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

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      Abstract

      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.

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      Scoping studies: towards a methodological framework

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        Guidance for conducting systematic scoping reviews.

        Reviews of primary research are becoming more common as evidence-based practice gains recognition as the benchmark for care, and the number of, and access to, primary research sources has grown. One of the newer review types is the 'scoping review'. In general, scoping reviews are commonly used for 'reconnaissance' - to clarify working definitions and conceptual boundaries of a topic or field. Scoping reviews are therefore particularly useful when a body of literature has not yet been comprehensively reviewed, or exhibits a complex or heterogeneous nature not amenable to a more precise systematic review of the evidence. While scoping reviews may be conducted to determine the value and probable scope of a full systematic review, they may also be undertaken as exercises in and of themselves to summarize and disseminate research findings, to identify research gaps, and to make recommendations for the future research. This article briefly introduces the reader to scoping reviews, how they are different to systematic reviews, and why they might be conducted. The methodology and guidance for the conduct of systematic scoping reviews outlined below was developed by members of the Joanna Briggs Institute and members of five Joanna Briggs Collaborating Centres.
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          Enhancing the scoping study methodology: a large, inter-professional team’s experience with Arksey and O’Malley’s framework

          Background Scoping studies are increasingly common for broadly searching the literature on a specific topic, yet researchers lack an agreed-upon definition of and framework for the methodology. In 2005, Arksey and O’Malley offered a methodological framework for conducting scoping studies. In their subsequent work, Levac et al. responded to Arksey and O’Malley’s call for advances to their framework. Our paper builds on this collective work to further enhance the methodology. Discussion This paper begins with a background on what constitutes a scoping study, followed by a discussion about four primary subjects: (1) the types of questions for which Arksey and O’Malley’s framework is most appropriate, (2) a contribution to the discussion aimed at enhancing the six steps of Arskey and O’Malley’s framework, (3) the strengths and challenges of our experience working with Arksey and O’Malley’s framework as a large, inter-professional team, and (4) lessons learned. Our goal in this paper is to add to the discussion encouraged by Arksey and O’Malley to further enhance this methodology. Summary Performing a scoping study using Arksey and O’Malley’s framework was a valuable process for our research team even if how it was useful was unexpected. Based on our experience, we recommend researchers be aware of their expectations for how Arksey and O’Malley’s framework might be useful in relation to their research question, and remain flexible to clarify concepts and to revise the research question as the team becomes familiar with the literature. Questions portraying comparisons such as between interventions, programs, or approaches seem to be the most suitable to scoping studies. We also suggest assessing the quality of studies and conducting a trial of the method before fully embarking on the charting process in order to ensure consistency. The benefits of engaging a large, inter-professional team such as ours throughout every stage of Arksey and O’Malley’s framework far exceed the challenges and we recommend researchers consider the value of such a team. The strengths include breadth and depth of knowledge each team member brings to the study and time efficiencies. In our experience, the most significant challenges presented to our team were those related to consensus and resource limitations. Effective communication is key to the success of a large group. We propose that by clarifying the framework, the purposes of scoping studies are attainable and the definition is enriched.
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            Author and article information

            Affiliations
            [1 ]Department of Psychiatry and Mental Health, University of Cape Town, South Africa
            [2 ]Alexandra Hospital, Western Cape Government, South Africa
            [3 ]Lentegeur Psychiatric Hospital, Department of Health, South Africa
            [4 ]Department of Health & Rehabilitation Sciences, University Of Cape Town, South Africa
            [5 ]Department of Psychology, Stellenbosch University, South Africa
            Author notes
            Corresponding author: Charlotte Capri, charlotte.capri@ 123456westerncape.gov.za
            Journal
            Afr J Disabil
            Afr J Disabil
            AJOD
            African Journal of Disability
            AOSIS
            2223-9170
            2226-7220
            25 April 2018
            2018
            : 7
            29850438 5968870 AJOD-7-396 10.4102/ajod.v7i0.396
            © 2018. The Authors

            Licensee: AOSIS. This work is licensed under the Creative Commons Attribution License.

            Categories
            Review Article

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