65 research outputs found

    Building communication interventions for children with severe disabilities on cultural resources: an action research enquiry

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    Includes bibliographical referencesIn South Africa, children with severe disabilities are often the most neglected in terms of planning and providing appropriate interventions. For those with severe communication disabilities, an additional lack is in the area of the basic human right to meaningful interactions and communication. Sustainable strategies to provide opportunities for basic communicative participation of these children are urgently sought. The focus of this study, grounded in the transformative paradigm, was on culturally determined processes that can increase and enrich the communicative participation of children with severe communication disabilities in an isiXhosa language and cultural context. The aims of the study were: * to identify culturally determined non-verbal and pragmatic elements of social interaction in an isiXhosa language context. * to identify culturally appreciative strategies to support the communicative participation of children with severe communication impairments in this context. The participants were 44 mothers and/or primary carers of children with severe cerebral palsy from an under-resourced peri-urban isiXhosa speaking context in the Western Cape. The method comprised an action research journey with iterative cycles of collaborative action, reflection and subsequent further planning with participants. Data collection included action reflection group sessions, reflective dialogues with the group facilitators, and participant observations. All data was qualitative. Data analysis included a process of in-group collaborative analysis and verification followed by reflective dialogues with the group facilitators and interpretive thematic content analysis. The findings included 12 action learning outcomes, from which two main themes were identified, directly responding to the two main aims of the study. Findings that were considered new were framed as three theses: Thesis 1: Relationships are the context and motivation for communicative participation: the social inclusion and non-ostracism of mothers need to be prioritised in order for them and their children to enjoy communicative participation. Thesis 2: The 'Middle Ground' is a valuable positionality in implementing transformative action learning as an intervention approach. Thesis 3: There is a need to reframe culture as a resource in supporting the communication development of children with severe communication disabilities. In conclusion, implications for clinical practice, for training, for policy planning and implementation and for further research are discussed. Practical suggestions for application by mothers and others caring for children with severe communication disabilities in similar contexts are included

    Teaching policy literacy: a case study from the field of disability and rehabilitation studies

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    Policies guide how we practice as professionals and service providers. A critical engagement with policy analysis is needed and the field of disability and rehabilitation is no exception. This is because the discourse of rehabilitation is a fluid construct that has been subject to the changing understandings of, and approaches to, disability. Research indicates that professionals and service providers struggle with the divide that regularly exists between policy formation and policy implementation. Reasons for this divide include the fact that the process of policy formation does not take the context of implementation into account, leaving professionals and service providers on their own to interpret and apply the policy to their work. We posit that policy literacy is a core contributor to the capacity to understand policy content, to interpret it in light of existing factors and to implement policy in a contextually relevant manner. In this paper, we describe a practice-based teaching innovation of authentic learning through which a cohort of 11 postgraduate diploma student-participants was supported to address the challenge of understanding, implementing and contributing to policy in their own work contexts

    Community-based rehabilitation workers’ perspectives of wheelchair provision in Uganda: A qualitative study

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    Background: The challenges of wheelchair provision and use in less resourced settings are the focus of global efforts to enhance wheelchair service delivery. The shortage of professional wheelchair service providers in these settings necessitates the collaboration of multiple stakeholders, including community-based rehabilitation (CBR) workers, whose role needs to be further understood. Objectives: The aim of this study was to determine what CBR workers in three areas of Uganda perceived as (1) the challenges with wheelchair provision and use, (2) the factors contributing to these challenges, (3) the role they themselves can potentially play and (4) what facilitators they need to achieve this. Method: This qualitative study in the transformative paradigm comprised focus group discussions to gather perceptions from 21 CBR workers in three areas of Uganda, each with an operational wheelchair service, participant observations and field notes. Thematic analysis of data was implemented. Results: Community-based rehabilitation workers’ perceptions of challenges were similar while perceived causes of challenges differed as influenced by location, historical and current wheelchair availability and the CBR workers’ roles. Their main responsibilities included assistance in overcoming barriers to access the service, transfer of skills and knowledge related to wheelchairs, follow-up of users for wheelchair-related problem-solving, and user and community empowerment. Conclusion: Community-based rehabilitation workers can contribute in various ways to wheelchair service delivery and inclusion of wheelchair users; however, their capabilities are not consistently applied. Considering the diversity of contextual challenges, CBR workers’ range of responsive approaches, knowledge of networks and ability to work in the community make their input valuable. However, to optimise their contribution, specific planning for their training and financial needs and effective engagement in the wheelchair services delivery system are essential

    Parental experiences on the role of wheelchairs in the lives of their children with mobility impairments : a qualitative exploration in Dubai

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    CITATION: Liebenberg, A.; Geiger, M. & Visagie, S. 2022. Parental experiences on the role of wheelchairs in the lives of their children with mobility impairments: a qualitative exploration in Dubai. Disability and Rehabilitation: Assistive Technology, 17(3):310-317, doi:10.1080/17483107.2020.1782488The original publication is available at https://www.tandfonline.com/journals/iidt20Purpose: To explore parental experiences on the role of wheelchairs in the lives of their children with mobility impairments in Dubai. Methods: Seven participants were recruited through purposive sampling and their experiences were explored by conducting semi-structured interviews. The audio recordings were transcribed and thematically analysed. Results: The findings showed that wheelchairs were an essential part of the children`s lives, which enabled their participation in the home, the school and the community. Procurement processes were difficult owing to a lack of assessment and prescription processes as well as insurance companies providing little assistance with payment. The participants described Dubai as a wheelchair friendly city and two overarching themes emerged; firstly, The wheelchair: “It is her life”, and, secondly, Participation: Isolation versus inclusion. Conclusion: The study is the first of its kind in Dubai and indicated that the wheelchair played an important role in the children’s lives and allowed participation in life roles that brought joy and fulfilment. Without wheelchairs, children would be isolated and frustrated. However, some of the participants were not satisfied with their child’s current wheelchair and felt the chair was not appropriate. Recommendations to specific stakeholders included: the development of policies to guide wheelchair service provision by government. In addition, insurance providers could collaborate with the government to adhere to the policy to ensure healthy lives and promote well-being for all. IMPLICATIONS FOR REHABILITATION: The wheelchair provided children the mobility to participate in life roles instead of being isolated. Not all children had appropriate wheelchairs. Service providers and medical insurance did not give sufficient support during wheelchair selection and procurement.https://www.tandfonline.com/doi/full/10.1080/17483107.2020.1782488Publishers versio

    Simple ideas that work: Celebrating development in persons with profound intellectual and multiple disabilities

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    Background: The purpose of this article is to share some lessons learnt by an interdisciplinary therapy team working with persons with profound intellectual and multiple disabilities (PIMD), implemented in diverse, low-income contexts over a period of 8 years. Objectives: The objective of all the activities described here was to provide increased stimulation and development opportunities for persons with PIMD within different settings (day care centre, residential centre or family home). Method: We used an iterative action-learning approach where we applied existing evidence in the given context, reflected on and adapted strategies in collaboration with stakeholders on a cyclical basis. We focussed on achieving our objectives through ongoing hands-on training of the carers involved with the clients as we felt that by providing them with the knowledge and skills needed, plus ongoing support, these programmes would be more sustainable. Findings: It took some time to put systems in place in care settings, but once they became part of the daily routine, they provided increased opportunities for learning for clients with PIMD. In addition, there were often marked changes in individual clients’ communicative and physical functioning, which in turn encouraged carers to find new and different ways to interact with, and stimulate, the persons with PIMD in their care. Conclusion: Our hope is that parents and carers or professionals working in the field of PIMD in low-income contexts elsewhere may find one, some or all of these simple ideas useful in providing opportunities for learning, development and enjoyment for persons with PIMD

    Changing healthcare professionals' behaviors to eliminate disparities in healthcare: What do we know? How might we proceed?

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    The patient-healthcare provider communication process--particularly the provider's cultural competency--is increasingly recognized as a key to reducing racial/ethnic disparities in health and healthcare utilization. A working group was formed by the Office of Minority Health, Department of Health and Human Services to identify strategies for improving healthcare providers' cultural competency. This expert panel, one of several working groups called together to explore methods of reducing healthcare disparities, was comprised of individuals from academic medical centers and health professional organizations who were nationally recognized as having expertise in healthcare communication as it relates to diverse populations. During the 2-day conference, the panel identified, from personal experience and knowledge of the literature, key points of intervention and interventions most likely to improve the cross-cultural competency of healthcare providers. Proposed interventions included introduction of cultural competence education before, during, and after clinical training; implementation of certification and accreditation requirements in cross-cultural competence for practicing healthcare providers; use of culturally diverse governing boards for clinical practices; and active promotion of workforce cross-cultural diversity by healthcare organization administrators. For each intervention, methods for implementation were specified. On-going monitoring and evaluation of processes of care using race/ethnicity data were recommended to ensure the programs were functioning

    Comparison of the socio-economic value and welfare of working donkeys in rural and urban Ethiopia

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    Donkeys (Equus asinus) are widely used throughout Ethiopia and play essential roles in a variety of everyday and income-generating tasks for the people that use them. The challenges faced by people and their working equids vary across communities and geographic locations. This may have implications for how donkeys are perceived by the people they work for, the roles they fulfil and ultimately their welfare. Two complementary methodological approaches were used in this study to explore the socio-economic value of donkeys for their owners and the welfare of the donkeys in rural and urban Ethiopia. Using a questionnaire, donkey owners were asked about their donkeys, their attitudes and beliefs related to donkey use and ownership, and the role donkeys played in their lives. Animal-based welfare assessments were also conducted on a sample of donkeys from different locations, with the overarching aim of the study to investigate differences in use, beliefs, and donkey welfare between rural and urban locations. In both rural and urban locations, working donkeys are critical for their owners’ income-generating activity and therefore their livelihoods. The work they undertake differs substantially between locations, as does their welfare. Work in each setting presents its own challenges and these are reflected in the behaviour and physical health of the donkeys. Rural donkeys showed more apathetic behaviour, a higher ectoparasite burden and greater evidence of tethering/hobbling. Urban donkeys were more alert and had a wider range of body condition scores. The findings highlight marked differences in the role and welfare of donkeys between different areas within the same country, demonstrating the importance of understanding the context, both from the perspective of humans and working equids, prior to staging interventions intended to benefit either party

    Being with donkeys: insights into the valuing and wellbeing of donkeys in central Ethiopia

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    This paper explores the interwoven lives of donkeys and the people who depend on them for their livelihoods in central Ethiopia. Drawing on data from twelve participatory workshops, insights are elicited into the ways donkey guardians’ value and treat their donkeys. Methodologically, Participatory Rural Appraisal (PRA) and Appreciative Inquiry (AI) techniques were merged to explore the complex and multi-dimensional contributions donkeys make to participants’ lives. Findings reveal the keeping of donkeys can make the difference between destitution and modest survival, but societal perception of donkeys as low-status animals has an impact on their owners’ lives and donkey wellbeing. This research contributes empirical insights on the valuing of donkeys and enables a deepened understanding of human-donkey relations. The combination of PRA and AI in the methodology demonstrates how to formulate a compassionate and empathetic approach for exploring donkey value and wellbeing with marginalised groups

    Effects of chronic ascariasis and trichuriasis on cytokine production and gene expression in human blood: a cross-sectional study.

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    Background Chronic soil-transmitted helminth (STH) infections are associated with effects on systemic immune responses that could be caused by alterations in immune homeostasis. To investigate this, we measured the impact in children of STH infections on cytokine responses and gene expression in unstimulated blood. Methodology/Principal Findings Sixty children were classified as having chronic, light, or no STH infections. Peripheral blood mononuclear cells were cultured in medium for 5 days to measure cytokine accumulation. RNA was isolated from peripheral blood and gene expression analysed using microarrays. Different infection groups were compared for the purpose of analysis: STH infection (combined chronic and light vs. uninfected groups) and chronic STH infection (chronic vs. combined light and uninfected groups). The chronic STH infection effect was associated with elevated production of GM-CSF (P = 0.007), IL-2 (P = 0.03), IL-5 (P = 0.01), and IL-10 (P = 0.01). Data reduction suggested that chronic infections were primarily associated with an immune phenotype characterized by elevated IL-5 and IL-10, typical of a modified Th2-like response. Chronic STH infections were associated with the up-regulation of genes associated with immune homeostasis (IDO, P = 0.03; CCL23, P = 0.008, HRK, P = 0.005), down-regulation of microRNA hsa-let-7d (P = 0.01) and differential regulation of several genes associated with granulocyte-mediated inflammation (IL-8, down-regulated, P = 0.0002; RNASE2, up-regulated, P = 0.009; RNASE3, up-regulated, p = 0.03). Conclusions/Significance Chronic STH infections were associated with a cytokine response indicative of a modified Th2 response. There was evidence that STH infections were associated with a pattern of gene expression suggestive of the induction of homeostatic mechanisms, the differential expression of several inflammatory genes and the down-regulation of microRNA has-let-7d. Effects on immune homeostasis and the development of a modified Th2 immune response during chronic STH infections could explain the systemic immunologic effects that have been associated with these infections such as impaired immune responses to vaccines and the suppression of inflammatory diseases
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