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Table 2 Perceived family and community level barriers to epilepsy care

From: Barriers to epilepsy care in Central Uganda, a qualitative interview and focus group study involving PLWE and their caregivers

Themes and categories Illustrative quotations from Respondents
Family issues
 Lack of support “She came to my home and at that time her grandparent detested her saying, “I won’t be able to manage that child” so she sent her to us and said, “there she is; you should suffer with her but personally I can’t”.” Respondent CG#22
Caregiver burden
 Lack of information “They never explain to you whether it is this or that, the doctor just writes down the drugs”. “They started giving me medicine, so he started on that medication”. Respondent CG#27
 Increased responsibilities “Well I have to take care of him such that he doesn’t get an attack in my absence and yet I have a job to attend to. You see it is that job that sustains me so it gets really hard for me. The challenge is with my job. If I am to leave in the morning, I would have to first give him his medicine”. Respondent CG#24
 PTSD “When he seizes, I don’t do some things because of stress. I can be like, “no, I don’t even feel energetic”.” Respondent PR#4
Lack of community support
 Community isolation and attitudes “The challenges that I go through especially, people don’t like patients with epilepsy; they fear them. Because whenever he falls down people get scared. Well people especially the family, all have refuted him and instead want me to stay with him. They never treat him well; everyone refutes him and chase him around”. Respondent CG#24
 Lack of epilepsy education programs “The problem is that there’s only one care provider; when we come to pick drugs he’s the same person who handles other patients, so maybe he doesn’t get enough time. That is the reason why I said that we need to form a union and provide education to the people and then they choose within themselves peer educators”. Respondent CG#22