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Fragmented yet together: the disability movement in Sierra Leone

VAN DEN BRINK, Amélie
ELBERS, Willem
IBRAHIM, Aisha Fofana
2020

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The on-going struggles of disability movements worldwide have been examined from multiple perspectives. As of yet, however, research into this topic has largely overlooked experiences on the African continent. This article seeks to address this gap by presenting a case study of the disability movement in Sierra Leone, West Africa. The study finds that on the one hand the Sierra Leonean disability movement is fragmented (referring to the tendency of groups to work individually as opposed to operating in a collective manner), thus limiting synergy. Three main ‘centrifugal’ forces underlying fragmentation are identified: resource scarcity, impairment specific interests and capacity differences between impairment types. On the other hand, the movement somehow manages to survive and even achieve modest successes. The research shows that interdependence, shared experiences of marginalization, and a clear identification of the ‘other’ have a unifying effect.

  • The disability movement in Sierra Leone is fragmented, meaning it struggles to formulate a unified position and act collectively, yet somehow survives and even manages to achieve some successes;
  • The fragmentation is fueled by competition between groups, a hierarchy between impairment types and interests that are impairment specific.
  • The movement is kept together by mutual dependence to achieve key goals and raise funds, shared experiences of marginalization and negative experiences with ‘outsiders’.
  • The research offers recommendations to disability groups and donors to mitigate fragmenting forces while strengthening unifying forces.

Inclusive Governance sector guiding note on COVID-19

April 2020

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Humanity & Inclusion inclusive governance approach fits in with the governments (national, regional and local) context, governments are in charge of the response to the crisis. In these types of contexts, humanitarian actors do not have the leadership and mandate to make decisions. Governments are creating policies in response to Covid-19 and must include persons with disabilities as equal citizens within their response frameworks. 

Key messages :

  • DO NO HARM: Protect yourself and your family, staff, partners and of course the beneficiaries.
  • Work closely with other stakeholders and ensure coordination in the response is happening at all levels
  • Follow HI’s guidelines and the guidance from the national and local authorities regarding COVID 19 at all times. 

English pages 1-7 and français ci-dessous pages 7-13.

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

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.

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Access to human rights for persons using prosthetic and orthotic assistive devices in Sierra Leone

MAGNUSSON, Lina
BICKENBACH, Jerome
January 2019

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Access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices was assessed, and groups of participants were compared in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.

Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone

 

Journal of Disability and Rehabilitation, Volume 42, 2020 - Issue 8

https://doi.org/10.1080/09638288.2018.1515267

African Journal of Disability, Vol 8, 2019

2019

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This journal volume includes:

  • 33 research articles
  • 2 review articles
  • an opinion paper
  • a case study
  • two book reviews

Additionally there is a special collection of 3 papers concerned with the Role of Assistive Technology.

Inclusive education in resource-constrained environments: good practice examples and learning from implementation, Disability Inclusion Helpdesk Research Report No. 3

LEE, Harri
MYERS, Juliette
January 2019

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This rapid review addresses the query: What are recent examples of good practice in providing inclusive education in resource constrained environments, in terms of:

  • enrolling children with disabilities into mainstream schools
  • creating inclusive environments in schools, for example through teacher training, whole school approaches and awareness raising
  • identifying learning needs for children with disabilities, with a particular focus on intellectual disabilities
  • use of specialist education resources (eg. teachers, resource centres) to support mainstream schools

 

Case studies presented include:

  • DFID’s Girls Education Challenge – How disability disaggregated data can generate knowledge and help ensure education is more inclusive to girls with disabilities
  • Education for All in Bombali District, Sierra Leone
  • Supporting transition from primary to secondary for girls with disabilities in Kenya (2014-2022)
  • CBM’s experience providing inclusive education in Nicaragua
  • ADD International Tanzania

Access to human rights for persons using prosthetic and orthotic assistive devices in Sierra Leone

MAGNUSSON, Lina
BICKENBACH, Jerome
January 2019

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Purpose: To evaluate the access to human rights of persons with disabilities who use prosthetic and orthotic assistive devices, and to compare groups of participants in terms of gender, residential area, income, and type and level of assistive device. The addressed areas were rights to: health, a standard of living adequate for health, education, marry and establish a family, vote, and work.

 

Methods: Questionnaires were used to collect self-reported data from 139 lower-limb prosthetic and orthotic users in Sierra Leone.

 

Results: About half of the participants considered their overall physical health good, while 37% said their mental health was bad. Most said they lacked access to medical care. About half of the participants had regular access to safe drinking water. Most had reasonable housing and 60% could read and write. Half of the participants were married and 70% had children. Almost all reported that they could vote if desired and about half were working.

 

Conclusions: There is still a need for improved access to medical care when needed for persons with lower limb physical disability in Sierra Leone. Better access to food and clean water are also necessary to facilitate a standard of living adequate for health, to realize the health rights of persons with disabilities.

Bridging the Gap: Examining disability and development in four African countries. The case for equitable education

GROCE, Nora
et al
June 2018

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Over the course of a three-year project the Leonard Cheshire Research Centre worked with research teams in four countries: Kenya, Sierra Leone, Uganda and Zambia to better understand the relationship between disability and development in each country across four domains: education, health, labour markets and social protection. This mixed methods research used a range of interrelated components, including policy and secondary data analysis, a household survey of 4,839 households (13,597 adults and 10,756 children), 55 focus group discussions and 112 key informant interviews across the four countries. 

 

This report explores key findings in relation to education. Key findings discussed include school attendance, cost of education, inability to learn and gap in educational attainment.

Compliance with standards of practice for health-related rehabilitation in low and middle-income settings: development and implementation of a novel scoring method

PRYOR, Wesley
NEWAR, Pushpak
RETIS, Chiara
URSEAU, Isabelle
April 2018

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Purpose: To (A) develop a method for measuring compliance with standards, and (B) implementation of the method in 12 rehabilitation centers in six low and middle-income countries (LMICs).

 

Methods: In part A, existing standards were compiled and operationalized into scores, organized into 5 ‘scorecards’ and 15 ‘sub-scorecards’, then tested and refined in an iterative process. In part B, 12 rehabilitation centers in 6 countries implemented the standards using the new method, revealing relative performance between centers, and across different standards. Internal consistency of scores within domains was computed using Chronbach’s alpha.

 

Results: A standardized method for scoring compliance with standards for rehabilitation was developed. The method evaluated compliance with standards in five domains of practice: user focused approach, service outputs, finances, staff, and general management. Multiple standards within domains were strongly related, with Chronbach’s alpha >0.80 for all but the equipment and supplies domain. Overall, in the 12 rehabilitation centers examined, 36% of standards were met or exceeded. Compliance within each scoring domain was 56% (user-focused approach), 38% (service outputs), 27% (financial management), 30% (staff management), and 33% (general management). Two out of 12 (17%) of centers met more than two-thirds of the standards, 3 (25%) met more than one-third of standards, while the remaining 7 (58%) met less than one-third of standards.

 

Conclusions: A new, standardized method for measuring performance of rehabilitation services in LMICs was developed. The method examines standards in five rehabilitation practice domains, and can be used to understand barriers to quality performance, particularly in resource-constrained settings. Implementation of the method demonstrated that current compliance with standards is modest. Ongoing interest in new standards for rehabilitation practice should be accompanied by measures to ensure they are used to strengthen quality in an emerging rehabilitation sector.

From the day they are born: a qualitative study exploring violence against children with disabilities in West Africa

NJELESANI, Bridget
et al
January 2018

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The qualitative study presented in this article describes the violence experienced by children with disabilities in Guinea, Niger, Sierra Leone, and Togo from the perspectives of children, community members, and disability stakeholders. The study contributes to the literature on violence against children with disabilities, which in West Africa is largely nonexistent. 

A qualitative study design guided data generation with a total of 419 children, community members, and disability stakeholders. Participants were selected using purposive sampling. Stakeholders shared their observations of or experiences of violence against children with disabilities in their community in interviews and focus groups


BMC Public Health 18:153 2018

https://doi.org/10.1186/s12889-018-5057-x

Strengthening environmental sustainability and inclusion in health and other development programs. Practical guidance for environmental sustainability, accessibility, gender, safeguarding and disaster risk reduction

CBM
2018

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The purpose of this booklet is to promote discussion and innovation for strengthening environmental sustainability and inclusion in health and other development activities. The case studies and checklists are designed to foster creative thinking and the ongoing gathering of evidence related to these topics. The booklet will be useful to anyone seeking high quality outcomes from health and other development programs. The information was first compiled for CBM’s engagement in the General Assembly of the International Agency for the Prevention of Blindness 2016, however will be useful for advancing sustainable development with inclusion in any context.

The case sutdies are: Environmental Sustainability in Eye Health, Caritas Takeo Eye Hospital (CTEH), Cambodia; and  Strengthening Accessibility and Inclusion in Eye Health. UMC Kissy Eye Hospital, Freetown, Sierra Leone, West Africa

Disability inclusion and the sustainable development goals : practices and challenges

AL-GHAIB, Ola Abu
WILM, Susanne
October 2017

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This research was commissioned on the occasion of the 2017 High-level Political Forum (HLPF) in New York to investigate how far the global commitment to disability has translated into implementation, monitoring and reporting processes at national and sub-national level. Four case studies were commissioned, exploring the extent of disability inclusion in alignment with the SDGs in Bangladesh, Kenya, Sierra Leone and Zambia. DPOs played a pivotal role in the research, with more than 40 DPOs consulted through key informant interviews and focus group discussions. In Zambia, the research was implemented by a local DPO – the Zambia Federation of Disability Organisations (ZAFOD). A literature review identified internet-based policy, legal and strategic documents related to disability and the 2030 Agenda, as well as documentation and reports on different SDG nationalisation initiatives.

 

 

Mobile for development : transforming global healthcare through mobile technology

THEVATHASAN, Vanessa
GRADZEWICZ, Agnes
RUETZEL, Sonja
2015

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This paper outlines the need for greater connectivity & accessibility in less developed countries. Following this, the authors present the benefits of various different ‘mHealth’ solutions, presented through case studies. The report concludes by outlining some of the constraints holding back greater ‘mHealth’ innovation, including financing and sustainability issues

Beneath the rhetoric: Policy to reduce the mental health treatment gap in Africa

COOPER, Sara
2015

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In this paper I problematize knowledge on reducing the ‘gap’ in treatment produced by 14 national mental health policies in Africa. To contextualize this analysis, I begin with a historic-political account of the emergence of the notion of primary health care and its entanglement within decolonization forces of the 1960s. I unpack how and why this concept was subsequently atrophied, being stripped of its more revolutionary sentiments from the 1980s. Against this backdrop, I show how, although the 14 national mental health policies are saturated with the rhetoric of primary health care and associated concepts of community participation and ownership, in practice they tend to marginalize local meaning-systems and endorse a top-down framework heavily informed by colonial medicine. The policies thus end up reproducing many of the very Eurocentric assumptions that the original primary health care notion sought to transcend. More specifically, the paradigms of evidence-based research/practice and individualised human rights become the gatekeepers of knowledge. These two paradigms, which are deeply embedded within contemporary global mental health discourse, are legislating what are legitimate forms of knowing, and by extension, valid forms of care. I argue that a greater appreciation of the primary health care concept, in its earliest formulation, offers a potentially fruitful terrain of engagement for developing more contextually-embedded and epistemologically appropriate mental health policies in Africa. This in turn might help reduce the current ‘gap’ in mental health care treatment so many countries on the continent face.

 

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

African disability rights yearbook

NGWENA, Charles
et al
2015

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This volume of the African Disability Rights Yearbook is divided into three sections presenting articles, country reports and commentaries on regional developments, and has added a new feature in the form of a book review section. The first section (A) of the journal presents a number of articles on issues affecting people with disabilities in Africa, ranging from sexual and reproductive rights to socio-economic issues. Section B presents a number of country reports on Eritrea, Lesotho, Morocco, Sierra Leone, Swaziland, Tunisia. Section C presents two articles focussing on regional development; one on disability rights and emergency legislation, and another on the right to political participation for people with disabilities in Africa. Finally the journal presents a review of A.S. Kanter’s 2014 book "The development of disability rights under international law: From charity to human rights"

Volume 3

Prosthetic and orthotic services in developing countries

MAGNUSSON, Lina
October 2014

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This thesis aims to generate further knowledge about prosthetic and orthotic services in developing countries, with a focus on patient mobility and satisfaction with prosthetic and orthotic devices, satisfaction with service delivery, and the views of staff regarding clinical practice and education. The findings are based on patient questionnaires in Malawi and Sierra Leone, including QUEST 2.0, as well as interviews with prosthetic/orthotic technicians in Sierra Leone and Pakistan

School of Health Sciences Dissertation series No. 56, 2014; No. 66, 2014

Facilitating disability inclusion in poverty reduction processes: Group consensus perspectives from disability stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone

MACLACHLAN, Malcolm
MJI, Gubela
CHATAIKA, Tsitsi
WAZAKILI, Margaret
DUBE, Andrew K
MULUMBA, Moses
MASSAH, Boniface
WAKENE, Dagnachew
KALLON, Frank
MAUGHAN, Marcella
2014

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This paper addresses the challenge of how to get disability on the development agenda in four African countries. We explored perceptions of what initiatives would most help in achieving disability inclusion in Poverty Reduction Strategy Papers (PRSPs), and identified factors that can either promote or hinder these initiatives. Stakeholders from Disabled People’s Organisations (DPOs), other civil society organisations (CSOs), development agencies, researchers and government ministries, participated in the Nominal Group Technique and Force Field Analysis procedures across Malawi, Ethiopia, Uganda and Sierra Leone. While each country had specific contextual factors, common ideas for promoting greater disability inclusion in PRSPs focused on policy action, the need for a stronger evidence-base, mechanisms for directly influencing the PRSP process, as well as strengthening central government and DPOs’ capacity in this regard. Common facilitators for these actions were seen as the existence of a national disability umbrella body, disability-specific legislation, named Ministries for Disability, ratification of the UN Convention on the Rights of Persons with Disabilities (UNCRPD), and the fact that disability was already mentioned (albeit inadequately) in some PRSPs. Common inhibitors included negative attitudes towards disability, poor capacity in DPOs and government ministries, poor policy implementation, little ‘domestication’ of the UNCRPD, little political will or consultation with people with disabilities, as well as aggregating disability with other vulnerable groups, a lack of research in the area and poor coordination between DPOs.

 

Disability and the Global South (DGS), 2014, Vol. 1 No. 1

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