You Are Interviewing the Family of a Seizure Patient

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Barriers to epilepsy care in Primal Uganda, a qualitative interview and focus grouping study involving PLWE and their caregivers

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Abstract

Background

Epilepsy is a common neurological illness with substantial affect on the subject area and their caretakers. This exploratory study identified barriers to care for persons living with epilepsy (PLWE) to develop a culturally acceptable nurse led self-management intervention for PLWE previously developed in the United States.

Methods

The report involving 48 participants (31 PLWE and 17 caregivers) with in depth interviews and focus groups was conducted. We obtained insights into barriers to care in PLWE and their caregivers. Using a thematic analytic process emphasizing the dominant themes the qualitative responses were analyzed. Median age of PLWE was 24 years (IQR xix–xxx), and10 (52.6%) were male. The median age of epilepsy onset was 12 years (IQR 6–18), range of 1–37 years. The median age of caregivers was 50 years (IQR 45–fifty.v), with a range of 18–78 years. Seventy five percent of caregivers (6/8) were females.

Results

Three major areas of perceived barriers involving individual, family or community and provider and healthcare organisation barriers to epilepsy intendance emerged. Individual factors similar express epilepsy cognition and medication non-adherence were reported to be key barriers to epilepsy intendance. Caregiver burden and lack of family support as well as poor health care access were identified from the family and wellness intendance systems.

Conclusions

The main barrier to epilepsy intendance is express epilepsy noesis in PLWE and their caregivers. Improving epilepsy care awareness and knowledge inside communities and appropriate health intendance provider service for epilepsy would help reduce epilepsy barriers and improve intendance.

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Background

Epilepsy is a encephalon disorder that affects people of all ages. Worldwide, over seventy one thousand thousand people are estimated to be living with epilepsy, with approximately 80% residing in developing countries [1, 2]. Limited knowledge on epilepsy in PLWE and their caregivers to guide appropriate choices of care remains a challenge, despite advancements in treatment, diagnosis and intendance of PLWE in our settings. This subsequently portends to recurrent seizures and associated stigmatizing or negative beliefs, and attitudes among customs dwellers to PLWE [three,4,5,6].

Whereas, variations exist in attitudes, perceptions within countries and cultural social context be; development of collective strategies and interventions to amend quality of life in PLWE is urgently needed [7, 8]. In other similar studies in Uganda, majority of the respondents had negative beliefs such equally attributing epilepsy to supernatural spirits, heredity, and preference of traditional medicine and healers to conventional medicine equally a treatment for epilepsy [9,x,11]. Studies assessing the barriers to epilepsy care in Republic of uganda are not available still developing a culturally acceptable and effective intervention requires an understanding of these modifiable barriers in epilepsy care. This report therefore set out to explore the perceived barriers to epilepsy care in PLWE and their caregivers in a Ugandan setting.

Methods

Report setting and design

The study was conducted at Mukono Municipality, health centre 4, epilepsy clinic within greater Kampala, Uganda. The clinic serves as a district clinic for Mukono and the surrounding districts.

This was a cross-sectional qualitative study with a total of 48 study participants were recruited in this qualitative study. For qualitative enquiry, this sample size is within the recommended number of 20–fifty individuals [12, 13].

Inclusion criteria for participation in this study was, age 18 years or older, cognitively intact, and able to provide informed consent. We excluded all subjects who were unable to provide written informed consent and those with secondary epilepsy due to traumatic encephalon injury or stroke.

Focus grouping methods

Six [six] separate Focus Group Discussions (FGDs) were conducted consisting of four groups with PLWE (north = nineteen) and two with caregivers (north = eight). An experienced qualitative researcher fluent in both English and Luganda (local language of the study area) moderated the FGDs. The FGDs were conducted to give in-depth insights into the perceived barriers of epilepsy care. The in-depth interviews' were conducted at the respondents' homes while the FGDs were conducted at the local village chairperson'southward residence. We conducted in-depth interviews in 12 PLWE previously discharged from Mulago national referral hospital in Kampala, and ix caregivers of PLWE.

The median age of PLWE was 24 years (IQR 19–30), with a range of 18–41 years, 10 (52.vi%) were male. The median age of epilepsy onset was 12 years (IQR half dozen–18), range of 1–37 years. Only one of the female PLWE was married, with 95% (18/19) unmarried. Two of the PLWE were students while 26% (v/19) were unemployed. The majority of PLWE (12/nineteen) attained a secondary level of education.

The median historic period for caregivers was l years (IQR 45–50.v), with a range of xviii–78 years. Lxx 5 percent of caregivers (6/8) were female. The majority of caregivers had some source of income or held a dedicated form of employment; but two (2/8) were unemployed.

Qualitative data drove and analysis

Using both contiguous in-depth interviews and FDGs, narrative data on perceived barriers to epilepsy care and coping with stigma were utilized to optimize credibility and validity of this qualitative study [14, xv]. We used open–ended questions so as not to limit the range or breadth of discussion amid the participants. We positioned the study participants for adequate centre contact with others in the group and the discussion lasted approximately 1 h.

Some of the examples of the open-ended questions used to explore the barriers to managing epilepsy and stigma reduction include; "What sort of things get in the fashion of helping y'all in managing your epilepsy?" The guide also included examples of follow-up probes such as "would you explain further", "delight describe what you mean", and "would you lot give me an example". The interview was recorded, and then transcribed verbatim. Information collected from focus grouping sessions included interview and observation.

A team of 3 investigators (MK, HN and MNK) read the focus group transcripts in their entirety to proceeds familiarity with the data. Segments of text from the transcript were labeled and assigned codes that described meaning of content [13].

The codes were later collapsed into broad themes or categories. MK, HN and MNK independently coded each transcript to ensure consistency and transparency of the coding; discrepancies were resolved by discussion. Finalization of codes was based on the consensus of the qualitative squad. We utilized the grounded theory approach to data analysis, involving open, centric and sequential coding, and the abiding comparative method to generate constructs (themes) and elaborate the relationship among them [xvi]. A separate coding dictionary was and then constructed for the interviews and focus groups.

Results

Based on the content of the analyzed written report data generated, predominant barriers to epilepsy care were summarized under 3 themes. Each theme is described and representative quotes illustrating prevailing perceptions are reported in italics. A translator translated all responses in the local language into English language.

Three (iii) major themes of barriers to epilepsy care emerged: (1) individual level barriers, (2) family and community level barriers, and (3) health care arrangement and provider level barriers.

Individual level barriers

In Table 1 themes, sub-themes, and key quotations illustrating the perceived individual level barriers to epilepsy care are presented. We grouped these perceived individual level barriers into the v subthemes reflecting personal issues, which our respondents identified every bit barriers in epilepsy intendance: psychological, behavioral, cognition, lifestyle and functional impairment.

Tabular array 1 Perceived personal level barriers to epilepsy intendance

Full size tabular array

Mental health barriers

Psychological distress symptoms were ofttimes reported by PLWE these included; sleep disturbances, mood changes, stress, and post-traumatic stress disorder (PSTD). These participants likewise reported poor ambition and low free energy every bit well as living in a constant fear of having a seizure.

Respondents reported long episodes of lack of free energy later on episodes of prolonged attacks:

When I become an attack, sometimes I can spend a whole week without energy. Respondent PR#5 (Patient respondent)

For some, but living with the constant fear of having a seizure is and then psychologically stressful that it sometimes results in physical symptoms unrelated to the seizure itself:

"With this illness, suddenly you feel like you lot are about to have an set on and and so go frightened and then the heart beats fast". Respondent PR#1

Behavioral barriers

The principal ii behavioral barriers to epilepsy care reported by the respondents were non-adherence to anti-epileptic therapy and difficulties to seeking mainstream medical care. Majority of the respondents reported that they were socially isolated. Some followed the advice of traditional healers, which opposed the use of mainstream medical care.

"The reason why some people don't swallow drugs, is that traditional healers say they can treat every illness, then some patients seek handling there and quit taking their anti-epilepsy medication". Respondent PR#19

Both PLWE and caregivers also reported an inability to seek modern medical care and opt for traditional or cultural practices, which impact drug compliance.

"One could say that ancestral spirits crusade the trouble and so another person will say that yous stepped over charms trapped in the road; then yous want to try everything to heal as traditional healers treat the charms and misfortunes". Respondent PR#4

Negligence from their caregivers was also reported equally one of the leading causes of drug not-adherence.

"Her mother was negligent about her and would but recall near her from work in the middle of the solar day and instead render in the evening and so give her both the morning and evening dose at once". Respondent PR#11

The study participants also reported reluctance to refill their drugs when feeling better.

"Well if someone uses medication and realizes that they accept improved a little in two months, they think that they have healed so they quit taking it". Respondent PR#18

Knowledge barriers

For the most part, participants identified the major causes of epilepsy as anger, stress, trauma to the brain, and congenital (inherited/inborn) factors.

While some suggested that becoming aroused would damage the brain and cause epilepsy.

"I think that information technology could be anger, where someone can get then aroused that their vessels not bad. It could perhaps damage the encephalon and so get that problem". Respondent CG#2:

However, others reported that it is an inborn or inherited affliction

"Some people are born with that affliction. For others, I hear that information technology is a family thing that they just inherit". Respondent PR#1

Participants suggested that it is a result of brain injury or comes from the encephalon.

"In my babyhood when I was still a baby, mum told me that someone was carrying me and I accidentally fell down and spent the adjacent 24 hours unconscious. So when I was four years old information technology started". Respondent PR#five

All the same, some of the participants reported epilepsy equally beingness contagious:

"Sharing things with people who are sick of seizures". Respondent CG#3

While others felt it was because of spirits or witchcraft:

"Bequeathed spirits, the first time I got the illness, I saw a ghost and had very long hair and nails, and so I ran. When I looked backside, it waved at me and it was in that night that the illness started". Respondent PR#2

However, some PLWE and their caregivers did not know what caused epilepsy:

"In that location's nothing I know most it merely what I know is that it kills". Respondent PR#17:

While a number of participants felt that epilepsy was preventable and curable:

"That i is preventable, you can foreclose against that illness, the same style you lot do it for HIV". Respondent PR#three:

Others felt differently:

"That illness doesn't accept a right medicine to care for it. The doctor told united states of america that the medicine that nosotros get to treat that illness but relaxes it but doesn't cure information technology. It doesn't treat the affliction to cure it for good". Respondent PR#13

Lifestyle barriers

Booze utilize and financial constraints were reported as major impediments to epilepsy care and control.

The study participants highlighted alcohol use as a major hindrance to epilepsy care and control,

"Things got worse considering when I took alcohol after swallowing the medicine, they told me to terminate" Respondent PR#2.

Every bit well every bit being stressed/ashamed when they are talked nigh or when a seizure occurs in front of family or friends.

"My biggest claiming is that I exercise not want to become an assail when my friends are around, I would experience aback if am around many people". Respondent PR#nine

Limitations in self-care as well as participating in abode and community activities were also cited as barriers:

"Sometimes they say; she must not melt. She should never melt for united states of america! What if she falls in the nutrient? Nevertheless I am the one who cooks for the family" Respondent PR#2.

Participant cited financial constraints to meet the required basic needs and go medications as a major cause of stress in their lives and was reported to be one of the barriers to epilepsy care and direction.

"At that place is stress almost finding coin and the children's schoolhouse fees as well mixes in". Respondent PR#ten

Functional impairment and cocky-identity barriers

Caregivers highlighted the changes in mood and loss of self -identity in relatives /friends with epilepsy which was attributed to epilepsy.

"She was easily angered, ofttimes started quarrels, and had a curt temper. If you are non her mother yous cannot stay with her" Respondent CG#26

In summary, the greatest impediments to epilepsy care cited past the respondents were stress and lack of knowledge regarding epilepsy and epilepsy intendance. However, other personal barriers included mental health problems, challenges in seeking mainstream medical care, anti-epileptic drug non-adherence, unhealthy lifestyles and functional impairments.

Family unit and customs level barriers

Table ii shows the family unit and community level barriers to epilepsy care with sub-themes and illustrative quotes. Family issues, caregiver burden and lack of community support were the three important subthemes cited by the respondents.

Tabular array two Perceived family and community level barriers to epilepsy care

Full size table

Family problems

Lack of family back up and stigmatizing behavior by immediate family members were perceived every bit important barriers to epilepsy care:

"You have epilepsy and then don't bear on my stuff". Respondent PR#four:

A barrier to taking epilepsy medications was lack of back up or reminders from the family unit members.

"You could exist living with someone who can't even remind you to swallow your medicine specially when you are nonetheless young". Respondent PR#5

Several written report participants reported insults or name calling from their family members.

"At school, I tin can get simply one attack and then my colleagues isolate me. My friend who used to help me, has stopped sharing a seat with me, they say that when they sit with me I would infect them with epilepsy". Respondent PR#11

Customs issues

Stigmatization from the community, as well as from family, compounded the lack of support and increased isolation felt by PLWE:

"When yous have this disease people isolate you a lot and people start proverb, "There is a style they phone call it that sounds so bad, "Epilepsy" or 'epileptic', I would prefer a discussion like convulsions/seizures"." Respondent PR#one

Lack of community awareness

The study participants felt strongly that there was a lack of attention to educating the community about epilepsy.

"People used to tell me, "that kid is suffering from witchcraft all they advised was trying out several traditional healers," it seems those people (referring to us) sacrificed that child to the gods' that we used some night magic which backfired or that we sacrificed him and that that was why the child was getting those attacks". Respondent CG#27

Caregiver burden

The study participants were quite vocal about the onerous burden faced in the day-to-day efforts in caring for a PLWE. As shown in Table two, the lack of correct information about epilepsy intendance left most of caregivers to resort to 'trial and error' methods. This was aggravated by changes in their roles, decreased household income, and increased caregiver responsibilities, often resulting in concrete and emotional stress for the caregivers:

The brunt of providing all basic needs in life and report participants cited performing well-nigh of the chores for the patients.

" I have to have care of her because most people find them (patients) disgusting because when it attacks, they drip saliva. Some people think that it is contagious. Of form I don't feel good because my colleague (partner) who could have supported me, left, am now the only 1 supporting her". Respondent CG#26

Healthcare system and provider level barriers

Table 3 shows subthemes and quotes describing healthcare system and provider level barriers to epilepsy care. 2 of import categories of barriers involving access to health intendance issues and provider problems were identified.

Tabular array three Perceived healthcare organization and provider level barriers to epilepsy intendance

Full size tabular array

Admission to healthcare system bug

Limited health care provider interaction and altitude to health centers were major problems, run into Tabular array three. Health facilities were reported to be located far from patients' homes and bulk of people faced challenges in reaching these centers, as either they did not ain or had difficulties with out of pocket to come across the transport costs. This was compounded by long waiting times to see a doctor and sometimes being triaged to another hospital:

"I rarely skip a dose but at that place are times when I run out of pills and all the same I don't have whatsoever money to come here. And so you spend days before getting coin to come up here so skip some doses." Respondent PR# 10

Wellness care provider issues

Table iii also displays barriers to receiving epilepsy care from health care providers. In improver to date difficulties, poor attitudes towards patients, inadequate diagnostic evaluation, and lack of follow upwardly as well as poor written and verbal communications were reported.

Participants reported limited patient-wellness worker interaction at the wellness centers they attend.

"Simply they don't requite you much time. I used to have … dizziness, whenever I shared it with the doctor, he would respond, "Just swallow your medicine." When I returned the following day with the same trouble he said, "It seems you are not taking your medication" and yet I was swallowing it. Merely now I am seeing other medicines that I don't even understand". Respondent PR#2

The study participants reported strongly nearly the demand for increasing epilepsy awareness in the customs as part of care and stigma reduction efforts. Every bit shown in Table 4, various ideas regarding how to disseminate epilepsy data like property customs instruction meetings and seminars, door to door visits by wellness workers, engaging local leaders to spearhead projects, besides as using print and local media to spread the word nearly epilepsy.

"I but request the government to become the states medicine that is for complimentary". Respondent #PR3:

"To some of us, this disease hinders usa from working to raise money. The regime should aid us and offer the medicine for free since this illness hinders one from working to become money. How will you lot work if you have that illness?" Respondent #PR5

Participants suggested the creation of more than facilities treating epilepsy to reduce burden.

"If a fund is available, personally I remember it doesn't matter if they don't requite it to us the people simply they create more health facilities in different areas that nourish to people with this kind of illness". Respondent PR#4

Some proposed refresher courses in affliction management for health care providers.

"The care providers that care for us could be trained mayhap some of them are merely giving out tablets merely don't know much about the illness". Respondent #PR19

Participants reported that they should at least be screened before giving them AEDs and change drugs given where necessary.

"They should change the medicine and too start testing united states to know what kind of illness is in your body". Respondent #PR5:

Participants recommended that health care providers treat patients' politely/well.

"The intendance providers should work on their manners too; if I speak to you calmly I don't desire you to yell back. Care providers should work on that". Respondent PR#three

Providing counseling and instruction to caregivers and family unit members was suggested.

"I retrieve they should make a coming together with the people that we live with and requite them some counseling at showtime. For some patients that have said that they get stressed, sometimes it is because someone (a caregiver) who yells at them or exercise other things. So they should observe a fashion of teaching them such that they larn how to handle that patient". Respondent PR#xiv

With a sense of being ignored past the customs, report participants recommended a cocky-help group arroyo among themselves every bit a way to lessen this sense of isolation felt past PLWE.

Table four Participants' recommendations for increasing epilepsy awareness in the customs

Full size table

Discussion

In community settings, PLWE may be hard to reach, socially isolated, stigmatized and excluded from clinical studies. This qualitative analysis identified and described barriers to epilepsy care in PLWE and their caregivers in a Ugandan population. Findings build upon emerging inquiry and are intended to advance epilepsy care and target underserved individuals in customs settings.

The study noted that private; family/customs and health care issues were important barriers to epilepsy care in this study. This is coherent with McLeroy'southward social ecological model of wellness behavior [17], which suggests that behavior, actions, and events, are influenced by individual, interpersonal, organizational, community and policy factors. An understanding of these factors can aid with developing appropriate interventions, targeting and addressing these challenges in PLWE.

Individual factors

The individual factors such equally poverty, lack of acceptable knowledge, attitudes, stigmatization and coping skills are important issues that impact on epilepsy intendance and stigma reductions in PLWE and their caregivers. The majority of PLWE in this sample did not know the crusade of epilepsy and the associated precipitating factors. Our finding is consistent with earlier studies on epilepsy knowledge and attitudes in Republic of uganda and other similar settings in Africa [4, 18,xix,twenty]. Having the right cognition, attitudes and resources to provide adequate epilepsy management in PLWE and their caregivers' influences the preferred pick of care either traditional healers or mainstream medicine.

PLWE or their caregivers especially in resource limited settings lack the required information most their disease condition including the potential triggers and precipitants of seizures, role of treatment, function of supportive care and the associated anti-epileptic drugs adverse effects [21, 22]. This subsequently may atomic number 82 to the development of negative attitudes and reduced expectations regarding epilepsy, [19, 23, 24]. Lack of noesis eventually influences decision-making with respect to AEDs adherence, provision of funds for out of pocket purchase of anti-epileptic drugs by the caretakers and subsequently control of seizures.

Interpersonal and social back up networks

The close social support systems involving the firsthand family, occupation group, and friend networks profoundly bear upon on wellness intendance seeking behaviors of PLWE and they are in a primal position to provide support or guide choices to people living with epilepsy. Wellness care seeking and self-direction behaviors often take place in a shared family unit environment and in the context of a myriad of relationships that naturally involve individuals beyond the patient [25]. This close interpersonal network provides both general support, such as emotional back up, and epilepsy-specific support, including reminders for taking medications, going to md appointments and provision of out of pocket for anti-epileptic medications [26]. Lack of this interpersonal support may enhance behaviors like non-medical adherence, failure to seek mainstream medical intendance and reluctance on refilling their medications especially when they felt amend as cited by the study participants. This may be due to inadequate information regarding their disease or resorting to traditional healers within the immediate family members and social back up networks [half dozen, 27]. Advocating for increased awareness inside caregivers and communities would help address this lack of knowledge. Studies accept shown that social support is associated with improve self-management and health outcomes especially when information technology is encouraging, enhances patient autonomy, or fosters family cohesion [28, 29]. Tailored and focused educational sessions for epilepsy that likewise includes stress management practices, recognizing symptoms of stress and PTSD, should be incorporated into patient care provision and customs outreach programs.

Institutional factors

In this study, both PLWE and caregivers reported difficulties in accessing health care challenges with the health care providers. Admission to health care was mainly related to the distance and transport bug. Majority of the health centers are within towns or cities leaving most of the rural areas within Uganda, underserved. There is a need to create and strengthen the bachelor public-private partnerships within the written report area that provide health care and mobilize the districts and land networks that can augment the sharing of knowledge, expansion of existing resource and the ability to generate price- effective models for inter-sector and cross-site collaborations on epilepsy management. Offer acceptable and well-positioned centers within rural areas would try to accost this. The development of schedules and policies that are adhered to may accost the problems of patient contact time and education regarding their illnesses [22]. Refresher trainings of health intendance providers are urgently needed to replenish the medical knowledge regarding epilepsy management and how to provide psychosocial support with an aim of improving seizure control. Studies have shown that having a positive attitude amid health care professionals helps to promote advisable beliefs by patients [30,31,32].

Community

Development of a well coordinated and managed systems that establish linkages across sectors of education; health and other health care service providers are urgently needed. This would establish a continuum of services that would nurture health and wellbeing, guaranteeing an approach that support PLWE with acceptable epilepsy intendance. Our findings revealed that stigma was an important obstacle to epilepsy care and is supported past other studies in sub-Saharan Africa [ten, 33]. Despite the demand of both family unit and community support for PLWE, the study participants reported being stigmatized, ostracized past their immediate family members. This high level of stigma and lack of support increases stress and impacts on seizure command. The poor cognition of epilepsy, its causes, prevention and intendance amid the family and community members may be attributed to the stigma [34]. Several study participants reported that epilepsy is contagious through saliva and sharing personal items. More education and community interventions are urgently, needed to accost this. The involvement of caregivers of PLWE in education and self-management care interventions can provide appropriate data for epilepsy care.

Public policy

Epilepsy is generally not recognized as a public health priority, despite the existence of relatively inexpensive and readily available treatment options [35, 36]. The Abuja declaration adopted by heads of state of African union countries in April 2001 was designed to improve social and economical atmospheric condition in the earth's poorest countries by 2015. One of the goals set a target of allocating at least xv% of their annual budget to amend the wellness sector (http://www.who.int/healthsystems/publications/abuja_declaration/en/). Resources allocations for evidence-based treatments for chronic health conditions that are of relatively modest financial outlay (such equally broad-spread use of antiepileptic drugs for epilepsy) may help reduce more costly and crisis-based intendance (such equally accidents and injury associated with poorly controlled seizures). Given the all-encompassing unmet need and barriers to care identified in this study, appropriate and timely access to care for PLWE could positively affect public wellness and lead to more efficient and impactful utilise of scarce healthcare resources.

The failure to have sufficient human being and financial resources, coupled with unrealistic policy targets go along to impact on the provision of proper and adequate epilepsy management and stigma reduction. Developing policies that allocate resources and implementing them to plant and maintain a coalition that serves a mediating construction connecting individuals living with epilepsy and the larger social environs to create a salubrious campus would go a long way in addressing the barriers of epilepsy management.

Finally, addressing the master barrier to epilepsy intendance, which is, limited epilepsy knowledge in PLWE and their caregivers seems a viable starting indicate to improve epilepsy care. Utilizing public health models that take successfully tackled HIV brunt and HIV stigma in Republic of uganda would provide an avenue to reduce epilepsy barriers and improve care.

Limitations

Our study findings on perceived barriers to epilepsy care in PLWE in Republic of uganda have implications for informing policy and care. Notwithstanding, there were some limitations that demand to exist taken into business relationship. Patients with epilepsy and their caregivers, who receive or seek intendance in other settings in Republic of uganda, may accept different experiences with, and unlike types of encounters with providers or healthcare systems from our written report. The small convenience sample utilized in this report and the deport of the report in a single urban area in Uganda may limit transferability of the study findings. Yet, these limitations are commencement, to some extent, by the utilization of rigorous qualitative methods described in the report and our use of the Consolidated Criteria for Reporting Qualitative enquiry (COREQ) [37], to improve the rigor, comprehensiveness and brownie of the interviews and focus groups.

Conclusion

Epilepsy nevertheless remains a big trouble with multiple barriers to care on a patient, community and health system level. This study in a Ugandan urban shows that epilepsy intendance efforts targeting the patient, community, and healthcare arrangement levels are needed to address lack of awareness, inadequate or inaccurate noesis, stigma, poor access, mental health comorbidity and adherence with evidence-based treatments for seizures.

Availability of data and materials

The datasets used and/or analyzed during the current study are available from the corresponding author on reasonable request.

Abbreviations

AEDs:

Anti-epileptic drugs

FGDs:

Focus group discussions

IQR:

Inter-quartile range

PLWE:

People living with epilepsy

PTSD:

Posttraumatic stress disorder

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Acknowledgements

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Funding

The study was supported by a grant from the National Institutes Wellness (K43TW010401 NINDS and Fogarty International Center (FIC) to Mark Kaddumukasa. The contents of this manuscript are solely the responsibility of the authors and practise non necessarily represent the official views of the NIH.

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MK, HN and MNK participated in the design of the report, information collection data analysis and drafted the manuscript. CB participated and guided in the qualitative information assay. CB, SL, EK, NS and MS revised the manuscript for of import intellectual content, helped design the report, draft the manuscript and revise it critically for important intellectual content. All authors read and approved the terminal manuscript.

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Correspondence to Mark Kaddumukasa.

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The institutional review boards (IRB) of Makerere Academy, College of Health Sciences' School of Medicine (Rec Ref: 2017–112) and Uganda National Quango of Science and Engineering (UNCST), SS4486 approved the study. All participants provided written informed consent.

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Kaddumukasa, Chiliad., Nalubwama, H., Kaddumukasa, M.N. et al. Barriers to epilepsy care in Central Uganda, a qualitative interview and focus grouping report involving PLWE and their caregivers. BMC Neurol xix, 161 (2019). https://doi.org/x.1186/s12883-019-1398-z

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Keywords

  • Epilepsy
  • Seizures
  • Barriers
  • Sub –Saharan Africa

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