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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.

‘Satan is holding your tongue back’: Stuttering as moral failure

ISAACS, Dane H
2021

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Background: The last decade has seen researchers and speech–language pathologists employ and advocate for a disability studies approach in the study of the lived experiences of people who stutter and in the design of interventions and treatment approaches for such individuals. Joshua St. Pierre, one of the few theorists to explore stuttering as a disability, mentions as a key issue the liminal nature of people who stutter when describing their disabling experiences.

 

Objectives: This article aimed to build on the work of St. Pierre, exploring the liminal nature of people who stutter.

 

Method: Drawing on my personal experiences of stuttering as a coloured South African man, I illuminated the liminal nature of stuttering.

 

Results: This analytic autoethnography demonstrates how the interpretation of stuttering as the outcome of moral failure leads to the discrimination and oppression of people who stutter by able-bodied individuals as well as individuals who stutter.

 

Conclusion: As long as stuttering is interpreted as the outcome of moral failure, the stigma and oppression, as well as the disablism experience by people who stutter, will continue to be concealed and left unaddressed.

Background: Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.Object

KUMI-KYEREME, Akwasi
2021

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Background:Sexual and reproductive health (SRH) of young people including those with disabilities is a major public health concern globally. However, available evidence on their use of sexual and reproductive health services (SRHS) is inconsistent.


Objective:This study investigated utilisation of SRHS amongst the in-school young people with disabilities (YPWDs) in Ghana using the healthcare utilisation model.


Methods: Guided by the cross-sectional study design, a questionnaire was used to obtain data from 2114 blind and deaf pupils or students in the age group 10-24 years, sampled from 15 purposively selected special schools for the deaf and the blind in Ghana.


Results: About seven out of every 10 respondents had ever utilised SRHS. The proportion was higher amongst the males (67.8%) compared with the females (62.8%). Young persons with disabilities in the coastal (OR = 0.03, 95% CI = 0.01–0.22) and middle (OR = 0.06, 95% CI = 0.01–0.44) zones were less likely to have ever utilised SRHS compared with those in the northern ecological zone. The blind pupils or students were more likely to have ever utilised SRHS than the deaf (OR = 1.45, 95% CI = 1.26–3.11).


Conclusions: Generally, SRHS utilisation amongst the in-school YPWDs in Ghana is high but significantly associated with some predisposing, need and enabling or disabling factors. This underscores the need for policymakers to consider in-school YPWDs as a heterogeneous group in the design and implementation of SRHS programmes. The Ghana Education Service in collaboration with the Ghana Health Service should adopt appropriate pragmatic measures and targeted interventions in the special schools to address the SRH needs of the pupils or students.

A snapshot of the chalkboard writing experiences of Bachelor of Education students with visual disabilities in South Africa

SUBRAYEN, Roshanthni
DHUNPATH, Rubby
July 2019

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Background: South African higher education policy frameworks highlight renewed interest in equity, access and participation imperatives for students with disabilities (SWDs). However, students with visual disabilities continue to face barriers in their teaching practice school placements.

 

Objectives: This article aims, firstly, to provide early insights into the barriers experienced by students with visual disabilities in their teaching practice school placements in under-resourced schools in KwaZulu-Natal, South Africa. Secondly, it introduces learning communities and a teaching practice pre-placement booklet to enhance equity, access and participation in teaching practice school placements.

 

Method: This study adopted a qualitative methodology using semi-structured interviews to elicit data from two Bachelor of Education students with visual disabilities, who were part of a teaching practice learning community managed by the Disability Unit at the University. Thematic analysis was used, using Tinto’s Learning Community Model which generated valuable evidence to argue for institutional commitment to achieve equity, access and participation for students with visual disabilities.

 

Results: Through engagement with a teaching practice learning community and a teaching practice pre-placement booklet, two students with visual disabilities responded to and managed the chalkboard in ways that promoted teaching and learning in the classroom. These retention support trajectories provide evidence to support enhanced equity, access and participation. Given the stigma associated with disability and the need for equity at policy level, higher education institutions should seriously consider systemic mechanisms for access, participation and success outcomes in the teaching practice school placements of students with visual disabilities.

 

Conclusion: Barriers to participation signal the need for accessible teaching and learning strategies for use by students with visual disabilities in their teaching practice school placements. Teaching practice assessors should be alerted to contextual differences in resourced and under-resourced school settings and the diverse ways in which SWDs navigate these differences.

 

 

African Journal of Disability, Vol 8, 2019

Success in Africa: People with disabilities share their stories

SHAKESPEARE, Tom
MUGEERE, Anthony
NYARIKI, Emily
SIMBAYA, Joseph
2019

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Background: Whereas most narratives of disability in sub-Saharan Africa stress barriers and exclusion, Africans with disabilities appear to show resilience and some appear to achieve success. In order to promote inclusion in development efforts, there is a need to challenge narratives of failure.

 

Objectives: To gather life histories of people with disabilities in three sub-Saharan African countries (Kenya, Uganda and Sierra Leone) who have achieved economic success in their lives and to analyse factors that explain how this success has been achieved.

 

Methods: Qualitative research study of economic success involving life history interviews with 105 participants with disabilities from both urban and rural settings recruited through disabled people’s organisations and non-governmental organisation partners, framework analysis of transcripts to chart success and success factors.

 

Results: Participants had faced barriers in education, employment and family life. They had largely surmounted these barriers to achieve success on an equal basis with others. They were working in private and public sectors and were self-employed farmers, shopkeepers and craftspeople.

 

Conclusion: The findings of this study suggest that, given the right support, disabled people can achieve economic success, with the implication being that investment in education or training of disabled people can be productive and should be part of overall development efforts for economic reasons, not solely to achieve social justice goals.

 

 

African Journal of Disability, Vol 8, 2019

Being black in a white skin: Beliefs and stereotypes around albinism at a South African university

PHATOLI, Relebohile
BILA, Nontembeko
ROSS, Eleanor
2015

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Background: Partly because of the legacy of apartheid, and despite being a constitutional democracy, South Africa continues to be a deeply divided society, particularly along racial lines. In this context many people with albinism do not fit neatly into black and white categories and are likely to experience social discrimination and marginalisation.

 

Objectives: The study endeavoured to explore the beliefs and practices regarding albinism within a South African university, and the availability of support services.

 

Method: The research was located within an interpretive qualitative paradigm and was framed within the theories of stigma, discrimination and ‘othering’. Interviews were conducted with five students with albinism and 10 students without albinism.

 

Results: Findings confirmed the existence of myths and stereotypes regarding albinism. Students with albinism tended to exclude themselves from the rest of the student community to avoid discrimination and stereotypes around their condition.

 

Conclusion: People with albinism can teach us about social constructions of race, colour and relations between minority groups and the majority culture. Results have implications for schools, disability units at universities, and albinism societies in terms of opening up channels of communication between people with albinism and the general public and fostering knowledge and awareness thereof.

Perceptions of caring for children with disabilities: Experiences from Moshi, Tanzania

MCNALLY, Anna
MANNAN, Hasheem
2013

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Background: Although there exist laws, policies and standards in Tanzania that serve to protect and improve the lives of children with disabilities, the individual human experiences and feelings of the carers and parents still remain the realities of caring for children with disabilities. There is a lack of qualitative studies examining experiences in a developing context. This research aimed to fill that gap.

 

Objectives: The objective of this research was to gain an insight into how having a child with a disability impacts upon participants lives and to examine both negative and positive experiences of care through the use of qualitative methods.

 

Method: This was a qualitative, exploratory study and followed a phenomenological method. Purposive convenience sampling methods were used to recruit 14 carers in Moshi, Tanzania. Qualitative, semi-structured interviews were undertaken with all 14 participants.

 

Results: Five main themes emerged from the data which shed light on the carers experiences, namely, objective challenges in terms of financial challenges, employment issues and demands of care; subjective challenges in the form of stigma, isolation and pity; positive experiences such as the child’s progress, respect and happiness; material and financial needs; and coping mechanisms which included beliefs, support and attitudes.

 

Conclusion: The findings of this research were that objective challenges are common and more significant than subjective challenges. Positive experiences were not as easily identified by the participants as the challenges faced. However, having analysed the data, carers do not experience their roles as entirely negative. They simply need the resources to deal with objective challenges which in a developing context are not easily attainable.

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