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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.

Altered cervical posture kinematics imposed by heavy school backpack loading: A literature synopsis (2009–2019)

ELLAPEN, Terry J
PAUL, Yvonne
HAMMILL, Henriëtte V
SWANEPOEL, Mariëtte
2021

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Background: Habitual school backpack carriage causes neuro-musculoskeletal vertebral, shoulder and hand pain; deviated posture compromised cardiopulmonary function and proprioception.

 

Objective: Present a novel literature summary of the influence of backpack carriage associated with deviated cervical posture and compromised pulmonary function.

 

Method: An electronic literature appraisal adopting the Preferred Reporting Items for Systematic Reviews, using Google Scholar, Science Direct, EMBASE, AMED, OVID, PubMed and Sabinet search engines, was instituted during 2009–2019. Key search words: schoolbag, backpack, carriage, cervical posture and children. The quality of the studies was assessed using the Downs and Black Appraisal Scale.

 

Results: 583 records were initially identified which was reduced to 14 experimental and observational studies. A total of 1061 participants were included across the 14 studies, with an average age of 11.5 ± 1.3 years, body mass of 37.8 ± 6.6 kilograms (kg), height of 1.41 ± 0.05 meters (m), backpack mass of 5.2 ± 0.9 kg and percentage backpack mass to child’s body mass of 13.75%. The studies mean rating according to the Downs and Black Appraisal Scale was 76.3%. The average craniovertebral angle (CVA) was 53.9° ± 14.6° whilst standing without carrying a backpack was reduced to 50.4° ± 16.4° when loaded (p < 0.05). Backpack loads carried varied from 5% – 30% of the participant’s body mass that produced a mean CVA decline of 3.5°.

 

Conclusion: Backpack carriage alters cervical posture, resulting in smaller CVA and compromised pulmonary function. There is no consensus of the precise backpack mass that initiates postural changes. Girls’ posture begin changes when carrying lighter backpacks as compared to boys of the same age strata.

Using selected behaviour modification practices to enhance reinforcement of reading abilities among dyslexic learners in Kenya

OOKO, Pamela A
ALOKA , Peter J O
2021

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Background: Dyslexic learners have difficulties in accurate and fluent word recognition and poor spelling and decoding abilities.

 

Objective: The present study investigated the use of selected behaviour modification practices to enhance reinforcement of reading abilities amongst dyslexic learners in primary schools in Kenya.

 

Methods: The Solomon four research design was adopted. A sample size of 229 dyslexic learners in four selected schools was obtained using purposive sampling technique. The tools used were the Bangor Dyslexia Test and a short reading comprehension test. Internal validity of the constructs was tested using the Kaiser–Meyer–Oklin measure of sampling adequacy (KMO Index) and the Bartlett’s test of sphericity. The reliability of the questionnaires was ascertained using Cronbach’s alpha and internal consistencies of 0.673–0.807 were reported.

 

Results: The findings reported a statistical significant difference between pre-test and post-test scores of the experiment group 1, t (48) = –15.059, p < 0.01, implying that a significant effect was found in the use of behaviour modification strategies in improving learner English language reading skills. The regression model explained 54.7% (R2 = 0.547) of the variability in the level of English language reading abilities amongst primary school learners with dyslexia.

 

Conclusion: The study concludes that coaching behaviour modification practice had the highest influence on English language reading abilities as compared to prompting, shaping and modelling practices. The study recommended training of teachers on the use of behaviour modification practices to improve dyslexic learners’ reading ability.

 

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