African Journal of Disability最新文献

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.

Background: Multiple sclerosis (MS), fatigue is among the leading clinical symptoms. It is one of the most disabling symptoms for most MS people.

Objectives: This research measures the prevalence of fatigue and its impact on the physical, cognitive, and psychosocial abilities of individuals with MS in Morocco.

Method: This cross-sectional and descriptive study included 152 participants. Data were collected via an online survey using the snowball method, incorporating sociodemographic characteristics and the Arabic version of the Modified Fatigue Impact Scale.

Results: According to the results, 89.4% of respondents experienced pathological fatigue, with an average score of 65.52 (± 18.00). There was a significant relationship between pathological fatigue, age (p = 0.0324), and clinical phenotype (p = 0.041). Fatigue negatively impacted participants' physical, cognitive, and psychological capacities, with average scores of 70.38 (± 8.15), 62.28 (± 10.23), and 73.87 (± 1.86), respectively.

Conclusion: The results of our study confirmed a high prevalence of fatigue among people with MS in Morocco. Sustained research in this field remains crucial, as it enables the formulation of strategies aimed at enhancing the quality of life for those impacted by MS.

Contribution: This study is the first in Morocco to examine fatigue prevalence in people with MS and its impact on their physical, cognitive, and psychosocial abilities. High fatigue levels hinder the integration of people with MS into professional and student life. The findings emphasize the need for effective symptom and fatigue management.

Background: Quality maternal health care is central to the Sustainable Development Goals efforts to reduce maternal mortality, yet there remain limited quantitative data on maternal care inequities for women with disabilities in sub-Saharan Africa.

Objectives: This study aims to understand the differences in maternal care providers for women with and without disabilities.

Method: We used Multiple Indicator Cluster Surveys from 13 sub-Saharan African countries conducted between 2017-2020. We used logistic and multinomial logistic regression to examine the relationship between disability (Washington Group definition) and antenatal care attendance and the type of care provider for antenatal care, skilled birth attendance, and postnatal and postpartum checks. All analyses were adjusted for age, wealth, country, and location.

Results: The sample included 10 021 women, including 306 (3.1%) women with disabilities. There were small absolute and no relative differences in antenatal care attendance, qualified antenatal care provider, postnatal, and postpartum checks, for disabled and women without disabilities. Women with disabilities had some evidence of higher odds of having a doctor at their birth compared to women without disabilities (aOR = 1.52, 95% CI: 0.99-2.33).

Conclusion: This study shows small absolute and no relative differences between women with and without disabilities for antenatal access and provider types for maternal care, though these findings are limited by a small sample and no data on care quality, acceptability, or outcomes. More research on care quality and outcomes is needed.

Contribution: This study is the first quantitative, multi-country study in sub-Saharan Africa to examine maternal care seeking patterns, demonstrating important data on maternal health indicators for women with disabilities.

Background: Caregivers of children with cerebral palsy (CP) are critical in the survival and well-being of their children. Despite the caregivers' particularly demanding responsibilities, literature on their experiences is limited.

Objectives: This study explored the caregivers' experiences of providing care to children with CP.

Method: An explorative qualitative study design using semi-structured interviews was employed. All interviews were audio-recorded, transcribed verbatim and analysed guided by Colaizzi's seven-step methodology.

Results: Two themes emerged: the challenges in caregiving and positive experiences of providing care. Caregivers faced financial, psychological, social and physical challenges such as stigmatisation, a lack of work accommodations, time constraints due to demands of providing care, strained family relations, isolation, exclusion, emotional and physical exhaustion in their caregiving role. Despite the challenges, they also had fulfilling, positive experiences. Caregivers became more resilient, some relationships were strengthened and awareness of the CP condition increased over time.

Conclusion: Caring for a child with CP is challenging. Cerebral palsy is a permanent disability; therefore, a holistic, long-term perspective to supporting caregivers is necessary to ensure they can care for their children adequately.

Contribution: There is a need for various support structures for caregivers to lessen the burden of care. It is necessary to establish the relationships between the support structures available and the way that these structures are viewed and consequently utilised by the caregivers. This study highlights the experiences and needs of caregivers to inform stakeholders on intervention strategies.