Background
Study setting: Northern Uganda
Methods
Materials, data sources, process, data management and analysis
Ethical statement
Age | Oldest | 62 |
N = 54 |
---|---|---|---|
Youngest | 25 | ||
Mean | 36 (SD = 9.79) | ||
Religion | Male | Female | |
Catholic | 4 | 28 | |
Protestant | 1 | 12 | |
Christian-Born Again | 4 | 5 | |
Traditional Religion | - | - | |
Education Level | No Education | 5 | 32 |
1 – 7 yrs | 4 | 13 | |
8 – 11 yrs | - | - | |
Marital status | Married | 9 | 23 |
Widowed | - | 9 | |
Separated | - | 8 | |
Single | - | 5 | |
Occupation | Peasant Farmer | 9 | 45 |
Formal Employment | - | - | |
Relationship to child | Biological Parents | 8 | 38 |
Other relatives including grandparents | 1 | 7 |
Variable | Sub county 1 (Atanga) | |
---|---|---|
Age: mean Oldest Youngest | 14.16 (2.4) 18 6 | SD 9.7 |
Child gender (n = 54) |
n (%) | |
Male | 25 (46.3) | |
Female | 29 (53.7) | |
Class attended (n = 54) |
n (%) | |
Lower primary | 8 (18.6) | |
Middle primary | 4 (7.5) | |
Upper primary | 1 (1.9) | |
Not in School | 38 (70.4) | |
Religion of the child (n = 54) |
n (%) | |
Protestant | 10 (18.5) | |
Catholic | 30 (55.6) | |
Christian saved sect- | 8 (14.8) | |
Believers in tradition | 0 | |
Not religious | 6 (11.1) | |
Is your father alive: (n = 54) |
n (%) | |
No | 14 (25.9) | |
Yes | 40 (74.1) | |
Is your mother alive: (n = 54) |
n (%) | |
No | 2 (3.7) | |
Yes | 52 (96.3) | |
Whom did you leave with: (n = 54) |
n (%) | |
With parent(s) or guardian | 43 (79.6) | |
With other relatives | 4 (7.4) | |
With grandmother or grand father | 6 (11.1) | |
Other persons | 1 (1.9) | |
School Attendance: (n = 54) |
n (%) | |
Going to school | 7 (12.9) | |
Not going to school | 47 (87.1) |
Results
Theme 1: Child and caregiver safety concerns
“One is always on tension because the child can wander away to the bush, never to come back! I lost one of my children! He was among the first children who were affected in this community. My boy disappeared, he was found dead after two weeks, with a stench. He had wandered and died in the bush…” (Respondent in an In-depth interview)
“And during the rainy season she (caregiver) will be worried that the child might leave the house in the night and drown in the rainy puddles…” (Respondent 2 in Focus Group Discussion (FGD)2)
“Sometimes there are some families that don’t have this illness and when your sick child gets an attack on their compound, they will start throwing unnecessary insults…”
“And there are others in the community who will pick a stick and beat a child found walking or wandering…”-an indication that they (the affected children) are unwanted in the neighborhoods” (Respondent 6 in FGD 2)
“…right now my child just wanders off and he can go and pick food from anyone’s home. When I am not around and he is hungry, he will go and steal food. My child was never a thief. And he has now become a thief and is aggressive! He has become so aggressive that he can easily beat me since he is now 16 years old…the second one is 9 years old. And whatever he steals then the owner comes to ask me to pay for it, and if I don’t have money, then I have to be beaten as a punishment for having a child who is a thief!” (Respondent 7 in FGD 3)
“In life our children are our fruits for harvesting in old age and so if my child has no future; it means I also have no future…” (Respondent 5 in an in-depth interview)
Theme 2: Burnout
“I have gone through so much pain that I cannot go on to discuss more, I beg to stop here!” he bent his down and paused for a long period – then, raising his head up and looking straight at a tree in the compound said “it’s a bitter experience, really bitter” (Respondent in an in depth interview)
“I know of a woman who on seeing that two of her children had the disease, she migrated to Gulu (another district), started afresh and married another man” (Respondent in an in depth interview)
“…some men have left their wives as a result of this illness. So we are now managing our sadness alone” (Female respondent in an in depth interview)
Theme 3: Social isolation and rejection
“With this illness, relations change. If in the past, many people were your friends, when a child develops this illness, people start avoiding you! Once you have a sick child, people begin to fear and stop visiting you. I am going through this because my home is close to the main road that everyone in the village uses… We were also told that we should have a separate cup and plate for the sick child. One day while at home, I overheard people saying that they could not come into my home for shelter from the rain because I have sick children! The social relations have completely broken down because of this illness. The person with a sick child might still want to stay with the other community members with healthy children. However, those with healthy children are afraid to stay with her/him. Your relatives will come to your neighborhood but will not come to your house!” (Respondent from FGD 3)
“….and you as well become afraid to go and visit them [neighbours]” (Female respondent 3 in Focus Group 1)
“I remember when my co-wife gave birth to a newborn, I went to visit them, but people said that I had an illness in my house, which would affect the newborn child. So I had to spit on the child as a way of preventing the child from getting afflicted with the illness in the future. So since that time I decided that I would rather stay with my children and stop visiting other people!” (Female respondent 1 in FGD 2)
“My child used to attend school without any problems and now that he is sick, the children are running away from him. Even if they are at home and the sick one is trying to join his friends to play, the other children run away from him. He is chased away because others think that he might spread his disease to the other children..” (Female respondent 3 in FGD 1)
“I struggle alone. I always have to carry my twins and go to the garden, and as for my husband; he never comes with me to the garden…” (Respondent in an In depth Interview)
“My husband with whom I have a child rejected my child completely! It is now three years! He said that he does not want, and that he will not waste his money on my sick child since there is no cure. I became very sad, because I would see him taking good care of the other children he has with the other woman; my co-wife. These other children do not have nodding syndrome! The community has even changed in the way they refer to him. Previously they would refer to him as the father of my child. Now they call him the name of the other woman’s child; my co-wife. He goes hunting and comes back with meat, but he will not share it with my household! He has rejected my children and I am struggling alone with them! (Female respondent 4 in FGD 1)
“Other children are going to school, but the sick one that you have cannot go to school. Others might already be in primary six but the sickness that your child has can prevent him or her from going to school.”(Female respondent 5 in FGD 2)
Theme 4: Homicidal and suicidal ideations
“I went to the garden, and when I returned, I found that my sick child had left home. People told me that I should quickly go after him, otherwise my sick child was about to reach a water source and was in danger of drowning! So I left and started running…I am not sure of what happened, but I fell down and got up crying, and I said to myself “if he died, maybe I would be at peace!” (Female respondent in FGD 2)
“My daughter who had this child with nodding syndrome is also sick but she remarried and is still having more children with that man. So I was thinking that I would be better off dead, so that I don't see the problems that my daughter is going through.” (Respondent 4 from FGD3)
“I thought about it for about five years! I didn't want to live and see what my child was going through. Whenever my child goes to people’s homes, he is chased away because people think that he might spread the illness…” (Respondent 5 in FGD3)
“For example it happened to some woman. She had three sick children and one day when they were having their meals, all the children ‘got an attack of the illness at the same time’. Their mother stayed with her food in her hands and didn't eat. On that day she [the mother] said that if she had any poison, she would have committed suicide..”(Respondent 8 in FGD 3)
“When you are sad, what comes to your mind right away is to commit suicide because the kind of life you are leading is so difficult that death becomes the immediate thought…” (Respondent 5 in FGD 3)
Theme 5: Other psychological issues as a consequence of taking care of a child with nodding syndrome
“If there is an illness in the house, you are always quarrelling in the house…then one will inevitably feel sad” (Respondent 4 in FGD 2)
“If Apio (caregiver in focus group discussion guide) were invited to attend a party she would refuse to come because she doesn’t have that energy to come and interact with people. She wouldn't even think of staying with people” (Respondent 3 in FGD 2)
“I was so angry and I stopped socializing with other people because I have three sick children in my household”. (Respondent in In-depth Interview)
“She is thinking too much, she is thinking all the time”! in reference to caregiver in case vignette. (Respondent 6 in FGD 3)
“She is always thinking about her child and even when she is working in the garden, she is physically in the garden but her heart is at home with the sick child…” (in reference to caregiver in case vignette) (Respondent 1 in FGD 2)
“Sometimes I think I have an illness of thoughts…” (Caregiver 7 in FGD 3)
“When I start thinking of my child I feel an emptiness in my heart and if the child gets an attack at the time of eating, I lose my appetite.” (Respondent 5 in FGD 1)
“Sometimes I feel like my heart is bleeding.” (In depth interview respondent with 5 children affected by nodding syndrome)
“..if you have problems you cannot sleep. And many problems will come in addition to the problems you are already facing. Things like headache, thinking too much, hunger (loss of appetite).” (Respondent 3 in FGD 4)
Theme 6: Physical and financial constraints
“Having a sick child prevents one from going to the garden. So one may not have food in the house!” (Respondent 2 in FGD 4)
“One is always taking care of her child and may not find time to do other work to support her family” (Respondent 9 in FGD 1)
“There are some people who abandon those children and they may not even give them food because they say that those children are useless.” (Respondent 2 in FGD 4)
“Parents perceive spending money on the affected children as a wastage of resources. If there is no improvement in the children’s condition, then the parents do not see the point in continuing to spend the money on these children.” (Respondent 3 in FGD 3)
One problem that the caregiver has is that she is weak and she cannot even carry her child to the health center because she doesn’t have energy! (Caregiver 1 in FGD 1)
“There may be other children that are difficult to take care of now because of the sick child, and their ability to attend school may also be compromised by their sick sibling” (Respondent 8 in FGD 4)