Epilepsy in Uganda: Clinical Characterization and Co-morbidities, Their Relation to Stigma Among Adolescents and Impact of a Community-based Engagement Program
试验速览
- 阶段
- 不适用
- 状态
- 尚未招募
- 入组人数
- 70
- 主要终点
- Attitudes and Beliefs about Living with Epilepsy (ABLE) scores among the community stigma reduction implementation team.
研究概览
简要总结
The goal of this community based observation study is to co-create solutions that empower people to make informed decisions about epilepsy, reduce stigma, and promote community health among the adolescent population living with epilepsy in Uganda.
The main objectives of the study are to:
Goal 1: Co-create a unique patient-community engagement program (CEP) to reduce stigma on epilepsy among adolescents and their caregivers in Uganda based on understanding of the illness.
Goal 2: Evaluate the impact of this CEP to reduce stigma on epilepsy among adolescents and their caregivers in Uganda, based on understanding of the illness.
Study participants together with the relevant community stakeholders will co-design feasible communication and activity-based change projects that are based on both cultural and scientific norms, to reduce epilepsy stigma in the community Researchers will then compare the Quality of Life, Attitudes and Beliefs about Living with Epilepsy scores (as a surrogate of stigmatizing beliefs and practices among community members) and the Kilifi Stigma Scale scores in two parishes (urban and rural) to see if there is improvement in these assessments scores following the implementation of the community change projects.
详细描述
Study Site:
The study will be conducted in Wakiso District which lies in the Central region of Uganda with a target adolescent group (ages 10-18) comprising ~22% of the population. Wakiso District has the largest population density and a 7% growth rate. Our previous epilepsy prevalence work also showed it had the highest number of adolescents with epilepsy (AWE). Wakiso also offers the advantage of having both rural communities similar to those in more remote areas of the country, as well as rapidly expanding urban communities as seen in other urban centers like Kampala city, the capital.
Selecting the communities for intervention:
Two Wakiso district divisions will be randomly selected from enumerated divisions. Within these, parishes will be enumerated and divided into urban and rural parishes, from which one rural and one urban will be randomly selected. The investigators will then list the villages within each selected parish and randomly select two adjacent villages per parish. Using Objective 1 records, the investigators will contact AWE (ages 10-18) and their caregivers in these villages for invitation to the CEP, and the investigators will repeat this step as needed until the required number is obtained.
Study Implementation:
研究设计
- 研究类型
- Interventional
- 分配方式
- Non Randomized
- 干预模型
- Parallel
- 主要目的
- Supportive Care
- 盲法
- Single (Outcomes Assessor)
盲法说明
Study participants and researchers both know which community change intervention they are receiving or implementing respectively.
入排标准
- 年龄范围
- 10 Years 至 18 Years（Child, Adult）
- 性别
- All
- 接受健康志愿者
- 是
入选标准
- •Adolescent with epilepsy residing in Wakiso district
- •Between the ages 10-18 years
- •A resident of Wakiso district, Uganda for the previous six months
- •Confirmed diagnosis for epilepsy as per the International League Against Epilepsy definition
- •Provide written assent to participation in the study
- •With a caregiver willing to provide written informed consent as well as detailed history regarding them.
- •Willing to participate in all the required program activities with his/her caregiver
排除标准
- •Adolescent with epilepsy residing in Wakiso district who
- •Does not have the time or interest to participate in the community engagement program
- •Has had exposure to a similar previous community engagement program
- •Is unable to fully understand what is required of him/her in the study and engage consistently throughout the whole community engagement program
结局指标
主要结局
Attitudes and Beliefs about Living with Epilepsy (ABLE) scores among the community stigma reduction implementation team.
时间窗: two years
Change in knowledge, attitude and beliefs regarding epilepsy among the community stigma reduction implementation team. Attitudes and Beliefs about Living with Epilepsy (ABLE) scale, are scored on a five-point Likert scale (1=no stigma, 5=high stigma)
Attitudes and Beliefs about Living with Epilepsy (ABLE) scores among the non-community stigma reduction implementation team.
时间窗: two years
Change in knowledge, attitude and beliefs regarding epilepsy among the non-community stigma reduction implementation team. Attitudes and Beliefs about Living with Epilepsy (ABLE) scale, are scored on a five-point Likert scale (1=no stigma, 5=high stigma).
Kilifi Stigma Scale scores among adolescents with epilepsy
时间窗: two years
Change in perceived stigma for the adolescents living with epilepsy. Kilifi Stigma scale has a three-point Likert scoring, (0 = not at all, 1 = sometimes, 2 = always). A total score is calculated by addition of all item scores. The higher the score, the greater the sense of perceived stigma.
Quality of Life for Epilepsy in Adolescents scores
时间窗: two years
Change in the quality of life for the adolescents living with epilepsy. Quality of Life(QoL) for Epilepsy in Adolescents scores are on a 5-point Likert scale with: 1 = poor; and 5 = excellent. Ratings are linearly transformed, providing total scores from 0 (low QoL) to 100 (high QoL).
次要结局
- Beck Youth Inventory for depression (BDI-Youth) scores among adolescents with epilepsy(two years)
- Columbia Suicide Severity Rating Scale (C-SSRS) scores for the adolescents living with epilepsy.(two years)