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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.

Impact of Covid-19 on the education of children with disabilities in Malawi: results from a survey with parents

MBUKWA-NGWIRA, Jenipher
TANEJA JOHANSSON, Shruti
SINGAL, Nidhi
March 2021

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The overall objective of this study was to examine the impact of school closures due to Covid-19 on the education of children with disabilities attending primary schools. Using phone surveys, 99 parents/carers were interviewed to gain insight into the educational experiences of their children, any barriers faced and their main concerns. All the families had at least one child with a disability in the 6-15 years age group, with approximately six families reporting two or more children with disabilities (though not in the same age range)

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.

Long-term outcomes for children with disability and severe acute malnutrition in Malawi

LELIJVELD, Natasha
GROCE, Nora
PATEL, Seema
NNENSA, Teresa
CHIMWEZI, Emmanuel
GLADSTONE, Melissa
MELLEWA, Macpherson
WELLS, Jonathon
SEAL, Andrew
KERAC, Marco
October 2020

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Severe acute malnutrition (SAM) and disability are major global health issues. Although they can cause and influence each other, data on their co-existence are sparse. This study aims to describe the prevalence and patterns of disability among a cohort of children with SAM.

A longitudinal cohort study in Malawi followed SAM survivors up to 7 years postdischarge. Clinical and anthropometric profiles were compared with sibling and community controls. Disability at original admission was identified clinically; at 7-year follow-up a standardised screening tool called ‘the Washington Group Questionnaire’ was used.

 

BMJ Global Health 2020;5:e002613

http://dx.doi.org/10.1136/bmjgh-2020-002613

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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The aim of this study was to investigate access for Malawian prosthetic and orthotic users with lower limb disabilities to basic human rights such as health and a standard of living adequate for health, education, work, marrying and establishing a family, and voting. A further aim was to investigate differences among subgroups based on gender, level of income, and residential location.

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

 

Disability and Rehabilitation

https://doi.org/10.1080/09638288.2020.1752316

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.

Estimated prevalence of disability and developmental delay among pre‐school children in rural Malawi: Findings from ‘Tikule Limodzi’, a cross‐sectional survey

MURPHY, Rachel
et al
January 2020

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This study measured and compared the prevalence of disability and developmental delay among children attending preschool centres in rural Malawi. A cross-sectional survey was conducted in 48 preschool centres in Thyolodistrict, Malawi. Data were collected from parents or guardians of 20 children per centre. Disability was ascertained using the Washington Group/UNICEF Child Functioning Module. Child development was measured using the language and social domains of the Malawi Development Assessment Tool. A total of 960 children were enrolled; 935 (97.4%) children were assessed for disability and 933 (97.2%) for developmental delay; 100 (10.7%) children were identified as having a disability

 

Child Care Health Dev. 2020;46:187–194.
https://doi.org/10.1111/cch.12741

Children with hearing impairment in Malawi, a cohort study

MULWAFU, Wakisa
et al
October 2019

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The aim of this research was to assess the outcome of children with ear and hearing disorders 3 years after initial diagnosis, in terms of referral uptake, treatment received and satisfaction with this treatment. It also aimed to assess the social participation of the affected children, specifically, their ability to make friends and communicate needs, and their enrolment at school

752 children had been diagnosed in 2013 as having a hearing impairment and 307 (40.8%) children were traced for follow-up in 2016. 

 

Bulletin of the World Health Organization, Volume 97, Number 10, October 2019, 645-728

http://dx.doi.org/10.2471/BLT.18.226241

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

Rapid needs assessment of older people Cyclone Idai, Malawi

HELPAGE INTERNATIONAL
MALAWI NETWORK OF OLDER PEOPLES ORGANISATIONS (MANEPO)
March 2019

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In early March 2019, heavy rains and floods affected the majority of the districts in southern Malawi. At least 115,000 were affected, with scores of fatalities, injured and missing persons. The situation intensified when Cyclone Idai reached Malawi, increasing the devastation caused by heavy rain weeks earlier. When Cyclone Idai caused the Shire river to reach capacity and flood, the districts of Chikwawa and Nsanje were among the worst affected. The aim of this rapid needs assessment was to inform the design of  HelpAge International’s own humanitarian response to the devastating impact of Cyclone Idai on older people in Malawi. The Malawi Network of Older Persons’ Organisations (MANEPO) and HelpAge International jointly conducted the assessment in Chikwawa and Nsanje districts in March 2019. The report also aims to support organisations operating in the affected areas to develop inclusive programmes and support advocacy for the rights of older people to be upheld in the response. The report contains key findings of the assessment, together with observations and analysis. 

Disability and global health: Special issue of International Journal of Environmental Research and Public Health

KUPER, Hannah
POLAK, Sarah
Eds
2019

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Papers included in this special issue are:

 

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.

Disability & the Global South (DGS), 2018, Vol. 5 No. 2 - Special issue: Intersecting Indigeneity, Colonisation and Disability

2018

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Articles include:

  • Editorial: Intersecting Indigeneity, colonialisation and disability
  • Yuin, Kamilaroi, Sámi, and Maori people’s reflections on experiences as ‘Indigenous scholars’ in ‘Disability Studies’ and ‘Decolonisation’
  • Audiology and Speech-Language Pathology: Practitioners’ Reflections on Indigeneity, Disability and Neo-Colonial Marketing
  • ‘My granddaughter doesn’t know she has disabilities and we are not going to tell her’: Navigating Intersections of Indigenousness, Disability and Gender in Labrador
  • Disabling Bodies of/and Land: Reframing Disability Justice in Conversation with Indigenous Theory and Activism
  • The Convention on the Rights of Persons with Disabilities and its implications for the health and wellbeing of indigenous peoples with disabilities: A comparison across Australia, Mexico and New Zealand
  • Challenges in global Indigenous–Disability comparative research, or, why nation-state political histories matter
  • ‘Black on the inside’: albino subjectivity in the African novel
  • The role of indigenous and external knowledge in development interventions with disabled people in Burkina Faso: the implications of engaging with lived experiences
  • An intersection in population control: welfare reform and indigenous people with a partial capacity to work in the Australian northern territory
  • Inclusion of marginalised Aboriginal and Torres Strait Islander Peoples with neurocognitive disability in the National Disability Insurance Scheme (NDIS)

 

Disability, health and human development

MITRA, Sophie
2018

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This open access book introduces the human development model to define disability and map its links with health and wellbeing, based on Sen’s capability approach. The author uses panel survey data with internationally comparable questions on disability for Ethiopia, Malawi, Tanzania and Uganda. It presents evidence on the prevalence of disability and its strong and consistent association with multidimensional poverty, mortality, economic insecurity and deprivations in education, morbidity and employment. It shows that disability needs to be considered from multiple angles including aging, gender, health and poverty. Ultimately, this study makes a call for inclusion and prevention interventions as solutions to the deprivations associated with impairments and health conditions.

 

Chapters include:

  • The Human Development Model of Disability, Health and Wellbeing
  • Measurement, Data and Country Context
  • Prevalence of Functional Difficulties
  • Functional Difficulties and Inequalities Through a Static Lens
  • Dynamics of Functional Difficulties and Wellbeing
  • Main Results and Implications

 

‘Black on the inside’: albino subjectivity in the African novel

LIPENGA, Ken Junior
NGMIRA, Emmanuel
2018

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The last decade has seen increased attention to the treatment of people with albinism in several African countries, particularly the peril they find themselves in due to stigma and superstition. As a way of countering these misconceptions, there has been educative activism from legal, medical as well as religious perspectives. In this paper, we draw upon a different discourse- literary representation- arguing that in selected African novels, the authors employ a variety of strategies that counter harmful stereotypes about albinism, and in the process act as literary interventions that enable an appreciation of the person behind the skin condition. Drawing from insights in Literary Disability Studies, the discussion examines the representation of albinism in four African novels: Petina Gappah’s The Book of Memory (2015), Meg Vandermerwe’s Zebra Crossing (2013), Unathi Magubeni’s Nwelezelanga: The Star Child (2016), and Jenny Robson’s Because Pula Means Rain (2000), and highlights the way albinism is presented as bodily condition that intersects with other experiences on the continent, including indigenous epistemologies, gender, sexuality and family relationships. 

 

Disability and the Global South, 2018, Vol.5, No. 2

Tikule limodzi: Let’s grow together. The impact caregiver training has on children with disabilities in Malawi - Baseline report

MURPHY, Rachel
et al
December 2017

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Tikule Limodzi (‘Let’s Grow Together’) was a three-year (2015 to 2018) multi-agency study that sought to promote the inclusion of children with disabilities in community-based childcare centres (CBBCs) in a rural district of Southern Malawi. The main purpose of the project was to explore ways of developing the skills of caregivers to support children with disabilities in CBCCs through the use of inclusive strategies and resources. This mixed-method study also sought to share evidence that will aid the Malawi government and other stakeholders to better understand the complex dynamics that ‘enable’ or ‘inhibit’ quality early childhood development (ECD) for children with disabilities. 

This report presents the baseline pre-intervention data from a cluster-randomised controlled trial (CRCT) of a caregiver training intervention targeting CBCCs in Thyolo district in the Southern Region of Malawi. The trial involved 48 CBCCs randomly allocated to the control and intervention arms (24 CBCCs each). The training (intervention) consisted of a two-week training programme based on the basic National ECD Caregiver Training Programme, with additional modules on how to improve the inclusion and participation of children with disabilities in CBCCs. The baseline data was collected between December 2016 and May 2017. The aim of the trial was to measure changes in child development outcomes (equal to actual age), school readiness, caregiver satisfaction and motivation, changes in CBBC environment and routine and structure, as well as caregiver retention.

Disability, health and human development

MITRA, Sophie
October 2017

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This book presents new research on disability, health, and wellbeing in four countries (Ethiopia, Malawi, Tanzania and Uganda) . The primary focus is empirical. It also makes a conceptual contribution as it presents a new model of disability based on the human development and capability approach. It addresses four questions: 

  • How should disability be defined to analyse and inform policies related to wellbeing?
  • What is the prevalence of functional difficulties?
  • What inequalities are associated with functional difficulties?
  • What are the economic consequences of functional difficulties? 

Detailed data analysis using large-scale household survey datasets is combined with an interactional model of disability based on Amartya Sen’s capability approach.

 

DOI 10.1057/978-1-137-53638-9

 

First of book series: the Palgrave Studies in Disability and International Development

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.

Advancing the access of deafblind women and girls to sexual and reproductive health

VISUAL HEARING IMPAIRMENT MEMBERSHIP ASSOCIATION (VIHEMA)
2017

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Activities to promote the access of deafblind women and girls to sexual and reproductive health are reported via brief descriptions of what happened, what changed and what worked. Activites included: training the deafblind women in their rights;training relatives of deafblind women, giving advice on general care, as well as highlighting the importance of supporting their sexual and reproductive health choices and promoting family planning; tackling the issue of the forced sterilization; awareness raising via newspapers and radio and improving livelihoods.

 

 

Integration of childhood TB into maternal and child health, HIV and nutrition services. A case study from Malawi.

VERKUIJL, Sabine
et al
September 2016

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"Country case studies were conducted in Uganda and Malawi in order to document and analyse experiences and perspectives on childhood TB integration into other programmes at country level and related health system requirements. The aim was to inform the broader thinking about integration of childhood TB services. The Malawi case study identified and described different approaches to integration and unpacked the integration process. The perspective on TB integration of different relevant health actors at national and district level are described. The case study used a health systems approach and focused on the community and primary levels of the health system, paying attention to factors related to children of different ages in a lifecycle approach. The method for the case study included document review, consultations with key health actors at national and district level, a facility visit and a participatory workshop at national level. An analytical framework approach was used to investigate the extent of integration of childhood TB interventions in multiple dimensions. An assessment tool for the case studies was developed, summarising the assessment questions by theme, combining a number of existing tools and frameworks on health care integration in general and childhood TB and benchmarks for integrated community case management (iCCM)"

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