“We can’t handle things we don’t know about”: perceived neurorehabilitation challenges for Malawian paediatric cerebral malaria survivors

In this observational study, an exploratory approach was used to qualitatively investigate the perceived challenges for paediatric CM survivors [20].

The study population included primary caregivers of CM survivors admitted to the Paediatric Research Ward (PRW) at Queen Elizabeth Central Hospital (QECH). Caregivers were recruited prior to patient discharge from the PRW, at which point their child (the CM patient) was already enrolled in a quantitative sub-study assessing longitudinal neurosequelae and neurorehabilitation needs. At least one-month post-hospital discharge, caregivers returned to the hospital so that patients could undergo routine follow-up assessments. Data from the quantitative sub-study was used to determine which patients exhibited neurosequelae and required neurorehabilitation at the time of follow-up, and caregivers of these patients were invited to an FGD. No patients died at home; thus, no patients were excluded for this reason.

The study population additionally included healthcare workers at QECH (in-hospital rehabilitation officers, clinical officers, nurses, and physicians who specialise in the care of CM patients) and community-based rehabilitation workers (CRWs) (based at non-governmental organisations (NGOs) or community-based organisations (CBOs)) who work directly with children in community-based rehabilitation teams. QECH is an urban tertiary referral centre in Blantyre, Malawi and one of two hospitals in-country with staff and infrastructure to treat children with brain injury and severe neurological issues [10]. The PRW is a specialised unit with well-trained staff and over 30 years of expertise researching and managing high-risk children with CM.

We employed a non-probability purposive sampling technique such that selected participants fit study inclusion criteria (Table 1) [21, 22]. Participants were excluded if they did not fit the criteria specified in Table 1. Sample size was determined by theoretical saturation [23].

Data were collected using semi-structured in-depth interviews (IDIs) and focus group discussions (FGDs) [24, 25]. Healthcare workers and CRWs completed IDIs, which explored individual perceptions and experiences of caring for post-CM children, access to rehabilitative services, and existing gaps in infrastructure to care for post-CM children, which enabled free and insightful pursuit of ideas by participants [20]. Caregivers were placed in FGDs, which allowed sharing of personal experiences and perceptions of caring for post-CM children and existing rehabilitation support. We piloted and employed semi-structured guides for the IDIs and FGDs (Appendix). Prior to conducting IDIs and FDGs, interviewers and translators were familiarised with the semi-structured guide. Semi-structured guide piloting was informed by a grounded theory approach, and guides were reviewed and modified through an iterative process as IDIs and FDGs were carried out and new themes emerged. IDIs were conducted in English or the vernacular language, Chichewa, and FGDs were conducted in Chichewa by a male Malawian social scientist (SM).

We completed 18 data-gathering sessions with 38 total participants, including three FGDs with 23 primary caregivers, 11 IDIs with healthcare workers at QECH, and four IDIs with CRWs (Tables 2 and 3). CRWs were identified through the Malawi Council for the Handicapped and were not employed by the Malawian government nor through research projects at QECH. Each FGD comprised of both males and females; 22 primary caregivers were the parents of CM survivors and one caregiver was an elder sister.

IDIs and FGDs were audio recorded and later transcribed verbatim. Interviews completed in Chichewa were transcribed in Chichewa and subsequently translated to English. All transcripts were assessed for quality before analysis. A qualitative researcher (TV) and research assistant (AB) independently conducted manual thematic content analysis on the transcripts [26]. In our approach, we acknowledged that all information provided was the subjective experience of those interviewed and may have been influenced by the researchers. We conducted a de novo line-by-line analysis of each transcript and inductively identified main concepts arising from transcript sections. Next, we highlighted and provided an idea for a code or important defining category for each concept. The team coded 18 transcripts separately and then reviewed the codes before creating a final list of codes for analysis.

We maintained a reflective practice and applied methods triangulation by using both IDIs and FGDs during data collection. We also used data-source triangulation by gathering perspectives from multiple sources, including caregivers, in-hospital healthcare workers, and CRWs [27]. Methods triangulation was applied in analysis [27]. We employed peer-debriefing through continuous discussion regarding any issues with data collection, data analysis, and finding documentation.

Ethics approvals were granted by the Institutional Review Board of Columbia University Irving Medical Center (New York, New York, United States) and Ethics Committees of University of Malawi College of Medicine (Blantyre, Malawi) and University of the Western Cape (Bellville, South Africa). Informed consent was obtained from all enrolled caregivers and healthcare workers. Caregivers were consented on the PRW before their child’s discharge once CM was no longer acute. For caregivers, recruiters explained that participation would not impact the care of their child; for healthcare workers, recruiters explained that participation would not affect their employment. All IDIs and FGDs took place in a private room to maintain participant privacy. Hard-copy data were stored in a secure, locked room to maintain participant confidentiality, and digital data were stored as encrypted files on a password-protected computer. Audio files and transcripts were de-identified.

Caregivers lack important information about the risk factors, symptoms, prevention of CM and its complications, and post-CM care practices. In-hospital healthcare workers reported that caregivers are often discharged with little information about their child’s illness, including its cause and long-term effects, and caregivers of physically disabled children discussed that they do not know how to support their children at home. Some caregivers, however, did describe parenting changes following their child’s discharge from the hospital. These changes included engaging the child in household chores, speaking to or calling a child who cannot talk or hear, engaging the child in light physical exercise, using a torch to determine whether the child can see, and cooking balanced meals. Many caregivers also started to use bed nets in their children’s rooms to prevent malaria. Caregivers stated that these changes were largely guided by advice they received at discharge from their child’s clinical care team.

Healthcare providers described situations and concerns regarding a lack of communication between the medical team and rehabilitation staff regarding patient discharge procedures, post-discharge neurorehabilitation, and medical advice. The absence of standardised discharge and follow-up plans for CM patients has resulted in miscommunications between the medical team and patients’ families. One rehabilitation officer suggested that a standardised discharge plan would enable caregivers to be better educated about the effects of CM on their children. Further, a nurse suggested that CM education take place in the community rather than in-hospital, urging that the government assist by educating community health workers about CM so that community health workers can transfer knowledge to caregivers. It is important to note that some in-hospital healthcare workers and CRWs reported to have given detailed advice to caregivers of CM survivors regarding childcare post-hospital discharge. Caregivers acknowledged receipt of this advice while at the hospital and described that they have faith and trust in the medical providers treating their children at the hospital.

Caregivers remained fearful of the recurrence of CM in their children and how they would care for their child if he/she fell sick again. Additionally, caregivers expressed worry that their child would never fully recover to how he/she was before falling ill with CM.

There is a lack of funding to administer free medical equipment, including cerebral palsy (CP) chairs and wheelchairs, to patients in need of it for daily use. For healthcare staff, limited training exists to specialise in rehabilitation, particularly neurorehabilitation, and there are limited opportunities for work due to a dearth of rehabilitation service infrastructure. This has resulted in a lack of expertise to deal with behaviour-related sequelae, as available programmes primarily focus on physical impairments. The lack of rehabilitation staff creates a barrier to provide adequate care for CM survivors with neurological sequelae, and the barrier to access rehabilitative care becomes particularly prominent in communities outside the city centre lacking CRWs. Caregivers expressed difficulty in accessing services centralised in the city due to inability to fund transport to the city hospital. There were previously three organisations in Blantyre City providing small-scale community-based rehabilitation services, all of which were discontinued due to lack of funding.

The lack of community-based rehabilitation was the strongest theme that emerged from participants. Caregivers noted that they do not know of any CBOs providing education and support for families with post-CM children and stated that these organisations should exist. CRWs described a lack of follow-up within the home and community, stressing the importance of community-based therapy. Care does not often continue in the community following hospital discharge, which poses as a barrier to patient recovery. Lack of access to or funding for transportation prevents patients from receiving follow-up care, including attaining neurorehabilitation services, outside of their community. A rehabilitation officer noted, “the mothers couldn’t turn up because of issues of transport” (Rehabilitation Officer 2). Many families, especially those living in rural settings, face long distances to health facilities, and unfavourable modes of transportation for physically disabled children. Healthcare workers elaborated that, with lacking social support and difficulties accessing existing follow-up care, caregivers can easily become overwhelmed with taking care of their post-CM child. Clinical officers described that the community, including village chiefs, plays a supportive role in patient recovery: “there is an impact indeed through involving the chiefs because they have so much power to control the people in the community” (Clinical Officer 3). Unfortunately, some caregiver experiences were contradictory and emphasised a lack of support in the community. This lack of community-based support extends to the school-setting, where there are no teachers nor programmes available to accommodate post-CM children with special needs. Rehabilitation officers suggested providing special education either within an integrated school or in a separate school for post-CM children: “I would wish to know if there could be a special school where these children could go” (Rehabilitation Officer 2).

Most participants perceived community-based rehabilitation as a critical component in caring for children who have survived CM and subsequently developed neurodisabilities. Providing incentives to caregivers in the form of food vouchers or transport funding may be efficacious to improve follow-up appointment adherence, especially in instances where attending care in the community is not feasible. Alternatively, some nurses suggested developing community-based palliative care infrastructure for CM patients. Providing a palliative care team with cars to travel to villages for care provision and assessment may mitigate current challenges to providing patients with transportation funds to return to the hospital. Healthcare workers were adamant that more experts be trained in neurodisability management to increase the available labour force when scaling up infrastructure of community-based rehabilitation services. Most urgently, there is a need to gather epidemiological data on neurological disability following CM to inform the building of rehabilitation infrastructure in Malawi and emphasise the breadth of this public health problem.

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.

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.

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].

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].

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.

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.

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.