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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.

COVID 19 in Nepal: The Impact on Indigenous Peoples and Persons with Disabilities

GURUNG, Pratima
2021

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The COVID 19 pandemic crisis is unfolding against the backdrop of several important milestones for equality and the human rights of various marginalized groups including women and girls, indigenous peoples and persons with disabilities in all their diversities and intersections in Nepal. The COVID-19 pandemic has entrenched systemic gaps, underlying structural inequalities and pervasive discrimination, more visible with inadequate healthcare, access to information, employment and livelihoods, and social protection system mainly for marginalized groups. This study aims to understand the challenges and impacts of the COVID 19 on marginalized groups including persons with disabilities in Nepal. Based on qualitative research with primary and secondary information, the paper emphasizes the experiences and realities of marginalized groups during the lockdown and pandemic situations. Some of the existing challenges faced by marginalized groups include access to information and health measures related to COVID 19, access to livelihoods and employment, increasing rates of suicide, violence against women from marginalized groups, women with disabilities, and others. The study will integrate these components and deal with intersections with concrete recommendations. 

Disability & inclusion survey, Malakal Protection of Civilians site

International Organization for Migration’s Displacement Tracking Matrix (IOM DTM)
February 2021

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The International Organization for Migration’s Displacement Tracking Matrix (IOM DTM), Protection and Mental Health and Psycho-Social Support teams joined efforts with Humanity & Inclusion (HI) to undertake an assessment of the level of access to services and the barriers faced by persons with disabilities within Malakal Protection of Civilian site (PoC site). The United Nations High Commissioner for Refugees (UNHCR) and the Danish Refugee Council (DRC) contributed to the qualitative component of the study as the main Protection and Camp Coordination and Camp Management (CCCM) actors operating within the PoC site. The study, based on data collected between March 2020 and June 2020, aims to improve the knowledge base available to the humanitarian community about access to services by persons with disabilities living in the site. It provides a quantitative estimate of the prevalence of disabilities among the IDP population and an assessment of the barriers faced by persons with disability in accessing humanitarian services across sectors. It also seeks to empower persons with disabilities living within the PoC site, giving them the opportunity to express their concerns and preferences with regards to possible solutions and targeted interventions. It is hoped that the resulting data will help camp management and other service providers operating within Malakal PoC site, including IOM, UNHCR and DRC, to better account for the concerns and needs of persons with disability in humanitarian programming and service delivery. This study builds onto and expands previous studies in Naivasha IDP Camp (formerly Wau PoC AA Site) and Bentiu PoC Site.

Reducing albinism related stigma in Tanzania: an exploration of the impact of radio drama and radio interview

DE GROOT, T M M
VELDMAN, M
JACQUET, W
PETERS, R M H
VANWING, T
MEURS, P
2021

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Reducing stigma is key to improving the wellbeing of people with albinism in Tanzania. This study aimed to obtain more insight into the effects of two radio interventions with regard to albinism-related stigma: a radio drama and a radio interview. Assessment of the radio interventions was based on two attitude measurement instruments (The Albinism Explanatory Model Interview Catalogue Community Stigma Scale and the Albinism Social Distance Scale), an entertainment scale, and two informal (group) interviews. In total, 111 community members participated in the assessment prior to the radio drama, and 65 after. In the case of the radio interview, 123 community members participated in the assessment prior to the radio show, and 77 after. Following the radio drama, a significant reduction was found in terms of community stigma, and a reduction in social distance was found after both interventions. The entertainment score for both interventions was high, but significantly higher for the radio drama. The respondents indicated that they had gained more understanding of albinism as a result of the interventions, and were positive about this type of education. The current study shows that a radio show in which the listener interacts with someone with albinism can contribute to a reduction in stigma, and demonstrates that different types of radio intervention can have different outcomes.

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.

Disability-inclusive health services toolkit : a resource for health facilities in the Western Pacific Region

WORLD HEALTH ORGANISATION (WHO) WESTERN PACIFIC
October 2020

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The United Nation Convention on the Rights of Persons with Disabilities upholds the rights of people with disabilities to access health services. The Disability- inclusive Health Services Toolkit: A Resource for Health Facilities in the Western Pacific Region supports the rights of people with disabilities to have the same access to health services as people without disabilities. The Toolkit provides practical guidance to managers and staff of health-care facilities and services, health policy-makers, and nongovernmental organizations on identifying and addressing barriers to health information and services. The Toolkit supports the achievement of universal health coverage (‎UHC)‎ by ensuring everyone can access health information and can benefit equally from health services.

Lymphatic filariasis in Uganda: Knowledge, attitudes and practices

DIXON, Ruth
October 2020

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This knowledge, attitudes and practices (KAP) study aimed to assess the KAP relating to lymphatic filariasis (LF) morbidity and morbidity management (MMDP) in Uganda in order to plan large-scale interventions.

The objectives for the study were to obtain baseline data on KAP regarding LF morbidity and its management; to establish current efforts in specific districts/regions to address morbidity and its management; and to assess the anticipated acceptance of interventions and identify potential barriers. The study used mixed methods including a quantitative household survey and qualitative key informant interviews and focus group discussions with people living with chronic conditions related to LF.

Persons with disabilities must not bear the brunt of COVID-19 aftermath: Lessons from Ebola in Liberia (SDDirect COVID-19 pandemic blog series)

CAREW, Mark
May 2020

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The importance of ensuring persons with disabilities are not excluded as part of COVID-19 responses is explored.
Lessons learnt from the 2014-2017 Ebola outbreak in Liberia are discussed highlighting access to information, access to healthcare and the social impact. Research in Liberia combined surveys and interviews with people from households with a disabled person as well as those without, and included responses from 560 persons living in areas that had ‘many’ or ‘few’ cases of Ebola.

Somalia Disability Inclusive COVID-19 WASH tip sheet

Humanity & Inclusion
April 2020

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This tip sheet provides an overview of the factors that may put persons with disabilities at heightened risk in the COVID-19 pandemic and response in humanitarian settings; and proposes actions to address these risks within the COVID WASH response.

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

Agriculture and mobile-based interventions for smallholder farmers: best practice on disability inclusion, Disability Inclusion Helpdesk Research Report No. 14

AHLENBÄCK, Veronica
LEE, Harri
COE, Sue
May 2019

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This rapid review addresses the questions: What is current best practice in addressing disability and including people with disabilities within agricultural development programming? What is current best practice in mobile agriculture programming (i.e. mobile-based interventions targeted at smallholder farmers) to include smallholder farmers with disabilities as well as empower them and address key barriers they are facing? 

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

Community knowledge, attitude, and perceived stigma of leprosy amongst community members living in Dhanusha and Parsa districts of Southern Central Nepal

SINGH, Rakesh
SINGH, Babita
MAHATO, Sharika
January 2019

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The main objective of this study was to assess the knowledge, attitude and stigma of leprosy amongst the community members living in Dhanusha and Parsa districts of Southern Central Nepal. A total of 423 individuals were interviewed using a structured questionnaire in Dhanusha and Parsa districts. Data was analyzed using both descriptive (frequency, percentage, median) and statistical inferences.

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)

Understanding barriers, enablers, and long-term adherence to a health behavior intervention in people with multiple sclerosis

BARNARD, Emma
BROWN, Chelsea R
WEILAND, Tracey J
JELINEK, George A
MARCK, Claudia H
October 2018

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Background: The optimal management strategy for multiple sclerosis (MS), and many other chronic diseases, likely involves health behavior modification. Multimodal behavioral interventions may be most effective, but little is known about long-term adherence in people with MS.

 

Methods: This qualitative study assessed barriers and enablers to long-term adherence by people with MS who self-selected for a 5-day health behavior intervention 3–5 years prior. Thirteen women and five men participated in semi-structured phone interviews, which were transcribed and thematically analyzed.

 

Results: The experience was described as useful for information gathering, decision making, and practical strategies regarding health behaviors. The majority still followed supplementation and dietary recommendations most of the time, although consuming non-recommended food while eating out was common. Support at home, ability and enjoyment in food preparation, and ability to resist unhealthy foods were both barriers and enablers. Adherence to “time-consuming” exercise and meditation recommendations were less common and episodic. Many reported competing interests on time from work and family; and barriers including injuries and symptoms, weather, financial or geographical barriers, and lack of person-centred support and motivation. Increased fitness and mobility, weight loss, and a sense of accomplishment and control were advantages and motivators. Practical and attitudinal strategies employed included planning, tailoring activities to ability and preference, and self-monitoring.

 

Conclusion: While most people attempted to engage with all components of the intervention initially, only some still engaged with all components, and none to the recommended levels. These data can inform future quantitative studies and health behavior interventions.

“Even the fowl has feelings”: access to HIV information and services among persons with disabilities in Ghana, Uganda, and Zambia

SCHENK, Katie D
TUN, Walter
SHEEHY, Meredith
OKAL, Jerry
KUFFOUR, Emmanuel
MOONO, Grimond
MUTALE, Felix
KYEREMAA, Rita
NGIREABAKUNZI, Edson
AMANYEIWE, Ugochukwu
LECLERC-MADLALA, Suzanne
October 2018

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Background: Persons with disabilities have often been overlooked in the context of HIV and AIDS risk prevention and service provision. This paper explores access to and use of HIV information and services among persons with disabilities.

 

Methods: We conducted a multi-country qualitative research study at urban and rural sites in Uganda, Zambia, and Ghana: three countries selected to exemplify different stages of the HIV response to persons with disabilities. We conducted key informant interviews with government officials and service providers, and focus group discussions with persons with disabilities and caregivers. Research methods were designed to promote active, meaningful participation from persons with disabilities, under the guidance of local stakeholder advisors.

 

Results: Persons with disabilities emphatically challenged the common assumption that persons with disabilities are not sexually active, pointing out that this assumption denies their rights and – by denying their circumstances – leaves them vulnerable to abuse. Among persons with disabilities, knowledge about HIV was limited and attitudes towards HIV services were frequently based upon misinformation and stigmatising cultural beliefs; associated with illiteracy especially in rural areas, and rendering people with intellectual and developmental disability especially vulnerable. Multiple overlapping layers of stigma towards persons with disabilities (including internalised self-stigma and stigma associated with gender and abuse) have compounded each other to contribute to social isolation and impediments to accessing HIV information and services. Participants suggested approaches to HIV education outreach that emphasise the importance of sharing responsibility, promoting peer leadership, and increasing the active, visible participation of persons with disabilities in intervention activities, in order to make sure that accurate information reflecting the vulnerabilities of persons with disabilities is accessible to people of all levels of education. Fundamental change to improve the skills and attitudes of healthcare providers and raise their sensitivity towards persons with disabilities (including recognising multiple layers of stigma) will be critical to the ability of HIV service organisations to implement programs that are accessible to and inclusive of persons with disabilities.

 

Discussion: We suggest practical steps towards improving HIV service accessibility and utilisation for persons with disabilities, particularly emphasising the power of community responsibility and support; including acknowledging compounded stigma, addressing attitudinal barriers, promoting participatory responses, building political will and generating high-quality evidence to drive the continuing response.

 

Conclusions: HIV service providers and rehabilitation professionals alike must recognise the two-way relationship between HIV and disability, and their multiple overlapping vulnerabilities and stigmas. Persons with disabilities demand recognition through practical steps to improve HIV service accessibility and utilisation in a manner that recognises their vulnerability and facilitates retention in care and adherence to treatment. In order to promote lasting change, interventions must look beyond the service delivery context and take into account the living circumstances of individuals and communities affected by HIV and disability.

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
 

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