Neurological sequelae following paediatric CM are a major public health problem in malaria endemic regions. When compared with healthy controls, paediatric CM survivors have a sixty-fold increase of adverse neurological outcomes, including neurodisabilities such as motor impairment, epilepsy, and neurobehavioral sequelae.(5, 8) Over one-third of paediatric CM survivors will develop sequelae; thus, the burden of CM extends beyond mortality to lifetime morbidity.(28) In resource-limited settings, neurodisability results in a substantial burden of disease that impacts the child, family, and community.(29) Consequently, there is a critical need for accessible neurorehabilitation services for post-CM children in Malawi.
This study aimed to identify perceived neurorehabilitation challenges for paediatric CM survivors post-hospital discharge from a specialised unit at QECH in Blantyre, Malawi. We have demonstrated that caregivers lack important knowledge about CM and fear recurrence of CM in their children. Children and families experience substantial stigma and sociocultural barriers to accessing neurorehabilitative care. At a community-level, rehabilitation infrastructure, including trained staff, equipment, and programmes, are extremely limited due to lack of funding. Rehabilitation services are inequitably accessible, and community-based rehabilitation remains largely unavailable.
Education and Knowledge about CM. Previous studies have captured caregivers’ confusion or lack of knowledge regarding their neurodisabled child’s condition and recommended plan of treatment post-discharge.(10, 30) In a past study at QECH, healthcare workers sensed that children could not amply recover until parents understood and accepted their child’s physical disability.(10) Empowering caregivers through increased knowledge and communication about their child’s condition might increase confidence in childcare and help to battle misconceptions and stigma regarding their child.(10, 31)
The lack of knowledge regarding CM may be attributed to a lack of education surrounding the illness. Unfortunately, healthcare workers have described their lack of time or expertise to explain details about the child’s condition to caregivers.(10) Nurses and other healthcare workers are busy and usually underpaid, presenting a quality of care issue that poses a barrier to educating caregivers about their child’s illness. Malawi-based qualitative studies on neurodisability have noted that the focus of clinical staff primarily centres on improving CM survival rates than on the long-term disabling effects of the illness.(7, 10) It must be noted that patient caregiver education is a rights-based issue: in Malawi, it is required by law that the primary caregivers of children be educated about their child’s condition and illness; however, caregiver education is often deprioritised in stretched acute medical services.(32)
Miscommunications among medical team members can be managed by developing a standard of care for all post-CM children (for those with and without neurodisabilities), including standardised protocols and assessment tools, to encourage the systematic management of post-CM children.(10) These tools should be brief and straightforward to not overload healthcare workers. Additionally, training healthcare workers in counselling could help mitigate miscommunication between healthcare workers and caregivers.(10) Caregivers should be educated to recognise neurological sequelae of CM on discharge and be provided with information regarding where and how to get help for their child if such sequelae appear. To adequately educate caregivers, healthcare workers must communicate in accordance with caregiver knowledge, ability, and preferred learning method to adequately empower and inform caregivers.(33) Making these changes will be a challenge, as they require additional time, training, and evaluative measures.
InfrastructureFunding Issues.Healthcare workers in our study discussed the lack of training available to specialise in managing neurodisabilities. Healthcare workers have previously described funding- and opportunity-based barriers to receiving specialised training in paediatric neurodisability; other healthcare workers have suggested that the lack of training is not funding-based but rather due to the lack of motivation and leadership to organise specialised training.(10) Additionally, data from QECH has described healthcare workers as having more knowledge and skills than they realised but lacking the confidence to apply these skills.(10) In resource-limited settings, training staff can be complicated due to inadequate health systems and a lack of specialists; community-based services led by non-specialists may be helpful to increase access to post-CM neurorehabilitation. Caregivers can also be trained to provide basic rehabilitation, such as physiotherapy, at home.
A lack of essential equipment and skilled health personnel increase the existing burden of poverty.(34) Healthcare workers should also be aware of how to maximise the use of limited available resources. Moreover, the timely use of these resources – intense, early management – is critical to ensure prompt intervention when most needed.(10)
Sufficient funding does not often exist to thoroughly address the complexity and cost of most rehabilitation interventions; as such, proposed programs are not built and actualised programs are discontinued. Lacking post-CM rehabilitation infrastructure funding exists in-hospital and out-of-hospital, and there is currently no delineation as to who or what should conjure these funds and have ownership over the issue (e.g. the government). Moreover, it is unclear whether this responsibility is at the level of central or district hospitals or whether it is a community-based issue.
Stigma and Sociocultural Barriers. The more disabled – whether physically or mentally – an individual is, the more disadvantage he/she will experience accessing healthcare, education, communication, housing, and social services.(35) While neurodisability poses a substantial physical impact on children and their families, strong cultural beliefs and stigma attached to disability can greatly influence families by impacting response to impairments and approach to childcare.(7, 35-37) Healthcare workers have raised concerns regarding the general impact of childhood disability on family life, including risks of abuse and neglect of the disabled child.(10) In Uganda and Malawi, nearly all children with disabilities report experiencing violence, most commonly bullying and verbal abuse.(38) Some neurological sequelae, including epilepsy and seizure disorders, may lead to a child or family’s exclusion by their community due to the association of these disorders with witchcraft and demons and misconceptions that these disorders are contagious.(36, 39) Disability stigma can negatively affect a child’s social life and participation in daily activities, and this is amplified among post-CM children with behavioural issues.(7)
In our study, caregivers voiced that the effects of CM on their child have left their family socially isolated; this can lead to feelings of shame and loneliness.(7) Studies on physical disability in Kenya and Malawi have reported that many families experience substantial challenges when caring for children with disabilities, including social exclusion and indignity.(40, 41) The impact of stigma is particularly relevant in the Malawian context, in which the effects of disability extend beyond the individual and affect the immediate and extended family due to a traditionally communal, interdependent culture.(42, 43) One study reported that disabled children are locked in their house to hide from community ridicule or to create time for the parent to take part in other tasks.(7) Children with musculoskeletal disabilities may also be expelled from their house, fall behind in school, or not be included in home or social activities.(40, 44) Consequently, children with neurodisability are at high risk for further health-related issues, poor quality of life, and socioeconomic dependency.(30) Mbale et al. suggested that stigma and discrimination arise from the emotional and social implications of CM on the family and from balancing childcare with the demands of daily life, financial pressures, and child protection.(7)
Some caregivers in our study reported that their post-CM child dropped out from school or were forced to drop out of school by school administrators due to neurological sequelae, including physical disabilities and behavioural issues, that could not be accommodated by the school. Interviewees reported a lack of teachers and programmes to accommodate post-CM children with special needs and a critical need for these services. The need for inclusion and better special needs provision in Malawi has been ratified by the government, and thus, all children should be included in school; however, this law is yet to be materialised.(45)
In-hospital, caregivers may experience stigma from healthcare workers and other families.(10) In addition to rehabilitation staff, it may be useful to have social workers involved in the post-discharge care of paediatric CM survivors to address complex social concerns and any issues regarding neglect or abuse.(10) It must be acknowledged that neurological sequelae-related stigma and discrimination pose a barrier to accessing child protection.(38)
Continuation of Care in the Community. In a previous Malawian qualitative study, mothers reported being seen as primary caregivers with occasional support from their husbands, other family members, and church groups.(10) Caregivers have described the immense stress of caring for children with physical disabilities. Mothers have noted that the care burden is typically placed on their shoulders quite literally, as they must carry around their grown child and are thereby limited in completing daily activities, including household tasks, income-generation, and social engagements.(10, 46) Socioeconomic constraints faced by most families in Malawi leads to the prioritisation of income generation and food security over the close care needed by many post-CM children.(46)
In our study, healthcare workers described the negative effects of caring for a post-CM child alongside lacking social support. Healthcare workers have addressed that mothers can burnout, become depressed, and experience suicidal ideation when caring for children with physical disabilities, which may lead to neglect or abuse of the child.(10, 47, 48) One Malawian study reported marriage breakdowns as a consequence of a child’s CM.(7) In response, caregivers have described the need for peer support groups, and healthcare workers have suggested group counselling for caregivers of children with neurodisabilities.(7, 10) These groups could inform and empower caregivers through providing psychosocial support during follow-up visits or community-based rehabilitation services. Group meetings could provide a space for caregivers to voice positive and negative experiences and construct novel mediums for support at the community level.(49) In resource-limited settings, group-based interventions, such as peer support groups, have demonstrated success.(50)
The challenges of caring for a post-CM child are amplified by the lack of services and policies in Malawi to support these children, particularly children with sequelae that affect the daily life of the child and family. Community health clinics in resource-limited settings have insufficient infrastructure, including equipment, stable and qualified professionals, and medication, to support follow-up care needed by many post-CM children.(34) Several studies have addressed the lack of disability-inclusive planning and inequitable access to accommodations for disabled children.(51-54) Moreover, as described in our study, rehabilitative services – when available – are often centrally-located in urban settings; for families who cannot access or afford transportation and for children with mobility impairments, these services are difficult to impossible to access.(51-53, 55) The inability to access centrally-located services is prevalent in Malawi, where approximately 85% of the population live in rural areas.(56) Approximately two-thirds of the Malawian population lives in poverty, and rural families experience the highest levels of poverty, worst health outcomes, and most difficulty accessing health services.(57)
Solutions and Suggestions. Community-based rehabilitation may be able to serve as an interim measure to ensure equitable access of neurorehabilitation services. Building of this infrastructure should be led by Malawian experts who are deeply knowledgeable about the communities that these services seek to serve; involving the user and provider in the infrastructure-building process is critical to inform the generation and implementation of these programs in a manner sustainable, effective, and respondent to the local environment.(10) To prioritise the development of community-based programmes, their need must be highlighted on Malawian policy agendas, adequate government funding must be obtained, and national-level committees should be developed to translate policy to programme.(35) Moreover, rehabilitative programmes should be developed in accordance with the United Nations Convention of Rights for Persons with Disabilities and the International Classification of Function, Disability, and Health and should take a biopsychosocial approach to holistically address caregiver and CM survivor needs.(10, 29, 58)
Community-based services should take a multisectoral approach through which male and female caregivers are empowered to care for their post-CM children, family finances are considered, post-CM children can be independent whilst families pursue income-generating activities, caregiver mental health is considered, and the complexities of family and community relationships are addressed.(46) A community-based computerised attention rehabilitation program – as described in Bangirana et al. 2009 – would not be feasible nor sustainable at the community-level due to prohibitive costs, and community-based rehabilitation would be dependent upon trained rehabilitative personnel with sufficient staffing and equipment in each region of Malawi.(12) Instead, community-based rehabilitation teams could provide home-based assessments, such as basic, home-based physiotherapy and occupational therapy, training caregivers in basic physiotherapy techniques that may benefit their child.(10) Successful programs in resource-limited settings have taken a “training-the-trainers” approach, through which caregivers and families are empowered with key skills and knowledge needed to deliver fundamental care to the post-CM child.(59) Programs have also focused on ameliorating family and community stress, promoting healthy coping strategies and providing caregiver support.(59) It must be noted that any large-scale intervention will likely be expensive, require extensive training and capacity-building, and would be a major challenge to implement.
Since there is a wide range of disabling neurological sequelae that post-CM children can develop, CRWs should receive training on basic medical information for children with a large range of disabilities. Services should include two-way dialogue between providers and families regarding the aims of neurorehabilitation and patient outcomes.(60) Lastly, community-based rehabilitation programmes should longitudinally focus on the family and community rather than solely the post-CM child or specific aspect of the child’s disability.(10)
The perceived neurorehabilitation challenges identified by this study may apply to a variety of patients with brain injury, including trauma survivors with residual brain injury and survivors of bacterial or tuberculosis meningitis, viral encephalitis, or birth asphyxia. CM provides an important case study highlighting these general gaps in care in Malawi.
Strengths and Limitations. To our knowledge, this is the first study to qualitatively address the perceived neurorehabilitative challenges of paediatric CM survivors in sub-Saharan Africa, applying perspectives from caregivers and healthcare workers. A methodological strength of this study was gathering the views of a wide range of caregivers, healthcare workers, and rehabilitation specialists. Two qualitative data collection methods – IDIs and FDGs – were employed, which may have improved data triangulation by enabling participants to reflect upon experiences, clarify their ideas, and freely share their thoughts. Male and female caregivers ranged in age and looked after children of different ages with varying severity of post-CM neurological sequelae; caregivers and children lived in rural or urban settings throughout Malawi. We encountered some challenges working in English and Chichewa for qualitative data collection and analysis. We occasionally had difficulty getting points across in Chichewa in IDIs and FGDs, as several English words from the guides had no Chichewa translations. Many interviews took longer than anticipated due to miscommunications and misunderstandings between the interviewer and participant. When the interviewer sensed that the participant’s answer did not correspond to the question asked, the interviewer repeated and retranslated the question, which sometimes resulted the participant becoming frustrated with answering a question repeatedly.
Though a wide variety of caregivers were interviewed and thus a broad range of perspectives was represented, sampling could not capture all perspectives of those who care for paediatric CM patients, and it is challenging to determine selection bias of this group. Since 73.3% (N=11) of interviewed staff worked in-hospital at QECH, selection bias was introduced by how staff were gathered for interviews. Staff were gathered from a limited number of sites in-hospital, which may have limited the diversity of views. Most participants lived in Southern Malawi, which may regionally limit perspectives.
Future Directions and Local Recommendations. To best inform neurorehabilitative programming, ethnographic fieldwork is needed to more deeply understand how children’s post-CM neurological sequelae manifest within the family and community. Research could focus on one aspect of CM neurorehabilitation, such as movement disorders or memory impairment, and delve into precise topics surrounding specific CM outcomes and specific interventions. For example, home-based assessments and interventions, such as safe feeding and basic, home-based physiotherapy performed by caregivers, should be prioritised. According to the WHO Report on Disability, further study is needed to describe barriers faced and unmet needs for neurorehabilitation services.(61) With the findings of this study, we will develop and pilot educational materials for caregivers to increase knowledge regarding CM, neurological sequelae, social implications, and disability rights. We will develop set care guidelines to diminish incidence of miscommunications among medical team members and rehabilitation staff.