“It means you are grounded” – caregivers’ perspectives on the rehabilitation of children with neurodisability in Malawi

Figures & data

Table 1. Participant demographics.

Participant number	Sex of parent	Age of child	Child’s health condition
Parent/carer in-depth interviews
PCIIDI1	F	3 years 2 months	Gross motor impairment, abnormal movements, speech, visual and hearing impairment following TB meningitis, multiple strokes, and secondary hydrocephalus
PCIDI2	F	2 years 6 months	Diplegia and gross motor impairment from TB meningitis
PCIDI3	F	9 years	Hemiplegia following traumatic brain injury
PCIDI4	M	6 years	Hemiplegia and ataxia following a stroke
PCIDI5	F	5 years	Gross motor impairment, generalised spasticity, incontinence and speech impairment following traumatic brain injury
PCIDI6	F	8 months	Global developmental delay post febrile illness in neonatal period
PCIDI7	F	4 years 4 months	Hemiplegia, speech and visual impairment, and epilepsy following probable cerebral malaria
PCIDI8	F	8 months	Hemiplegia and focal seizures following TB meningitis
PCIDI9	F	3 years 2 months	Gross motor, speech impairment and epilepsy following cerebral malaria
PCIDI10	F	1 year 6 months	Global developmental delay following cerebral malaria
PCIDI11	F	1 year 1 months	Hemiplegia following cerebral malaria
PCIDI12	F	5 years	Gross motor impairment, speech and swallowing difficulties following TB meningitis and multiple strokes
PCIDI13	F	7 years	Hemiplegia, speech impairment, cognitive impairment, swallowing difficulties following coma (underlying cause unknown)
PCIDI14	M	11 years 7 months	Hemiplegia, facial nerve palsy, swallowing problems, and speech impairment following cryptococcal meningitis
Participant number	Sex of professional	Profession
Professional/health worker in-depth interviews
HWIDI1	F	Nursing Matron
HWIDI2	M	Clinical Officer
HWIDI3	F	Clinical Officer
HWIDI4	F	Rehabilitation Technician
HWIDI5	M	Junior doctor in Paediatrics
HWIDI6	M	Speech & Language Therapy technician
HWIDI7	F	Ward Nurse
HWIDI8	F	Ward Nurse
HWIDI9	M	Paediatric Registrar
HWIDI10	F	Occupational Therapist
Focus group number	Number in group	Professions of those in group
Professional/health worker focus-group discussions
HWFGD1	17	Nurses from paediatric malnutrition ward, medical bay, special care ward, malaria ward,  outpatients and A + E
HWFGD2	4	Paediatric palliative care team: nurses, clinical officer
HWFGD3	7	Nurses who had attended neurodisability training session from malaria ward, medical bay,  orthopaedic ward, special care ward
HWFGD4	5	Other professionals: Rehabilitation technicians, Playladies, Hydrocephalus specialist nurse

Table 2 .Problems faced by children with neurodisability.

Problems	Illustrative quotes
Impaired function
• Motor difficulties/immobility • Feeding/swallowing difficulties • Continence • Visual/Hearing impairment • Speech/language impairment • Behavioural problems • Cognitive impairment	“We had a certain child when she had a disability she was 5 or 6 and when she became 8 years she was becoming… fat so even for the mother to carry her from the mat to a chair it is difficult and I think she was alone … nobody was assisting her. So it was difficult for her to even carry the child from the mat to the chair… She was just doing everything on the mother” HWFGD1 “Because some even find that, they are even maybe wetting the bed, or, defecating on the bed, or, they can’t say ‘I want to go to the toilet’” HWIDI 08 “…these patients with defects like eyesight, hearing, they are just dumped in the community and their school is affected” HW FGD2 “Even when I am looking into his eyes… I sometimes doubt that he is able to see” PCIDI 01 “Although he cannot speak, but I am still able to talk to him. So on my own am able to know that when he is moving the eyes or the head, shows that we are understanding each other” PCIDI01 “…you find that most of the neurological sequelae that we get is kids who come with behaviour changes… sometimes like they become hyperactive, sometimes disorientated….” HW IDI03 “Of which she needs much help on, the one I happen to feel is really a problem…… It is that one of having a head that doesn’t function properly” PC IDI10
Secondary problems
• Aspiration • Malnutrition • Pain/distress • Pressure sores • Contractures • Poor seizure control	“Choking may result leading to several complications, pneumonia among them, not to mention about death… “HWFGD4 “…a number of them they might come back with malnutrition… because of feeding, so skills on food preparation and how to feed the child, what to feed… is very important because many of them will come with malnutrition several times“HWFGD2 “What we do is that we give analgesics, but we would like to know why they are crying? Because they do not stop, they can cry 24 hrs.” HW FGD1 “That’s what is making him at times you could see that he is crying uncontrollably and also becoming troublesome…” PCIDI 01 “my experience shows that these disabled children it’s better to nurse them on a mattress at home because they don’t get bed sores, most of the times, but in addition… in the villages they put them on a mat which is hard so they develop bed sores easily” HWFGD1 “They have no power, or when she wants to crawl then these limbs remain behind and she bends the arm like this…” PCIDI 11 “…drugs to prevent the seizures. Because if they don’t do that as well the seizures will continue, and they will still be coming to the hospital each and every time.” HWIDI 09
Activity/participation
• Dependence/lack of independence • Unable to attend school • Lack of social integration • Unable to work/contribute to family	“The difference was in a way that: since she was not able to sit down, she was not able to do anything, she was always on the back…… Eeh, therefore this really used to be hard for me, it was really a problem” PC IDI 10 “It’s a very big blow because it’s like they are having a child, who is like, maybe could be ten years, but to them it’s like a one day old…. he needs to be fed, he needs to be bathed, he needs to change nappies now and then, you know it’s a very big blow.” HW IDI05 “Since it looks like his head is not functioning well…. Sometimes he gets lost on the way. Therefore with his inability to speak…. even his hands have not reached a point of maybe taking a pen and write….” PCIDI 13 “…since the child is immobile, is not walking, is not talking, and this one is an older child because is 6 years, maybe before she or he got sick was able to play with other friends and could do everything on its own, the child, so we advise the parents or the guardian never to isolate the child…” HWFGD 3 “the problem that I see as being big is that of coming back to normal like in the past so that she should start doing all the work she used to do” PCIDI 14
Burden of care
• Gender issues • Family separation/ marital issues • Physical burden • Opportunity costs • Financial issues • Care of siblings • Maternal stress/ depression	“Yes, therefore I as a parent, his mother, I have accepted to help my child in everything” PCIDI03 “The fathers are not really keen to help the mothers in caring these children with disabilities…. Yeah, and you find that most, most fathers, when they have seen that now the child has become disabled, then mmm, they are not happy with that” HWIDI 10 “Some people they get divorced because the mother is too busy taking care of the …. depending on severity of the disability and how long it has stayed, the mother is taking too much time taking care of this child and is maybe ignoring the husband” HWFGD3 “The other area which I see to be a problem for the mothers is, if this child has been walking, doing all sorts of activities, and now here they are, grounded. And if that child is growing, it will be a burden to the mother, to the guardian. “HW IDI 1 “So it becomes difficult for me to do other chores, for example I have not yet started cultivating the fields….” PCIDI11 “I think financially that’s where it comes in, because, money is everything I should say, because you need to give them the right food, you need to come with them to the hospital when they get unwell…. yeah, they need to take them to school.” HW IDI 3 “…if they have other children at home they are thinking ‘Oh! If this time if I go again I will also stay longer again, what will happen to the other kids?” HWFGD3 “when they are small babies or toddlers, they don’t seem to be very much depressed, but when the child is growing up… now the care has to increase. And even when you are growing up, you still, the child needs to feed more, so the time for them to spend feeding these children, they get tired, each and every time.” HWIDI09
Neglect & abuse
• Left alone/locked up • Not cared for • Not fed • Not taken to health services   when unwell	“….they are just being kept in the home… They are locked there and people go out to work. They don’t care for them.” HWFGD2 “You know they need love… because there are some, I was doing some follow-ups, some time ago, and I find the child who they are dumping in the house, doing their business or doing other things, staying the whole day without eating…. so I think they need love.” HW FGD1 “…there are some who just dump them in the house, without feeding them, without caring them…” HWFGD1 “Most of the patients when they are discharged with such complications, they just close them in the house, even if they fall sick they don’t even bother to take them to the hospital.” HWFGD2 “….sometimes because of the stigma in the society they would just leave it like that, after all he is already sick so…” HW FGD3

Table 3. Barriers to rehabilitative care and illustrative quotes.

Barriers	Illustrative quotes
Acute illness is the priority	“Mostly in our ward we only give more time to, like the patients that are very sick because of the shortage of staff.” HWFGD3
	“Because here they come because of their acute problems that they have at that particular time…. so if it’s malaria, then it’s just malaria you treat….” HWIDI02
Loss of interest/ hopelessness	“….we just focus on the curative measures but whenever this child has been disabled nobody is interested what is there afterwards” HWFG2
	“…once you have controlled the distressing symptoms, still you feel that this patient, let us see, let us just discharge them…” HWIDI01
Lack of time, huge workloads &  staff shortages on the wards	“…the advice is not all that up to the standards, because our department is so busy, and maybe they don’t have enough time to sit down with the guardians…” HWIDI01
	“Mostly, I think because the nurses are so overwhelmed with putting up drips, giving out medication, whatsoever….” HWIDI10
	“At times, you want to do something to the mother or to speak to the mother, or do something to the child but you can’t do it because of shortage of staff…” HWIDI08
	“…do nurses have time to listen? Because yes they would love to talk about all this and do this and do that, but have they got time to listen?” HWFGD3
Lack of rehabilitation professionals	“…we are just a few of us working and there are a lot of children who need us… who needs our services, yeah that is the main challenge that I see.” HWIDI04
	“because of lack of the trained personnel in other disciplines, like the occupational therapist, physiotherapist, or the social workers, you will find that mainly like in our country we opt for multi-tasking, where a single discipline is given all those tasks to perform and eventually this particular discipline becomes overwhelmed.” HWFGD2
Lack of space/equipment	“one challenge is also equipments, yeah, those patients they need like standing frames, corner seats, and other equipment that may help, even wheelchairs.” HWIDI04
	“…we don’t have, we can’t give these kids in our hospital, we don’t have no place where we can keep them for a long time…. like how we do in the malnutrition” HWIDI07
Lack knowledge/ training	“Yeah, I think, the nurses themselves we don’t have knowledge about it. We just dish medication then we go…” HWIDI08
	“I feel like there is lack of information to the nurses to understand…what actual type of kids are left in there.That’s why I said I find a lot of kids being fed lying in bed” HWIDI06
Low HW confidence & ownership	“…I don’t know whether it be fear or how they can approach, they don’t have enough knowledge how they can handle such kind of a situation.” HWIDI01
	“….you can’t, you don’t know what to say to the, to the mother or the father or the relatives of the children” HWIDI08
	“…they [Umodzi team] come and do, they do proper counselling. We also do counselling, but I think they do it in a better way…” HWIDI03
Stigmatising attitudes of HWs/guardians	“this cerebral malaria, had you came earlier, we would have helped you. But the problem is you came very late, and now look now the child, brain is damaged.” HWIDI05
	“…because once that child is disabled, illiterate people, they will not even think about the future of that child…. yeah, it ends there” HWIDI03
	“….they won’t like other guardians or parents to be looking at them, like some kind of stigma”. HWFGD3
Focus on physical disability	“…it‘s more physical, physical, physical…… they miss a lot on the learning part, the mind part.” HWIDI10
	“We don’t refer them anywhere…. Usually we just take care of the acute symptoms they come with but the behavioural thing we can’t do anything about.” HWIDI02
Failure to use available services	“[they] are being discharged direct from the ward to home, while there is a department here. But that could be because somebody may not have the information” HWFGD4
	“Because you know, here we complain about human resource until God knows, but we can use those playladies and just tell them what they can do with the child” HWIDI10
Poor awareness of services	“…there is also another challenge that programmes do not talk to each other” HWFGD2
	“Maybe there are organizations which are looking at issues of disabilities but at a community level itself I don’t know. Maybe they are there but I am not aware” HWIDI01
Poor access to services	“… worst still, according to our locations of the health facilities within our communities, the radius of health facilities are just too far apart where there are no services of rehabilitation when they have been discharged. As a result they are just left out in the village, isolated, nobody is there to help” HWFGD2
	“They are coming from poor families so sometimes means they complain it is far from the hospital, they are not able to go to the centres, to come to Queens…” HWIDI09
Poor recognition of the issue	“it is just unfortunate that quite a lot of resources are poured towards managing malaria as here is the number one killer disease, but nothing was thought of what maybe….….happens after those people have survived the condition” HWFGD2

Table 4. Caregiver’s ideas about improving communication with families of children with neurodisability.

Content
What parents/carers want to know
• Diagnosis – explanation of what exactly is wrong with their child
• Why a problem in the brain affects certain functions e.g. walking
• Investigation results
• Treatments
• What will happen in the future in terms of recovery of specific functions (e.g. walking) and participation (e.g. attending school/work)
• Whether it will it happen again (e.g. with future malarial episodes)
• How to help their child’s recovery and function
What health-workers think parents/carers need to know
• Diagnosis
• Prognosis
• Management plan
• How to ‘handle’ the child including correct positioning and turning the child in bed
• Basic nursing activities
• Advice on feeding and nutrition
• Physiotherapy exercises
• How to use the ‘CP’ (Cerebral Palsy) chair correctly
• Purpose and administration of medication
• How to help the child sit and walk
• How to stimulate speech and hearing by talking to the child
• Importance of social integration; allow the child to be with other children
• How to monitor for potential sequelae of brain injury that may not be evident at time of discharge e.g. delayed attainment of developmental milestones
• Follow-up arrangements and available services to support rehabilitation
• General health promotion; seek help early for illness in their child, use preventative measures e.g. mosquito nets
Format
• Start from the day of admission, don’t leave it until the day of discharge home
• Allow sufficient time and privacy
• First build good rapport
• LISTEN to the Parent/Carer’s concerns
• Carry out with a sense of empathy and love
• Encourage and motivate Parent/Carers
• Understand the subject you are talking about
• Explain reasons behind recommendations e.g. feed the child sitting upright to reduce risk of choking or aspiration
• Repeat and reinforce key messages
• Make the sessions interactive, practical and fun
• Adapt for the Parent/Carer’s level of education and literacy
• Use materials e.g. pictures/leaflets to support not replace counselling
• Involve fathers, families and communities
• Make sessions regular/ongoing, not one-off
• Consider group counselling sessions and peer support methods