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Musculoskeletal impairment among Syrian refugees living in Sultanbeyli, Turkey: prevalence, cause, diagnosis and need for related services and assistive products

BOGGS, Dorothy
ATIJOSAN-AYODELE, Oluwarantim
YONSO, Hisem
et al
April 2021

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Epidemiological data on musculoskeletal impairment (MSI) and related service and assistive product (AP) needs for displaced populations are lacking. This study aimed to estimate the prevalence, aetiology, and specific MSI diagnosis and the need for related services and APs among Syrian refugees living in Sultanbeyli, a district in Istanbul, Turkey.

A population-based survey used probability proportionate to size and compact segment sampling to select 80 clusters (‘street’) of 50 individuals (aged 2+), for total sample size of approximately 4000 participants. An updated version of the Rapid Assessment of MSI tool (RAM) was used to screen all participants using six questions. Any participant who screened positive underwent a standardised examination by a physiotherapist to assess the presence, aetiology, severity and specific diagnosis of MSI and an assessment of need for related services and APs.

 

Conflict and Health volume 15, Article number: 29 (2021)

https://doi.org/10.1186/s13031-021-00362-9

German version of the Chelsea Critical Care Physical Assessment Tool (CPAx-GE): translation, cross-cultural adaptation, validity, and reliability

EGGMANN, Sabrina
VERRA, Martin L
STEFANICKI, Valentine
KINDLER, Angela
SEYLER, Daphne
HILFIKER, Roger
SCHEFOLD, Joerg C
BASTIAENEN, Caroline H G
ZANTE, Bjoern
2021

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Purpose: To translate and cross-culturally adapt the Chelsea Critical Care Physical Assessment tool from English to German (CPAx-GE) and to examine its validity and reliability.


Materials and methods: Following a forward-backward translation including an expert round table dis- cussion, the measurement properties of the CPAx-GE were explored in critically ill, mechanically ventilated adults. We investigated construct, cross-sectional, and cross-cultural validity of the CPAx-GE with other measurement instruments at pre-specified timepoints, analysed relative reliability with intraclass correl- ation coefficients (ICCs) and determined absolute agreement with the Bland–Altman plots.

 

Results: Consensus for the translated CPAx-GE was reached. Validity was excellent with >80% of the pre- specified hypotheses accepted at baseline, critical care, and hospital discharge. Interrater reliability was high (ICCs > 0.8) across all visits. Limit of agreement ranged from 2 to 2 points. Error of measurement was small, floor, and ceiling effects limited.

 

Conclusions: The CPAx-GE demonstrated excellent construct, cross-sectional, and cross-cultural validity as well as high interrater reliability in critically ill adults with prolonged mechanical ventilation at baseline, critical care, and hospital discharge. Consequently, the CPAx-GE can be assumed equal to the original and recommended in the German-speaking area to assess physical function and activity of critically ill adults across the critical care and hospital stay.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

How can we overcome barriers to accessing rehabilitation for persons with disabilities in LMIC? - Evidence brief

MACTAGGART, Islay
April 2021

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Rehabilitation is described as a set of measures to optimise the functioning of individuals, and is important for wellbeing, participation and quality of life. Rehabilitation includes diagnosis, treatments, surgeries, assistive devices and therapies. Not all people who need rehabilitation are people with disabilities, and not all people with disabilities need rehabilitation. The World Health Organisation (WHO) recently estimated that 1 in 3 people globally (2.41 billion people) would benefit from rehabilitation: this number has increased nearly two thirds since 1990, due to population growth and increase in Non-Communicable Diseases (NCDs). In contrast, there are estimated to be less than 10 skilled rehabilitation practitioners per million population in Low and Middle Income Countries (LMICs), and only 5 – 15% of people in need of assistive devices are thought to have received them.

 

Evidence is reviewed and recommendations provided

Design journey of an affordable manual standing wheelchair

SHAIKH-MOHAMMED, Javeed
DASH, Swostik Sourav
SARDA, Vivek
SUJATHA, S
2021

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Purpose: Only 1 in 10 people with disabilities can access assistive devices, underlining the critical need for low-cost assistive products. This paper describes the design evolution of a manual user-operated standing wheelchair (SWC), translating from prototype to product.


Methods: The SWC design has been refined over 5 years through multiple iterations based on comments from user trials. The SWC product, Arise, provides standing functionality, facile outdoor mobility, afford- ability, customisability, and is aesthetically pleasing. A one-time fitting and training ensure optimal effort for operation, correct posture, and comfortable user experience. The SWC accommodates users of differ- ent sizes and body weights (up to 110kg) and minimises user effort with the use of a gas spring. Incorporating discrete adjustments enables customisation while retaining the advantages of mass manu- facturing, which is necessary for ensuring affordability.

 

Results: The SWC has been field-tested and well received by over 100 wheelchair users, and Arise was launched recently by the industry partner.


Conclusions: It should be noted that RESNA cautions on the use of any standing device without medical consultation. Nevertheless, with appropriate dissemination and awareness, it is anticipated that the afford- able SWC product, Arise, will immensely benefit the eligible users and make a difference in their quality of life.

The influence of a contoured seating base on pressure distribution and discomfort

DE MARE, Lieke
DE GROOT, Bas
DE KONING, Fleur
GEERS, Richard
TETTEROO, Daniel
2021

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Purpose: This research paper examines how contouring of a wheelchair seating base can help prevent pressure sores by distributing pressure over the buttocks. Contouring wheelchair cushioning is already done to some extent and has proved to be beneficial for pressure distribution. We researched the effect of contouring the seating base, and whether contouring the seating base affects effectiveness in pressure distribution and perceived discomfort.

 

Materials & methods: 13 healthy participants performed a within-subject experiment with three differ- ently contoured seating bases. Perceived comfort and seating pressure were measured for each condition.
Results: Results indicate that a more contoured base is positive for both comfort and increased pressure distribution.

 

Conclusions: Contoured seating bases can provide increased comfort and improved pressure distribution over flat seating bases. Future research should examine the effect of contouring on stability, as well as compare the effects of contoured seating bases and contoured cushions.

A high prevalence of manual wheelchair rear-wheel misalignment could be leading to increased risk of repetitive strain injuries

OTT, Joseph
HENDERSON, Travis
WILSON-JENE, Holly
KOONTZ, Alicia
PEARLMAN, Jonathan
2021

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Purpose: To determine the prevalence and severity of manual wheelchair rear wheel misalignment in community-dwelling manual wheelchair users and estimate the associated increases in rolling resistance (RR) and risk of repetitive strain injuries (RSIs).


Materials and Methods: Data were collected in an outpatient rehabilitation clinic, a university research laboratory, and at adaptive sporting events in the United States. Two hundred active, self-propelling man- ual wheelchair users were recruited. Angular misalignment (referred to as toe angle) while the wheelchair was loaded with the user, and the difference between the maximum and minimum toe angle (referred to as slop) with the wheelchair unloaded.

 

Results: Average results for toe angle and slop (movement in the rear wheels) were 0.92 and 0.61 degrees, respectively. Using a lab-based testing method, we quantified the impact of increased RR forces due to misalignment in increased RR forces. Our results indicate that the average toe angle while under load and slop, without loading, measured in the community increase required propulsion force by 3.0 N. Combined toe angle and slop (i.e., the worst-case scenario) added increased propulsion force by 3.9 N. Conclusions: We found that rear-wheel misalignment was prevalent and severe enough that it may increase the risk for RSIs and decrease participation. To mitigate this issue, future work should focus on reducing misalignment through improved maintenance interventions and increased manufacturing qual- ity through more stringent standards.

Assistive product specifications and how to use them

WORLD HEALTH ORGANISATION (WHO)
March 2021

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This document was developed to guide procurement of assistive products. It is intended primarily for procurement teams working in less resourced settings. It should be read alongside the World Health Organization (WHO) and United Nations Children’s Fund (UNICEF) publication A manual for public procurement of assistive products, accessories, spare parts and related services, which sets out the procurement process in detail, including key steps and good practice

 

The document is a compilation of 26 model specifications describing the assistive product functional requirements and related services to be considered in procurement. The document also provides guiding information on how to adapt and apply the model specifications in tender processes

Disability inclusive Universal Healthcare

CENTRE FOR INCLUSIVE POLICY
March 2021

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The inclusion of direct medical costs, indirect medical costs and indirect costs incurred by people with disabilities into Universal Healthcare is discussed. The importance of including assistive devices, rehabilitation and extra transportation costs in the system is highlighted. Social protection measures are also highlighted.

Exploring participation in family and recreational activities among children with cerebral palsy during early childhood: how does it relate to motor function and parental empowerment?

KALLESON, Runa
JAHNSEN, Reidun
ØSTENSJØ, Sigrid
2021

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Purpose: To explore participation in real-life activities during early childhood, compare children’s partici- pation based on motor function and investigate relationships between participation and parental empowerment.


Methods: Data derived from the Cerebral Palsy Follow-up Program (CPOP) in Norway and the research registry Habilitation Trajectories, Interventions, and Services for Young Children with CP (CPHAB). Fifty-six children (12–56 months, GMFCS levels I–IV, MACS levels I–V) and their families were included. Frequency and enjoyment of participation were assessed by the Child Engagement in Daily Life Questionnaire and parental empowerment in family and service situations by the Family Empowerment Scale at least twice during the preschool years. Differences between groups based on motor function were explored by the Kruskal–Wallis tests. A linear mixed model was conducted to explore relationships between child partici- pation and parental empowerment.

 

Results: Similarities and differences in participation between children at different motor function levels varied between the activities explored. Fluctuations in frequency and stable enjoyment scores over time were most common. A statistically significant relationship was revealed between child participation and parental empowerment in family situations, but not in service situations.

 

Conclusions: Child participation appears as context-dependent and complexly influenced by both motor function and parental empowerment. This supports a focus on transactional processes when exploring and promoting child participation.

Sexuality as part of rehabilitation? A qualitative study on the perceptions of rehabilitation nurses on discussing patient sexuality during clinical rehabilitation

PASCUAL, April
WIGHMAN, Amber
LITTOOIJ, Elsbeth C
JANSSEN, Thomas W
February 2021

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Introduction: Spinal cord injury may seriously affect sexual health and sexuality, which can lead to lower self-esteem, social isolation, lower quality of life, and an increased risk of depression. Nurses play an extensive role in providing patient education. However, a gap between the patients’ need for information and the lack of information provided by nurses still exists. Therefore, knowledge about barriers and facilitators regarding discussing patient sexuality is necessary.

 

Methods: Semi-structured interviews were conducted with 25 nurses working in Spinal Cord Injury rehabilitation in one clinic in the Netherlands. The following themes were discussed during the interviews: (1) attitude, (2) social factors, (3) affect, (4) habits and (5) facilitating conditions.

 

Results: Addressing patient sexuality was difficult due to the nurses’ attitude and their environment. Sexuality was considered important but respondents were reserved to discuss the topic due to taboo, lack of knowledge, and common preconceptions. Participants expressed the need for education, a clear job description, time and privacy.

 

Conclusion: Nurses consider discussing patient sexuality as important but are hindered due to multiple factors. Organizational efforts targeted at knowledge expansion are needed to break the taboo and remove preconceptions. Nurses should provide opportunities to discuss the subject to intercept sexuality-related problems.

Perspectives on access and usage of assistive technology by people with intellectual disabilities in the Western Cape province of South Africa: Where to from here?

BOOT, Fleur H
KAHONDE, Callista
DINSMORE, John
MACLACHLAN, Malcolm
2021

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Background: Whilst assistive technology (AT) can play an important role to improve quality of life, health inequity regarding access to appropriate AT for people with intellectual disabilities (ID) is still very much present especially in low resource countries.

 

Objectives: This study focused on exploring factors that influence access to and continued use of AT by people with ID in the Western Cape province of South Africa and to suggest potential implications of these findings and actions required to promote access to AT.

 

Method: A qualitative approach was used to explore the experiences of people with ID and providers of AT. Face-to-face interviews with 20 adults with mild to profound ID, and 17 providers of AT were conducted and the data were analysed thematically.

 

Results: People with ID within the study setting faced many challenges when trying to access AT and for those who managed to acquire AT, its continued usage was influenced by both personal characteristics of the user and environmental factors. Important factors that influence AT access and use for people with ID found in this study were (1) attitudes from the community, (2) knowledge and awareness to identify AT need and (3) AT training and instructions to support the user and care network.

 

Conclusion: With the perspectives of both the providers and users of AT, this study identified priority factors, which could be addressed to improve AT access and use for people with ID in the Western Cape province.

Validation of the international classification of functioning, disability and health (ICF) core sets from 2001 to 2019 – a scoping review

KARLSSON, Elin
GUSTAFSSON, Johanna
February 2021

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Objective: To investigate and summarize the literature on the validation of International classification of functioning, disability and health (ICF) core sets from 2001 to 2019 and explore what research methods have been used when validating ICF core sets.

 

Methods: The current study is a scoping review using a structured literature search.

 

Results: In total, 66 scientific articles were included, of which 23 ICF core sets were validated. Most validation studies were conducted in Europe using a quantitative methodology and were validated from the perspective of patients. Analysis methods differed considerably between the studies, and most ICF core sets were validated only once for a single target population or from a single perspective. The comprehensive core sets were validated more often than the brief core sets, and core sets for stroke and low back pain were validated most often.

 

Conclusion: The results of the current study show that only 66% of the existing ICF core sets are validated. Many of the validation studies are conducted in a European context and from a single perspective. More validation studies of ICF core sets from the perspective of both patients and professionals are needed.

The community-based actions that removed barriers to inclusive education in Kenya

ELDER, Brent C
PAYNE, Mbuh
OSWAGO, Benson
2021

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This article represents a culmination of inclusive education projects implemented in western Kenya since 2010. In this article, we discuss the 2018 iteration of this on-going community-based participatory research (CBPR)-informed project in which we utilised multiple theoretical frameworks to inform our methods in this project, including decolonising methodologies and Critical Disability Studies (CDS). We conducted qualitative interviews as a way to learn about the ways in which inclusion committees facilitated the partial removal of barriers to the development of an inclusive education system in the region over the last decade. In this article, we provide an overview of the barriers to inclusive education in the global South and sub-Saharan Africa, with a particular focus on western Kenya. We present findings that highlight the various inclusion committee actions that contributed to the partial removal of barriers which included: sensitising communities about inclusive education; promoting access to inclusive education; and implementing inclusive strategies like income generating activities (IGAs) and co-teaching. We conclude the article by suggesting potential ways forward for inclusive education in Kenya including: a multi-sector approach for family supports; providing government incentives to inclusive schools; and promoting IGAs and co-teaching practices in teacher education programs and in schools.

Views and Experiences of People with Intellectual Disabilities to Improve Access to Assistive Technology: Perspectives from India

BOOT, F H
GHOSH, R
DINSMORE, J G
MACLACHLAN, M
2021

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Purpose: People with intellectual disabilities are deeply affected by health inequity, which is also reflected in their access to and use of assistive technology (AT). Including the perspectives of adults with intellectual disabilities and their caregivers, together with the views of local health professionals, suppliers of AT and policy-makers, this paper aims to provide an overview of factors influencing access to AT and its use by people with intellectual disabilities in Bangalore, a southern region of India.

 

Method: Face-to-face interviews were conducted with 15 adults with intellectual disabilities (ranging from mild to profound) and their caregivers, and with 16 providers of AT. This helped to gain insight into the current use, needs, knowledge, awareness, access, customisation, funding, follow-up, social inclusion, stigma and policies around AT and intellectual disability.

 

Results: Access to AT was facilitated by community fieldworkers and services to reach out and identify people with intellectual disabilities. Important barriers were stigma, and lack of knowledge and awareness among parents. Factorsrelated to continued use were the substantial dependence on the care system to use AT, and the importance of AT training and instructions for the user and the care system.

 

Conclusion and Implications: The barriers and facilitators related to AT for people with intellectual disabilities differ from other populations in need. The findings of this study can be used to inform and adjust country policies and frameworks whose aim is to improve access to AT and enhance the participation of people with intellectual disabilities within their communities.

Exploring the Use of Communication Supports Inventory- Children and Youth (CSI-CY) - to Identify Barriers and Facilitators in Implementing Augmentative and Alternative Communication in India: Preliminary Evidence from Two Case Reports

PM, D
SREEKUMAR, K
PHILIP, V S
2021

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Purpose: Augmentative and Alternative Communication (AAC) systems are very often abandoned by the users and caregivers due to potential challenges in implementation. This study aimed at exploring the use of Communication Supports Inventory-Children and Youth (CSI-CY), based on the International Classification of Functioning, Disability, and Health-Children and Youth (ICF-CY), as a potential tool for identifying barriers and facilitators in AAC implementation in the southern part of India.

 

Method: The CSI-CY was administered to the parents of a child with cerebral palsy and a child with autism spectrum disorder, respectively. Environmental facilitators and barriers that affect communication were rated. A semi-structuredinterview was also conducted to identify additional barriers and facilitators as identified by parents.

 

Results: Barriers related to services and policies, people and assistive technology, were identified for both cases. Additionally, the semi-structured interview identified barriers related to myths, clinicians, child, AAC use, economy andsociety.

 

Conclusion: CSI-CY is a potential tool for clinicians to systematically identify and document barriers and facilitators to implement AAC. It can further assist them in setting goals and defining the necessary intervention for each child with disability. Early use of AAC contributes to better therapeutic outcomes. Training should be given to professionals, special need educators and school teachers about different AACs and the appropriate techniques to be used. Counselling and evidence from earlier successful AAC interventions can dispel existing myths. Awareness programmes, group discussions and training on AAC can be done to eliminate barriers that may exist among rehabilitation professionals in India.

The Quality of Life and Associated Factors in Indonesian Meningioma Clients after Surgery: A Cross-Sectional Study

GANEFIANTY, A
IRAWATI, D
DAHLIA, D
KARIASA, I M
SUTIONO, A B
2021

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Purpose: The quality of life (QOL) of meningioma clients in Indonesia is poorly understood. This study aimed to investigate and examine the factors associated with the QOL of these meningioma clients after surgery, in order to help create an appropriate post-operative nursing intervention.

 

Method: This was a cross-sectional study. The QOL data was collected from a sample of 118 clients, using a EuroQol-5D-5L (EQ-5D-5L) questionnaire. Functional status, fatigue, illness perception and social support were assessed by the Barthel Index, FACIT-Fatigue Scale, Brief Illness Perception Questionnaire, and Medical Outcome Study Social Support Survey-6, respectively. Statistical analyses were conducted using the Chi-square test, Fisher’s exact test, and logistic regression test.

 

Results: After surgery, more than half of the 118 clients reported “ problems” in the EQ-5D dimensions of mobility (65%), self-care (57%), usual activities (70%), pain/discomfort (84%), and anxiety/depression (70%).The average postoperative EQ-5D index value (±SD) was 0.55 ± 0.26 while the median of EQ-VAS was 69.2 (IQR 40–90).Factors related to low QOL were age (p = 0.014), tumour grade (p = 0.0001), functional status (p = 0.0001), fatigue (p= 0.001), illness perception ( p = 0.0001), and social support (p = 0.001). Multivariate analysis showed that the most dominant factor associated with QOL was functional status (OR 6.728; Confidence interval=95%; p=0.008).

 

Conclusion and Implications:There is a correlation between age, tumour grade, functional status, fatigue, illness perception, and social support with the QOL of postoperative meningioma clients. The study recommends that these be included in their nursing assessment and an appropriate nursing rehabilitation programme be planned in order to improve their QOL.

Academic Outcomes and Coping Mechanisms of Children using Cochlear Implants in Mainstream Schools in Kerala, India

GEORGE, A
JOY, J M
SREEKUMAR, S
2021

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Purpose: The aim of the present study was to understand the academic outcomes of children using cochlear implants in mainstream schools in Kerala, India and to explore the compensatory strategies used by them to overcome the difficultiesfaced in classrooms.

 

Method: Thirty-one children using cochlear implants who were attending first and second grades in mainstream schools, and their parents and teachers participated in the study. Teachers were asked to rate a questionnaire, “Teachers’ Perceptions of Academic Outcomes”, which consisted of five sections – oral comprehension, oral expression, reading, writing and mathematics. The performance of the children using cochlear implants was compared with the performance of typically hearing children in the class. The grades obtained in the previous examination were also used for the comparison. Information was collected regarding difficulties faced by the children inside the classroom and their strategies to overcome the challenges.

 

Results: The class teachers rated the performance of 71 % of these children as ‘above average’. Though the academic outcomes were found to be good on the questionnaire and classroom tests, most of the children with cochlear implantsfaced various difficulties and had used different compensatory strategies to give their optimum performance in the classroom.

 

Conclusion: The study emphasizes the importance of having mid- and long-term follow-ups with children using cochlear implants, even after mainstreaming. It is necessary to orient and train teachers about the needs of these children and to implement support strategies in mainstream schools.

Training of Mid-Level Rehabilitation Workers for Community-Based Rehabilitation Programmes

GHOSH, R
PALANIVELU, V
TEBBUTT, E
DEEPAK, S
2021

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Purpose: There is a lack of trained rehabilitation professionals, especially in the small towns and rural areas of low and middle income countries. In India, a cadre of mid-level rehabilitation workers, the Rehabilitation Therapy Assistants (RTAs), are being trained by Mobility India, a Non-Governmental Organisation (NGO). This paper aims to assess impact of their training and experiences after the training.

 

Method: Data were collected from 3 different initiatives connected with the trained RTAs: an impact assessment of their training; interviews with RTAs during an evaluation; and a survey of 188 RTAs trained between 2002 and 2019.

 

Results: RTAs were shown to have good skills to provide rehabilitation interventions in the field and are appreciated by clients and other stakeholders. Most of the RTAs work for NGOs in CBR programmes, and in private hospitals and clinics. There does not seem to be a role for them in government services in most countries. The number of trained RTAs remains small in spite of the large needs. This may be due to lack of an accreditation system for RTAs and the low priority given to rehabilitation services in general in some countries.

 

Conclusions: The results provide useful information to strengthen RTA training courses. Training RTAs to provide rehabilitation services in smaller towns and rural areas of low and middle income countries can have a good impact through CBR programmes. However, this impact remains circumscribed to small areas where NGOs are active. Changes are needed in health systems for the inclusion of mid-level rehabilitation workers in primary health care services.

What are the most effective strategies for strengthening health systems for disability inclusive development? - Evidence brief

MACTAGGART, Islay
February 2021

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Health system strengthening refers to initiatives that improve one or more functions of health systems, leading to better health. There is a large body of evidence on what works to strengthen health systems in low- and middle-income countries (LMICs), much of which is aligned to the World Health Organization (WHO) health system building blocks (service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership/governance). Despite the fact that some people with disabilities have additional health needs, and many face additional barriers to accessing healthcare, inclusion of people with disabilities is largely missing from this evidence base. Separately, a smaller evidence base exists on increasing the effectiveness of specific health-related services targeting people with disabilities, such as health-related Community Based Rehabilitation (CBR), rehabilitation services more broadly, and mental health services. This second evidence base is less closely aligned to the building blocks. Reviewing these outputs in parallel goes some way towards identifying effective strategies for strengthening health systems for disability inclusive development.

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