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Table 5 Themes, description, and supporting quotes

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

Theme Description Supporting Quotes
(1) Gaps in Caregiver Education and Knowledge about CM 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. Caregivers of physically disabled children discussed that they do not know how to support their children at home. “We do not give much information to these guardians. Many guardians would like to know maybe the cause of the condition, what would happen afterward; would there be a chance where the patient will be normal again or not? And if not, if the patient will not be back to normal, what support can they give? I think we need to give the guardian enough information on that issue.” (Clinical Officer 2)
“It is important that we are trained in skills on how to take care of the children at home. In short, we should be trained on how to assist the children so that they can be independent.” (Caregiver FGD 1)
The absence of standardised discharge and follow-up plans for CM patients has resulted in miscommunications between the medical team and patients’ families. A standardised discharge plan might enable caregivers to be better educated about the effects of CM on their children. “The communication between the medical team and the rehabilitation team – like we said sometimes they discharge patients without our knowledge, if we communicated well we would have a chance to teach the mother and do enough physio with the child so they are discharged while they are doing well.” (Rehabilitation Officer 1)
“There is no standard care, there are no educational materials that are given to them. It is not in standard of care to give educational material to read about what to do if XYZ [neurological sequelae] develop.” (Rehabilitation Officer 2)
CM education could take place in the community rather than in-hospital; the government could assist by educating community health workers about CM so that community health workers can transfer knowledge to caregivers. “If the government can educate their health workers about the complications and just have them tell the caregiver what they will need to do to help their child, that will also help because those children are dying, and the caregivers don’t know what to do with them.” (Nurse 1)
Some in-hospital healthcare workers and CRWs reported to have given detailed advice to caregivers of CM survivors regarding childcare post-hospital discharge. “The moment we have started rehab in the hospital with that child, automatically we start preparing that mother for discharge, so whatever we do we tell them that you must continue to do this at home when you get discharged.” (Rehabilitation Officer 1)
“We talk to mother advise them that maybe this child might not be himself or herself again or the way they were before, they might not behave like normal kids because of the effect that malaria has had on their brain, so we do encourage mothers that they should understand and love the kid the way they are.” (Clinical Officer 2)
Caregivers acknowledged receipt of advice (regarding childcare post-hospital discharge) while at the hospital, described parenting changes that arose as a result of this advice, and described that they have faith and trust in the medical providers treating their children at the hospital. “When I’m doing the household chores, I try to engage my child in some of them. For instance, I tell her to boil water for her bath. Furthermore, I help her with her homework. Sometimes, she forgets to do her homework, so I have to remind her. In addition, she loses her coordination, so I engage her in light exercises, such as running.” (Caregiver FGD 1)
“When the child is getting discharged in the hospital, we get relieved of some of the worries because of the pieces of advice given to us by the doctors on how to take care of the child. We trust the judgment made by the hospital personnel and we are always told to be free to return if the child falls sick again.” (Caregiver FGD 2)
“I was advised to let the child play with friends who are not violent and to let her to do simple household chores such as washing plates. I was also told to buy her toys to play with. I could see that the strategy was working after washing two plates, she could ask for more. That gave me hope that the child was recovering.” (Caregiver FGD 2)
(2) Caregiver Fear of CM Recurrence Caregivers expressed worry that their child would never fully recover to how he/she was before falling ill with CM. “I’m still afraid what the future holds for this child because of the cerebral malaria she suffered from. I still get worried because whenever she has fever.” (Caregiver FGD 2)
“My greatest concern was whether she would get well ever again. I didn’t know that she would be able to crawl and play with her friends[…]she has not yet been enrolled in school because there are so many things that she can’t do by herself.”(Caregiver FGD 3)
(3) Inability to Fund Rehabilitative Infrastructure 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. “[…]children with physical disabilities need assistive devices, at first we had some funding to buy assistive device that we were providing such as wheel chairs and corner CP chairs but we no longer have such funding.” (Rehabilitation Officer 1)
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. “It’s very hard especially like here in Malawi; you cannot get anywhere. You cannot get that training unless you go outside the country. The expert I was working with was trained in Canada.” (CRW 1)
“Physical disabilities have got experts on how to tackle with them. Behaviour problems are different altogether[…]When a child is taken to hospital, often clinician will brush them off saying you know what, just discipline your child, but the problem may not be a simple discipline problem.” (Physician 3)
The lack of rehabilitation staff creates a barrier to provide adequate care for CM survivors with neurological sequelae. “The other thing, the availability of staff, there are few of us so it becomes difficult to manage a lot of children at once, you can’t manage you only do minor assessments.” (CRW 3)
Caregivers expressed difficulty in accessing services centralised in the city due to inability to fund transport to the city hospital. “Usually you give [caregivers] a date to come [to appointments], but you find that maybe they didn’t come because of issues to do with transport. Most of the times they say they don’t have [money].” (Rehabilitation Officer 2)
(4) Disability Stigma and Sociocultural Barriers to Accessing Neurorehabilitative Care For post-CM patients with disabilities, social isolation presents as a barrier for patients and their families to engage in community activities. “They are not able to participate in community projects such as food for work, they say such people are too busy taking care of their kids, they can’t go to churches or weddings, and people speak harshly of them.” (Rehabilitation Officer 1)
Caregivers discussed stigma, including community shame, beliefs about their post-CM child being bewitched, and others mocking the post-CM child. “I lack peace of mind because even my own relatives used to make fun of me. They believed that the child was bewitched.” (Caregiver FGD 1)
“They don’t really understand what has happened to them because even today people think they have been bewitched so if you really don’t understand what happened it is also difficult for you to take care of that child because you don’t know, you just think that possibly the child is having the problem with the hand, you don’t know that the problem may be coming from the brain.” (CRW 1)
Children with behavioural problems may be forced to drop out of school by school headmasters. “These children[…]are like street kids, they just go begging because they cannot do anything, they will be like that when they will grow up, doing that and in the end those children will develop a very bad habits because they are not empowered” (Nurse 2).
Caregivers and healthcare workers expressed that a support group would be beneficial means of social support for caregivers more than post-CM children. “I wish you could establish small organisation/committees comprising of parents and guardians whose children suffer/suffered from cerebral malaria. These members can help others who may face similar problem. As of now, we just teach/share things that we feel we know, not necessarily skills or knowledge from the hospital.” (Caregiver FGD 2)
“[Caregiver support groups are] being shown elsewhere to help a lot[…]Most of these parents there at home are frustrated no-one want listen to them. Exchanging experiences of problems that they are facing sometimes is half solved.” (Physician 3)
(5) Challenges to Continuing Care in the Community 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. “[…]There should be the small organisations in the communities to help parents who shall have the children with the same problem, you should train them because we do it ignorantly. Most of the staff we train our children is from our heads without any experience.[…]There should be an organisation made up of people who had the same experience.” (Caregiver FGD 3)
Care does not often continue in the community following hospital discharge, which poses as a barrier to patient recovery. “The moment the child has been discharged from the [central hospital] and goes to [their village], there is nothing to be done there.” (CRW 3)
“When the child goes home [from the hospital] he or she will no longer receive any rehabilitation as a result the child just stays at home without proper assistance.” (CRW 4)
Many families, especially those living in rural settings, face long distances to health facilities, and unfavourable modes of transportation for physically disabled children. “If you ask [caregivers] to come to the clinic with the child, it is not easy, they need transportation they use a minibus and they have to carry their child on their back for some distance as such you cannot expect them to come to clinic as regularly as possible.” (Physician 3)
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. Some caregiver experiences were contradictory and emphasised a lack of support in the community. “A priority may be to take care of other children they have. They need to take care of the family and their husbands. So, the child with disability is like a burden to them, and they will not take good care of the child because they do not have enough support” (Nurse 1)
“Most of these parents would like to go out and look after money may be to go in the fields to farm. So, they would need someone to look after this sick child. So, when they are sitting for this child they are not going out they would lack enough money they would lack food. And this child also would need food to eat.” (Nurse 2)
“In my community there are no rehabilitation programmes for children that have neurological problems due to malaria, they take this as a family problem and the community is not concerned at all.” (Caregiver FGD 2)
“[…]in the community where I live, people look at the impairment of my child as a family burden or just as any other disease my affect a family and the community has nothing to do about it.” (Caregiver FGD 3)
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. “Most of the teachers are not busy with them, we don’t really have special need teachers so in most of the schools they just see all the children as equal they don’t really see the problems, they just teach them as part of children not that they have brain problems.” (CRW 3)
Most participants perceived community-based rehabilitation as a critical component in caring for children who have survived CM and subsequently developed neurodisabilities. “If we can develop rehabilitation centres in the communities so that those kids once they have developed complications, they can be taken care of in those rehabilitations centres. I think that can be a relief to their caregivers who most of their times are busy taking care of these kids.” (Clinical Officer 2)
“Yes, it is very important to follow-up children that had cerebral malaria and have been discharged from hospital ward as this helps in early diagnosis and rehabilitation of any problems that may arise before these problems can reach severe stages. It is really important!” (Caregiver FGD 3)
(6) Suggestions for Implementing Community-Based Rehabilitation 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. “Apart from giving [caregivers] materials, you also need to give them something that will motivate them to attend follow-ups because sometimes the mothers are not able to attend even the community rehabilitation they are busy doing other businesses so you can give them something that will motivate them, such as supplementary foods like chiponde.” (CRW 1)
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. “I think the best thing is that the cerebral malaria group would do emulate what palliative care people are doing, they need to form a group of people which must follow-up these children who have brain damage and see how they are being cared for, are they well at home, what are their problem or how can we help, do they need wheel chairs or do they need CP chairs?” (Nurse 1)
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. “The gap is starts from training because you cannot have public community rehabilitation programme without data skills in identifying and support those kids.” (Physician 3)
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. “It is only when we [have epidemiological data] that when we can convince government or non-governmental organisations to think about better implementation of community-based rehabilitation programmes.” (Physician 3)