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

INTRODUCTION: Epilepsy has been found to affect caregivers' quality of life, lifestyle, psychological health, social well-being, and 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 are actively involved in communicating with healthcare professionals. Little is known about the lived experiences of caregivers of persons afflicted with epilepsy in Uganda. The purpose of this 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: The caregivers' lived experiences were elicited directly from them and their health workers who work with them in the care of the patients. Forty participants which consisted of 30 caregivers and 10 key informant health workers were selected for the study through purposive sampling. Face-to-face in-depth interviews with an unstructured interview guide were conducted to gather participants' information. The principal investigator conceptualized the interview guide, the guide was then 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 two sections; the first section comprised 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 participant's 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 burdens which included, worries about the future of the patient, being looked down upon; social burdens which entailed, affected public relations, feelings of stigma; an economic burden which included interference with the source of income, affected productivity at work; and physical burdens which included, Feelings of uneasiness and disrupted sleep among others. 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.

Psycho-social challenges faced by caretakers of children and adolescents aged 0-19 years with sickle cell disease admitted in a tertiary hospital in Eastern Uganda.

BACKGROUND: Families of children and adolescents living with sickle cell disease face several challenges ranging from psycho-social to social-economic challenges. This study aimed to explore psycho-social challenges experienced by caretakers of children and adolescents aged 0-19 years with SCD and the various coping mechanisms. METHODS: A mixed-methods cross-sectional study was carried out among caregivers of children with SCD who were admitted to the pediatric wards of the Mbale Regional Referral Hospital from September 2019 to November 2019. A total of 333 participants were interviewed using a pretested questionnaire and 11 in-depth interviews were conducted. RESULTS: Most participants 285(85.59%) reported that they experienced psychological challenges and almost all the participants in this study 297(89.19%) experienced social challenges during the care of their patients. Only 36(10.81%) reported not experiencing any social challenges. Almost all the participants reported coping with the situation in various ways of which, 296(88.89%) used acceptance, 9(2.7%) still lived in denial, while 9(2.7%) used talking with others and getting counseled to reduce the intensity of the feelings experienced. Three themes were generated from the in-depth interviews; knowledge of the child's health condition; common symptoms and care, the experience of psycho-social challenges, and coping strategies. CONCLUSION: Sickle cell disease has affected two sets of people; the people living with the disease and those who are caring for their loved ones. Being conscious of this will help health practitioners to be more empathetic to patients and caregivers when treating people living with sickle cell disease. The biggest proportion of caretakers of children and adolescents 0-19 years experienced psycho-social challenges. The main coping strategy used by the caretakers was acceptance.

Birth prevalence of neural tube defects in eastern Africa: a systematic review and meta-analysis.

BACKGROUND: Neural tube defects (NTDs) are associated with high rates of neonatal mortality and morbidity worldwide. The promotion of folic acid fortification and supplementation in pregnant women by the Food and Drug Administration significantly decreased the incidence of NTDs in the United States. This practice is not widely adopted in Eastern Africa countries. We hypothesized that these countries experience a higher burden of NTDs than countries that promote the use of folic acid. We aimed to estimate the birth prevalence of NTDs in the United Nations (UN) Eastern African region. METHODS: PubMed (Medline), Embase, and Cochrane Library databases were systematically searched from inception to December 17, 2021. We included randomized controlled trials or observational studies that reported the prevalence estimates of NTDs in Eastern Africa. Random effects model was used to pool the effect estimates. The GRADE (Grading of Recommendations, Assessment, Development and Evaluation) approach was used to assess the certainty of the evidence. Outcome measures were overall and specific (spina bifida, anencephaly, encephalocele) rates of NTDs per 10,000 births, including live and stillborn cases. RESULTS: The meta-analysis included 20 studies consisting of 752,936 individuals. The pooled prevalence of all NTDs per 10,000 births in Eastern Africa was 33.30 (95% CI: 21.58 to 51.34). Between-study heterogeneity was high (I2 = 97%, p < 0.0001), The rate was highest in Ethiopia (60 per 10,000). Birth prevalence of spina bifida (20 per 10,000) was higher than anencephaly (9 per 10,000) and encephalocele (2.33 per 10,000). No studies on NTDs were identified in 70% of the UN Eastern Africa region. Birth prevalence increased by 4% per year from 1983 to 2018. The level of evidence as qualified with GRADE was moderate. CONCLUSION: The birth prevalence of NTDs in the United Nations region of Eastern Africa is 5 times as high as observed in Western countries with mandatory folic acid supplementation in place. Therefore, mandatory folic acid supplementation of stable foods may decrease the risk of NTDs in Eastern Africa.

Bacterial colonization, species diversity and antimicrobial susceptibility patterns of indwelling urinary catheters from postpartum mothers attending a Tertiary Hospital in Eastern Uganda.

BACKGROUND: Postpartum urinary Catheter-Related Infections (CRIs) are a significant cause of maternal sepsis. Several studies done have reported the presence of mixed populations of bacteria with a significant increase in Extended-Spectrum Beta-Lactamase (ESBL) Enterobacteriaceae spps, Methicillin-Resistant Staphylococcus aureus (MRSA), Multi-Drug Resistant (MDR) bacteria in urine and blood cultures of catheterized patients despite the use of prophylactic antibiotics. This study aimed at determining the bacterial species diversity and susceptibility patterns of indwelling urinary catheters from postpartum mothers attending Mbale Regional Referral Hospital (MRRH). METHODS: A cross-sectional study employing quantitative and qualitative was carried out in MRRH among postpartum mothers with urinary catheters and their care-takers. The purposive non-random sampling strategy was used to collect data using an interviewer-administered questionnaire for the quantitative data collection and in-depth interviews for qualitative data collection. All the data collection tools used were developed, pretested and validated. At the point of de-catheterization, Catheter tips from enrolled participants were cut about 2-3cm below the balloon aseptically into test-tube containing peptone water, sonication technique employed, and incubation done 24hours then cultured to ensure phenotypic identification. An antibiotic sensitivity test was performed using the disc diffusion method following Clinical and Laboratory Standards Institute (CLSI) guidelines. Quantitative data collected was entered in Microsoft Excel and then exported to STATA14 for statistical analysis. Thematic analysis was used to analyse and organise qualitative data by an inductive coding method using Nvivo 12 software. RESULTS: In this study, 208 postpartum mothers participated, the majority of whom were caesarean section mothers of age range 20-24 years and 17 care-takers with a median age of 32 years. The prevalence of catheter tips bacterial colonisation was 98% despite 88.5% of the participants being on broad-spectrum antibiotics. The average duration of catheterisation was 2 days. All bacteria isolates were potential uro-pathogens with a mean occurrence of 2 bacteria species in each urinary catheter tip. The rates of MDR to commonly used antibiotics were high. The urinary catheter size of greater than F14 and duration of catheterization greater than 2 days were significantly associated with the number of bacterial species isolated from each sample. The maintenance care and knowledge of care-urinary catheter care among the care-takers was found sub-optimal. CONCLUSION: There was a high prevalence of catheter colonisation with bacterial spps diversity averaging 2 spps per sample despite use of broad spectrum antibiotics. The MDR rates were high, which calls for routine culture and sensitivity. Health workers practicing obstetric medicine need to pay attention to catheter sizes during catheterisation and its duration. Health education should be part of antenatal and postnatal care education.

KANGAROO MOTHER CARE: A QUALITATIVE STUDY ON THE PRACTICE AND EXPERIENCES OF MOTHERS OF PRETERM NEONATES IN A TERTIARY TEACHING HOSPITAL IN EASTERN UGANDA.

Introduction: Globally, neonatal deaths continues to be a challenge especially to to attainment of sustainable development goal 3. About 4 million neonatal deaths per year, with 99% of the deaths occurring in low and middle resource countries, 75% of these occurring in the first week of life. Prematurity remains an indirect leading cause of mortality and morbidity. Uganda's progress on the improvement of perinatal morbidity and mortality has largely stagnated at 27 deaths per 1,000 live births from the year 2006. One of the cost-effective readily available interventions that would curtail perinatal mortality is kangaroo mother care(KMC)- a low tech four decades old intervention. However challenges about its implementation persist on in Uganda despite intensified implementation and roll-out startegies in 2010. This study, the first of its kind to the best of our knowledge in eastern Uganda sought to find the facilitators and barriers of KMC. Materials and methods: This was a qualitative study using in-depth interviews(IDI) carried out at a tertiary university teaching hospital. Twenty IDIs were carried out among mothers/caretakers using the phenomena theory. After each IDI, each transcript was analyzed by two researchers working independently using NVIVO software version 11 plus (QSR International, Burlington, Massachusetts) and themes and subthemes developed. Results: Majority of mothers/caretakers, were adolescents and young adults and primiparous at 55%. The major facilitators to KMC were supportive staff that facilitated positive attitude, ability to substitute provider and family support.The major barriers were lack of family support, lack of male involvement, maternal stress and poor health and multiple gender roles, infrastructural challenges, and misconceptions associated with preterm births such as early sexual intercourse and lack of herbal medicine use. Conclusion: More facility leadership involvement and engagement of mothers during antenatal, community and promotion of male involvement in sexual and reproductive health matters will improve uptake of KMC. This can be spearheadded by sexual and reproductive health, and neonatal and child health care service providers.