimes against humanity: Decades of violence and abuse in Mexican institutions for children and adults with disabilities

AHERN, Laurie
BRIZUELA, Lisbet
MILLAN, Ivonne
RODRIGUEZ, Priscila
ROSENTHAL, Eric
October 2020

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In this report, Disability Rights International (DRI) has thoroughly documented and detailed human rights violations against people with disabilities - a culmination of the 20 years of work that DRI has carried out in Mexico. DRI’s investigations cover a wide range of institutions including orphanages, psychiatric hospitals, institutions for people with disabilities and for homeless people, among others. The documentation of such a large number of institutions provides an overview of a scale of violations of the rights of persons with disabilities in Mexico  

Health-Related Quality of Life of Wheelchair Fencers, Sedentary People with Disability and Conventional Fencers in Brazil, Assessed by Short Form 36 (SF-36)

CLEMENTE, Mirna
MIGUEL, Marilis Dallarmi
FELIPE, Karina Bettega
SCHWANTES, Ivan Marangon
JUNIOR, Darlan França Ciesielski
SCHWANTES, Athos Marangon
SCHONHOFEN, Christian Burmeister
ALVES, Tabea Epp Kuster
BRAZ, Tiago Volpi
FERNANDES, Luiz Claudio
MIGUEL, Obdulio Gomes
2019

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Purpose: It is well established that physical exercise, in general, decreases anxiety and depression. Para sport or sport for people with disabilities is used as a rehabilitation strategy to improve their quality of life. This study aimed to investigate people with disabilities who practise wheelchair fencing, sedentary people with physical disability and conventional fencers, assessed by Short Form 36 (SF-36), by comparing the groups.

 

Method: Forty-two people from Physical Disability Association of Parana (ADFP) answered SF-36 and were divided into three groups: Conventional Fencers (CF), Wheelchair Fencers (WF), and Sedentary People with Physical Disability (SD).

 

Results: This study was the first to report the Health-Related Quality of Life (HRQOL) of conventional fencers, wheelchair fencers, and sedentary people with physical disability, using SF-36. The data demonstrated high scores in CF and WF, on seven SF-36 scales of the eight-scale profile, including functional and mental health, role physical, bodily pain, general health perception, vitality, social functioning, mental health. Moreover, the sedentary group had lower scores in most of the domains when they were compared to CF.

 

Conclusion: The results might provide supportive evidence that HRQOL of WF has demonstrated a positive effect on people with disability since para sport has been used as a rehabilitation programme.

 

Implication: The implementation of a public campaign is recommended, about sport as a health promoter for disability and rehabilitation. By involving healthcare providers from the area, people with disabilities can be encouraged to participate in para sport.

Development, reliability, and piloting of a wheelchair caster failure inspection tool (C-FIT)

MHATRE, Anand A
LACHELL, Stephanie
PEARLMAN, Jonathan L
2019

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Introduction: 

Wheelchair casters fail frequently in the field causing multiple user consequences and wheelchair breakdowns. To inform caster design improvement, there exists no validated tools that can collect caster failures. This need motivated the development of a user-reported, caster failure inspection tool (C-FIT).

 

Methods: 

To develop C-FIT, a multistep design and testing approach was used which included face validity testing, test-retest reliability testing and expert review. Reliability testing was conducted with two independent cohorts of wheelchair professionals who inspected caster failures physically and online through pictures. The tool was revised based on testing outcomes and expert feedback. For preliminary data collection and evaluating usability, C-FIT was piloted at wheelchair service centers in Scotland, Indonesia and Mexico.

 

Results: 

Caster failure items reported in the literature were screened to develop the initial list of C-FIT items. Face validity testing conducted through surveys with wheelchair experts (n = 6) provided 14 items for C-FIT inclusion. The test-retest reliability was found to be high for 10 items with physical failure inspections (n = 12). For each of these items, 75% or more participants had substantial to almost perfect agreement scores (κ = 0.6–1.0). Lower reliability scores were found with online failure inspections (n = 11). C-FIT received positive usability feedback from study participants and data collectors in the field. Pilot field data (n = 31) included comprehensive details about failures useful for manufacturers, designers and researchers to improve caster designs.

Conclusions: 

The C-FIT tool developed in this study has substantial reliability and can be used for documenting caster failures at wheelchair service centers.

Adding meaning to physical fitness test results in individuals with intellectual disabilities

OPPEWAL, Alyt
HILGENKAMP, Thessa I M
February 2019

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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.

A grounded theory of parents’ attendance, participation and engagement in children’s developmental rehabilitation services: Part 2. The journey to child health and happiness

PHOENIX, Michelle
JACK, Susan M
ROSENBAUM, Peter L
MISSIUNA, Cheryl
January 2019

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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.

National approaches to promote sports and physical activity in adults with disabilities: examples from the Netherlands and Canada

HOEKSTRA, Femke
ROBERTS, Lynn
VAN LINDERT, Caroline
MARTIN GINIS, Kathleen A
VAN DER WOUDE, Lucas H V
MCCOLL, Mary Ann
January 2018

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Purpose: This study described how the Dutch and Canadian governments promote high performance sports, recreational sports, and physical activity (PA) among adults with disabilities on a national level.

 

Methods: An internet-based study was conducted to identify and select relevant documents and websites containing information about the national approach to promote disability sports and physical activities in the Netherlands and Canada.

 

Results: Both governments promote high performance sports in similar ways, but use different strategies to promote recreational sports and physical activities. The Dutch approach is characterized by using time-limited programs focusing on enhancement of sports infrastructure and inter-sector collaboration in which municipalities have key roles. The Canadian government promotes recreational sports in disabled populations by supporting programs via bilateral agreements with provinces and territories. Furthermore, the level of integration of disability sports into mainstream sports differs between countries.

 

Conclusions: The findings of this study may inspire policy makers from different countries to learn from one another’s policies in order to optimize national approaches to promote disability sports and PA on all levels.

The long-term impact of wheelchair delivery on the lives of people with disabilities in three countries of the world

SHORE, Susan
2017

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Background: Lack of access to mobility for people with disabilities, particularly in less- resourced settings, continues to be widespread. Despite challenges to wheelchair delivery, the benefits to health, employment, social integration and life satisfaction are apparent.


Objectives: Previous studies have explored the impact of receiving a wheelchair on the lives of the users through cross-sectional or short-term longitudinal analysis. The current study was undertaken to evaluate whether previously reported changes were sustained after 30 months of use, and whether results varied between two differing models of a wheelchair.


Method: One hundred and ninety-one subjects from Peru, Uganda and Vietnam received one of two models of wheelchair provided by the Free Wheelchair Mission. Using interviews to record survey results, data were collected at the time the wheelchair was received and following 12 and 30 months of use. Variables of overall health, employment, income and travel were explored through non-parametric analysis.


Results: There was a significant improvement in overall health and distance travelled after 12 months, but these changes were no longer significant by 30 months (Friedman test for overall change, p = 0.000). Employment status showed a small but significant increase at 12 and 30 months (Cochran’s Q, p = 0.000). Reported income increased slowly, becoming significantly different at 30 months (Friedman test, p = 0.033). There was no association between the model of wheelchair received and the incidence of pressure ulcers, pain or maintenance required. There was higher satisfaction with the GEN_2 wheelchair at 12 months (p = 0.004), but this difference was not apparent by 30 months. Overall wheelchair satisfaction and maintenance levels were favourable.


Conclusion: While overall health status, and distance travelled into the community fluctuated over time, receipt of one of two models of a wheelchair in less-resourced settings of the world appears to have a positive sustained impact on employment and income. Further investigations should be carried out to confirm these results and explore the factors responsible for fluctuating variables. This study affirms the importance of long-term follow-up of outcomes associated with wheelchair distribution in less-resourced environments.

Towards a ‘mind map’ for evaluative thinking in Community Based Rehabilitation: reflections and learning

WEBER, Joerg
GRECH, Shaun
POLACK, Sarah
2016

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Calls for evaluations in Community Based Rehabilitation (CBR), in particular those of a participatory nature have stepped up in recent years. Much of this shifting discourse has emerged in response to the fact that evaluations overall remain scarce. Furthermore, very little is known about the impacts of CBR in practice and if/how it benefits persons with disabilities and their families on the ground. Nevertheless, and despite the calls for participatory approaches, the few existing efforts are too often targeted at creating standardised evaluations frequently at the expense of voice, participation and flexibility. This paper reports on a series of critical workshops held in Jamaica with CBR workers and other stakeholders, the objectives of which included discussions and reflections on emerging issues in localised, locally driven and responsive participatory evaluation frameworks. The findings highlight how participants favoured a flexible, adaptive and iterative approach that was not rigid, structured or per-determined by outsiders. Instead, they favoured an approach that created a safe space for sharing and learning, prioritised their narratives, and that was directly linked to and that fed directly into action on the ground. The paper concludes with the call for critical, engaged and bottom-up approaches that move away from control-oriented approaches in CBR towards more experimental and adaptive problem and process-oriented approaches, that embrace complexity and that are consistently responsive to an ever changing context.

 

Disability & the Global South (DGS), 2016, Vol. 3 No. 2

Community based rehabilitation (CBR) : critical perspectives from Latin America

GRECH, Shaun
2015

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“CBR Perspectives from Latin America” is a critical reflection on the multi-dimensional and changing nature of CBR, the perceived benefits, the conundrum of standardized approaches versus community driven processes, the nature of links between CBR and human rights, the resourcing of CBR and the difficulty inherent in taking a short term view in the evaluation of what is a long term process. Not so often are the experiences and perspectives from Latin America shared to a wider audience, making Dr. Grech’s work a remarkable achievement for the Region.”

Using Postcolonial Perspectives to Consider Rehabilitation with Children with Disabilities: The Bamenda-Toronto Dialogue

NIXON, Stephanie A
COCKBURN, Lynn
ACHEINEGEH, Ruth
BRADLEY, Kim
CAMERON, Debra
MUE, Peter N
SAMUEL, Nyingcho
GIBSON, Barbara E
2015

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This article discusses tensions in children’s rehabilitation that came to light through a series of ‘postcolonial dialogues’ amongst Canadian and Cameroonian participants. We defined ‘tensions’ as conflicts, contrasting ways of seeing things, and/or taken-forgranted ideas that shape issues related to rehabilitation for children with disabilities. These tensions were identified, articulated, and deconstructed through an iterative, multi-phase dialogue among eight individuals who identify as people with disabilities, rehabilitation providers, and/or rehabilitation researchers in Cameroon and Canada. The tensions discussed in this article problematize conceptualizations of disability and of client-centred care, the role of pain as a reinforcement tool in rehabilitation, and assumptions about poverty and religion in the context of rehabilitation practice. We present this synthesis to achieve several aims: (1) to provide multiple ways for rehabilitation providers and others to better understand these particular substantive issues; (2) to model the use of a critical lens as an approach for thinking about rehabilitation that promotes reflective and deliberate practice and that can be applied across contexts; and, (3) to promote dialogue about postcolonial and other critical perspectives on rehabilitation with children and with other groups.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 2

Representation, access and contestation: Facebook and vision impairment in Jordan, India, and Peru

PAL, Joyojeet
ALFARO, Ana Maria Huaita
AMMARI, Tawfiq W
CHHABRA, Sidharth
LAKSHMANAN, Meera
2015

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This paper presents qualitative research on the use of Facebook by visually impaired people and organizations representing them in Jordan, Peru, and India. We found that individuals and organizations have very different motivations and pathways for using social media. Social media serve as a means to help individuals with vision impairments to expand their social circles, network with casual acquaintances, and find various kinds of social and technical resources independently. However on issues of representation we found that social media have the potential to play a double-edged sword, reinforcing in some cases the same stereotypes that individual users of assistive technology (AT) sought to overcome by using technology in their professional lives. We find that individuals often characterize social media and assistive technology in the same vein — suggesting that for many parts of the global South, the dramatic change in the means and ability to leverage social and professional possibilities has not come from any one technology alone, but from a broader evolution of the technological environment available to people with vision impairments. Access to social media and technology disrupt an environment in which social and economic spaces for people with disabilities are still a zone of contestation between a dominant discourse of vision impairment enforced by generations of negative representations of disability, and a new world of technology users challenging representations and assumptions as engaged, connected professionals.

 

Disability and the Global South (DGS), 2015, Vol. 2 No. 3

Armed violence and disability : the untold story

THAPA, Rashmi
THALER, Kai
2012

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"This study aims to understand the links between armed violence and impairments that can lead to disabilities. It focuses on individuals who sustain impairments resulting from incidents of armed violence. The Disability Creation Process is adapted to analyse the combination of health problems, discrimination and socio- economic exclusion that can lead to disability for people who have sustained serious injury and/or lasting impairments as a result of armed violence...This report is written in a linear progression keeping the research project’s goals, objectives and approach as its backdrop. Chapter 1 (introduction) gives an overview of armed violence along with the justification of this research and its methods. Chapter 2 presents the findings from the four case study regions in countries, situated within its contextual analysis. Each case study draws on its discussion and summary of findings. Chapter 3 presents the discussion and lessons learned from this research, placing assistance and people at the centre of armed violence initiatives. Finally, a glossary, Annexes and references as endnotes are at the end of the report with notes at the end of every page"

Disabilities and decent work in the Pacific. The case for disability inclusive employment.

LAMOTTE, David
COCCO, Bernardo
LAL, Iresh
2012

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This publication aims to highlight some of the challenges faced by persons with disability in accessing decent jobs and to identify relevant labour standards and other policy interventions that could advance disability in the workplace and assist Pacific Island countries address these challenges. It also celebrates the experience of eighteen people with disabilities in Fiji and Vanuatu who have been able to secure employment – sometimes against all odds and barriers. As employees or as self-employed persons, their stories emphasise the “business case” for hiring a person with disability. They are hard-working, reliable, loyal and productive workers. Through their own strong determination, access to education and vocational training, they have overcome the barriers to employment that too many other people face. They are a role model to all of us and show that it is not a person’s disability, but, rather, their ability, that makes them good employees and productive members of society

Collective action and emancipatory aims : applying principles of feminist practice in a shelter for domestic violence survivors with disabilities

ALI, Alisha
MOWRY, Randolph
HO, Kimberly
April 2011

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This paper outlines that there is a need for need for domestic violence shelters that serve women with disabilities and highlights Freedom House, a fully accessible New York City shelter for domestic violence survivors with disabilities and their families. It presents the Freedom House as one approach of a viable feminist and liberatory model of care that is essential to recovery from trauma among domestic violence survivors with disabilities. Using a combined theoretical framework of the psychological theory of empowerment feminist practice and feminist disability theory, the paper concludes that this emergent model provides both a theoretical argument for empowerment and a framework for responsive feminist practice for women with disabilities within a shelter setting

Playgrounds for all children [Chapter 46]

WERNER, David
2009

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This chapter presents information about how to involve local people in building low-cost rehabilitation playgrounds that should be built for use by all children, both disabled and non-disabled. Examples of playgrounds and equipment are provided
Chapter 46 of "Disabled Village Children" by David Warner

Improving the education response to HIV and AIDS : Lessons of partner efforts in coordination, harmonisation, alignment, information sharing and monitoring in Jamaica, Kenya, Thailand and Zambia

VISSER-VALFREY, Muriel
March 2008

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This report presents the overall findings from case study exercises carried out in Jamaica, Kenya, Thailand and Zambia to examine the quality, effectiveness and coordination of the education sector's response to the HIV epidemic. The report also makes recommendations for improving coordination across agencies in support of country-level and global actions. The case studies were carried out by the UNAIDS Inter-Agency Task Team on Education

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