an exploration of caregiver burden in nodding syndrome in northern uganda n.
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AN EXPLORATION OF CAREGIVER BURDEN IN NODDING SYNDROME IN NORTHERN UGANDA. Byamah Mutamba , Seggane Musisi , James Okello , Janet Nakigudde. OUTLINE. BACKGROUND AIM METHODS FINDINGS DISCUSSION. BACKGROUND.

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an exploration of caregiver burden in nodding syndrome in northern uganda

AN EXPLORATION OF CAREGIVER BURDEN IN NODDING SYNDROME IN NORTHERN UGANDA

ByamahMutamba, SegganeMusisi, James Okello, Janet Nakigudde

outline
OUTLINE
  • BACKGROUND
  • AIM
  • METHODS
  • FINDINGS
  • DISCUSSION
background
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
slide4
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
what is nodding syndrome
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
key symptoms
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
caregiver burden
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.
the problem
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

methods
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
tools
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
ethical issues
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
data management and analysis
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
agony about nodding syndrome stigma and discrimination
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!
contn of stigma
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!
cognitive and behavioral problems
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!
constant worry about the child s safety
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
caregiver s s hattered dreams
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)
caregiving is a lonely journey
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

caregiver s burnout
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!”
psychological issues as a consequence of the above agony
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.
psychological issues as a consequence of agony contn
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

psychological consequences cont
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.
physical and financial constraints
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.
caregiving is physically draining
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
discussion
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
discussion1
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)
acknowledgments
Acknowledgments
  • We are grateful to the participants, the research and assistants
  • Thank you for your attention