Where there is no evidence: implementing family interventions from recommendations in the NICE guideline 11 on challenging behaviour in a South African health service for adults with intellectual disability.

BACKGROUND: Low- and middle-income countries often lack the fiscal, infrastructural and human resources to conduct evidence-based research; similar constraints may also hinder the application of good clinical practice guidelines based on research findings from high-income countries. While the context of health organizations is increasingly recognized as an important consideration when such guidelines are implemented, there is a paucity of studies that have considered local contexts of resource-scarcity against recommended clinical guidelines. METHODS: This paper sets out to explore the implementation of the NICE Guideline 11 on family interventions when working with persons with intellectual disability and challenging behavior by a group of psychologists employed in a government health facility in Cape Town, South Africa. RESULTS: In the absence of evidence-based South African research, we argue that aspects of the guidelines, in particular those that informed our ethos and conceptual thinking, could be applied by clinical psychologists in a meaningful manner notwithstanding the relative scarcity of resources. CONCLUSION: We have argued that where guidelines such as the NICE Guidelines do not apply contextually throughout, it remains important to retain the principles behind these guidelines in local contexts. Limitations of this study exist in that the data were drawn only from the clinical experience of authors. Some of the implications for future research in resource-constrained contexts such as ours are discussed. Smaller descriptive, qualitative studies are necessary to explore the contextual limitations and resource strengths that exist in low- and middle-income settings, and these studies should be more systematic than drawing only on the clinical experience of authors, as has been done in this study.

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.

'We have to be satisfied with the scraps': South African nurses' experiences of care on adult psychiatric intellectual disability inpatient wards.

BACKGROUND: Migrating nursing labour inadvertently reinforces South Africa's care drain, contributes to a global care crisis and forces us to reconsider migration motivation. This paper highlights issues that complicate psychiatric intellectual disability nursing care and identifies loci for change in an attempt to redress this care challenge. METHOD: An exploratory descriptive-interpretivist method investigated nurses' experiences of psychiatric intellectual disability work. Sixteen free association narrative interviews were collected in 2013. Thematic analysis allowed findings to emerge from the data. RESULTS: Findings reflect a number of themes: 'relational interaction', 'care burden', 'system fatigue', 'infantilising dynamic of care' and 'resources for coping'. CONCLUSION: System fatigue contributes more to negative experiences of providing care than direct patient work, and nurses experience more relational reciprocity from patients than from institutional management. Organizations should meet nurses' needs for burnout prevention, afford them impact in implementing institutional controls, and engage in a non-exploitative and non-exclusionary way.

On developing an intersubjective frame for intellectual disability work.

PURPOSE: This paper aims to show how an intersubjective view on disablist discourse and practice might craft an egalitarian space from which expert voices on living and working with intellectual impairment could emerge, and attempts to further bridge psychoanalytic and disability studies. METHOD: The paper shares the view on dispelling the notion that intellectually impaired individuals cannot benefit from psychoanalytic psychotherapy, and speaks to the slow progression of research on intellectual disability psychotherapies. It supports disability researchers' emphasis on moving studies from a third-person reporting style toward counter-hegemonic texts, and explores a way of forefronting impaired individuals' expertise. RESULTS: The discussion shows how subjectivities of both psychotherapist and intellectually impaired patient can intersect - thereby raising previously subdued voices to enable social action for the expression of dissatisfaction, equal (moral) rights, individuality and freedom from disablist practices. CONCLUSION: Intersubjective work could offer a new way of understanding psychotherapy and research with intellectually disabled individuals differing in degree and manner of impairment; address effects of subaltern voice, marginalisation, disempowerment and defense by equalising therapist-patient power (im)balances; and by virtue of its scientific literature base, provide a contextual clinical account of disability psychotherapy and research as anti-discriminatory political and social processes. Implications for Rehabilitation Psychoanalytic intersubjectivity implies that there can be no analytic neutrality unaffected by the therapist's subjectivity, and that ongoing experiences of one's subjectivity are deeply influenced by the subjectivities of those with whom one is interacting. Cautious and thoroughly considered self-disclosure on the part of the therapist in experiencing the patient becomes a permissible therapeutic intervention. In intersubjective research texts, the experience of disability can ultimately be voiced by the real experts living with intellectual impairment in an often disabling world.