People with Albinism tend to face multiple adverse physical, psychological and social consequences. Very little is known about experiences of women with Albinism and their deliberations whilst making reproductive decisions. This study aimed to explore lived experiences of women with Albinism and to understand their perspectives on reproductive decision making. Qualitative in-depth semi-structured interviews were conducted with ten women with Albinism in Taiwan. Five key themes emerged from the accounts which were centred around the sense of discrimination that they felt whilst growing up, their strive for normality, making difficult choices in their reproductive decisions, desire to protect children from harm and reflections of parenting struggles from own experiences and the experiences of their parents. We call for global and national policy makers and practitioners to introduce explicit measures to challenge the myths, stereotypes and prejudices associated with Albinism including specific interventions towards supporting women in pregnancy decision making.
Persons with disabilities have the same sexual and reproductive health and rights (SRHR) as non-disabled persons. Yet they face numerous barriers in their access to sexual and reproductive health services and their rights are often not met. Evidence on SRHR for persons with disabilities is sparse, particularly evaluations of interventions demonstrating ‘what works.’ This systematic review assessed interventions to promote SRHR for persons with disabilities in low- and middle-income countries.
The method involved searching for qualitative, quantitative or mixed method observational studies representing primary research, published between 2010 and 2019, using MEDLINE, Embase, PubMed, Global Health and CINAHL Plus
BMJ Global Health 2020;5:e002903.
Background: In low-income and middle-income countries women and girls with disabilities are more likely to experience violence than those without disabilities. Non-governmental organisations (NGOs) and disabled people’s organisations (DPOs) can help to address this. However, in countries like Botswana we know little about the preparedness of NGOs and DPOs to increase inclusion in and access to programmes addressing violence.
Objectives: To explore the capacity and preparedness of NGOs and DPOs to ensure that women and girls with disabilities can participate in and access programmes addressing violence.
Methods: A qualitative study was undertaken using interviews with 17 NGOs and DPOs in Botswana to understand the organisations’ level of and ability to deliver programmes addressing violence against women and girls.
Results: Both NGOs and DPOs lack elements of universal design and reasonable accommodation, and thus are inaccessible to some people with disabilities. Some programmes address violence against women but lack skills and resources to accommodate people with disabilities. In contrast, DPOs work with people with disabilities, but lack focus on violence against women with disabilities. Participants identified opportunities to fill these gaps, including adaptation of policies and structural changes, training, approaches to mainstream disability across programmes, development of disability-specific interventions and improved networking.
Conclusions: Botswana’s NGOs and DPOs are well positioned to address violence against women and girls with disabilities, but need to increase their accessibility, staff knowledge and skills and disability inclusion. Training, resource allocation and participation of women with disabilities in NGOs and DPOs is needed to drive this change.
African Journal of Disability, Vol 9, 2020
A growing body of evidence shows that people with disabilities have historically been denied their sexual and reproductive health rights, despite having the same sexual and reproductive health needs as people without disabilities, and continue to face many barriers to accessing these lifesaving services.
This evidence gap map, developed as part of the UK Department for International Development’s Women’s Integrated Sexual Reproductive Health (WISH) programme, collates evidence on ‘what works’ to enable access to sexual reproductive health services for persons with disabilities in low and middle-income countries.
A blog looking at the body of evidence for persons with disabilities (PWD) outlines that historically PWD have been denied their SRH (sexual and reproductive health) rights, despite having the same sexual needs as people without disabilities. It goes into to comment on the knowledge gaps that still need closing and to introduce an Evidence Gap Map
This situational analysis (SITAN) addresses the question: “what is the current situation for persons with disabilities in Kenya?”. It has been prepared for the Disability Inclusive Development programme (which works on access to education, jobs, healthcare, and reduced stigma and discrimination for persons with disabilities in Bangladesh, Jordan, Kenya, Nepal, Nigeria, and Tanzania), to better understand the current context, including COVID-19, and available evidence in Kenya. It will be helpful for anyone interested in disability inclusion in Kenya, especially in relation to stigma, employment, education, health, and humanitarian issues. This SITAN has been briefly updated from the April 2019 SITAN.
As part of the Department for International Development’s (DFID’s) Women’s Integrated Sexual Reproductive Health (WISH) programme, an evidence gap map (EGM) has been developed to map interventions on ‘what works’ to enable access to sexual reproductive health (SRH) services for persons with disabilities in low and middle-income countries (LMICs). EGMs are a user-friendly presentation of the available, relevant evidence for a particular sector, which is systematically gathered and mapped onto a framework, visually highlighting the gaps or concentration of evidence. This EGM aims to support WISH programming by consolidating evidence and identifying tools/approaches which could be brought into the programme. In addition, it aims to identify where evidence is weak and how the WISH programme can contribute to evidence generation.
This report provides a written accompaniment to the Evidence Gap Map (EGM) to explain the methodology, findings on the availability of evidence, and key recommendations. When scoping for this EGM, it was recognised early on that some of the best practices and interventions on ‘what works’ to support persons with disabilities access SRH services in LMICs are not always empirically tested. Therefore, a decision was made to develop an EGM which includes both peer-reviewed and grey literature. This approach diverges from the norm, as EGMs typically only include peer-reviewed literature.
Background: Stroke in human immunodeficiency virus positive (HIV+) individuals is becoming an increasing concern. Being significantly younger than typical stroke patients, the impact of functional challenges on quality of life and burden on society becomes more eminent.
Objectives: This feasibility study aims to determine the requirements for a large descriptive cohort, to adequately describe the functional outcome of stroke patients with varying HIV status.
Method: All stroke patients meeting the inclusion criteria were recruited over a 6-month period at a South African inpatient rehabilitation centre. Data were collected on admission and discharge using outcome measures including the Barthel Index (BI), Berg Balance Scale (BBS) and the use of assistive devices used to describe independence with activities of daily living (ADL), mobility and safety post-stroke. Statistical analysis was performed using Stata version 14.2.
Results: The feasibility study identified appropriate procedures and barriers to a successful study in addition to describing preliminary data on participant demographics, relevant medical history and functional outcomes post-stroke. Limitations that affected feasibility included minimal recruitment sites, length of data collection period, timely communication of participant discharge plans and dates, and confirmation of participant HIV status. An appropriate comparison between sub-groups could not be made because of disproportionate group sizes, median age differences and no assessor blinding.
Conclusion: To increase generalisability and the understanding of the unique HIV+ stroke profile, multiple recruitment sites, longer data collection periods, assessor blinding and age-matched groups with HIV status confirmation are recommended.
African Journal of Disability, Vol 9, 2020
There is growing awareness and international commitment to improving sexual and reproductive health for persons with intellectual disabilities. Despite this, people with intellectual disabilities continue to face stigma and have limited access to sexual health education and information. This qualitative phenomenological study uses data from 10 interviews to describe what it means to teach sexual and reproductive health and rights to students with intellectual disabilities at special-needs schools in southern Sweden. The meaning of teachers’ experience is described through their efforts to ‘accept the challenge to coach special-needs students into adulthood’. Findings show that sexual and reproductive health in special-needs schools covers a broad range of topics and that the teacher must adapt to students’ shifting needs. They also reveal that teachers are motivated and have access to the necessary resources to teach sexual and reproductive health but feel they lack the skills to address students’ particular sexual health issues, including questions of culture and religion. Schools are the main source of sexual health information in Sweden and therefore play a crucial role in providing equal education and promoting public health.
Background: Tuberculosis (TB) remains a significant healthcare problem. Understanding physical and functional impairments that patients with active TB present with at the time of diagnosis and how these impairments change over time while they receive anti-TB therapy is important in developing appropriate rehabilitation programmes to optimise patients’ recovery.
Objectives: The aim of this study was to assess the acceptability, implementation and practicality of conducting a prospective, observational and longitudinal trial to describe physical and functional impairments of patients with active TB.
Method: A feasibility pilot study was performed. Patients with acute pulmonary TB admitted to an urban quaternary-level hospital were recruited. Physical (muscle architecture, mass and power, balance, and breathlessness) and functional (exercise capacity) outcomes were assessed in hospital, and at 6 weeks and 6 months post-discharge. Descriptive statistics were used to analyse the data.
Results: High dropout (n = 5; 41.7%) and mortality (n = 4; 33.3%) rates were observed. Limitations identified regarding study feasibility included participant recruitment rate, equipment availability and suitability of outcome measures. Participants’ mean age was 31.5 (9.1) years and the majority were human immunodeficiency virus (HIV) positive (n = 9; 75%). Non-significant changes in muscle architecture and power were observed over 6 months. Balance impairment was highlighted when vision was removed during testing. Some improvements in 6-minute walk test distance were observed between hospitalisation and 6 months.
Conclusion: Success of a longitudinal observational trial is dependent on securing adequate funding to address limitations observed related to equipment availability, staffing levels, participant recruitment from additional study sites and participant follow-up at community level. Participants’ physical and functional recovery during anti-TB therapy seems to be limited by neuromusculoskeletal factors.
African Journal of Disability, Vol 8, 2019
Gender has often been overlooked in the lives of people with intellectual disability, resulting in a limited understanding and service response. This is in part due to a lack of knowledge about the way people with intellectual disability negotiate and build a gendered identity. In this article we present research undertaken with six young women with an intellectual disability who worked with the first researcher to co-develop some stories from their lives. We show how, facilitated by an innovative method which focused on meaningful engagement, the women told stories of richly gendered lives and subjectivities. Their stories showed how gender can be a desired and productive subjectivity, and how consideration of gender can help to identify resistance and agency in their lives. Their stories illustrate how gender is necessary in forming a comprehensive understanding of the lives of women with intellectual disability.
With the adoption of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) in 2006, disability as an issue of human rights and international law can no longer be ignored. The history of this convention can be traced back to the 1970s, when disability was framed in United Nations (UN) declarations as a human-rights issue at the global level. One of the recurrent topics of debate during this trajectory was the right of people with dis- abilities to found a family. This right was far from self-evident and was evaluated very differently by various stakeholders.
This study follows the right to have a family in UN disability policy since the 1970s. The history of the family in relation to disability at the global level has been a neglected field of enquiry compared to other concepts such as gender and race. This study investigates how and why the right to found a family was framed in the Declarations on the Rights of Mentally Disabled Persons (1971) and Disabled Persons (1975), the International Year of Disabled Persons (1981), the International Decade of Disabled Persons (1983 − 1992), the Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1993) and the UNCRPD in 2006.
The trajectory of the right of people with disabilities to found a family that emerges from these cases shows a change in the 1990s from a social-policy to a human-rights approach towards disability – which reflects a broader trend in global and local histories of human rights. In the case of reproductive rights of people with disabilities this change meant that the emphasis was laid more on providing a legal protection for the individual against the interference of others (so-called negative freedom) than on enhancing the opportunities for disabled people to practice their (positive) freedom.
A short literature review is presented providing: a brief overview of the evidence on the relationship between mental health, maternal health and SRHR, including evidence on relevant outcomes; good practice in integrating mental health into maternal health and SRHR; a list of key guidance and key entry points
This document provides a rapid review of the evidence on disability inclusive approaches to HIV prevention and response. The purpose of this review is to inform DFID’s policy and programming around integrated approaches to HIV, care and treatment. After briefly outlining the methodology in section 2, section 3 provides an overview of the evidence base on disability and HIV programming, and section 4 provides an overview of key barriers to accessing HIV-related services for people with disabilities. Finally, section 5 provides a series of case studies highlighting lessons learned including key enabling factors. This review finds that overall the evidence base on disability inclusive HIV programming is limited, with the majority of evidence from disability-specific interventions targeted at specific groups of people with different impairments
Papers included in this special issue are:
- The UNICEF/Washington Group Child Functioning Module—Accuracy, Inter-Rater Reliability and Cut-Off Level for Disability Disaggregation of Fiji’s Education Management Information System
- Disability and Access to Sexual and Reproductive Health Services in Cameroon: A Mediation Analysis of the Role of Socioeconomic Factors
- Assessing the Impact of the Twin Track Socio-Economic Intervention on Reducing Leprosy-Related Stigma in Cirebon District, Indonesia
- Factors Influencing Disability Inclusion in General Eye Health Services in Bandung, Indonesia: A Qualitative Study
- Unmet Needs and Use of Assistive Products in Two Districts of Bangladesh: Findings from a Household Survey
- Analysis of Social Determinants of Health and Disability Scores in Leprosy-Affected Persons in Salem, Tamil Nadu, India
- Developing Behaviour Change Interventions for Improving Access to Health and Hygiene for People with Disabilities: Two Case Studies from Nepal and Malawi
- Intersections Between Systems Thinking and Market Shaping for Assistive Technology: The SMART (Systems-Market for Assistive and Related Technologies) Thinking Matrix
- Adverse Childhood Experiences in Children with Intellectual Disabilities: An Exploratory Case-File Study in Dutch Residential Care
- Risk of Exclusion in People with Disabilities in Spain: Determinants of Health and Poverty
- Implementation of the International Classification of Functioning, Disability, and Health (ICF) Core Sets for Children and Youth with Cerebral Palsy: Global Initiatives Promoting Optimal Functioning
- Challenges in Accessing Health Care for People with Disability in the South Asian Context: A Review
- A Systematic Review of Access to Rehabilitation for People with Disabilities in Low- and Middle-Income Countries
- A Systematic Review of Access to General Healthcare Services for People with Disabilities in Low and Middle Income Countries
SELF-CARE is the ability of individuals, families and communities to promote health, prevent disease, maintain health, and to cope with illness and disability with or without the support of a health-care provider.
The purpose of this guidance is to develop a peoplecentred, evidence-based normative guideline that will support individuals, communities and countries with quality health services and self-care interventions, based on PHC (Primary Health Care) strategies, comprehensive essential service packages and people-centredness. The specific objectives of this guideline are to provide:
• evidence-based recommendations on key public health self-care interventions, including for advancing sexual and reproductive health and rights (SRHR), with a focus on vulnerable populations and settings with limited capacity and resources in the health system
• good practice statements on key programmatic, operational and service-delivery issues that need to be addressed to promote and increase safe and equitable access, uptake and use of self-care interventions, including for advancing SRHR.
Young people with disabilities have the same right to Sexual and Reproductive Health (SRH) as their peers without disabilities, but their needs and rights are often overlooked. This study examines the SRH status of young people with disabilities in China. In particular, the study explored the sexuality-related knowledge, attitudes and behaviour of young people with disabilities as well as their access to sexuality-related information, education and services. The findings of the study are intended to provide evidence to support decision-making by government agencies, educators, development workers and other relevant stakeholders regarding developing and implementing disability-inclusive SRH and sexuality education policies and programmes for young people in China.
The study, using quantitative and qualitative methods, was conducted in 2015 among unmarried young persons aged 12 to 24 living with visual, hearing, physical and intellectual disabilities, in both urban and rural areas. The analysis was based on data collected through 707 completed valid questionnaires, 20 group interviews and 35 individual interviews with young people with disabilities, and individual interviews with 60 parents and teachers, along with one case study.
This paper includes four studies which seek to better understand the situation by HIV-related situation of disabled men and women living in West Africa.
Using epidemiological investigation, qualitative interviews and collections of testimonies, these studies offer insight into the vulnerability of people with disabilities in the area of sexual health
Purpose: The United Nations Convention on the Rights of Persons with Disabilities aims to protect the human rights and dignity of all people with disabilities. In low-and middle-income countries (LMICs), one way this goal is pursued is through Community-Based Rehabilitation (CBR), a strategy to support the full and equal participation of people with disabilities. In spite of policy and community-based interventions, people with disabilities continue to experience inequities in many areas of life - one of these being their sexual and reproductive health (SRH) rights. This scoping review explored the literature to understand how CBR programming has supported sex(uality), sexual abuse prevention, and SRH for people with disabilities.
Methods: Arksey and O’Malley’s (2007) framework was used to identify relevant studies in academic and grey literature. This included six databases, the WHO website, and five Regional CBR Network websites. Relevant studies were selected using criteria and data was charted to examine the quantity, variation, and nature of CBR interventions.
Results: Fifteen studies were identified. The majority were implemented in Africa; targeted all people with disabilities, regardless of gender, age, or type of disability; and frequently focussed on the topic of HIV/AIDS. The interventions were most commonly designed to educate people with disabilities on issues of sex(uality), sexual abuse prevention, or SRH.
Conclusion: A number of studies discussed CBR programmes that aim to support sex(uality), sexual abuse prevention and SRH for people with disabilities, yet gaps were identified that indicate that certain populations and topics are being overlooked by CBR interventions.
Implications: CBR practitioners can focus on filling the gaps identified in this review through future programming. Further action must concentrate on implementing a variety of CBR Matrix strategies to address comprehensive issues related to sex(uality), sexual abuse prevention, or SRH.
Disability, CBR and Inclusive Development, Vol 30, No 1 (2019)
This article discusses sexuality and sexual rights of persons with profound intellectual and multiple disabilities. I will address the issue by reflecting on my own previous negligence about the issue, and unpack the ethics of sexuality of persons with profound intellectual disability in the light of ethnographic observation and interview data. I will discuss the significance of cognitive and communicative capacities as regards sexual rights as well as the boundaries of ethically justified facilitation of sex. I will also analyse the definition of sex and its ethical implications. Finally, I will offer some reflections on how we should consider more carefully in research the sexuality of persons with profound intellectual and multiple disabilities in order to enhance in practice their sexual fulfilment.
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