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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

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

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

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.

This study aimed to explore how sex education in special schools in Sweden is influenced and challenged by the multicultural aspects of modern society. In particular, it sought to explore professio- nalls' experiences of sex education and of honour-related experiences among young people with intellectual disabilities. Data from five individual interviews and one focus groups with four profes- sionals were thematically analysed using sexual scripts as a theoretical framework. The results reveal an ambivalent honour-related script geared toward pupils with intellectual disabilities from cul- tural backgrounds differing from those of the Swedish mainstream. The provision of sex education, including information about hon- our-related experiences, is especially important because of these young people’s vulnerability; however, addressing the subject effectively is sensitive and complicated. Colleagues with different cultural backgrounds can act as ‘culture bridges’ for professionals who lack strategies, methods and materials. Increasing profes- sionals’ prerequisite qualifications (e.g. further education, supervision) and adopting autonomy-promoted conduct can empower pupils with intellectual disability to exercise autonomy over their sexuality outside their immediate cultural context.

This study aimed to provide better understanding of intimacy and marriage, pregnancy, birth, and motherhood experiences of women with disability in Ethiopia. Qualitative, in-depth, and semi-structured interviews along with personal observations were used to explore the full experiences of participants, as told in their own words. The result of the interviews indicated that relationships and motherhood proved a very rewarding option for women with disabilities. They also expressed their need for intimacy regardless of society’s denial. Challenges identified include negative societal attitudes toward women with disabilities regarding relationship, pregnancy, and child-rearing. Accessibility of health centers in addition to the ignorance and negative attitudes of the physicians are also reported to be major challenges for the interviewees. This study highlights how rewarding the experience of motherhood was for the interviewees and also shows that women with disabilities face challenges at every step of their experiences, because of society’s prejudices toward disability.

Purpose: This article explores the reproductive wants and needs of persons with spinal cord injuries (SCI), along with factors that influence these needs and the services available to them.

Method: The study sample comprised persons with SCI from China Rehabilitation Research Centre who matched the research criteria and consented to participate. Data collection took place through questionnaires and in-depth interviews. After the objectives, contents and methods of the survey were explained, 63 respondents answered the questionnaire, and 17 of them (15 men and 2 women) agreed to participate in the in-depth interviews. All the respondents were above 18 years of age, either unmarried or married, and childless.

Results: It was found that 85.7% of the respondents wished to have children. The more severe the SCI, the less was the desire for children. Those with higher levels of education were less inclined to have children. While financial situation had little impact on the wish for children, the impact of traditional concepts was significant. The reproductive experiences of other SCI clients had a significant influence on respondents’ desire to have children. More than 50% of the respondents were ignorant that they could have babies after SCI. 96.8% of them believed that a child played an important role in marital stability. Though 54% of the respondents wished to have their sexual and fertility problems addressed in medical and rehabilitation institutions, 93.7% said they had not received any such professional services during the previous year.

Conclusions: Although most persons with spinal cord injuries are very keen to have children, their wants and needs are not recognised and little attention is paid to specialized service provision to address their needs. This study suggests that steps such as improving awareness, disseminating knowledge and setting up institutions to provide professional services are necessary to address reproductive needs and to protect the reproductive rights of persons with SCI.

Background: Deafness is a complex and multifaceted phenomenon. The different ways of perceiving and understanding deafness have practical implications for research with deaf people. Whilst the deaf community is not homogenous, it is generally distinct from the hearing population. Consequently, the appropriateness of applying research methods and informed concern processes designed for the hearing population in research with deaf people has been questioned.

Objectives: This article reflected on some methodological challenges and ethical concerns arising from conducting a sexual and reproductive health needs assessment with deaf people in Ghana. The aim was to provide some perspectives on some of the challenges associated with doing research with deaf people.

Method: The study was a two phase, sequential, mixed methods design, consisting of three focus groups to assist in the development of a survey and then the implementation of the survey for needs assessment data collection. The number of participants in the study was 179, consisting of 26 focus group participants: 7 executives of the Ghana National Association of the Deaf (GNAD), 10 male adults, and 9 female adults. There were 152 survey respondents (students, women and men) and one key informant. All participants, except the key informant, were deaf people.

Results: The application of traditional research methods to studies involving deaf participants presents numerous methodological and ethical dilemmas associated mainly with deaf people’s unique cultural and linguistic characteristics.

Conclusion: Research methods should not be taken as universal guidelines for conducting research in all settings because of differences in settings.

Background: Women with a disability are often characterised as a homogenous social group consigned to a cultural stereotype with assumptions of dependence, asexuality and gender neutrality. Furthermore, there is a void of research about the experience of people with disabilities following diagnosis with HIV. Little is known about how HIV diagnosis intersects with disability and gender and how it shapes the experiences of intimacy and gender roles of those negotiating this intersection.

Objective: The objective of this study was to explore how HIV, disability and gender shape the perspectives of HIV-positive women with disabilities regarding intimacy and gender roles.

Methods: Twelve women in Lusaka, Zambia were recruited for in-depth semi-structured interviews to explore their experiences of having a disability and living with HIV. Interviews were conducted in English, Bemba, Nyanja and Zambian sign language. Descriptive and thematic analyses were conducted, followed by in-depth gender analyses of data relating to intimacy and gender roles.

Results: Data analysis led to the identification of two main themes: the impact of HIV diagnosis on intimate relationships amongst the participants; and the disruption and renegotiation of gender roles. These findings demonstrate the loss of intimacy (often decided by the participants) and changes in women’s gender roles (infrequently decided by them).

Conclusions: The narrow approaches to sexuality and HIV that reinforce misconceptions and stereotypes need to change. In their place should be inclusive and disability and sex-positive approaches that are informed by the diverse realities of women’s lives. Further research is needed to develop stronger evidence of the impact of HIV and disability on gender roles and sexuality.