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Living with disabled children in Malawi: Challenges and rewards

BARLINDHAUG, Grete
UMAR, Eric
WAZAKILI, Margaret
EMAUS, Nina
2016

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Background: Rehabilitation personnel need to be sensitive to the cultural aspects that constitute the environment of a disabled child’s family life.

 

Objectives: The aim of this study was to gain insight on how families experience parenting of disabled children and how the families experience the support provided by the rehabilitation system in Malawi.

 

Method: An anthropological field study combining interviews and observations was conducted in a rural district of Malawi in 2011. Permission was granted to follow four families, and this study presents the stories of two families, whose children have severe disabilities. We used phenomenological and narrative analyses to make sense of the stories.

 

Results: The findings indicate that families with disabled children invest time and emphasise care for their disabled children. They feel enriched by their experience despite challenging situations with little support from the rehabilitation services. High standards of care demonstrating positive and moral attitudes have earned these families respect in their communities. Storytelling has created an opportunity for the families to understand and interpret their challenging situation with inherent contextual meaning.

 

Conclusion: This study shows that families with disabled children draw on cultural and structural strengths that rehabilitation professionals should be aware of in their support to mothers and other caregivers of children with disabilities.

Graduates’ perceptions of prosthetic and orthotic education and clinical practice in Tanzania and Malawi

MAGNUSSON, Lina
SHANGALI, Harold G
AHLSTRÖM, Gerd
2016

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Background: Maintaining and improving the quality of prosthetics and orthotics education at the Tanzania Training Centre for Orthopaedic Technologists is essential for the provision of appropriate prosthetics and orthotics services in African countries.

 

Objectives: To describe how Tanzanian and Malawian graduates’ of the Diploma in Orthopaedic Technology perceive their education and how it could be improved or supplemented to facilitate clinical practice of graduates.

 

Methods: Nineteen graduates from the diploma course in orthopaedic technology were interviewed and phenomenographic analysis was applied to the data.

 

Results: Seven descriptive categories emerged, namely varied awareness of the profession before starting education, well-equipped teaching facilities, aspects lacking in the learning context, need for changes in the curriculum, enabling people to walk is motivating, obstacles in working conditions and the need for continuous professional development. All participants perceived possible improvements to the content and learning environment.

 

Conclusions: Prosthetic and orthotic education can be better provided by modifying the content of the diploma programme by dedicating more time to the clinical management of different patient groups and applied biomechanics as well as reducing the programme content focusing on technical aspects of prosthetic and orthotic practice. Graduates were not prepared for the rural working conditions and the graduates desired continued training.

The complexity of rural contexts experienced by community disability workers in three southern African countries

BOOYENS, Margaret
VAN PLETZEN, Ermien
LORENZO, Theresa
2015

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An understanding of rural communities is fundamental to effective community-based rehabilitation work with persons with disabilities. By removing barriers to community participation, persons with disabilities are enabled to satisfy their fundamental human needs. However, insufficient attention has been paid to the challenges that rural community disability workers (CDWs) face in trying to realise these objectives. This qualitative interpretive study, involving in-depth interviews with 16 community disability workers in Botswana, Malawi and South Africa, revealed the complex ways in which poverty, inappropriately used power and negative attitudes of service providers and communities combine to create formidable barriers to the inclusion of persons with disabilities in families and rural communities. The paper highlights the importance of understanding and working with the concept of ‘disability’ from a social justice and development perspective. It stresses that by targeting attitudes, actions and relationships, community disability workers can bring about social change in the lives of persons with disabilities and the communities in which they live.

Malawi : DoDMA exploring indigenous knowledge on disasters

KAZEMBE, Ida
May 2015

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This article contains an interview with Mulder Mkutumula, Mitigation Officer at the Department of Disaster Management Affairs in Malawi. Mr. Mkutumula discusses the importance of raising awareness and understanding of disaster risk reduction in Malawi, especially in the context of the 2015 floods

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

Learning from doing the EquitAble project: Content, context, process, and impact of a multi-country research project on vulnerable populations in Africa

MACLACHLAN, Mac
AMIN, Mutamad
MJI, Gubela
MANNAN, Hasheem
MCVEIGH, Joanne
MCAULIFFE, Eilish
AMADHILA, Elina
MUNTHALI, Alister
EIDE, Arne H
DUBE, A Kudakwashe
2014

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Background: The ‘EquitAble’ project carried out content analyses of policies and collected and analysed qualitative and quantitative data concerning access to health services in Sudan, Malawi, Namibia and South Africa. Our particular concern was to address the situation of people with disabilities, although not in isolation from other marginalised or vulnerable groups.

 

Objectives: This article reports on the content, context, process and impact of project EquitAble, funded by the European Commission Seventh Research Framework Programme, which brought together researchers from Ireland, Norway, South Africa, Namibia, Sudan and Malawi.

 

Method: After the 4-year project ended in February 2013, all members of the consortium were asked to anonymously complete a bespoke questionnaire designed by the coordinating team. The purpose of the questionnaire was to capture the views of those who collaborated on the research project in relation to issues of content, context, process and impact of the EquitAble project.

 

Results: Our results indicated some of the successes and challenges encountered by our consortium.

 

Conclusion: We identified contextual and process learning points, factors often not discussed in papers, which typically focus on the reporting of the ‘content’ of results.

The African disability scooter: efficiency testing in paediatric amputees in Malawi

BECKLES, Verona
MCCAHILL, Jennifer L
STEBBINS, Julie
MKANDAWIRE, Nyengo
CHURCH, John C T
LAVY, Chris
2014

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Purpose:

The African Disability Scooter (ADS) was developed for lower limb amputees, to improve mobility and provide access to different terrains. The aim of this study was to test the efficiency of the ADS in Africa over different terrains.

 

Method: 

Eight subjects with a mean age of 12 years participated. Energy expenditure and speed were calculated over different terrains using the ADS, a prosthetic limb, and crutches. Repeated testing was completed on different days to assess learning effect. 

 

Results:

Speed was significantly faster with the ADS on a level surface compared to crutch walking. This difference was maintained when using the scooter on rough terrain. Oxygen cost was halved with the scooter on level ground compared to crutch walking. There were no significant differences in oxygen consumption or heart rate. There were significant differences in oxygen cost and speed between days using the scooter over level ground, suggesting the presence of a learning effect. 

 

Conclusions:

This study demonstrates that the ADS is faster and more energy efficient than crutch walking in young individuals with amputations, and should be considered as an alternative to a prosthesis where this is not available. The presence of a learning effect suggests supervision and training is required when the scooter is first issued.

The African report on violence against children

THE AFRICAN CHILD POLICY FORUM (ACPF)
September 2014

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This report reveals that Africa’s children are still subjected to levels of physical and emotional violence despite more than a decade of efforts by governments. The report “constitutes the most comprehensive study to date of the phenomenon in Africa and lays down the priorities for action at various levels that will be required to achieve better protection of children.  The report’s findings are principally informed by large scale surveys undertaken in Ethiopia, Kenya, Malawi, Mali, Morocco, Uganda, Zambia and Zimbabwe, and a review of more than 75 studies and reports. It reveals that a distinctive range of social, cultural and economic factors can combine to increase the risk of African children facing increased levels of physical and emotional violence in domestic settings, at schools, in institutions and in the workplace. These risks may be exacerbated in times of political upheaval and conflict, and girls are particularly vulnerable”

The Malawi key informant child disability project

TATARYN, Myroslava
et al
August 2014

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“The aim of this study was to use the KIM to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. The Key Informant Method (KIM) is a novel method for generating these data. KIM focuses on training community volunteers to identify local children who may have disabilities, who are then screened by medical professionals and referred on for appropriate health and rehabilitation interventions. Consequently, the method offers an alternative to population-based surveys of disability in children, which can be costly and time consuming”

The Malawi key informant child disability project : summary report

TATARYN, Myroslava
et al
August 2014

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This report provides a summary of research project conducted by the International Centre for Evidence in Disability at the London School of Hygiene and Tropical Medicine and the University of Malawi. The study used the Key Informant Method (KIM) to estimate the prevalence of moderate/severe physical, sensory and intellectual impairments and epilepsy among children in two districts (Ntcheu and Thyolo) in Malawi. This report presents summary of the study’s background information, aims and objectives, key findings, conclusions and recommendations

Applied research on disability in Africa : general mapping

INTERNATIONAL FOUNDATION OF APPLIED DISABILITY RESEARCH (FIRAH)
2014

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“The goal of this literary review is to report on existing knowledge about applied research on the African continent, regarding the living conditions of people with disabilities, poverty, violence and sexual abuse especially regarding children and women with disabilities, community-based rehabilitation and employment”

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

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

2014

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Articles include:

  • EDITORIAL :  Introducing Disability and the Global South (DGS): we are critical, we are open access!
  • Youth with Disabilities in Law and Civil Society:  Exclusion and inclusion in public policy and NGO networks in Cambodia and Indonesia
  • Performing the Stare in Indra Sinha’s Animal’s People  
  • Disability Sport in Sub-Saharan Africa: From Economic Underdevelopment to Uneven Empowerment
  • Does Africa Dream of Androids?
  • Mendicidad y discapacidad en la Ciudad de Buenos Aires: un síntoma de nuevas formas de  vulnerabilidad social
  • Facilitating Disability Inclusion in Poverty Reduction Processes: Group Consensus Perspectives from Disability Stakeholders in Uganda, Malawi, Ethiopia, and Sierra Leone
  • Disability, poverty and Education: perceived barriers and (dis)connections in rural Guatemala 

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi

MUNTHALI, Alister
BRAATHEN, Stine H
GRUT, Lisbet
KAMALERI, Yusman
INGSTAD, Benedicte
2013

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Background: Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi.

 

Objectives: This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households’ productivity.

 

Method: A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews.

 

Results: The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy.

 

Conclusion: The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.
 

Disability transitions and health expectancies among adults 45 years and older in Malawi : a cohort-based model

PAYNE, Colin F
MKANDAWIRE, James
KOHLER, Hnas-Peter
May 2013

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This article presents the results of study that investigated how poor physical health results in functional limitations that limit the day-to-day activities of individuals in domains relevant to this subsistence-agriculture context. Participants came from 2006, 2008, and 2010 waves of the Malawi Longitudinal Survey of Families and Health, a study of the rural population in Malawi. The study found that individuals in this population experience a lengthy struggle with disabling conditions in adulthood, with high probabilities of remitting and relapsing between states of functional limitation. Given the strong association of disabilities with work efforts and subjective well-being, this research suggests that current national health policies and international donor-funded health programs in SSA inadequately target the physical health of mature and older adults.

 

PLoS Med Vol 10, Issue 5

Mainstreaming disability in the new development paradigm : evaluation of Norwegian support to promote the rights of persons with disabilities

INGDAL, Nora
NILSSON, Annika
2012

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"This report is the result of an external and independent evaluation of the Norwe¬gian Support to Promote the Rights of Persons with Disabilities in the last 11 years. The intention of the evaluation is to analyse the results of targeted and mainstreamed initiatives towards achieving the rights of persons with disabilities...The methodology included field visits in the four case countries: Malawi, Nepal, the Palestinian territory and Uganda to obtain a deeper understanding of how the rights of persons with disabilities have been promoted, and estimate the possible contributions of the Norwegian support. Afghanistan was included as a desk study"
Note: The report is available electronically and in printed version. A braille copy can be downloaded from the web. The four country reports, written in English, are available electronically. The summaries of the country studies are made available electronically, with translations to the relevant local languages Nepali, Arabic and Chewa. In addition an easy-read version in English and Norwegian of the main report is available electronically

Did what? Research project in brief : A-PODD in Malawi

WAZAKILI, Margaret
et al
October 2011

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"This Did What? summarises the activities of the African Policy on Disability and Development (A-PODD) project in Malawi. It outlines the statement of the problem, research context, the A-PODD project itself, the methods used, and the impact of our work. The policy brief also provides recommendations to support the promotion of disability inclusion in the national development agenda. (It) conclude(s) with a list of research and ‘workshop’ participants, the names of the larger A-PODD research team, and acknowledgements"

Disability and poverty in developing countries : a snapshot from the World Health Survey

MITRA, Sophie
POSARAC, Aleksandra
VICK, Brandon
April 2011

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This paper outlines the economic and poverty situation of working-age persons with disabilities and their households in 15 developing countries. Using data from the World Health Survey, the study presents estimates of disability prevalence, individual-level economic well-being, household-level economic well-being, and multidimensional poverty measure. Detailed appendices are provided to support the results of the study. This paper is useful for people interested in the social and economic conditions of people with disabilities in developing countries
Social Protection Discussion Paper No 1109

Strategic funding : strengthening partnernship for real development

HEALTHLINK WORLDWIDE
June 2010

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'This learning paper considers how strategic funding allows community based and non-governmental organisations the flexibility to develop their responses to HIV and AIDS; it creates the space for organisational development to enable those changes and for organisations to learn from, and share with, each other'

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