Poul Rohleder

Challenges faced by parents of children diagnosed with autism spectrum disorder

Few studies address the daily challenges faced by parents of children diagnosed with autism spectrum disorder. This article reports on a qualitative interview study with 20 parents exploring their experiences, challenges faced, and what has helped them to cope. A thematic analysis of the data identified five core categories: Dealing with challenging behaviour; dealing with judgements from others; lack of support; impact upon the family; coping and the importance of appropriate support. The findings emphasize where the parents themselves believe they still require additional support. It raises key strategies and resources that parents have found helpful.

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.

‘We are Not Fresh’: HIV-Positive Women Talk of Their Experience of Living with Their ‘Spoiled Identity’

Women have been identified as being at greater risk than men in South Africas growing HIV epidemic. Stigma contributes to the epidemic, as it makes HIV-positive individuals reluctant to become identified and seek appropriate care. The purpose of this study is to begin to explore how women experience and deal with AIDS stigma under conditions where they have little formal support. In-depth, narrative interviews were conducted with ten HIV-positive women, living in a poor, black township in Cape Town. The study used both social constructionist and psychoanalytic theory to understand the impact that their ‘spoiled identity’ had on the emotional lives of these women. The study elicited womens narratives as they talked about their experience of living with a ‘spoiled identity’. The analysis suggested that the women drew on negative social discourses around HIV, which were then internalised, to become part of the self. However, the narratives also indicated the womens resistance to their stigmatised identity. The narratives illustrated their attempts to fend off the ‘spoiled identity’ by splitting off these bad representations and projecting them outside of themselves.

Providing sex education to persons with learning disabilities in the era of HIV/AIDS: tensions between discourses of human rights and restriction.

Research suggests that disabled people may be at increased risk for HIV infection, yet are excluded from HIV prevention campaigns. Historically people with learning disabilities have been constructed as either being asexual or sexually uninhibited, and sex education considered to be unnecessary or potentially harmful. This article reports on findings of a qualitative study exploring the challenges expressed by participants who provide sex education for persons with learning disabilities, revealing a tension between a human rights discourse and a discourse of restriction of sexual behaviours. Sex education, in the context of HIV/AIDS, may potentially construct sex as dangerous, echoing past constructions of disabled peoples sexuality as problematic.

HIV issues and People with Disabilities: A Review and Agenda for Research

The recent AIDS and Disability Partners Forum at the UN General Assembly High Level Meetings on AIDS in New York in June 2011 and the International AIDS Conference in Washington, DC in July 2012 underscores the growing attention to the impact of HIV and AIDS on persons with disabilities. However, research on AIDS and disability, particularly a solid evidence base upon which to build policy and programming remains thin, scattered and difficult to access. In this review paper, we summarise what is currently known about the intersection between HIV and AIDS and disability, paying particular attention to the small but emerging body of epidemiology data on the prevalence of HIV for people with disabilities, as well as the increasing understanding of HIV risk factors for people with disabilities. We find that the number of papers in the peer-reviewed literature remains distressingly small. Over the past 20 years an average of 5 articles on some aspect of disability and HIV and AIDS were published annually in the peer-reviewed literature from 1990 to 2000, increasing slightly to an average of 6 per year from 2000 to 2010. Given the vast amount of research around HIV and AIDS and the thousands of articles on the subject published in the peer-reviewed literature annually, the continuing lack of attention to HIV and AIDS among this at risk population, now estimated to make up 15% of the worlds population, is striking. However, the statistics, while too limited at this point to make definitive conclusions, increasingly suggest at least an equal HIV prevalence rate for people with disabilities as for their non-disabled peers.

‘What I've noticed what they need is the stats’: Lay HIV counsellors’ reports of working in a task-orientated health care system

Counselling has been recognized as an important component of HIV and AIDS care, and an essential part of HIV testing. In South Africa, a commonly used model is for lay counsellors to be trained by non-governmental organizations and then to work alongside professionals in public health clinics. In studies of counselling in health care settings in the context of HIV, there has been a relative lack of attention to the organizational and systemic issues faced by counsellors and counselling programmes. Counsellors are involved in a dynamic interrelationship not only with their clients but also with the organizations in which they work. In this paper we report on counsellors’ accounts of the impact of their unclear position on their work. Twenty-nine counsellors were interviewed using individual interviews and focus group discussions. The findings reveal a clash between an holistic counselling approach and a task-oriented health system. The results provide some indication of the need to consider workplace issues in planning and researching VCT.

‘Ah, but the whiteys love to talk about themselves’: discomfort as a pedagogy for change

This article reports on an interdisciplinary and collaborative educational module prepared for fourth‐year Psychology and Social Work students at two higher education institutions in the Western Cape, South Africa. The aim of the module was to provide students with the opportunity to experience learning across the boundaries of institution, discipline, language, race and class, and to provide the team with data to enhance understanding of how students grapple with issues of difference. The study was based on data obtained from student texts produced in response to the final reflective essay assignment. The texts provided valuable insights into how students, some of whom appeared to come into contact with peers from different socioeconomic backgrounds for the first time, grappled with themselves in relation to ‘the other’. A theoretical framework based on the notion of a ‘pedagogy of discomfort’ and the complementary relationship of recognition and distribution, was used to explicate the data. The data revealed that there are cognitive as well as affective dimensions in learning about difference. It suggested that a pedagogical intervention can enhance what students learn about difference, but that this depends on various factors: pedagogical factors, and factors pertaining to the students’ own prior experience and cultural capital. The analysis of the assignments suggested that power differentials and inequality in terms of material and cultural resources can limit the transformational character of such initiatives.

Community, self and identity: participatory action research and the creation of a virtual community across two South African universities

Fourth year students in psychology and social work from two South African universities worked together across boundaries of race and class in a course which required them to engage in a personal reflexive way with issues of community and identity. A combination of face-to-face workshops and online tutorial groups was used. The course was demanding of both staff and students, but preliminary analysis suggests that the creation of virtual communities may be of benefit in assisting students in their preparation for the challenges of working in a diverse and unequal society.

Bringing the social into pedagogy: unsafe learning in an uncertain world

The paper describes a collaborative curriculum development project implemented over 3 years at 2 universities in the Western Cape Province of South Africa. The project involved a short module in which students in their fourth year of study interacted and learnt collaboratively across the boundaries of institution, discipline, race and social class, about the concepts of community, self and identity. The pedagogic approach adopted is described, as well as the responses of the students, and a brief reflection on some of the learning outcomes attained. The paper considers the learning processes which the curriculum development team experienced, and suggests that in order to facilitate learning for an ‘uncertain world’, the curriculum designers, too, need to engage in learning processes in which they make themselves vulnerable, mirroring some of the learning processes they expect the students to undergo.

HIV/AIDS in South Africa 25 Years On

List of tables and figures. List of contributors. Foreword. Acknowledgements. 1: Introduction. Section One: Psychosocial Issues. 2: The Sociocultural Aspects of HIV/AIDS. 3: HIV and Women. 4: Masculinity and HIV/AIDS. 5: HIV and Youth: A Behavioural perspective. 6: Infants and Young Children affected by HIV/AIDS. 7: Poverty and HIV and AIDS. 8: HIV and Stigma in South Africa. Section Two: Prevention and Treatment. 9: The Politics and Psychology of AIDS Denialism. 10: Local Level Responses to HIV/AIDS in South Africa. 11: Social Movements and HIV/AIDS in South Africa. 12: Approaches to HIV Counselling and Testing: Strengths and Weaknesses, and challenges for the Way Forward. 13: Vertical transmission of HIV - Pregnancy and Infant issues. 14: HIV/AIDS, nutrition and structural interventions in South Africa: A move in the right direction. 15: Strengthening Community Responses to AIDS: Possibilities and Challenges. 16: HIV, religion and spirituality. Section Three: Persons Living with HIV/AIDS. 17: Experiences of People Living with HIV. 18: Positive Prevention: HIV Risk Reduction for People Living with HIV/AIDS. Section Four: New directions in HIV research. 19: HIV/AIDS and Persons with Disabilities. 20: HIV/AIDS and the Prison System. 21: HIV and Circumcision. 22: Participation in HIV Vaccine Trials. 23: Bridging the Gap between HIV and Mental Health Services in South Africa