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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.

Barriers to Utilisation of Dental Services among Children with Disabilities in a Coordinated Healthcare Programme in Mangalore, South India: A Mixed Methods Study

SURESH, L R
RAI, K
HEGDE, A M
DSOUZA, C V
2021

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Purpose: Unmet oral health needs affect the quality of life of individuals, especially if they are already at a disadvantage like children with special health care needs. Strategies to mitigate these disparities in India’s diverse healthcare settings have hitherto been largely ineffective. This study was aimed to assess the utilisation and barriers to the use of dental health services among children with special health care needs, against the background of a coordinated healthcare programme implemented in Nitte (Deemed to be University), Mangalore, India.

 

Method: The study was conducted over a 6-month period, from September 2018 to February 2019. A mixed-methods design was concurrently employed for data collection. Utilisation of dental services was assessed quantitatively, and the barriers to dental services utilisation were assessed qualitatively through caregiver interviews, with a sequential data integration strategy.

 

Results: The quantitative data revealed gross underutilisation of dental resources by children (only 16% availed some form of dental treatment), and the prevalence of avoidance behaviour (63% showed reluctance and did not turn up for appointments). Restorative needs formed the highest unmet dental component among the children (67% required secondary dental care). In-depth interviews with the children’s caregivers revealed that the presence of cognitive barriers could have a direct effect on the time and quality of dental care delivered to their children.

 

Conclusion: Cognitive barriers among caregivers appear to have a profound impact on the underutilisation of dental services in their children with special healthcare needs. These barriers may be addressed within the integrated healthcare programme and the dental curricula through provisions for continued individual and community dental education, and motivational efforts that simultaneously target the caregivers and their children with special healthcare needs.

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

Exploring the experiences of students with visual impairments at the University of Botswana

OATS, Reginald
DISELE, Chawapiwa
2019

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Purpose: This paper sought to document the responsiveness of the University of Botswana towards the academic needs of students with visual impairments. The study examined the academic experiences of students with visual impairments enrolled at the University and explored their information-seeking needs. The study was informed by the theory of social justice.

Method: This was a qualitative study. Data was collected from students with visual impairments and academic staff from different faculties at the University of Botswana, through document analysis, interviews and observation techniques.

Results: The findings revealed that students with visual impairments experience extra challenges compared to students without disabilities. This is mainly because they do not get full support to enable them to excel academically. Furthermore, lecturers use teaching methodologies that do not accommodate these students, and learning materials are not adapted to formats suitable for them. Access to information is another major concern that hinders the participation of students with visual impairments in tertiary institutions.

Conclusion: The study recommends that lecturers need to be trained on suitable methods to teach students with visual impairments and how best to deliver academic content to them.

 

Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)

Invisible victims of sexual violence. Access to justice for women and girls with disabilities in India

HUMAN RIGHTS WATCH
April 2018

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This report is based on 17 cases of sexual violence against women and girls with disabilities in eight Indian states. It comes five years after The Criminal Law (Amendment) Act, 2013 (the 2013 amendments) were adopted in India. It follows Human Rights Watch’s November 2017 report “Everyone Blames Me”: Barriers to Justice and Support Services for Sexual Assault Survivors in India, which found that rape survivors still face significant barriers obtaining justice and critical support services because legal and other reforms have not been fully realised.

This report finds that while the 2013 amendments have made significant progress in responding to the widespread challenges that victims of sexual violence endure, they have yet to properly develop and implement support for survivors with disabilities in the form of trainings and reforms throughout the criminal justice system. It highlights gaps in enforcement and calls for concrete measures to address the needs of women and girls with disabilities seeking justice for abuse. 

World Health Organization global disability action plan: The Mongolian perspective

KHAN, Fary
et al
April 2018

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The aim of this literature review and research was to provide an update on disability and rehabilitation in Mongolia, and to identify potential barriers and facilitators for implementation of the World Health Organization (WHO) Global Disability Action Plan (GDAP). A 4-member rehabilitation team from the Royal Melbourne Hospital conducted an intensive 6-day workshop at the Mongolian National University of Medical Sciences, for local healthcare professionals (n=77) from medical rehabilitation facilities (urban/rural, public/private) and non-governmental organizations. A modified Delphi method (interactive sessions, consensus agreement) identified challenges for rehabilitation service provision and disability education and attitudes, using GDAP objectives

 

Journal of Rehabilitation Medicine, Volume 50, Number 4, April 2018, pp. 358-366(9)

https://doi.org/10.2340/16501977-2207
 

Childhood disability in Malaysia: a study of knowledge, attitudes and practices

MOORE, Katie
BEDFORD, Juliet
November 2017

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This study was carried out to assess the knowledge, attitudes and practices of society towards children with disabilities, the children themselves, and their peers in Malaysia. The study took place in Selangor, Kelantan, Sabah and Sarawak. There were 756 total respondents/participants including government ministries, community members, service providers, care givers and children and adolescents both with and without disabilities. 

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.

Exploring Knowledge and Attitudes towards HIV/AIDS among Deaf People in Ghana

MPRAH, W K
2013

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Purpose: By exploring the level of knowledge about HIV/AIDS and attitudes towards persons with HIV/AIDS among deaf people in Ghana, this article aims to identify and correct possible gaps in awareness.

 

Method: A participatory sexual and reproductive health (SRH) needs assessment was conducted, targetting deaf people who were fluent in the Ghanaian Sign Language (GSL). The study design was a two-phase, sequential, mixed methods approach. Three focus groups assisted in the development of a survey, which was then implemented for needs assessment data collection. The 179 study participants consisted of 26 focus group participants, 152 survey respondents and 1 key informant. Of the focus group participants, 7 were executives of Ghana National Association of the Deaf (GNAD), 10 were adult males, and nine were adult females. Apart from the key informant, all the participants were deaf persons.

 

Results: The study indicated that many respondents still had misconceptions about HIV/AIDS and had difficulty identifying preventive methods, but their attitudes towards persons with HIV/AIDS was generally positive.

 

Conclusion: More attention needs to be paid to the requirements of the deaf community and to designing HIV/AIDS programmes and services that are deaf-friendly and accessible.

Leprosy: Knowledge and Attitudes of Physiotherapists in Nigeria

AYANNIYI, O
DUNCAN, F O
ADENIYI, A F
2013

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Purpose: The objectives of this study were to investigate the knowledge and attitudes towards leprosy of physiotherapists in Nigeria.

 

Method: A cross-sectional survey of 330 physiotherapists, with minimum 1-year work experience in public hospitals in the 6 geo-political zones of Nigeria, was carried out. A pre-tested, self-administered questionnaire with open and close- ended questions was employed. Data obtained were analysed using descriptive and inferential statistics of Chi-square tests with Alpha level at 0.05.

 

Results: The respondents’ mean and range of years of job experience was 8.6 + 5.51 and 1 to 27 years respectively. Close to half (44.5%) of the physiotherapists had only a fair knowledge about leprosy and 165 (50%) had poor attitudes towards leprosy and persons with leprosy. There were significant associations between the schools of training and each level of knowledge (χ2 = 45.04; p = 0.0001) and attitudes of physiotherapists to leprosy and to persons who have suffered from leprosy (χ2 = 20.26; p = 0.009). There was, however, no significant association between years of job experience and each of knowledge (χ2 = 4.76; p = 0. 312), or attitudes of the physiotherapists to leprosy (χ2 = 4.55; p = 0.337).

 

Conclusions and Implications: It was concluded that a substantial number of physiotherapists in Nigeria had fair knowledge but poor attitudes towards leprosy. The institution of training appears to have an influence on their knowledge and attitudes. It is therefore recommended that educational and training programmes on leprosy should be organised and emphasised at the basic training institutions for physiotherapists.

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