African Journal of Disability最新文献

Background: Limb loss limits functioning and restricts participation in various environments. Persons with lower limb amputations (PLLA) experience challenges ranging from self-care and independence to psychological disorders that negatively impact their functioning.

Objectives: To assess the functioning and the level of disability of PLLA with or without prostheses in Rwanda.

Method: A descriptive, cross-sectional study was conducted among PLLAs aged 18 years and above in 10 districts of Rwanda. A total of 247 participants were purposively selected to fill the questionnaires. Descriptive and inferential statistics using t-test and binary logistic regression were performed to analyse data using Statistical Package for Social Sciences (SPSS) (version 21.0).

Results: Out of 247 PLLA, 99 (40.1%) had prostheses and remaining 148 (59.9%) did not. Majority of PLLA without prostheses reported having more difficulties in mobility (s.d. 3.98), participation (s.d. 5.18) and life activities (s.d. 3.87). The majority of PLLA reported mild and moderate functioning in the domains of cognitive (odds ratio [OR] 8.842, 5.384 with 95% confidence interval [CI]) mobility (OR 16.154, 2.485 with 95% CI) and participation (OR 13.299, 15.282 with 95% CI).

Conclusion: Persons without prostheses demonstrated reduced level of functioning and high levels of disability compared to those with prostheses in all domains. However, the mobility, self-activities and the participation domains were the mainly affected.

Contribution: The study helps to understand the needs of the PLLA and emphasises that not only having prostheses can improve functioning but also emphasises the psychosocial aspects to reduce disability.

Background: In the Western Cape, South Africa, a significant number of individuals with intellectual disabilities are cared for by caregivers who receive little or no compensation, education or support. Despite the unique challenges faced by these caregivers, no psychoeducational programmes have been implemented for this particular population.

Objectives: The study aimed to examine the factors contributing to caregiver distress and develop a solution in the form of a psychoeducational programme for caregivers.

Methods: A mixed-methods research approach was employed. The qualitative phase involved exploratory research to gather fundamental information and gain new insights into caregiver distress. The quantitative phase utilised a 'one-group pre-test, post-test design' with a Likert-scale questionnaire to enable meaningful interpretations and comparisons of the psychoeducational programme's impact and value. The paired t-test was employed to determine significant differences between pre-test and post-test results.

Results: The statistical findings demonstrated a significant increase in knowledge, with 99% of respondents indicating a positive impact in reducing caregiver distress and 85% feeling better equipped to care for individuals with intellectual disabilities.

Conclusion: The psychoeducational programme developed in this study had a positive effect on reducing caregiver distress.

Contribution: This knowledge provides valuable insights for healthcare professionals in designing relevant intervention programmes, offering support and providing resources not only for individuals with intellectual disabilities but also for their caregivers.

Background: Family caregiver training is an integral part of stroke rehabilitation programmes and is associated with improved caregiver and stroke survivor outcomes. In the Cape Winelands District, a low-resourced rural community-based setting in South Africa, stroke survivors and family caregivers mostly rely on assistance from community health workers (CHWs), despite their lack of stroke-specific rehabilitation training.

Objectives: To evaluate the implementation and immediate effects of a bespoke, 16 session, 21 h stroke rehabilitation training programme for CHWs to better support family caregivers.

Methods: Two cooperative inquiry groups participated in participatory action research to design and develop the programme. This article reports on the implementation of this programme. Inquiry group members directly observed the training, obtained written and verbal feedback, interviewed CHWs and observed them in the community. Consensus on their learning was achieved after reflection on their experience and observations.

Results: Learning of the cooperative inquiry groups was categorised into the effect on community-based care, the training programme's design and development, how training was delivered and implications for service delivery. Community health workers empowered caregivers and stroke survivors and enabled access to care, continuity, coordination and person-centredness. The need for experiential learning and a spiral curriculum was confirmed. Therapists needed a different set of skills to deliver training. A systems approach and effective leadership were needed to enable community health workers to use their new skills.

Conclusion: The stroke rehabilitation training programme demonstrated potential for integration into service delivery and equipping CHWs to support family caregivers and stroke survivors. Further evaluation of the programme's effectiveness and scale-up is needed.

Contribution: Evidence of an intervention to train CHWs to support stroke survivors and family caregivers.

Background: People with disabilities in sheltered workshops are disempowered and face many barriers, adversely affecting their income-generating activities and weakening their competitiveness in the labour market. There is limited evidence on how to overcome these barriers.

Objectives: This paper seeks to propose a framework to overcome the barriers experienced by people with disabilities participating in income-generating activities in a sheltered workshop.

Method: The qualitative exploratory single case study was done with observations and semi-structured interviews as data collection methods. Purposive sampling was used to select 24 participants between ages 22 and 52 years, and content analysis was done of transcribed interviews. Community-based rehabilitation (CBR) guidelines were used to develop the framework.

Results: A proposed framework was developed that outlined intervention strategies to address the barriers experienced by sheltered workshop participants to promote increased participation of people with disabilities in income-generation activities, thereby improving their quality of life.

Conclusion: The participation of people with disabilities in income-generating activities is hindered by several barriers. However, the proposed framework overcomes the barriers to effective participation in income-generating activities.

Contribution: People with disabilities will benefit from this framework as it will address their challenges and needs for empowerment. It would also inform stakeholders involved about these challenges and strategies.

Background: Caregivers are under enormous pressure in trying to provide for the needs of their children with disabilities in South Africa. The care dependency grant (CDG), an unconditional cash transfer, is the primary state-subsidised intervention for the social protection of low-income caregivers of children with disabilities.

Objectives: The primary objective of this substudy, within a larger multistakeholder qualitative project, was to investigate caregiver perspectives on CDG assessment and application, their beliefs about the purpose of the CDG and how they actually used these funds.

Methods: Data for this qualitative research included in-depth individual interviews and one focus group discussion. Six low-income caregivers who were current or previous CDG beneficiaries participated. Deductive thematic analysis was conducted using codes related to the objectives.

Results: Access to the CDG was usually too late and over-complicated. Caregivers were grateful for the CDG but it was insufficient to cover the costs of care, in the context of high unemployment and weaknesses in complementary social services. Pressure on these caregivers was intensified by criticism in their social environments and a lack of respite care.

Conclusion: Caregivers need service providers to be better trained and for systems of referral to available social services to be strengthened. The whole of society ought also to be targeted for increased social inclusion facilitated by improvements in understandings of the lived experience and cost of disability.

Contribution: The rapid time from data collection to write-up of this study will aid in building the evidence base on the CDG, an urgent priority for South Africa's journey towards comprehensive social protection.

Background: Family quality of life (FQOL) is an important outcome for families of children with disabilities globally and provision of support is associated with enhanced FQOL. However, FQOL research primarily focuses on conceptualisation and measurement, and originates from high-income contexts despite the fact that most children with disabilities live in low-income countries.

Objectives: The authors examined how Ethiopian disability support providers practically contribute to meeting the needs of families of children with disabilities to enhance FQOL.

Method: Building on a previous study exploring Ethiopian families' perspectives on FQOL, the authors used an exploratory descriptive qualitative approach to interview various support providers. Interviews were conducted virtually (because of the coronavirus disease 2019 [COVID-19] pandemic) in English or with interpreting assistance. Audio-recorded interviews were transcribed verbatim and analysed thematically.

Results: Support providers affirmed what families had described as important for FQOL - spirituality, relationships, self-sufficiency - and recognised their enormous support needs. They described various ways to support families - emotionally, physically, materially and informationally. They also expressed challenges and their need for support to meet families' needs.

Conclusion: Ethiopian families of children with disabilities need holistic support that incorporates spirituality, the whole family's needs and disability awareness-raising. Collaborative and committed engagement from all stakeholders is necessary to support Ethiopian families to flourish.

Contribution: This study contributes to global understandings of FQOL and describes practical approaches to support families of children with disabilities in an African context. The findings of this study highlight the influence of spirituality, relationships, self-sufficiency, poverty and stigma and the need for holistic support and disability awareness-raising to enhance FQOL.

Background: Obuntu bulamu, a peer-to-peer support intervention for children, parents and teachers to improve the participation and inclusion of children with disabilities (CwD), was developed and tested in Uganda. The intervention consisted of disability-inclusive peer-to-peer training and support activities. In this article, parent participation in and evaluation of the intervention are discussed.

Objectives: The study aims to evaluate the acceptability and feasibility of the intervention.

Methods: A qualitative Afrocentric intervention study was implemented in 10 schools in Wakiso district in Central Uganda. Researchers purposely selected CwD aged 8-14 years, their peers and parents from 10 primary schools with on average three CwD per school. A total of 64 study parents (33 parents of CwD and 31 peers) were interviewed at baseline and endline. Two focus group discussions were held with 14 parents at midline. Parents also participated in a consultative meeting about the intervention design at baseline and two evaluation and feedback workshops at midline and endline. Thematic data analysis was conducted.

Results: Findings showed that parents found the intervention inspiring, acceptable, culturally appropriate and supportive, as it built on values and practices from their own cultural tradition. Parents reported that the intervention enhanced a sense of togetherness and belonging and helped them to develop more positive attitudes towards CwD and disability inclusion. They felt the intervention increased participation and inclusion of CwD at home, school and in communities.

Conclusion: The Obuntu bulamu peer-to-peer support intervention is an acceptable, culturally appropriate intervention with the potential to improve inclusion of CwD. Further studies are recommended to measure the effectiveness of the intervention.

Contribution: The paper contributes to existing evidence that there is need for more Afrocentric interventions, which built on cultural values and practices. Interventions based on indigenous values have a greater potential to be acceptable, can foster integration and are likely to be more sustainability to achieve disability inclusion. In the article we describe parental perspectives of the Obuntu bulamu intervention, an intervention to improve inclusion of children with disabilities, which was designed by children, parents, teachers, educationalists, and academics from Uganda.

Background: Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa.

Objectives: To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg.

Methods: Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach.

Results: Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another.

Conclusion: Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input.

Contribution: This article has provided greater insight into TPD in caregivers of adult patients with dysphagia in an urban African context. It has led to new information that can be used as an adjunct to the ICF model when understanding this phenomenon.