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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.

How pain management for children with cerebral palsy in South African schools complies with up-to-date knowledge

JOHNSON, Ensa
NILSSON, Stefan
ADOLFSSON, Margareta
November 2019

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Background: Pain in children with cerebral palsy (CP) has its sources in musculoskeletal problems that can influence learning in a school setting. Best pain management is essential for these children, but school staff may not keep up to date with the latest developments and interventions. Therefore, staff’s perceptions of beneficial strategies may not comply with contemporary scientific knowledge about effective evidence-based interventions.

 

Objectives: This study investigated how pain management intervention for children with CP in South African schools complied with international scientific knowledge about evidence-based interventions. The intention was to provide support for an update of knowledge on both individual level (i.e. professionals) and system level (i.e. decision makers).

 

Method: Five focus groups were conducted with staff members at five schools for children with special educational needs in South Africa. Manifest and latent content analyses of professional statements identified interventions reported as beneficial and related them to higher and lower levels of intervention evidence as reported at the time of data collection.

 

Results: Most treatment strategies concerned motor functioning that fell within the framework of physiotherapists and occupational therapists. Access to orthopaedic expertise was limited, waiting times were long and medication for spasticity treatment was not offered.

 

Conclusion: A discrepancy between published evidence and clinical practice for pain management in children with CP in South African school settings was noted. Suggestions for improved early intervention to identify children’s hips at risk through surveillance programmes; and orthopaedic management are proposed to prevent deformities and unnecessary suffering in South African children with CP.

 

 

African Journal of Disability, Vol 8, 2019

The experiences of parents of children living with disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province

TIGERE, Brian
MAKHUBELE, Jabulani C.
September 2019

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Background: Parents of children with disabilities have faced difficulties in looking after their children, be it socially, economically and financially. Parents in rural areas are mainly left with a huge burden, as there is a lack of services and support from both the state and non-governmental organisations. Parents in Sekhukhune district, a rural area in Limpopo province of South Africa, face challenges in raising their disabled children related to lack of resources and lack of services at their disposal.

 

Objectives: This study focuses on the experiences and life circumstances faced by parents of children living with different types of disabilities at Lehlaba Protective Workshop in Sekhukhune district of Limpopo province, South Africa.

 

Method: The study consisted of 14 participants who are parents of children living with disabilities. An interview guide with a set of questions was utilised to gather data. Thematic analysis was used to analyse the data and themes that emerged were grouped together.

 

Results: Themes that emerged from the data showed that most of the participants had varying understandings on the causes of disabilities to their children. The participants also were of the view that a ‘cure’ for disability was available medically, spiritually or through traditional African medicine. The study also brought the notion of absent fathers, as most men do not want to be associated with children who are disabled. Stigmatisation of the parents was also a theme that the study revealed. The parents are subjected to name labelling as they are viewed to be practising witchcraft or to be paying for their sins they committed.

 

Conclusion: Parents of children with disabilities are in their own battle in raising their children. There is a lack of support structures available for parents of children living with disabilities. There is a lack of legislation available for protecting and promoting the rights of children with disabilities. The researchers concluded that raising a child with a disability is expensive, time-consuming and straining.

 

 

African Journal of Disability, Vol 8, 2019

South African stakeholders’ knowledge of community-based rehabilitation

RULE, Sarah
ROBERTS, Anton
McLAREN, Pamela
PHILPOTT, Susan
September 2019

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Background: Community-based rehabilitation (CBR) is a complex concept and strategy that has been implemented in diverse ways globally and in South Africa. Internationally, some stakeholders have described CBR as confusing, and this may influence implementation. A southern African study reports that there is insufficient evidence of the understanding of CBR in the region to influence training, policy and practice.

 

Objectives: The aim of this study was to investigate South African stakeholders’ knowledge of CBR.

 

Method: This article reports on an electronic survey that was part of a larger mixed methods study. Based on the sample of 86 respondents, descriptive statistics were used to analyse the quantitative data and thematic analysis for the qualitative data.

 

Results: The majority of respondents had had exposure to CBR, but almost a quarter had no knowledge of the CBR guidelines and matrix. The results revealed varying knowledge concerning the key concepts of CBR, its beneficiaries and its funders. Respondents identified persons with disabilities as having a central role in the implementation of CBR. Problems with the visibility of CBR programmes were noted, as well as misunderstandings by many therapists.

 

Conclusion: The implementation of CBR, and its goal of ensuring the rights of persons with disabilities, is negatively affected by the confusion attached to the understanding of what CBR is. The misunderstandings about, and lack of visibility of, CBR in South Africa may hinder its growing implementation in the country in line with new government policies.

 

 

African Journal of Disability, Vol 8, 2019

A conceptual framework for designing Ambient assisted living services for individuals with disabilities in Uganda and South Africa

KYAZZE, Michael
WESSON, Janet
NAUDE, Kevin
August 2019

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Background: Individuals with disabilities experience difficulty in using various everyday technologies such as computers and smartphones.

 

Objectives: To propose a conceptual framework that will lead to the development of practical and user friendly assistive technology.

 

Method: A literature review of challenges faced by individuals with physical disabilities was carried out. Interviews with adults with physical disabilities in Kampala, Uganda, and Port Elizabeth, South Africa, identified three main challenges with regard to using technology: using a mobile phone, controlling an electronic environment and using a computer.

 

Results: The challenges identified can be solved by taking into consideration the needs of individuals with disabilities. However, the design of new technologies and interaction techniques, such as natural hand gestures and voice, as input mechanisms has able-bodied individuals in mind. Individuals with disabilities are considered as an afterthought. The main reason for this is that individuals with a disability are a minority and hence it may not make economic sense for technology innovators to cater for their unique needs. A lack of practical guidelines on how to design for individuals with disabilities is another reason why designing for individuals with disabilities is often an afterthought.

 

Conclusion: This article proposes a conceptual framework that can be used by researchers and technology designers in order to design products that could cater for the unique needs of individuals with disabilities. The article also emphasises the importance of exploring alternative interaction techniques, as they could enable individuals with disabilities to fully utilise technologies such as smart phones, computers and smart home electronics.

 

 

African Journal of Disability, Vol 8, 2019

Assistive technology enables inclusion in higher education: The role of Higher and Further Education Disability Services Association

LYNER-CLEOPHAS, Marcia
August 2019

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Background: Using assistive technology is one way to foster inclusion of students in the post-school education and training (PSET) sector.

 

Objectives: Higher and Further Education Disability Services Association (HEDSA) enables the sharing of new knowledge about assistive technologies through its symposia, and making information available on its website. Additionally, it facilitates dialogue and collaboration amongst institutions in the PSET network using a listserv and newsletters, given that PSET institutions are spread countrywide.

 

Method: This is an article based on a presentation at the 5th African Network of Evidence-to-Action in Disability (AfriNEAD) conference in Ghana in 2017 that focused on the value of assistive technology for students pursuing studies in the PSET sector and the role played by HEDSA in South Africa.

 

Results: The positive gains and existing gaps in disability inclusion in the higher education sector in South Africa are highlighted, with reference to access to technology. All higher education institutions have internet access and can thereby make use of listservs to communicate information. MapAbility is a way that prospective students can gain a snapshot view of available resources at institutions of learning, using the internet.

 

Conclusion: An association such as HEDSA plays a critical role in the PSET sector to enhance disability inclusion using online tools to disseminate information.

 

 

African Journal of Disability, Vol 8, 2019

Multilingualism and augmentative and alternative communication in South Africa – Exploring the views of persons with complex communication needs

TONSING, Kerstin M.
Van NIEKERK, Karin
SCHLUNZ, Georg
WILKEN, Ilana
2019

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Background: Augmentative and alternative communication (AAC) can assist persons with complex communication needs to communicate competently with a variety of communication partners in a variety of contexts. However, AAC systems and intervention often do not take multilingual aspects into consideration.

 

Objective: This small-scale exploratory study had three aims, namely: (1) to describe the self-reported language skills of multilingual South African adults using AAC, (2) to describe the languages and communication modalities they used in interaction and (3) to obtain their views regarding access to various languages.

 

Methods: Twenty-seven adults using AAC were recruited via an empowerment programme, as well as an email list for persons interested in AAC, and provided responses to a questionnaire. To compensate for access and written language challenges, the questionnaire was administered with help and/or as a face-to-face interview where needed. Responses were analysed using mostly descriptive statistics.

 

Results: Participants generally could not express themselves in all the languages they understood and were regularly exposed to. Speech-generating devices specifically gave access almost exclusively to English. Participants expressed a desire to increase their expressive language repertoire, and mentioned both limitations of communication technology as well as their own literacy skills as barriers to overcome in this regard.

 

Conclusion: In order for multilingual South African adults using AAC to express themselves in multiple languages, appropriate AAC systems and interventions as well as literacy learning opportunities need to be developed and provided.

 

African Journal of Disability, Vol 8, 2019

Lived experiences of caregivers of children with autism spectrum disorder in Kenya

CLOETE, Lizahn G
OBAIGWA, Evans O.
2019

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Background: Autism spectrum disorder (ASD) is a global public health concern. In African countries such as Kenya, there is a greater need for establishing support services for developmental disorders such as ASD. The emotional, social and economic burden of ASD on caregivers is unknown because of a number of challenges. Citizens of Kenya have a unique view of disability and inclusion.

 

Objectives: To explore the perspectives of caregivers who are responsible for caring for both family and children living with ASD and to highlight the needs of children with ASD as well as the needs of their caregivers.

 

Method: A qualitative, descriptive phenomenological study utilising focus group discussions (FGDs) was conducted. Verbatim transcription was used. QSR N ’Vivo 10 was used to organise and analyse the data. Content analysis was used to identify important ideas and concepts.

 

Results: One theme, namely ‘the burden of caring for children with ASD’, was identified. Children with ASD and their caregivers experience isolation and stigmatisation.

 

Conclusion: Occupational therapists in Kenya should collaborate with the relevant national and global stakeholders for the promotion of the inclusion of children with ASD and their families. Responsive and context-appropriate occupational therapy interventions may begin to address service barriers.

 

 

African Journal of Disability, Vol 8, 2019

Challenges faced by parents of children with learning disabilities in Opuwo, Namibia

TADERERA, Clever
HALL, Herna
2017

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Background: Parenting children with learning disabilities requires a high level of knowledge and access to resources, information and services. In developing countries, however, these resources and services are not always available. Parents in Namibia, a developing country, therefore face challenges addressing children’s learning and other developmental disabilities, including challenges related to preventative and supportive interventions.


Objective: This research focuses on challenges faced by parents as they parent children with learning disabilities in Opuwo, Namibia.


Method: In-depth interviews were conducted with eight parents regarding the challenges they face in parenting their children with learning disabilities. Thematic analysis enabled the researchers to identify, analyse and report on themes that emerged from the qualitative interview data.


Results: Analysis of the interviews indicated that some participants had only a vague understanding of learning disabilities, as they did not have access to essential knowledge about this phenomenon. They also lacked an awareness of the availability of programmes, services and policies meant to benefit their children with learning disabilities. Participants voiced that they, their children with learning disabilities and community members have stereotypes and prejudices regarding learning disabilities. In this study, most of the children with learning disabilities were raised by single, unemployed parents who seemed to have access to less support from external sources than married couples parenting children with learning disabilities. These single parents are usually not married and because of lack of financial support from the other parent, the majority of them indicated that they struggle to meet the financial and material needs of their children.


Conclusion: The researchers concluded that the participants in this study experience a range of challenges in parenting their children with learning disabilities. The main challenges emanate from financial instability, as well as lack of knowledge regarding services and programmes for children with learning disabilities. This lack of knowledge on the part of participants could indicate poor policy education by policy implementers at grass-roots level.

Development process in Africa: Poverty, politics and indigenous knowledge

EIDE, Arne H
KHUPE, Watson
MANNAN, Hasheem
2014

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Background: Persons with disability run the danger of not profiting from the development process due to exclusion from basic services and opportunities. Still, the knowledge base on exclusion mechanisms is relatively weak and there is a danger that important aspects are not addressed as they are hidden behind established understandings that are not critically scrutinised.

 

Objectives: The main purpose of this article was to highlight critical thoughts on prevailing knowledge of the relationship between disability and poverty, the policy base for addressing the rights of persons with disability, and culture as a key component in continued discrimination.

 

Method: This article aimed at integrating three papers on the above topics presented at the 2011 African Network for Evidence-to-Action on Disability (AfriNEAD) Symposium. The researchers have therefore thoroughly examined and questioned the relationship between disability and poverty, the influence of policy on action, and the role of culture in reproducing injustice.

 

Results: The article firstly claims that there are limitations in current data collection practice with regards to analysing the relationship between poverty and disability. Secondly, ambitions regarding inclusion of persons with disability in policy processes as well as in implementation of policies are not necessarily implemented in an optimal way. Thirdly, negative aspects of culture in discrimination and bad treatment of disabled need to be highlighted to balance the discussion on disability and culture.

 

Conclusion: A critical view of prevailing understandings of disability and development is key to producing the knowledge necessary to eradicate poverty amongst persons with disability and other vulnerable groups. Not only do we need research that is actually designed to reveal the mechanisms behind the disability–poverty relationship, we need research that is less tied up with broad political agreements that is not necessarily reflecting the realities at ground level.

Knowledge and use of contraceptive methods amongst deaf people in Ghana

MPRAH, Wisdom K
2013

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Background: Persons with disabilities in general face serious barriers to sexual and reproductive health (SRH) information and services due to institutional and attitudinal barriers. However, because deaf people have unique communication and linguistic needs, which are often misunderstood or ignored, they face greater barriers than other persons with disabilities. Whilst available data indicated that there is a wide gap between knowledge and usage of contraceptive amongst Ghanaians, little is known about the level of contraceptive knowledge and usage amongst deaf people.

 

Objectives: The objective of the study was to investigate the level of knowledge and use of contraceptive methods amongst deaf people in Ghana with the aim of understanding their contraceptive behaviour and to improve access.

 

Method: The study was a participatory SRH needs assessment utilising a two-phase, sequential, mixed methods design. The study included 179 participants, consisting of focus groups with seven executives of Ghana National Association of the Deaf (GNAD), 10 male deaf adults, and 9 deaf female adults. A total of 152 deaf people, made up of students, women, and men participated in a survey, whilst one hearing person served as a key informant.

 

Results: The findings of the study indicated that of the 13 methods shown in the survey, only three were known to about 70% of the adults and 60% of the students. Level of knowledge of the remaining nine methods was low.

 

Conclusion: Clear and effective policies are needed to guide the provision of SRH information and services for deaf people in Ghana.

African indigenous knowledge and research

OWUSU-ANSAH, Frances E
MJI, Gubela
2013

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This paper seeks to heighten awareness about the need to include indigenous knowledge in the design and implementation of research, particularly disability research, in Africa. It affirms the suitability of the Afrocentric paradigm in African research and argues the necessity for an emancipatory and participatory type of research which values and includes indigenous knowledge and peoples. In the predominantly Western-oriented academic circles and investigations, the African voice is either sidelined or suppressed because indigenous knowledge and methods are often ignored or not taken seriously. This paper posits that to be meaningful and empowering, African-based research must, of necessity, include African thought and ideas from inception through completion to the implementation of policies arising from the research. In this way the work is both empowering and meaningful for context-specific lasting impact.

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