Table 4 Quotes of participants relating to Activities and Participation of children post cerebral malaria
Activities and Participation | ||
|---|---|---|
Carer’s views | Professional views | |
Learning and Applying Knowledge | ||
Basic Learning Acquiring skills | At that time (before CM) he was more alert/clever (anali wochangamuka). At the moment maybe…it looks like he is going backwards/regressing (kubwelela mmbuyo)” (CG 10) “Before he got sick things were ok he was intelligent, was first in his class” (CG 12) | “No most of them do not raise performance as a problem but when we do the assessment we note that the child cannot even perform in school” (Nurse 1) |
Applying knowledge Focusing attention | follow instructions; “When you send her, she comes back with something else, she keeps forgetting” (CG 8) “the difference is that when the other was younger, you could see that her head is working ok (mmutumu zimayenda bwino bwino). Because if you send her she would do what you say and when she went to play, she wouldn’t undress.” (CG 3) | “They become some sort of dull they are not concentrating when the child is going to school” (Nurse 4) “Cognitive problems, psychological issues, things like behaviour aggressive behaviour, because that yes is a major issue that can disrupt the whole family and has a major consequences in terms of school, schooling for the kid” (Clinician 2) |
General Tasks and Demands | ||
Managing one’s own behaviour | “the child may appear to be completely well but his/her behavior is still a problem. He is very destructive, keeps beating his/her friends” (Nurse 3)“ “The child may be school aged but cannot go to school because he is very destructive. The other children would be in trouble and even his child’s life is not safe because if the child meets some people who are unaware of his/her problems and he/she provokes them, they may hurt him/her and so such a destructive child needs proper assessment.” (Nurse 5) | |
Communication | ||
“On speech there are some patients that are stroke patients even the children with CP they also have the same problems” (Rehab technician) | ||
Mobility | ||
Walking | “Her legs became paralyzed…she was able to walk before the illness and when she suffered from malaria she stopped walking” (CG 1) “We stayed for almost a week at home and then she started walking again” (CG 8) | “they’re not able to support themselves, they are unable most of the times to walk”(palliative care professional) |
Moving Around | “He is going backwards (kubwelela m’mbuyo)…he was crawling at that time (pre CM) but now he is not crawling” (CG 3) | |
Self Care | ||
Feeding | “For instance with eating nsima, he coughs, struggling with swallowing but when we give I porridge it is better” (CG 2) | “So this causes a challenge because quite often they are not feed themselves (Palliative care professional) “The child has been discharged on nasal gastric tube because of …the brain injury that he cannot even swallow” (Nurse 2) “When you arrive at the house and hear the breathing and you realize that the chest is congested because of the feeding practice. The big problem is the method of feeding, so you show them the correct position for feeding because if the child is being fed whilst lying down, the child is at risk of choking and also of pneumonia.” (Palliative care nurse) |
Domestic Life | ||
Preparing meals | but she is able to put cold water on fire she holds with one arm and also is able to set fire.(CG 15) | “..most of the times they are perceived as time wasters for the mothers..instead of maybe mothers concentrating on some of the households chores, attending to the siblings attending to the husband, themselves they need much time to attend to these children” (nurse 5) |
Interpersonal Interactions | ||
General interpersonal interactions | “Iiiih! [emphasis] As of now she is really changed, stealing! Whatever she finds in the house whether a friend has left nsima on the table she just grabs it.” (CG 1) | “but there are a few will complain that my child after the malaria became much more aggressive than before they are always fighting us through (Clinician 5) |
Basic interpersonal interactions | “After…. CM they were behaving like those children with mental disorders. Most of the time they can hold any doctor when he comes they can hold this and take that they cannot really respond to what mother or nurses are doing”. (Nurse 6) | |
Particular interpersonal relationships | “It is not easy to help another man’s child. It is not easy.“ (CG 16) | |
Informal social relationships | “the main thing is that they lack knowledge, if they knew that taking the child outside and allowing him to be and play with other children could help his brain, maybe, they may do this more.” (Palliative care professional) | |
Major Life Areas | ||
Education | “So my worry is could she continue with school with no problems” (CG 9) | |
Work and employment | “When they are coming for the next visit other children improve depending on what the mother does at home but with Malawian socio-statuses other children remain delayed when the mother is a busy woman”. (Nurse 2) | |
Economic life | “So we try to get the food he eats, its the kind that we could not afford during that time but we will settle for ‘thelele’ (wild vegetable) so that our child can eat the things that we feel he is able to eat happily.” (CG 7) | “If the child is like in this status, it means the family has to source out the money to travel to access the Occupational therapy” (Rehabiliation professional) |
Community Social and civic life | ||
Community life | “…they cannot perform the activities within their communities because there is this child who is like now incapacitated, so they need to be close to him. They cannot participate in any other church activities because they must look after this child in each and every moment so it is like the holistically they are affected in all aspects” Rehab/palliative care nurse | |
Religion and Spirituality | “the discussion we had was that may be he has been bewitched and we should just seek traditional help like at the village the way they know epilepsy like convulsing” (CG 1) “why are you just looking at the child like that without consulting a traditional healer or going for prayers?” (CG 15) | “They think this has just happened because of people (witchcraft)” (Nurse 4) |