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Access to basic needs and health care for Malawian prosthetic and orthotic users with lower limb physical disabilities: a cross-sectional study

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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Purpose: To investigate access to basic human rights such as health, a standard of living adequate for health, education, work, marrying and establishing a family, and voting for prosthetic and orthotic users with lower limb disabilities in Malawi.

 

Materials and methods: A cross-sectional design and a questionnaire were used to collect data from 83 participants.

 

Results: Most participants reported their overall physical and mental health as good (60 [72%] and 50 [60%], respectively) and said they could access medical care (69 [83%]). Fifty (60%) participants had access to food, 72 (87%) had access to basic water, and 55 (66%) lived in housing adequate for their health. Most participants had studied in school (74 [89%]) but only 27 (33%) of the participants were working. Forty-three (52%) were married and 53 (64%) had children. Seventy-six (92%) participants could vote if they wished.

 

Conclusions: Rurality and high costs of transport and medication increase the barriers to accessing several basic human rights for people with lower limb physical disabilities. Interventions to target these barriers and increase access to secondary school, employment, and income could improve health equity for people with physical disabilities in Malawi and similar contexts.

Contingent Electric Shock as a Treatment for Challenging Behavior for People With Intellectual and Developmental Disabilities: Support for the IASSIDD Policy Statement Opposing Its Use

ZARCONE, Jennifer R
MULLANE, Michael P
LANGDON, Peter E
BROWN, Ivan
2020

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Issues: The International Association for the Scientific Study of Intellectual and Developmental Disabilities (IASSIDD) is an international group of researchers, clinicians, students, parents, and self-advocates that promotes worldwide research and exchange of information on intellectual and developmental disabilities. IASSIDD recently developed a policy statement regarding their opposition to the use of contingent electric skin shock (CESS) with individuals with challenging behavior and intellectual and developmental disabilities. To support the policy, the available literature was reviewed to evaluate the efficacy, side effects, generalization, and long-term effectiveness of the procedure as an intervention for challenging behavior.


Findings: The review provides a history that demonstrates that, although CESS can decrease the frequency of challenging behavior, it comes at a cost in terms of physical and emotional side effects, and questions remain regarding the long-term effectiveness of the procedure. In addition, we raise several ethical and methodological issues that make the research on the use of CESS even more concerning.


Conclusions: Although research continues in some countries, these studies are now rare. In fact, in the United States, the Food and Drug Administration has just banned the use of such devices with individuals with self-injury and aggression. It is hoped that, because there are many other forms of treatment that have shown to be effective for severe challenging behavior, we can completely avoid the use of CESS.

Assistive Technology Capacity Assessment (ATA-C) Survey Mongolia

Sunil Deepak
April 2020

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An Assistive Technology Capacity Assessment (ATA-C) survey in Mongolia in 2019. This survey was the first step in the effort to improve and strengthen the Assistive Technology (AT) services in the country, as part of the action following the resolution 71.8 of the World Health Assembly (WHA) in May 2018. WHO’s ATA-C survey has 4 questionnaires, these were translated and field tested in Mongolia. In collaboration with Tegsh Niigem, a Mongolian NGO, the major stakeholders involved in policy, acquisition, procurement, production and distribution of assistive products in the country were interviewed and compiled the WHO questionnaires. All together 47 persons were interviewed. This report presents the key findings from this survey.

How to Cope With Being Short Of Breath

April 2020

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People with lung problems often feel short of breath. Many daily tasks can make you breathless, such as walking, getting dressed or doing jobs around the house. Being breathless can make you panic or feel frightened. When you learn how to control your breathing these feelings will not trouble you as much and you will be able to do more. When you are breathless, do not panic. Your breathing will settle.
 

Experiences accessing and using rehabilitation services for people with physical disabilities in Sierra Leone

AENISHANSLIN, Justine
AMARA, Abu
MAGNUSSON, Lina
April 2020

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In order to explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone, interviews with 38 individuals with differing physical disabilities were carried out in three locations across Sierra Leone (Freetown, Bo and Makeni).

The analysis resulted in six themes:  The initial and ongoing need for rehabilitation throughout life; Challenges with the cost of rehabilitation and transportation to reach rehabilitation services; Varied experiences with rehabilitation staff; Coming to terms with disability and facing stigma; The struggles without and opportunities with rehabilitation services; Limited knowledge and availability of rehabilitation services.

Addressing barriers to affordability, access, and availability of rehabilitation and addressing knowledge gaps, attitudinal barriers and stigma towards rehabilitation and persons with disability are discussed.

 

Disability and Rehabilitation, April 2020

DOI: 10.1080/09638288.2020.1755375

The value of a short practical training course for newly qualified therapists working with children with cerebral palsy in South Africa

BAKUWA, Takondwa C
PILUSA, Sonti
SALOOJEE, Gillian
April 2020

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Background: Cerebral palsy (CP) is the most common and most complex disabling disorder in children. Newly qualified therapists are expected to manage CP despite feeling inexperienced and inadequately prepared. Short postgraduate practical training courses could potentially help bridge this readiness gap. However, the value of these short courses in addressing the knowledge and experience gap is unknown.

 

Objectives: To establish the value of a short practical training course on the self-perceived readiness of newly qualified South African trained therapists to work with children with CP.

 

Method: Secondary analysis of records on therapists’ immediate evaluation of a short practical training course on CP management was completed. The analysis included records from 11 courses collected over a 2-years period (2015–2017). Paired t-tests were used to determine the change in knowledge in the quantitative questionnaire. Qualitative data were analysed inductively to determine themes.

 

Results: The majority of therapists had their expectations met by the course. Therapists’ self-perceived level of knowledge about various aspects of CP after the course changed significantly. Therapists appreciated the adult teaching and learning methods, conducive learning environment, the relevant and organised content and holistic approach of the course. They demonstrated readiness to adopt positive attitudes, perceptions and practice following the course.

 

Conclusion: A short practical postgraduate training course in CP is valuable in addressing the self-perceived lack of readiness amongst therapists with little experience in this area. It is capable of improving the knowledge and changing attitudes, perceptions and practice intentions positively, and thereby potentially improving the quality of service offered to children with CP.

 

 

African Journal of Disability, Vol 9, 2020 

Disability, CBR and inclusive development (DCID), Vol 31, No 1 (2020)

2020

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Original Research Articles

  • Measuring Stigma related to People with Albinism in Tanzania: A Cultural Validation Study of the EMIC-CSS and SDS among Adults
  • Community-Based Screening and Early Intervention for Birth Defects and Developmental Disabilities: Lessons from the RBSK Programme in India
  • Management of Undergraduate Community-Based Rehabilitation Programmes in the Philippines: A Cross-Sectional Survey
  • Physical Activity, Enjoyment and Quality of Life among Institutionalised Older Adults in Malaysia: A Cross-Sectional Study

 

Brief reports

  • Monitoring the Internal Training Load and Surrogate Measures in a Senior Female Paralympic Athlete with Spinal Cord Injury: A Case Study
  • Spinal Postures of Children seated on the floor in Schools in Ahmedabad District, India
  • Accessing Healthcare in Ghana: Challenges Encountered and Strategies Adopted by Persons with Disabilities in Accra

Product Narrative: Prostheses. A market landscape and strategic approach to increasing access to prosthetic devices and related services in Low- and Middle-Income Countries

LIAO, Cynthia
SEGHERS, Frederick
SAVAGE, Margaret
FINEBERG, Alison
AUSTIN, Vicki
HOLLOWAY, Catherine
OLDFREY, Ben
April 2020

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While about 1.5 million people undergo amputations every year, WHO estimates that only 5-15% of amputees who need prosthetic devices in LMICs have access to them. High prices of prosthetic services in lower- and middle-income countries (LMICs), combined with high indirect costs for users (for example to travel to service points), make prosthetic services unaffordable to many of the people who need them. 

Prosthetic services can be made more affordable by: 1) increasing the number of service units (in particular, by leveraging decentralised service models and the innovative technologies that enable them); 2) establishing reimbursement schemes that encapsulate all costs to the user; and 3) leveraging alternative forms of financing for both capacity-building and user financing.

An opportunity exists to transform access to prosthetic services and products in LMICs, but this will require a coordinated effort between: 1) governments to expand service capacity; 2) global stakeholders to provide guidance on products and technologies; 3) suppliers to expand market presence and offerings; and 4) donors to support these activities. 

Five strategic objectives are proposed to accelerate access to prosthetic services in LMIC

Opening the GATE: systems thinking from the global assistive technology alliance

LAYTON, Natasha
BELL, Diane
BUNING, Mary Ellen
CHEN, Shih-Ching
CONTEPOMI, Silvana
RAMOS, Vinicius Delgado
HOOGERWERF, Evert-Jan
INOUE, Takenobu
MOON, Inhyuk
SEYMOUR, Nicky
SMITH, Roger O
DE WITTE, Luc
2020

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Purpose: 

This paper describes international actions to collaborate in the assistive technology (AT) arena and provides an update of programmes supporting AT globally.

 

Methods: 

The World Health Organisation (WHO) identifies the severe global uneven distribution of resources, expertise and extensive unmet need for AT, as well the optimistic substantial capability for innovations and developments in appropriate and sustainable AT design, development and delivery. Systems thinking and market shaping are identified as means to address these challenges and leverage the ingenuity and expertise of AT stakeholders.

 

Results: 

This paper is a ‘call to action’, showcasing emerging AT networks as exemplars of a distributed, but integrated mechanism for addressing AT needs globally, and describing the Global Alliance of Assistive Technology Organisations (GAATO) as a vehicle to facilitate this global networking.

 

Conclusion:

 Partners in this Global Alliance aim to advance the field of assistive technology by promoting shared research, policy advocacy, educating people and organisations within and outside the field, teaching, training and knowledge transfer by pulling together broad-based membership organisations.

Experiences accessing and using rehabilitation services for people with physical disabilities in Sierra Leone

AENISHANSLIN, Justine
AMARA, Abu
MAGNUSSON, Lina
April 2020

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Purpose: To explore the experiences of persons with physical disabilities accessing and using rehabilitation services in Sierra Leone.

 

Materials and methods: Interviews of 38 individuals with differing physical disabilities in three locations across Sierra Leone. An inductive approach was applied, and qualitative content analysis used.

 

Results: Participants faced several barriers to accessing and using rehabilitation services. Six themes emerged: The initial and ongoing need for rehabilitation throughout life; challenges with the cost of rehabilitation and transportation to reach rehabilitation services; varied experiences with rehabilitation staff; coming to terms with disability and encountering stigma; the struggles without and opportunities with rehabilitation services; and limited knowledge and availability of rehabilitation services.

 

Conclusions: There is a continued need to address the barriers associated with the affordability of rehabilitation through the financing of rehabilitation and transportation and exploring low-cost care delivery models. Rehabilitation services, assistive devices, and materials need to be available in existing rehabilitation centres. A national priority list is recommended to improve the availability and coordination of rehabilitation services. Improved knowledge about disability and rehabilitation services in the wider community is needed. Addressing discriminatory health beliefs and the stigma affecting people with disabilities through community interventions and health promotion is recommended.

Functional outcome of stroke inpatients according to human immunodeficiency virus status: A feasibility study

HARTLEY, Tasneem
BURGER, Marlette
ESTERHUIZEN, Tonya M
INGLIS-JASSIEM, Gakeemah
March 2020

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Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.

 

Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.

 

Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.

 

Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.

 

Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.

 

 

African Journal of Disability, Vol 9, 2020

“You have to argue the right way”: user involvement in the service delivery process for assistive activity technology

PEDERSEN, Heidi
KERMIT, Patrick S
SÖDERSTRÖM, Sylvia
2020

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Purpose: 

This article critically examines user-involvement in the service delivery process for assistive activity technology.

 

Methodology:

Data were collected in semi-structured interviews with 44 end users of assistive activity technology and in focus group interviews with 11 professionals at Norway’s Assistive Technology Centre. Data was analysed according to a stepwise deductive–inductive approach.

 

Findings: 

Flawed organisational principles like division of responsibility, unclear regulations, and a lack of competence with assistive activity technology among service professionals have hindered user involvement in the service delivery process.

 

Conclusion:

 A missing knowledge of assistive activity technology among professionals and the current organisation of services creates barriers for a positive collaboration with users in the service delivery process of assistive activity technology.

Development of the MobQoL patient reported outcome measure for mobility-related quality of life

BRAY, Nathan
HAF SPENCER, Llinos
TUERSLEY, Lorna
TUDOR EDWARDS, Rhiannon
March 2020

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Purpose: To examine how mobility and mobility impairment affect quality of life; to develop a descriptive system (i.e., questions and answers) for a novel mobility-related quality of life outcome measure.

 

Materials and methods: Data were collected through semi-structured interviews. Participants were recruited predominantly from NHS posture and mobility services. Qualitative framework analysis was used to analyse data. In the first stage of analysis the key dimensions of mobility-related quality of life were defined, and in the second stage a novel descriptive system was developed from the identified dimensions.

 

Results: Forty-six interviews were conducted with 37 participants (aged 20–94 years). Participants had a wide range of conditions and disabilities which impaired their mobility, including cerebral palsy, multiple sclerosis, and arthritis. Eleven dimensions of mobility-related quality of life were identified: accessibility, safety, relationships, social inclusion, participation, personal care, pain and discomfort, independence, energy, self-esteem, and mental-wellbeing. A new outcome measure, known as MobQoL, was developed.

 

Conclusions: Mobility and mobility impairment can have significant impacts on quality of life. MobQoL is the first outcome measure designed specifically to measure the impact of mobility on quality of life, and therefore has utility in research and practice to measure patient outcomes related to rehabilitation.

Para-cycling race performance in different sport classes

LILJEDAHL, Johanna B
BJERKEFORS, Anna
ARNDT, Anton
NOOIJEN, Carla F J
March 2020

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Purpose: The para-cycling classification system, consisting of five classes (C1–C5) for bicycling (C5 athletes having least impairments), is mostly based on expert-opinion rather than scientific evidence. The aim of this study was to determine the differences in race performance between para-cycling classes. 

 

Methods: From official results of the men’s 1 km time trials for classes C1–C5 of seven Union Cycliste Internationale World Championships and Paralympics, median race speed of the five fastest athletes in each class was calculated (n = 175). Para-cycling results were expressed as a percentage of able-bodied performance using race results from the same years (n = 35). To assess differences between consecutive classes, Kruskal-Wallis tests with Mann-Whitney U post hoc tests were performed, correcting for multiple testing (p < 0.013). 

 

Results: Para-cyclists in C1 reached 75% (median ± interquartile range = 44.8 ± 4.2 km/h) and in C5 90% (53.5 ± 2.9 km/h) of able-bodied race speed (59.4 ± 0.9 km/h). Median race speed between consecutive classes was significantly different (χ2 = 142.6, p < 0.01), except for C4 (52.1 ± 2.8 km/h) and C5 (U = 447.0, p = 0.05). 

 

Conclusion: Current para-cycling classification does not clearly differentiate between classes with least impairments.

Developing a Logic Model for the Triple-C Intervention: A Practice-Derived Intervention to Support People with Intellectual Disability and Challenging Behavior

TOURNIER, Tess
HENDRIKS, Alexander H C
JAHODA, Andrew
HASTINGS, Richard P
EMBREGTS, Petri J C M
2020

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Partly due to a lack of evidence-based methods to support people with intellectual disability (ID) and challenging behavior, their needs are often poorly met. One way to generate rapid evidence is to systematically describe and monitor interventions that are considered to be “good practice”—to develop evidence based on practical knowledge. This study describes the Dutch practice-based intervention Triple-C (Client, Coach, Competence). The intervention was developed in practice to support people with severe ID to borderline functioning and challenging behavior. The practice-based nature of Triple-C means that many of the professionals’ actions or activities are often underpinned by their implicit knowledge about the intervention they are delivering. Consequently, as the emphasis is on practice, the professionals can find it difficult to articulate how the intervention is operationalized and positive change achieved. This study aimed to assess the practical knowledge of Triple-C professionals and to develop an understanding of the mechanisms of change for Triple-C to improve understanding and to inform future research about the intervention. Through an iterative process, a logic model was developed to describe the intervention and its underlying assumptions. The development of the logic model was shaped using interviews with the founders, focus groups with support staff, psychologists, managers and members of the board of a service provider, and the analysis of published accounts of the Triple-C intervention. Data gathered from these sources were analyzed using content analysis. The logic model of the Triple-C intervention provides insight into the key elements of the approach, such as the need for unconditional supportive relationship and carrying out meaningful activities. Moreover, the potential relationship with existing evidence-based interventions such as Positive Behavioral Support and Active Support are described. Dening the underlying logic of a practice-based intervention like Triple-C is an important first step toward producing an evidence base for interventions developed from clinical practice.

Evidence and gap map of studies assessing the effectiveness of interventions for people with disabilities in low‐and middle‐income countries

SARAN, Ashrita
WHITE, Howard
KUPER, Hannah
January 2020

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The aim of this Evidence Gap Map (EGM) is to identify, map and describe existing evidence of effectiveness studies and highlight gaps in evidence base for people with disabilities in LMICs. The map helps identify priority evidence gaps for systematic reviews and impact evaluations. The EGM included impact evaluation and systematic reviews assessing the effect of interventions for people with disabilities and their families/carers. These interventions were categorized across the five components of community‐based rehabilitation matrix; health, education, livelihood, social and empowerment. Included studies were published from 2000 onwards until January 2018. The map includes 166 studies, of which 59 are systematic reviews and 107 impact evaluation

 

Campbell Systematic Reviews, vol.16, no.1, Mar 2020

DOI: 10.1002/cl2.1070

Early rehabilitation in conflicts and disasters

LATHIA, Charmi
SKELTON, Peter
CLIFT, Zoe
Eds
January 2020

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When emergencies strike, there is a huge surge in the need for Early Rehabilitation. Early Rehabilitation for patients with traumatic injuries in conflicts and disasters is now recognised as being an integral part of a patient’s recovery. However, the majority of rehabilitation professionals in countries that experience such emergencies do not have all the skills needed to treat all of the injuries. HI, in collaboration with leading organisations (ICRC, MSF-France, CBM, Livability & the WHO), has created this educational resource package to fill this gap

Each chapter of this handbook has been written by experts in their field. It includes pictures and evidence based treatment protocols to help rehabilitation professionals around the world to delivery high quality early rehabilitation intervention. Chapters included are:

  • Key Challenges in Delivering Early Rehabilitation in Conflicts and Disasters
  • Early Rehabilitation Patient Assessment and Treatment - the Basics
  • Early Rehabilitation of Fractures 
  • Early Rehabilitation of Peripheral Nerve Injuries
  • Early Rehabilitation of Amputees
  • Early Rehabilitation of Acquired Brain Injuries
  • Early Rehabilitation of Spinal Cord Injuries
  • Early Rehabilitation of Burns

Videos accompany each of the chapters. The handbook contents are directly linked to modules taught on disasterready.org where there are additional accompanying resources designed to be used in conflict and disasters settings

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