Development of the national priority assistive product list in Malawi.

PURPOSE: In 2016 WHO launched the priority assistive products list (APL) consisting of 50 products and recommended that using this as a reference, countries should develop their own contextually relevant national APLs. This paper describes the development of Malawi's APL. METHODS: Two hundred and ninety-six persons with disabilities participated in a rapid Assistive Technology Assessment (rATA) survey. Six focus group discussions (FGDs) with people with various types of disabilities were conducted. The rATA questionnaire and FGDs collected data on assistive products (APs) participants used, APs they needed and the challenges they experienced. Data collection was done in six districts spread across the three regions in Malawi. All age groups were included in the survey. Persons with disabilities aged less than 18 participated but went with their guardians. All persons who participated in this study provided consent. Survey and FGDs results were presented at an APL consensus meeting with policymakers, service providers, disabled peoples' organizations and development partners in the disability sector. Based on the results and further discussions, a consensus was reached on the priority APs for Malawi. RESULTS: More than a third of respondents used wheelchairs (32%), followed by auxiliary crutches (25%), walking sticks (13%), reading glasses (11%), prosthesis (10%), elbow crutches (9%) and orthosis (8%). There is also a high demand for products such as pull-up underwear (incontinence products) (79%), hearing aids (70%), reading glasses (59%) and diapers (63%). After intensive discussions during a consensus meeting, an agreement was reached on the 22 priority APs for Malawi. CONCLUSION: There is a wide range of APs being used by people with different functional limitations in Malawi. There is also a demand for APs that are not readily available. When developing an APL, the list should include products in use, those in demand, and those recommended by service providers.Implications for rehabilitationFollowing the development of the priority assistive products list (APL) by WHO, member states should develop their own contextually based APL.The development of the APL should be based on research evidence.All key stakeholders including persons with disabilities and other functional limitations, government, and development partners should participate in this process.The APL should be part of the national health system or community services.The Department of Disability and Elderly Affairs in the Ministry of Gender, Community Development, being the Government of Malawi line ministry coordinating disability issues participated actively in this study including inviting participants in the stakeholders' validation workshop.

"We can't handle things we don't know about": perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors.

BACKGROUND: We sought to identify perceptions of neurorehabilitation challenges for paediatric cerebral malaria (CM) survivors post-hospital discharge at Queen Elizabeth Central Hospital (QECH) in Blantyre, Malawi. METHODS: An exploratory approach was used to qualitatively investigate the perceived neurorehabilitation challenges for paediatric CM survivors. Data were collected through semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs). Eighteen data-gathering sessions were conducted with 38 total participants, including 3 FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and 4 IDIs with community-based rehabilitation workers (CRWs). RESULTS: FGDs revealed that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Post-CM children and families experience substantial stigma and sociocultural barriers to integrating into their community and accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, is extremely limited. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable. CONCLUSIONS: There is an urgent need to establish further training of rehabilitation personnel at all levels and to build accessible rehabilitation infrastructure in Malawi for post-CM patients. Additional work is required to expand this study across multiple regions for a holistic understanding of neurorehabilitation needs.

"It means you are grounded" - caregivers' perspectives on the rehabilitation of children with neurodisability in Malawi.

PURPOSE: Rates of childhood disability are estimated to be high in African settings; however, services to provide information and support are limited. This study aims to explore perspectives and experiences of caregivers of children with disabilities (CWD) from acquired brain injury to inform the development of training packages for health-workers (HW) in hospital settings. METHODS: The study was conducted in a tertiary hospital using qualitative methods. Fourteen in-depth interviews (IDIs) were conducted with parents/carers (PC), and 10 IDIs and 4 focus-group discussions (FGDs) with HW. Data were audio-recorded, transcribed, translated and analysed using thematic approaches. RESULTS: HWs and PCs held varying perspectives on aetiology and prognosis for CWD. HWs raised concerns about impact on families, risks of neglect and abuse. Barriers to care and support included prioritisation of acute illness, lack of HW knowledge and confidence, stigma, poor communication, focus on physical disability, and poor availability of services. Among ideas for improvement, good communication and counselling was seen as a priority but not often achieved. CONCLUSION: A range of family, health service and wider contextual factors affect care for CWD. Training for HW should emphasise disability rights, access to services, a range of disabilities and specific training on counselling. IMPLICATIONS FOR REHABILITATION: To create good training programmes for workers who manage children with neurodisability, workers' views on their training needs, as well parents' views of what feel they need to know most, must be taken into account. The need for training regarding communication skills is a priority for health-workers (HW), who manage children with neurodisability in Malawi and confidence in this area is likely to be vital in providing support for these families. Disability rights and inclusion should be imperative in any training programme for managing children with neurodisability in hospital settings. Even in low-resource settings such as Malawi, it is vital that the links between hospital management and the limited resources in the community are updated and maintained.