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‘I felt pain. Deep pain…’: Experiences of primary caregivers of stroke survivors with aphasia in a South African township

MASUKU, Khetsiwe P.
MOPHOSHO, Munyane
TSHABALALA, Muziwakhe
2018

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Background: Aphasia is an acquired impairment in language and in the cognitive processes that underlie language. Aphasia affects the quality of life of the person with aphasia (PWA) and his or her families in various ways in diverse contexts and cultures. It is therefore important that speech language therapists understand how different contextual and cultural factors may mediate experiences.


Purpose: The aim of the study was to describe the caregiving experience of female caregivers of PWA residing in Tembisa, a township situated in the east of Johannesburg.


Method: Qualitative, semi-structured interviews were conducted with primary caregivers of PWA. Purposive sampling was used to recruit 14 primary caregivers of PWA who were daughters, daughters-in-law or wives of the PWA. The interviews were conducted in participants’ first language and analysed by the researcher, who is proficient in isiZulu. Data were analysed according to the principles of thematic analysis.


Results: Findings indicated that caregivers are unfamiliar with aphasia and the support available to them. Participants experienced frustration and found communication to be challenging owing to their lack of communication strategies. The participants’ experiences reflected their context-specific experiences, such as feminisation of caregiving, barriers to healthcare, the influence of low health literacy and contextual perspectives on stroke and aphasia.


Conclusions: Contextual factors of caregivers in Tembisa have an influence on the experiences between caregivers and PWA, the feelings of individuals and families and health-seeking behaviours of individuals and families.

The 8 steps + : The role of community development organizations in providing holistic wheelchair services

ACCELERATING CORE COMPETANCIES FOR EFFECTIVE WHEELCHAIR SERVICE AND SUPPORT (ACCESS) PROJECT
October 2017

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This report suggests a “twin-track” approach based on the World Health Organization’s Guidelines on the Provision of Manual Wheelchairs in Less Resourced Settings, an eight-step process, and dedicated disability inclusion programming, the “plus.” By following this 8 Steps+ approach, community development organizations can provide appropriate wheelchairs and empower their constituencies to exercise their rights and fundamental freedoms.  

Disability Data Collection in Community-based Rehabilitation

Sunil Deepak
Francesca Ortali
Geraldine Mason Halls
Tulgamaa Damdinsuren
Enhbuyant Lhagvajav
Steven Msowoya
Malek Qutteina
Jayanth Kumar
December 2016

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Today there are Community-based Rehabilitation (CBR) programmes in a large number of countries. In many countries, the CBR approach is a part of the national rehabilitation services. However, there is a lack of reliable data about persons with disabilities who benefit from CBR and the kind of benefits they receive.

 

This article reviews the disability data collection systems and presents some case studies to understand the influence of operational factors on data collection in the CBR programmes.

 

The review shows that most CBR programmes use a variable number of broad functional categories to collect information about persons with disabilities, combined occasionally with more specific diagnostic categories. This categorisation is influenced by local contexts and operational factors, including the limitations of human and material resources available for its implementation, making it difficult to have comparable CBR data.

 

Therefore, any strategies to strengthen the data collection in CBR programmes must take these operational factors into account.

 

Human Rights

www.macao-tz.org
December 2014

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Malezi AIDS Care Awareness Organization (MACAO) is a non-profit organization reaching out to neglected Indigenous people in Ngorongoro District, Arusha Region of Northern Tanzania.  Macao founded in 2003, Macao is a humanitarian organization that provides assistance to approximately 200,000 Indigenous Maasai community in Ngorongoro district for addressing needs of water and sanitation, food security, health Care Research, Education, Research environment, Maasai Traditional Research, Human Rights and sustainable economic development by strengthening their livelihoods.  In addition to responding to major relief situations, MACAO focuses on long-term community development through over 4 Area Development Project. We welcome the donors and volunteers to join us in this programs, we are wolking in ruro villages.

Conduct an accessibility audit in low and middle income countries

NOUVELLET, Hugues
June 2014

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This guide aims to assist professionals in conducting an accessibility audit, and is aimed at Handicap International professionals who have responsibility for developing, implementing or analysing accessibility activities. Within the framework of inclusive local development, an accessibility audit is a complex, substantial and technical process to implement involving a large number of different stakeholders, increase time preparation and technical specialised skills for making recommendations to remove barriers. An accessibility audit is a participatory democracy exercise which can be used as the basis to form relationships between stakeholders in a municipality accessibility commission or even a municipality commission for inclusive development, who will have responsibility for suggesting, studying, organising and implementing actions to improve accessibility

Children with Disability in Nepal: New Hope Through CBR?

MOL, Tanja Ingeborg
BRAKEL, Wim Van
SCHREURS, Merel
2014

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Purpose: This study assesses the impact of a community-based rehabilitation (CBR) programme on the quality of life (QoL) of children with disability and their families.

 

Methods: A qualitative approach was applied, using two techniques - a ranking line and semi-structured interviews. Nineteen children (ranging from 4 –18 years of age) were interviewed in their homes located in three villages - Chapakhori, Bokraha and Madesha - in Nepal.

 

Results: Children with disability and their families ranked physical health, psychological health, empowerment and level of independence as the most important factors for their QoL. Of the 19 children, 13 had experienced positive changes in their life and 1 child reported a negative change. The positive changes related mainly to their physical health and functioning. The impact of these changes was felt in the ‘social’, ‘level of independence’ and ‘empowerment’ outcome categories. The children mentioned that they had more friends, experienced less stigma, could go to school and were more hopeful about the future.

 

Conclusions: This CBR programme has brought about changes in the QoL of all children with disability and their families. The majority of them reported a positive impact.

 

 

Spatial variation in the disability-poverty correlation : evidence from Vietnam

MONT, Daniel
NGUYEN, Cuong
August 2013

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"Poverty and disability are interrelated, but data that can disentangle the extent to which one causes the other is not available. However, data from Vietnam allows us to examine this interrelationship in a way not previously done. Using small area estimation techniques, we uncover three findings not yet reported in the literature. First, disability prevalence rates vary significantly within a county even at the district level. Second, the correlation between disability and poverty also varies at the district level. And most importantly, the strength of the correlation lessens based on district characteristics that can be affected by policy. Districts with better health care and infrastructure, such as roads and health services, show less of a link between disability and poverty, supporting the hypothesis that improvements in infrastructure and rehabilitation services can lessen the impact of disability on families with disabled members"
Working Paper Series, No 20

Lessons from the evolution of a CBR programme for people affected by leprosy in Northern Nigeria

EBENSO, Bassey
et al
December 2010

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"This paper reviews the 13-year evolution of the social economic activities in Northern Nigeria from a welfare-oriented to a community-centred programme for people affected by leprosy...Findings revealed that the transformation among other things, demanded formulation of new programme policies and guidelines; and staff training in CBR principles and practice. Findings also showed that adopting CBR principles and community development projects can stimulate improvements in living conditions,self-esteem and acceptance of people affected by leprosy into the community"
Leprosy Review Journal, Vol 81

Overcoming the barriers for participation by the disabled : an appraisal and global view of community-based rehabilitation in community development

OLAOGUN, M O B
NYANTE, G G G
AJEDIRAN, A
June 2009

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"The number of people with disability worldwide, and particularly in the developing countries, is increasing due to wars, conflicts, vehicular accidents, chronic diseases, mental impairment, birth defects and malnutrition. Many of these people face participation-restriction in activities of life. This paper appraises the emergence and the global view of community-based rehabilitation (CBR). The review and remodelling of CBR in developing countries and its inclusion in community development will enhance the reintegration of the disabled individuals into the society"
African Journal of Physiotherapy and Rehabilitation Sciences, Vol 1, No 1

CBR policy development and implementation

HARTLEY, Sally
OKUNE, Joan
Eds
2009

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This book provides an overview of current community-based rehabilitation (CBR) knowledge and shows how this information has been interpreted and implemented in the African context. It has been developed from conference presentations and discussions that took place in South Africa in 2007. It is useful for people interested in general CBR information and CBR in Africa

Local rehabilitation workshops - LOREWO

December 2006

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This website provides information about how to acquire assistive devices and rehabilitation services that are flexible and designed to be adapted to suit local situations and using existing, local resources. It would be useful for anyone with an interest in providing access to assistive devices in low and middle income countries

CBR as part of community development : a poverty reduction strategy

HARTLEY, Sally
Ed
2006

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Contents: 1. Community-based Rehabilitation Africa Network (CAN) 2. CBR as part of community development and poverty reduction 3. CBR as part of social, cultural and political developement 4. CBR and economic empowerment of persons with disabilities 5. Community-based rehabilitation as part of inclusive education and development 6. CBR as part of community health development 7. HIV and AIDS, and disability 8. International Classification of Functioning, Disability and Health (ICF) and CBR 9. CBR research as part of community development 10. Information sharing and community-based rehabilitation 11. The Malawi directory of disability organisations

Disability and social change : a South African agenda

WATERMEYER, Brian
et al
2006

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This book has been produced to promote the social rights of people with disabilities. It presents extensive research on the South African context of disability and society and draws upon contributions from a diverse range of specialists in the field. A key aim of the text is to unite the disability movement in South Africa through research discourse, as a means to drive processes of social change. Key sections of the book cover: theoretical approaches to disability; governmental and societal responses to disability; disability and education; disability poverty and social security; disability and service provision; disability and human spaces. This book would be of interest to anybody working in the fields of disability, development and social inclusion

Community-based rehabilitation : new challenges

RULE, Sarah
LORENZO, Theresa
WOLMARANS, Milani
2006

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The chapter reports on two CBR programmes in South Africa: the CBR Education and Training for Empowerment (CREATE) programme in Pietermaritzburg and the CBR partnership programme between Disabled People South Africa (DPSA) and the provincial Department of Health in Mpumalanga. It explores the implementation of CBR as a strategy for community development, the development of grassroots workers and challenges facing CBR
Chapter 20 from ‘"Disability and social change : a South African agenda " edited by WATERMEYER, Brian et al

ILEP learning guide four : how to prevent disability in leprosy

CROSS, Hugh
MAHATO, Margaret
2006

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"This book is for all health workers who may have to help people who have nerve damage to their eyes, hands and feet. It will help them to encourage patients to develop a lifetime habit of caring for nerve-damaged parts. The content of this book complements the recommendations in the Operational Guidelines of the World Health Organization"
Note: This resource is available to download in three parts

Evaluation of the CBR program in Palestine : from the perspective of persons with disabilities themselves

NILSSON, Annika
QUTTEINA, Malek
December 2005

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"This report documents an evaluation of the Community Based Rehabilitation program (CBRP) in Palestine that investigated the impact of the program from the perspective of disabled people and their families. The main objectives of the evaluation were to ascertain to what extent the CBRP has contributed to improving the quality of life of disabled people and suggest ways in which the program can more effectively meet the needs of people with disability"

Empowered to differ : stakeholders' influences in community-based rehabilitation

FINKENFLÜGEL, Harry
2004

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'Empowered to differ' equally addresses researchers and CBR professionals. The book gives an overview about the developments in the field of community-based rehabilitation since 1978, using the examples of CBR projects in Southern Africa. Finkenflügel asks for the knowledge and the evidence for CBR and to what extent the roles, interests and powers of stakeholders can contribute to this knowledge and evidence

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