African Journal of Disability最新文献

Background: Digital stories have been shown to be effective in sharing information. The Partnerships for Inclusive Research and Learning (PIRL) was a 4-year international participatory research project focussed on the digital divide in inclusive research.

Objectives: Members of PIRL share their experience of using digital storytelling to get key messages from the project to a wide range of people.

Method: Members of PIRL were invited to develop digital stories and create project-specific guidelines for digital story development. Seven people participated in workshops given by experts, read literature, watched digital stories and discussed how to create digital stories.

Results: The group created six digital stories, each one addressing a different aspect related to disability-inclusive research, with many having a focus on Africa and the creation of credible African evidence. The importance of assisting community members to think about and support research and evidence creation was one of the goals of the project. The videos provide an avenue to share insights about disability-inclusive development research. Group members stated that being part of the process significantly improved their understanding of translating evidence into formats that are more understandable.

Conclusion: Creating digital stories requires commitment, a significant amount of time, access to digital tools, and financial resources. Working collaboratively on this project was not only meaningful but also encouraged positive working relationships and fostered critical thinking.

Contribution: This article contributes to a better understanding of ways in which digital storytelling can be used in knowledge-sharing strategies to promote disability inclusion.

Background: This article addresses the intersectional challenges faced by Queer people living with disabilities (QPwD).

Objectives: The article aims to highlight the nature and extent of their struggles while proposing inclusive policies for societal integration and equality. Amid global efforts to promote Queer rights, discrimination and violence persist, particularly affecting those with disabilities.

Method: Drawing upon a comprehensive review of literature and empirical research, this study investigated the experiences of QPwD, identifying key challenges such as limited access to inclusive services, heightened vulnerability to abuse and systemic unemployment. The methodological approach used in this study involves synthesising existing scholarship and empirical evidence to inform the proposed inclusive policies.

Results: The findings reveal pervasive barriers encountered by QPwD, including societal stigma, attitudinal biases and physical obstacles. Discrimination in employment, education and healthcare further exacerbates their marginalisation, necessitating proactive measures to address systemic inequalities and promote social inclusion.

Conclusion: In conclusion, this article underscores the urgent need for policy reforms and societal interventions to uphold the rights and dignity of QPwD. By advocating for Queer-inclusive workplace policies, enhancing accessibility in public infrastructure and fostering governmental support for equality initiatives, this study contributes to advancing social justice and inclusivity.

Contribution: The article calls for concerted efforts to create a more equitable and inclusive society where all individuals, regardless of their sexual orientation or disability status, can thrive and fulfil their potential.

Background: Emotion- and problem-focused coping strategies are frequently employed by caregivers of autistic children to increase their general well-being and resilience to the stress of raising the child. Although these strategies cannot directly address the situation, it is useful for handling stressful situations that cannot change.

Objectives: The study seeks to explore and understand the emotion- and problem-focused strategies that caregivers use to cope with the challenges of raising a child with autism.

Method: This was a qualitative, exploratory and descriptive research study. Twenty-eight caregivers were purposive-convenient sampled from the public special schools where their autism spectrum disorder (ASD) children are schooling. Semi-structured interviews were used to gather data, which were then transcribed and subjected to thematic analysis.

Results: Positive emotion-focused strategies include positive reappraisal, reframing and acceptance. Negative emotion-focused strategies include denial, emotional release, cognitive distortion, self-isolation, overprotection, negative self-talk, punishment and religion. Problem-focused coping strategies include active and adaptive coping, peer group, professional support and social support.

Conclusion: The coping methods that have been identified can be integrated into intervention programmes and serve as a guide for specialised institutions that offer more extensive knowledge and assistance to families who are caring for children with ASD.

Contribution: The study contributes to understanding the emotion- and problem-focused strategies adopted by rural caregivers in managing their emotions, interpretation of the situation and adjusting to the demands of raising an autistic child.

Background: The epidemiology of cerebral palsy (CP) is poorly described in Ghana. These data are crucial for evidence-based intervention for children with CP in the country.

Objectives: We aimed to describe the epidemiology of CP among children in Ghana.

Method: We established the first institution-based register of children with CP in Ghana (Ghana CP Register-GCPR). Children with confirmed CP aged < 18 years were registered following a detailed neurodevelopmental assessment. Socio-demographics, risk factors, predominant motor type and topography, gross motor function classification system (GMFCS), associated impairments, education and rehabilitation status were documented.

Results: Between October 2018 and February 2020, 455 children were registered (mean [standard deviation {s.d.}] age at assessment: 5.9 [4.1] years). Preterm birth and low birthweight were reported in 52.0% and 21.1% children respectively. Most children (79.6%) had a pre- or perinatally acquired CP and the mean (s.d.) age of CP diagnosis was 22.2 (21.6) months. Overall, 55.9% of children had spastic tri- or quadriplegia, 60.5% had GMFCS level III-V and 70.3% had ≥ 1 associated impairment. However, 20.5% had never received rehabilitation services and 69.6% of school-aged children in the GCPR were not enrolled in schools.

Conclusion: The study findings indicate a high burden of severe motor and associated impairment among children with CP in Ghana which highlights the need for tailored interventions to improve health and well-being of children with CP in the country.

Contribution: The study highlights the need for interventions to improve functional outcome, health and well-being of children with CP in Ghana.

Background: Post-apartheid, the education system shifted its focus from a segregated education system to an inclusive education system, which resulted in greater consideration of the role and function of special needs schools. In 2014 the National Department of Basic Education developed and implemented an inclusive approach and policies to provide guidelines on the running of special needs schools (SNS). The study was conducted in six SNS in Ekurhuleni South District, South Africa.

Objectives: The study explored the experiences of teachers and healthcare workers when implementing policies in SNS in the study area.

Method: This exploratory qualitative study used purposive sampling to select 13 teachers and healthcare workers for in-depth interviews. Collected data were analysed using inductive thematic analysis and ATLAS-ti version 23.

Results: Teachers and healthcare workers had different working experiences and understandings about inclusive education and policies, as well as their role in implementing these policies. Experienced challenges included lack of training, limited resources, lack of parental support, issues with differentiated curriculum, an unacceptable teaching environment; and poor referral systems. These challenges evoked strategies such as improvising, collaborating, and referring. Participants indicated that they required further training, resources, and support to successfully implement inclusive policies.

Conclusion: Both teachers and healthcare workers agreed that resources were lacking at all SNS represented. Staff training was urgently needed as the current curricula at SNS were differentiated for learners with physical and intellectual disabilities.

Contribution: Findings may inform policy implementation and change in SNS.

Background: A pre-conference workshop that investigated the experiences and needs of PhD candidates and early career researchers in disability studies in Africa was held as part of the proceedings of the African Network for Evidence to Action in Disability (AfriNEAD) 7th Conference in November 2023.

Objectives: To determine how the existing structures in AfriINEAD can be leveraged to support emerging African disability researchers. This article documents this event and summarises the key findings from the discussions that took place.

Method: The workshop included presentations from leading scholars in health professions education, panel discussions with PhD candidates and early career researchers, and small group discussions on what is needed to support emerging researchers.

Results: Disability studies was positioned by participants as not only an academic exercise but also a deeply personal pursuit, requiring introspection and conscientisation, with which they felt they needed support. There are also specific ethical concerns related to doing research work with persons with disabilities, which need to be prioritised in postgraduate education in disability studies. The needs identified by participants are summarised as: (1) mentorship, (2) networking, and (3) funding.

Conclusion: We suggest that the development of African disability scholars and scholarship requires an African ethical approach, which prioritises humanity, community and reciprocity.

Contribution: African disability studies scholars are well-placed to disrupt ableism in academic, medical and social spheres, as well as hierarchies within academia, which limit development, mutual growth and respect.

Background: Healthcare transition (HCT), the process of transitioning an adolescent from paediatric- to adult-oriented care, is vital for improving the long-term health of adolescents with chronic conditions. The role of occupational therapy in HCT has not been well-researched. Effective HCT practices are necessary to ensure that adolescents have access to coordinated, optimal and uninterrupted occupational therapy services throughout this period of development.

Objectives: This study describes occupational therapists' self-perceived knowledge of HCT within the context of South African public health facilities, the HCT practices used, and the factors that promote or hinder the success of HCT within this context.

Method: The study utilised a quantitative, non-experimental and descriptive cross-sectional design. Simple convenience and snowball sampling were used to recruit participants via professional databases and social media forums. An online survey was used to collect data. Descriptive statistics and simple content analysis were used to analyse the information.

Results: This study identifies limitations in the knowledge and practical implementation of HCT within South African occupational therapy practice. Healthcare transition is characterised by inadequate use of policies, insufficient transition preparation and poor outcome measurements.

Conclusion: There is a need for the development of training programmes and practice guidelines to optimise and support HCT implementation within South African occupational therapy practice.

Contribution: This study provides novel data on HCT practices utilised by occupational therapists in South African public health facilities. This study has potential use for the development of effective HCT programmes that can improve the functional outcomes of South African adolescents.

Background: Even though adults with foetal alcohol spectrum disorder (FASD) are at risk of negative life outcomes, there is no published evidence of this in South Africa, which has the highest estimated FASD prevalence rate globally.

Objectives: The purpose of the study was to describe and compare the life outcomes of adults with FASD and adults without FASD in a South African rural community, 16 years after diagnosis.

Method: Participants were examined and interviewed regarding their biographical information, knowledge of FASD, information on their family, relationships, home circumstances, education, work and medical history.

Results: Adults with FASD were less likely to be in a relationship and more likely to have poor educational outcomes and to be exposed to violence as victim or perpetrator than their peers who did not have FASD. None of the participants with FASD completed secondary school successfully. No differences were found for independent living, employment, health, substance use and legal outcomes, between the foetal alcohol syndrome (FAS) or partial foetal alcohol syndrome (PFAS) and control group.

Conclusion: While significant differences existed in certain aspects, differences are not as stark as one would expect between individuals with FASD and controls.

Contribution: This study highlights the importance of considering the social context in which a FASD diagnosis is made. The comparative negative impact of an FASD diagnosis and the associated challenges on life outcomes may be less pronounced in rural communities where everyone has fewer opportunities and resources. This can also make the unique needs of persons with disabilities less visible.

Background: Despite the widespread prevalence of spina bifida and its impact on individual learners, there is limited information on how infection control is managed in the school environment.

Objective: This scoping review was conducted to map the evidence on infection control programmes at schools for learners with spina bifida (LSB) globally.

Methods: This review followed the Joanna Briggs Institute methodology for the scoping review. A database search was conducted on an internet browser search on MEDLINE, PUBMED, EBSCOhost, Google Scholar, ERIC and Google search engines.

Results: A total of five articles met the inclusion criteria. Most of the schools in the study did not have special facilities or running water to accommodate basic infection control procedures.

Conclusion: Collaboration between policymakers, specialists of spina bifida and infection control in the health sector, the Association of Spina Bifida, specialists in spina bifida under the Department of Education and researchers is needed to improve the lives of LSB through infection control.

Contribution: The study will contribute to the improvement of training of staff working with LSB and the need for more research.

Background: Limited knowledge on nutritional epidemiology in Ghanaian children with Cerebral Palsy (CP) necessitates a comprehensive investigation for an improved understanding of malnutrition in this population.

Objectives: We aimed to describe the epidemiology of malnutrition among children with CP in Ghana.

Methods: The study used data collected as part of the Ghana CP Register (GCPR). The GCPR is an institution-based surveillance of children with CP aged < 18 years in Ghana. Between October 2018 and April 2020, N = 455 children with CP were registered. Data were collected on (i) weight, length or height, mid-upper-arm-circumference of children with CP; (ii) socio-demographic characteristics; (iii) motor type and topography, gross motor function classification system level (GMFCS); (iv) associated impairments; (v) educational and rehabilitation status for each child. Descriptive and bivariate analyses were performed.

Results: Mean and standard deviation age of the registered children at assessment was 5.9 ± 4.1 years, and 42.1% were female. Two-thirds of the children had ≥ one form of undernutrition (underweight or severely underweight: 38.9%, stunted or severely stunted: 51.2%, thin or severely thin: 23.8%). In the adjusted analysis, low maternal education, GMFCS-IV, speech impairment and epilepsy significantly increased the odds of undernutrition among participating children (aOR: 2.6 [95% CI:1.3-5.4]; 2.2 [95% CI:1.0-4.8]; 2.0 [95% CI:1.1-3.6]; 2.9 [95% CI:1.1-7.5] respectively).

Conclusions: The high malnutrition rate indicates an urgent need for nutrition interventions and translational research to improve nutritional status and prevent adverse outcomes among children with CP in Ghana.

Contribution: Our study contributes important data and a framework to develop guidelines and evidence-based interventions for children with CP in Ghana.