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Malawian mothers’ experiences of raising children living with albinism: A qualitative descriptive study

LIKUMBO, Naomi
DE VILLIERS, Tania
KYRIACOS, Una
2021

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Background: Albinism in humans is characterised by a reduced amount of pigment (melanin) present in the skin, hair follicles and the eye; approximately 7000–10 000 Malawians of all ages are affected. Children with these features face extreme forms of human rights abuses, even death.

 

Objectives: This study aims to describe Malawian mothers’ experiences, perceptions and understanding of raising children with albinism (CWA).

 

Methods: The study was conducted in 2018 using a qualitative descriptive design, with purposive sampling and voluntary participation. Mothers, 18 years and older, who had given birth to a CWA and who attended the dermatology clinic of a local public hospital participated. An interview guide used during standardised, open-ended interviews was translated from English to Chichewa using forward and backward translation. Interviews were conducted in Chichewa, audio recorded, transcribed and forward and back translated from English to Chichewa. Thematic data analysis was employed.

 

Results: The mean age of participants (N = 10) was 33 years; two had albinism. Emerging themes confirmed the existence of myths and stereotypes regarding albinism but from the mothers’ perspectives. Mothers reported: (1) some experiences of emotional pain, initially, but also love and acceptance of their children, despite adverse reactions of others; (2) their experiences of stigmatisation of their children and themselves, and of intended harm to their children, and (3) their own lack of knowledge and understanding of albinism.

 

Conclusion: In our limited study, mothers’ self-reported experiences of raising CWA in Malawi highlight the need for educational programmes on albinism at national level, particularly for families with a CWA, health professionals and educators.

An overview of assistive technology products and services provided in Malawi

SMITH, Emma M
EBUENYI, Ikenna D
KAFUMBA, Juba
JAMALI-PHIRI, Monica
MACLACHLAN, Malcolm
MUNTHALI, Alister
2020

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Background

Assistive technology is the products and services used by individuals with functional limitations to enable participation in society and realisation of rights afforded by the United Nations Convention on the Rights of Persons with Disabilities. The Assistive Product List is a comprehensive list of products identified as essential for access through universal health coverage. Key stakeholders, including organisations of persons with disabilities, civil service organisations, academic organisations and government ministries are collaborating to integrate assistive technology into policy and develop a priority assistive products list for Malawi.

 

Objective

To understand the organisational characteristics of, and assistive products provided by, key stakeholders working in AT in Malawi.

 

Study Design

Online survey of representatives from key stakeholder organisations.

 

Methods

We surveyed representatives of key stakeholder organisations to gather information regarding assistive technology product and service provision in Malawi. Responses were analysed using counts for closed-ended questions, and conventional content analysis for open-ended questions.

 

Results

A total of 36 of the 50 APL products were provided by eight organisations. Related services were provided for 36 of the 50 APL products by twelve organisations. Five organisations reported providing both products and services. Products and services are largely funded by donation and provided free to those who require them.

 

Conclusion

A range of organisations in Malawi play a role in assistive product delivery and related services. Coordinated AP delivery and service provision is required at a national level which is sustainable and inclusive, and is based on identified needs of the Malawian population.

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

MAGNUSSON, Lina
FINYE, Clifford
ENSTEDT, Catrin
May 2020

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

 

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

 

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

 

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

Perspectives on a mobile application that maps assistive technology resources in Africa

VISAGIE, Surona
MATTER, Rebecca
KAYANGE, George
CHIWAULA, Mussa
HARNISS, Mark
KAHONDE, Callista
August 2019

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Background: Access to assistive technology (AT) is poor in African countries because of a lack of knowledge, resources, services and products. A mobile application, the AT-Info-Map, was developed to map AT availability in southern Africa.

 

Objectives: This article aimed to describe users’ and suppliers’ perceptions of the AT-Info-Map app.

 

Method: Qualitative data were collected in Zambia, Botswana, Malawi and Lesotho, through nine focus group discussions with 72 participants. Participants included AT users, AT suppliers and representatives of disability organisations. Data were thematically analysed.

 

Results: Two broad themes, that is, usefulness of the AT-Info-Map application and technical issues and content, emerged from the data analysis. Subthemes under usefulness focused on the importance of using current technology, convenience of the app, the need for accuracy, responsiveness of supplier to user’s needs, influence on AT market and how the app creates an opportunity for networking. Challenges to download and navigate the app, the need for training in its use, exclusion of those not literate in English and those with visual impairments were subthemes under technical issues and content.

 

Conclusion: The app was perceived as an important step to increase access to AT for persons with disabilities in less resourced settings. The challenges that emerged from the data analysis have led to the development of a web-based system that will complement or replace the app and improve AT information provision. However, the information provided by the app and website is still only a partial solution to improve AT access in Southern Africa.

 

 

African Journal of Disability, Vol 8, 2019

Motivation Peer Training – Bridging the gap for people with mobility disabilities

NORRIS, Lucy K.
2017

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Background: Only 2% of people with disabilities in developing countries have access to basic services and rehabilitation.


Objectives: To bridge this gap, Motivation has been running Peer Training activities since 1993 and has identified that there is a growing need for Peer Training. The overall aim of Peer Training is for wheelchair users (Peer Trainers) to provide others (with similar disabilities) with the relevant knowledge on health issues, rights and skills to achieve a basic level of independence and greater quality of life.


Method: To test the impact of Peer Training, Motivation created a knowledge, skills and well-being questionnaire, which has been trialled in two locations: Kenya and Malawi.


Results: Overall, Motivation found that most participants reported an increase in knowledge, skills and well-being, supporting their experience that this training provides vital information and support mechanisms for wheelchair users in low- and middle-income countries. Further work is needed to ensure this tool measures the impact of Peer Training and lessons learnt have been identified to strengthen the methodology.


Conclusion: Although Peer Training is not a replacement for rehabilitation services, Motivation believes it is an effective way to not only increase knowledge and skills of persons with disabilities but also reduce the sense of social isolation that can often be a result of disability.

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.

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.

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.
 

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