Traditional healers' explanatory models of intellectual disability in Cape Town.

While intellectual disability is experienced worldwide, with much greater rates in contexts of poverty, relatively few studies on intellectual disability have been conducted in low- and middle-income countries. High levels of intellectual disability in South Africa exist alongside high levels of poverty, malnutrition and poor or inaccessible healthcare services. The lack of access to services partly explains why many turn to traditional healers. Within this context there is very limited research on the role that traditional healers play in relation to intellectual disability in South Africa. The current study investigated traditional healers' understanding and beliefs about intellectual disabilities and the treatment modalities that they use. An exploratory qualitative research design was used to examine the views and perspectives of traditional healers on intellectual disability. Fifteen traditional healers participated in the study. Key findings show that the naming of and the terminology used to describe and identify intellectual disability are very much similar to what has been observed in African cultures in general where intellectual disability is identified as an abnormality. Some traditional healers located the presentation of intellectual disability within the biomedical sphere while others gave supernatural explanations for how intellectual disability presents in children and for its causes. All traditional healers expressed a willingness to work with the Western formal healthcare system. Findings on traditional healers' views on future collaborations with the formal health system provide opportunities for these two forms of healthcare services to be synergised for the strengthening and improvement of services provided to children with intellectual disability and their families.

Putting cultural difference in its place: Barriers to access to health services for parents of children with intellectual disability in an urban African setting.

BACKGROUND: Access to appropriate specialist level services for children with intellectual disability is challenging in Africa, with very few services available. Much literature on the utilisation of services by carers of children with intellectual disability in Africa emphasises the supposed incompatibility between indigenous and western beliefs, failing to identify more obvious, embodied barriers to access to care. METHOD: As part of a study on children with intellectual disability in Cape Town, South Africa, we interviewed caregivers regarding the difficulties in accessing care, specifically the complex, expensive and time-consuming travelling routes from home to care. RESULTS: Caregivers discussed the embodied difficulties accessing care. Everyday struggles with transport, and crowded, dangerous and hostile environments were identified as barriers to care. CONCLUSION: These challenges are often overlooked in the literature, in favour of an emphasis on cultural difference. This dualistic view of the world may obscure more obvious reasons why people find it difficult to use services, even when they are available.

African families' and caregivers' experiences of raising a child with intellectual disability: A narrative synthesis of qualitative studies.

BACKGROUND: The prevalence of intellectual disability was high in Africa, particularly amongst low socio-economic communities. Despite this, there was limited literature on primary caregivers and parents of people with intellectual disabilities regarding their experience raising an individual with the condition, especially within the African context. OBJECTIVES: The aim of the current systematic review was to investigate experiences of caregivers and parents of children with intellectual disability in Africa. METHOD: We used strict eligibility criteria to identify suitable studies. We identified Medical Subject Headings (MeSH) terms and other keyword terms and, after conducting searches in electronic databases, identified articles that met the inclusion criteria for articles published between 1975 and the end of 2019. RESULTS: 164 articles were assessed for eligibility. Nine studies met the review's criteria. Six major themes emerged: understanding of intellectual disability (ID), worries about the future, burden of care, lack of services, coping strategies and stigma and discrimination. CONCLUSION: Caregivers of children with intellectual disability in Africa faced substantial challenges. Current findings suggested that there was the need for both formal and alternative healthcare workers to work together towards an understanding and management of intellectual disability in Africa.

'I Waited for It until Forever': Community Barriers to Accessing Intellectual Disability Services for Children and Their Families in Cape Town, South Africa.

BACKGROUND: Intellectual disability is more common in low- and middle-income countries than in high-income countries. Stigma and discrimination have contributed to barriers to people with intellectual disability accessing healthcare. As part of a larger study on caregiving of children with intellectual disability in urban Cape Town, South Africa, we interviewed a sub-group of families who had never used the intellectual disability services available to them, or who had stopped using them. METHODS: We employed a qualitative research design and conducted semi-structured interviews to explore the views and perspectives of parents and caregivers of children with intellectual disability who are not using specialised hospital services. We developed an interview guide to help explore caregivers' and parents' views. RESULTS: Results revealed that caregivers and parents of children with intellectual disability did not use the intellectual disability service due to financial difficulties, fragile care networks and opportunity costs, community stigma and lack of safety, lack of faith in services and powerlessness at effecting changes and self-stigmatisation. CONCLUSION: Current findings highlight a need for increased intervention at community level and collaboration with community-based projects to facilitate access to services, and engagement with broader issues of social exclusion.

"It Had a Lot of Cultural Stuff in It": HIV-Serodiscordant African American Couples' Experiences of a Culturally Congruent Sexual Health Intervention.

Objective: The increased life expectancy of people living with HIV has brought about an increase in serodiscordant couples, in which there is risk of HIV transmission. Therefore, interventions that promote sexual health and reduce risk are critical to develop for these couples. Given the disproportionate burden of HIV among populations of color, it is also critical that these interventions are culturally congruent. The EBAN intervention for African American serodiscordant couples recognizes the centrality of culture in shaping sexual behaviors and helps couples develop intimacy and positive prevention behaviors. The analytic objective of our study was to examine the knowledge and awareness gained by participants in the intervention. Participants: Participants (n=17) who completed at least half of the eight intervention sessions. Methods: Brief post-implementation semi-structured interviews were conducted between January 1, 2016 and December 31, 2016. Team-based, targeted content analysis focused on knowledge and awareness gains. Results: Participants described learning about sexual health, expanded sexual options, and sexual communication. The "EBAN café," a component that gives couples a menu of options for safer sex behaviors, was particularly popular. Participants also noted the value of learning how to communicate with one another about their sexual health-related concerns and preferences. They appreciated the "cultural stuff" that was infused throughout the sessions, including the emphasis on learning from one another as couples. Conclusions: Couples at risk for HIV transmission benefit from strengthening skills and knowledge related to healthy sexuality. A behavioral intervention that aligns with cultural values and imparts culturally congruent sexual health information appeals to couples who seek ways to enhance their intimacy and sexual options while also reducing risk.

Caregivers' and parents' explanatory models of intellectual disability in Khayelitsha, Cape Town, South Africa.

BACKGROUND: Post-apartheid, understanding and management of intellectual disability remain poor in South Africa, complicated by various contextual and cultural explanations used to describe and conceptualize this condition. METHOD: We conducted 20 semi-structured interviews with primary caregivers and parents of children with intellectual disability residing in Khayelitsha, a low-income setting in Cape Town, South Africa. We used Kleinman's Explanatory Models (EMs) of illness to explore terms used to describe and conceptualize this condition. RESULTS: Carers' explanatory models included biomedical causes, injuries during pregnancy or birth, as well as spiritual causes. It was reported that there were significant difficulties in accessing services and support, and difficulties with coping in the context of extreme poverty and deprivation. CONCLUSIONS: Current findings highlight a need for collaboration between the biomedical and alternative healthcare systems in educating carers and parents regarding intellectual disability.

Intellectual disability rights and inclusive citizenship in South Africa: What can a scoping review tell us?

BACKGROUND: Intellectual disability (ID) is the most prevalent disability in the world. People with intellectual disability (PWID) frequently experience extreme violations of numerous human rights. Despite greater prevalence in South Africa than in high-income countries, most ID research currently comes from the Global North. This leaves us with few contextually sensitive studies to draw from to advance inclusive citizenship. OBJECTIVES: Our scoping review aims to investigate pertinent ID rights issues in South Africa, synthesise quantitative and qualitative studies, and provide a synopsis of available evidence on which to base future work. We aim to clarify key concepts, address gaps in the literature and identify opportunities for further research. METHOD: We followed strict eligibility criteria. Medical subject heading terms were entered into seven databases. Seven reviewers worked independently, two per paper. Quantitative and qualitative data extraction forms were designed. We followed Preferred Reporting Items for Systematic Review and Meta-Analysis (PRISMA) guidelines and registered a protocol. An inductive approach enabled a thematic analysis of selected studies. RESULTS: By following PRISMA guidelines, 82 studies were assessed for eligibility of which 59 were included. Ten sub-themes were integrated into four main themes: the right not to be discriminated against, the right to psychological and bodily integrity, the right to accommodating services and challenges to rights implementation. CONCLUSION: People with intellectual disability face compound difficulties when trying to assert their constitutionally entitled rights. This ongoing project requires serious commitment and action. Statutory obligations to nurture every South African's human rights naturally extend to PWID and their supporters who forge ahead in a disabling environment.

An attachment-focused parent-child intervention for biting behaviour in a child with intellectual disability: A clinical case study.

Attachment and attachment-related psychopathology has increasingly gained focus since Bowlby introduced the concept into the clinical repertoire. However, little has been done to explore attachment, or attachment-based interventions, within the context of intellectual disability. Clinical experience, however, has demonstrated significant attachment-related problems in children with intellectual disability. This article explores one such case of a 13-year-old girl with moderate intellectual disability and severe and persistent externalizing behavioural difficulties - biting, in particular. Once the severity of the behaviour was formulated within the framework of attachment, a structured attachment-focused parent-child intervention was designed in order to repair the damaged attachment between mother and daughter as a way of addressing the problematic behaviour. Outcomes demonstrated a sustained - immediately, at 3- and 6-month follow-up - positive impact of the intervention not only on the presenting problem but also on the quality of the relationship between mother and daughter. Research and clinical implications are discussed.

Cumulative effect of multiple trauma on symptoms of posttraumatic stress disorder, anxiety, and depression in adolescents.

BACKGROUND: Recent literature has indicated that exposure to multiple traumatic events in adults is associated with high levels of posttraumatic stress disorder (PTSD), anxiety, and depression. Against the backdrop of stressful life events and childhood abuse and neglect, we investigated the cumulative effect of multiple trauma exposure on PTSD, anxiety, and depression in an adolescent sample. METHOD: One thousand one hundred forty 10th-grade learners from 9 Cape Town (South Africa) schools completed questionnaires on stressful life experiences; trauma exposure; and symptoms of anxiety, depression, and PTSD. Our population of interest for this study was adolescents between the ages of 14 and 18 years who had been exposed to serious, Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, qualifying traumatic events. The final sample size was thus 922. RESULTS: Rates of trauma exposure, PTSD, depression, and anxiety were high. Controlling for sex, stressful life experiences in the past year, and childhood adversity, we found an effect of cumulative trauma exposure effect on PTSD and depression, with an increase in the number of traumas linearly associated with an increase in symptoms of PTSD (F((4,912)) = 7.60, P < .001) and depression (F((4,912)) = 2.77, P < .05). We did not find a cumulative effect on anxiety. CONCLUSION: Our findings indicate that adolescents exposed to multiple traumas are more likely to experience more severe symptoms of PTSD and depression than those who experience a single event, with this effect independent of childhood adversity and everyday stressful life experiences. Exposure to multiple trauma, however, does not seem to be associated with more severe anxiety symptoms.