AN EXPLORATION OF CAREGIVER BURDEN IN NODDING SYNDROME IN NORTHERN UGANDA

1. AN EXPLORATION OF CAREGIVER BURDEN IN NODDING SYNDROME IN NORTHERN UGANDA ByamahMutamba, SegganeMusisi, James Okello, Janet Nakigudde

2. OUTLINE • BACKGROUND • AIM • METHODS • FINDINGS • DISCUSSION

3. BACKGROUND • Part of astudy: to assess the effectiveness of a group interpersonal psychotherapy intervention designed to improve the mental health of carers and patients affected by the Nodding syndrome in northern Uganda

4. AIM • We aimed to explore the challenges that caregivers of children with Nodding syndrome are faced with in their daily care of the affected children

5. What is Nodding Syndrome? • A debilitating chronic non-communicable epileptic disorder of unknown origin • Afflicts children and adolescents ranging in ages between 3 and 18 years • Over 3000 children and adolescents have been afflicted in Northern Uganda

6. Key Symptoms • Repetitive dropping of the head forward due to loss of neck muscle tone • Later cognitive deficits • Associated behavioral problems • Delayed sexual and physical growth • Wasting or stunting • Motor deficits • Social impairments

7. Caregiver burden • Burden has been described by Poulshock and Deimling (1984) as the distress a caregiver experiences that is as a result of the care-recepient’sphysical dependence and mental incapacity • Poulshockand Deimling (1984) concept of burden has been broadened to include two types of distress; distress of the caregiver due to his or her provision of care and distress due to the impact that caregiving is having on one’s life.

8. The Problem Whereas numerous studies are investing the etiology and treatment of children with Nodding syndrome, no study has assessed the nature of burden that caregivers of children with Nodding syndrome experience This is the first study that explores caregiver burden in this population in Northern Uganda

9. Study context

10. Methods • Study Design: A qualitative data collection and analysis design was used • Participants: 49 participants were purposively selected for 5 Focus Group Discussions • There were 4 female focus groups with 10 participants in each group and 1 male focus group with 9 participants

11. Tools • Using a case vignette based on the diagnostic criteria for Nodding syndrome, we formulated questions related to the caregiver experiences • The case vignette and questions were translated back and forth by both a mental health expert and a lay person into the local language- Luo • The final translated version was pilot tested on participants that were similar to the population of the study

12. Ethical Issues • The study proposal was presented to the School of Public Health Internal Review Board • Subsequently upon approval the study proposal was submitted to the Uganda National Council of Science and Technology • The Ministry of Health National Coordinator acted as the gate keeper is facilitating our entry into the community • We finally obtained voluntary informed consent from the participants

13. Data Management and Analysis • Data was audio taped and summaries of the discussion were captured by a trained note taker • Data was translated and transcribed into English • Using Nvivo 10 software package, we built categories using primary and secondary nodes and subsequently through query developed themes

14. Linkage between the themes

15. Agony about Nodding SyndromeStigma and discrimination Stigma and discrimination both for the child and the caregiver in the community as evidenced by the quotations below: • 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 you and they stop visiting you!

16. Contn. of stigma Felt stigma was also evident as the quotation below shows: • 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 since that time I decided that I would rather stay with my children and stop visiting other people!

17. Cognitive and behavioral problems Commonly children with Nodding syndrome will develop cognitive and behavioral problems. They may wander off they may take what does not belong to them and then they are taken to be thieves: • Right now my child just wanders off and he can go and pick food from anyone’s home. .. He has become so aggressive that he can easily beat me since he is now 16 years old… And whatever he steals then the owner comes to asks 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!

18. Constant worry about the child’s safety • …if the child goes to ease himself then the caregiver is worried that the child may have collapsed. Then when he goes to take a shower, the caregiver is worried that maybe this time he has drowned in the basin! • And there are others, when they are walking/wandering someone will pick a stick and beat them because they are unwanted in the neighborhoods

19. Caregiver’s shattered dreams • 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)

20. Caregiving is a lonely journey I struggle alone. I always have to carry my twins and go to the garden and as for my husband; he will never try to come with me to the garden

21. Caregiver’s burnout • I went to the garden and when I returned I found that my sick child had left home and 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 that “ if he died, maybe I would have peace!”

22. A CHILD WITH NODDING SYNDROME

23. Psychological issues as a consequence of the above agony Irritability • If there is an illness in the house, you are always quarrelling in the house…then one will inevitably feel sad (Resp. 4, FGD II) Isolation • I was so angry and I stopped socializing with other people because I have three sick children in my household.

24. Psychological issues as a consequence of agony contn. Thinking too much She is thinking too much, she is thinking all the time Sometimes I feel like my heart is bleeding When I start thinking of my child I feel an emptiness in my heart

25. Psychological consequences cont. Sleep disturbances • 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). Suicidal and homicidal ideations • If 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.

26. Physical and Financial constraints Taking care of an affected child is always done at the expense of other activities: • Having a sick child prevents one from going to the garden. So one may not have food in the house! When there is scarcity of food and other resources, caregivers are forced to make difficult choices between providing for the affected and non-affected children • There are some people who abandon those children and they may not even give them food because they say that those children are useless.

27. Caregiving is physically draining • The caregiver doesn’t have energy to go the garden and yet the healthy children have to eat but because of the sick child she is prevented from going to the garden. • 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

28. DISCUSSION • Similar to previous findings on caregiver burden in mental health, stigma and discrimination ranked high on stressors that caregivers were experiencing • Nodding syndrome is debilitating and cognitively impairs children. When people don’t understand what is happening, why it is happening, and in absence of an explanation, they naturally want to keep away from those affected

29. Discussion • Caregivers lacked social support. The disorder is chronic, overwhelms the caregiver’s internal resources. It is likely that caregivers are going to feel unsupported because the work is too much, emotionally and physically draining ( ref) and this sets a background for the resultant psychological complications that caregivers suffer from as is indicated in the results • Additionally, with limited financial resources caregivers are not able to purchase the services that are required to alleviate their distress of care giving (ref)

30. Acknowledgments • We are grateful to the participants, the research and assistants • Thank you for your attention