Stine Hellum Braathen

HIV/AIDS and disability in Southern Africa: a review of relevant literature.

Purpose. HIV/AIDS has grown to become the biggest epidemic in modern history. Southern Africa is at the epicentre of the global epidemic, with just of a third of the worlds HIV-positive population living here. It is known that HIV/AIDS affect vulnerable population groups. It is surprising then, that persons with disabilities, one of the worlds most vulnerable population groups, particularly in southern Africa, have been largely overlooked with regards to HIV/AIDS. This review sought to establish the state of the knowledge at present. Method. This article reports on findings of a literature review conducted as an initial step in a research project currently underway in South Africa. This article focuses on HIV/AIDS as it affects persons with disabilities in southern Africa, as it is in this region that the majority of people living with HIV live. However, as fewer studies exist that have as its focus southern Africa (particularly looking at HIV/AIDS and persons with disabilities), relevant articles from the international literature were used as indications of what we may find through future research also in the southern African countries. Given the paucity of published literature dealing with HIV/AIDS and persons with disabilities, the review looked at various risk factors associated with HIV infection, and how it affects persons with disabilities. Results. Findings from the literature review suggest that persons with disabilities, particularly in southern Africa, are at significant risk for HIV infection. Conclusions. There is an urgent need for more research on HIV/AIDs and sexuality among persons with disabilities in Africa.

“I thought . . . maybe this is my chance” Sexual Abuse Against Girls and Women With Disabilities in Malawi

This article is based on a pilot study conducted in Malawi in 2006 that intended to uncover episodes of violence and abuse against women and girls with disabilities and furthermore to explore the mechanisms behind such acts. The stories of 23 women with disabilities were obtained through in-depth semistructured interviews that covered, among other topics, aspects of sexual abuse experienced by or known to these women. None of the informants reported having been sexually abused during childhood. In adulthood, several had experienced what they themselves defined as sexual abuse: Men came and wanted to “marry” them. When the woman became pregnant, the man disappeared and left her alone. The interviewees were very opinionated regarding this theme and sought both social and political action in this matter, especially a means to enforce men to take economic responsibility for their biological children. The informants stressed that adapted education for women with disabilities would allow them to become more economically independent and be better able to refuse the advances of unserious suitors.

“I just answer ‘yes’ to everything they say”: Access to health care for deaf people in Worcester, South Africa and the politics of exclusion

OBJECTIVE To explore whether there are other factors besides communication difficulties that hamper access to health care services for deaf patients. METHODS Qualitative methodology using semi-structured interviews with 16 deaf participants from the National Institute for the Deaf in Worcester and 3 Key informants from the Worcester area, South Africa. RESULTS Communication difficulties were found to be a prominent barrier in accessing health care services. In addition to this interpersonal factors including lack of independent thought, overprotectedness, non-questioning attitude, and lack of familial communication interact with communication difficulties in a way that further hampers access to health care services. CONCLUSION These interpersonal factors play a unique role in how open and accepting health services feel to deaf patients. PRACTICE IMPLICATIONS Health care services need to take cognizance of the fact that providing sign language interpreters in the health care setting will not necessarily make access more equitable for deaf patients, as they have additional barriers besides communication to overcome before successfully accessing health care services.

Understanding the local context for the application of global mental health: a rural South African experience

BACKGROUND The global mental health movement has supplied ample evidence of treatment gaps for mental health care in low and middle-income countries. It is also clear that substantial progress has been made in developing an evidence base for innovative treatments which have been shown to work. It is only through rich and detailed understandings of local contexts and individual experiences that the challenges global mental health faces can be fully appreciated. METHODS In this article, we use a single, qualitative case study from one context and of one family affected by mental disorder. This is to elucidate core issues which we regard as key to further developments in the global mental health agenda. RESULTS Core issues are poor mental health literacy, transport and lack of outreach, limitations of formal health care, challenges at the interface with indigenous health care and lack of follow-up and rehabilitation. CONCLUSION We propose shifting the focus of mental health care from cure to promotion and prevention, using an interdisciplinary team of lay and trained health workers from the professional, folk and popular sectors. The challenges are complex, as this small study shows, but it is only by looking closely at local conditions that it is possible to develop interventions which are contextually appropriate and make optimal use of local resources.

Accessing community health services : challenges faced by poor people with disabilities in a rural community in South Africa

Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person’s life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person’s perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person’s history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalisation of health professional’s training, and include a patient’s perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognised and utilised.

The evil circle of poverty: a qualitative study of malaria and disability

BackgroundThis article discusses the link between disability and malaria in a poor rural setting. Global malaria programmes and rehabilitation programmes are organized as vertical and separate programmes, and as such they focus on prevention, cure and control, and disability respectively. When looking at specific conditions and illnesses, the impairing long-term consequences of illness incidents during childhood are not questioned.MethodsThe study design was ethnographic with an open, exploratory approach. Data were collected in Mangochi District in Malawi through qualitative in-depth interviews and participant observation.ResultsDespite a local-based health service system, people living in poor rural areas are confronted with a multitude of barriers when accessing malaria prevention and treatment. Lack of skilled health personnel and equipment add to the general burden of poverty: insufficient knowledge about health care, problems connected to accessing the health facility in time, insufficient initiatives to prevent malaria attacks, and a general lack of attention to the long term disabling effects of a malaria attack.ConclusionsThis study points to the importance of building malaria programmes, research and statistics that take into consideration the consequences of permanent impairment after a malaria attack, as well as the context of poverty in which they often occur. In order to do so, one needs to develop methods for detecting people whose disabilities are a direct result of not having received health services after a malaria episode. This may be done through qualitative approaches in local communities and should also be supplemented by suitable surveys in order to estimate the problem on a larger scale.

‘Can anything good come out of this mouth?’ Female experiences of disability in Malawi

The aim of this article is to give an overview of the daily life stories of 23 women with disabilities in Malawi. The stories were gained through qualitative interviews that covered aspects of being a woman and living with a disability in Malawi. Recent studies from countries in southern Africa have documented how people with disabilities experience poorer living conditions than people without disabilities. It is generally assumed that the living conditions of women are worse than those of men. There is, however, a large gap in the literature concerning women with disabilities in Africa. The results present a mixed picture. While several of the informants had experienced discrimination and exclusion because of their impairments, most of the women had been well taken care of and were treated equally by their closest family and friends. They had a strong wish to be empowered through education and employment.

Dating persons with physical disabilities: the perceptions of South Africans without disabilities

Abstract There is good reason to believe that the attitudes of persons without disability towards dating a person with a physical disability might be unfavourable. However, in general, and in the Global South in particular, there is a dearth of research in this area. This study sought to take the first step in addressing this lack of enquiry, by surveying the attitudes of a general population sample in South Africa towards dating people with physical disabilities, using a vignette. Data from 1723 survey respondents were analysed thematically. Findings reveal largely negative attitudes towards people with physical disabilities. Respondents without disability perceived numerous barriers to dating a person with a physical disability, including social stigma, anxiety and concerns about the burden of care they believed such a relationship would place upon them. However, there was some evidence to suggest that some positive attitudes do exist, and a few respondents were open to dating a person with physical disabilities. Findings contribute to a nuancing and expanding of the ‘myth of asexuality’ among physically disabled people by showing that people with physical disabilities are actively desexualised by persons without disability. Future research is needed to explore how the inclusive attitudes, of which we did find evidence here, can be further cultivated.

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi

Background Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi. Objectives This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households’ productivity. Method A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews. Results The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy. Conclusion The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.

The sexual and reproductive rights and benefit derived from sexual and reproductive health services of people with physical disabilities in South Africa: beliefs of non-disabled people

Abstract There is a body of theoretical work, and some empirical research, which suggests that non-disabled people assume people with physical disabilities are not suitable romantic partners, do not have sexual drives or desires, or are not sexually active. It has also been proposed that people with physical disabilities face barriers to sexual healthcare access which are structural as well as social. The present paper explores non-disabled South Africans’ beliefs concerning the degree to which non-disabled respondents enjoy sexual and reproductive rights, and benefit from sexual and reproductive healthcare, compared to people without disability. Using a survey, we asked 1989 South Africans to estimate the degree to which people with physical disabilities and people without disability have sexual rights, and benefit from sexual and reproductive healthcare services, respectively. Respondents were more likely to support the idea that the population without disability were deserving of sexual rights compared to people with physical disabilities. Respondents were more likely to rate the degree to which people with physical disability benefit from sexual and reproductive healthcare as less than that for people without physical disabilities. These findings provide some of the first empirical support that non-disabled people perceive people with physical disabilities as having fewer sexual and reproductive rights, and deriving less benefit from sexual and reproductive health services, than the population without disability. To have diminished sexual rights, and benefit less from sexual and reproductive healthcare, we suggest, evinces a negation of the sexual and reproductive needs and capacity of people with physical disabilities.