Lived experiences of caregivers of persons with epilepsy attending an epilepsy clinic at a tertiary hospital, eastern Uganda: A phenomenological approach

Abstract Introduction: Epilepsy has been found to affect caregivers quality of life, life style, psychological health, social well-being and their working time. Caregivers in Uganda as in the rest of the world are important in assisting a person with epilepsy in complying with medical directions and can be actively involved in communicating with health care professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of the study was to determine the lived experiences of caregivers of persons with epilepsy attending the epilepsy clinic at Mbale regional referral hospital, eastern Uganda. Methods and materials: Forty participants were selected for the study through purposive sampling. Face to face in-depth interviews with unstructured interview guide were conducted to gather participants information. The investigator conceptualized the interview guide, reviewed by co-investigators, and revised and approved as the final data collection instrument after an extensive and comprehensive literature review. The interview guide comprised of two sections, the first section comprised of the questions that elicited the participants social demographic information. The second section comprised questions that explored caregivers experiences of persons afflicted with epilepsy. Notations were taken and a digital recorder was used purposely for audio-recordings. All interviews lasted for an hour and were audio-recorded with the participants consent. An inductive thematic analysis was employed and adopted to identify the patterns emerging from the texts. Results: The caregivers majorly perceived epilepsy as a burden. Four main themes were revealed from the analysis and these are; psychological, social, economic, and physical burdens. Conclusion: The caregivers majorly perceived epilepsy as a serious burden. This burden can be psychological, social, economic, and physical. Therefore, services and plans targeting patients with epilepsy need to consider the burden that caregivers encounter to comprehensively manage epilepsy and its resultant burden.

is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted August 30, 2022. ; https://doi.org/10.1101/2022.08.29.22279325 doi: medRxiv preprint 4 67 to epilepsy [9]. Social rejection of epilepsy victims, being barred form marriage and 68 employment has also been associated with an increased burden of epilepsy in the community 69 [10]. In East and South-central Africa, stigma from epilepsy has been associated with low is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Face-to-face in-depth interviews with an unstructured interview guide were conducted to 126 gather participants' information. Unstructured interview [18] is a "conversation with a 127 purpose" and enables researchers to obtain in-depth information. "It is also described as a 128 shared experience in which researchers and interviewees come together to create a context of 129 conversational intimacy in which participants feel comfortable telling their story". The understanding. The aim was to ascertain and explore lived experiences about care of a patient 132 with epilepsy. The interview guide was pretested among caregivers attending the same clinic 133 who consented to take part in the pilot study. Necessary adjustments were later done to ensure 134 clarity. Results from the pilot survey were not considered during the final analysis. Before the 135 interview began, verbal and written informed consent were obtained from the participants.

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Understanding was ensured among the prospective participant on the aims and scope of the 137 study. The interview guide was conceptualized by the investigator, reviewed by co-. CC-BY 4.0 International license It is made available under a perpetuity.
is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint investigators, and revised and approved as the final data collection instrument. This was after 139 a thorough literature review. Distractions during the interview process was avoided as much 140 as possible by conducting the interviews in quiet secluded rooms. The quiet rooms were 141 assumed to be a neutral setting and would encourage freedom of speech among the participants.

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The presence of a trained and experienced qualitative researcher was ensured during the 143 interview. The experienced qualitative researcher also assisted in taking note of the non-verbal  Data analysis and presentation 153 The collection and analysis of the data were done simultaneously. The In-depth interviews were 154 audio recorded and later subjected to a careful verbatim transcription. An inductive thematic 155 analysis was employed and adopted to identify the patterns emerging from the texts. Flexibility is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted August 30, 2022. ; https://doi.org/10.1101/2022.08.29.22279325 doi: medRxiv preprint 8 163 till all the concepts were identified and the resultant categories were coherent and meaningful.  informants. Before data collection, participants were given a detailed explanation of what the 176 study was about then they were given a consent form to sign. All participants' information was 177 handled confidentially, all data were limited to the investigators and no name but rather study 178 numbers of participants was used during and after the study. The study was voluntary, refusal 179 or withdrawal from the study was addressed by explaining to the participants that the study was 180 for academic purposes and that all information provided would be kept confidential. During 181 data collection and data analysis individuals' rights and consent was sought and assured of 182 confidentiality and anonymity. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Out of the thirty care givers that were interviewed, 16(53%) were females and 14(47%) of the 186 participants were males. Majority, 20(67%) of the participants were married, 09(30%) were 187 single and 01(3%) of the participants was divorced. With regards to education, majority,  is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted August 30, 2022. ; https://doi.org/10.1101/2022.08.29.22279325 doi: medRxiv preprint 10 208 interference with personal relationship with others, time for one's self, feelings after separation 209 from the patients and behavioral influence. 211 Psychological burden was expressed differently among care givers, concern about the future 212 lives of their persons was conceptualized among the participants:   However, some participants admitted that they were being well cared for: is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Others expressed no worries at all because they had trust in God and the antiepileptic 249 medication that they were using. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint  is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint However, some of the caregivers expressed no effect on their family. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint

Effects of caring for persons afflicted with epilepsy in day to day life
The copyright holder for this this version posted August 30, 2022. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint  353 Depending on the severity of epilepsy, there may be other health needs which may be so costly. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint   However, others reported that they were comfortable with the situation. is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint  is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint of the participants was a counselor and 01(10%) of the participants was a peer support worker.

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Seven themes emerged out of the interviews that were carried out with the key informants.  They also thought that the care givers felt that it was their obligation to care for their persons:

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"…For them what they feel is that they have to be there for the client to ensure that they get 432 the right drugs, at the right time, in the right dose, they also give a report about the patients is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint The copyright holder for this this version posted August 30, 2022. Some of the participants reported that antiepileptic drugs were available, some said that the 462 institution employed, trained health workers and others said that they received support from 463 some non-government organizations, they had good security, and beds for the patients' use: is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint  is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint Effects of care giving role on care givers personal well being 495 Some of the participants reported that they thought that the caregivers would end up becoming 496 poor, and some reported that they thought that the caregivers experience social, physical and is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint  is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint to be of higher burden to the caregivers. This is due to the fact that they require energy to carry 554 them from places of attack to safer places. This has been reported in other studies elsewhere is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint This study looked at the lived experiences of care givers of persons afflicted with epilepsy 570 attending the epilepsy clinic at Mbale regional referral hospital and revealed that care givers.

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The caregivers majorly describe epilepsy as a major burden affecting different aspects of their 572 lives. Therefore, findings of this study revealed that the care givers of persons afflicted with 573 epilepsy experience psychological, social, economic, and physical burdens as they make efforts 574 to care for their loved ones.

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The health care providers should continue targeting care givers of persons afflicted with 577 epilepsy in their service provision to ensure that their state of health is not adversely affected.

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Services and plans targeting patients with epilepsy need to put into consideration the burden 579 that caregivers encounter in order to comprehensively manage epilepsy and its resultant burden.   is the author/funder, who has granted medRxiv a license to display the preprint in (which was not certified by peer review) preprint We are greatful to the study participants.