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BACKGROUND: Complications of prematurity are the leading cause of neonatal mortality, and the majority of these deaths occur in low and middle-income countries. Research in these settings has focused on improved outcomes for preterm infants in hospital settings, however, research into the continuation of preterm care in the home after discharge from a neonatal unit is limited. This study examines the experiences and perceptions of caregivers of preterm infants during the initial weeks following discharge from a neonatal unit in Uganda, and the views of healthcare workers (HCWs) on the ability of caregivers to cope. METHODS: This qualitative study used multiple data collection approaches, namely focus group discussions (FGDs), in-depth interviews (IDIs), field observations, and case studies to explore the perceptions and experiences of providing care to preterm infants post-discharge from a neonatal unit in eastern Uganda from the perspectives of caregivers and HCWs. RESULTS: We recruited 39 participants with a total of 35 separate sessions including 18 IDIs (12 caregivers and 6 HCWs), 3 FGDs (17 caregivers), and 4 case studies (14 separate IDIs over 5 weeks after discharge, three mothers, and one grandmother). IDIs and FGDs took place at the Mbale Regional Referral Hospital or in participants' homes. Key themes emerged; preparation for continuing care in the home, psychosocial challenges to providing preterm care in the home, barriers to continuing preterm care in the home, and suggestions for improvement of preterm care in the home. Caregivers had good knowledge and awareness about different aspects of preterm care. Following discharge, caregivers struggled to maintain quality care due to loss of continuous support from the neonatal team, feelings of anxiety and isolation, financial issues, and home responsibilities. CONCLUSION: This study highlights multiple challenges to continuing preterm care in this Ugandan setting. Improved training and education for caregivers, especially in neonatal resuscitation, enhanced and continued support of the caregiver and infant in the home, and increased community involvement following discharge may all be key solutions. These findings are fundamental to improving care in the home for preterm infants in eastern Uganda and similar settings.
Asunto(s)
Cuidadores , Alta del Paciente , Lactante , Femenino , Recién Nacido , Niño , Humanos , Cuidadores/psicología , Recien Nacido Prematuro/psicología , Uganda , Cuidados Posteriores , Resucitación , Investigación Cualitativa , Personal de SaludRESUMEN
Background: Worldwide, 1.7 million children younger than 15 years were living with HIV in 2021. Only 52% of them had access to antiretrovirals (ARVs). Lack of age-appropriate ARV formulations (i.e. easy to swallow for young infants, acceptable taste) remains the main obstacle to the access to ARVs. Therefore, a strawberry-flavoured Abacavir/Lamivudine/Lopinavir/Ritonavir (30/15/40/10 mg) fixed-dose combination of granules in a capsule (4-in-1) for children living with HIV weighing 3-25 kg was developed. Objective: We assessed caregivers' perceived acceptability of the 4-in-1 compared with previous paediatric ARV formulations and factors influencing acceptability. Methods: This exploratory qualitative case study embedded in a phase I/II, open-label, randomized cross-over pharmacokinetic, safety and acceptability study (LOLIPOP) was conducted in three sites in Uganda (May 2019-October 2020). Thirty-six children weighing between 3 and 19.9 kg participated in the main study. We purposively sampled caregiver-child dyads according to weight bands, and conducted 20 semi-structured interviews with caregivers and 5 with healthcare providers. We triangulated these results with a quantitative acceptability questionnaire. We analysed interviews inductively using NVivo12 adopting a thematic analysis approach and acceptability questionnaires descriptively to assess concordance between them. Results: All caregivers found the 4-in-1 formulation highly acceptable and easier to use than previous formulations (i.e. pellets/tables/syrup). Appealing taste, ease of administration, easy storage and children's acceptance contributed to acceptability despite structural challenges of food shortage and HIV stigma. Visible improvements in children's health and comprehensive and tailored healthcare provider support to overcome initial difficulties such as vomiting increased caregivers' acceptance. Concordant results from questionnaire- and interview-data confirmed high acceptability. Conclusion: Caregivers of children in all weight bands in this sample found the 4-in-1 granules highly acceptable compared with the pellets/tablets combination. Healthcare providers' support to caregivers allowed for individual tailoring of drug administration despite challenges such as food shortage. This enabled short-term adherence. These findings informed further practical recommendations. Registration: Clinical trial number: NCT03836833.
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This study was performed to determine (a) the age at which autism spectrum disorder (ASD) is first diagnosed in Ugandan children receiving mental health services, (b) whether age at diagnosis varies by sex and clinical presentation, and (c) the average age of ASD diagnosis in children manifesting comorbid conditions. A retrospective chart review was performed and demographic as well as clinical data were collected from children with ASD diagnoses who attended two mental health clinics in Uganda between 2014 and 2019. Descriptive statistics such as percentages, means, and standard deviations were used to summarize the data. Independent t-test was also performed to determine differences in the mean age of diagnosis between males and females. Two hundred and thirty-seven (156 males, 81 females) children with ASD were identified. The average age of ASD diagnosis was (6.9 ± 4.0) years. A statistically significant difference in age of ASD diagnosis was found between males and females (t = -2.106, p = 0.036), such that on average females received a diagnosis at least 1 year later than males. Of the 237 participants, 53.6% were identified with ASD only, 16.0% had ASD and ADHD, 10.5% were diagnosed with ASD and epilepsy, and 7.2% had a diagnosis of complex ASD. The results confirm delays in access to ASD diagnosis and suggest that females are more likely to receive a ASD diagnosis later than males within the Ugandan context. ASD awareness should be intensified to improve public or professional knowledge about ASD to enhance early identification in Uganda.
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Trastorno del Espectro Autista , Trastorno del Espectro Autista/diagnóstico , Trastorno del Espectro Autista/epidemiología , Población Negra , Niño , Preescolar , Femenino , Humanos , Masculino , Estudios Retrospectivos , Caracteres Sexuales , Uganda/epidemiologíaRESUMEN
BACKGROUND: Human milk is the best nutrition for all infants. When the mother's own milk is not available, the World Health Organization recommends the use of donated human milk and milk banking for neonates born prematurely or with medical problems. Donor human milk is rarely available in low-resource settings where both the rates of preterm birth and neonatal mortality are highest. The potential to reduce neonatal mortality through use of donated human milk is one that is yet to be fully explored in the African setting. For the introduction of any new health intervention to be successful, determining the barriers and facilitators to its acceptability is a vital first step. There are limited studies on this in sub-Saharan Africa. METHODS: This qualitative study used focus group discussions and in-depth interviews to explore the potential barriers and facilitators to utilizing donated human milk for neonates in a hospital setting in eastern Uganda from the perspectives of caregivers (parents, grandparents) and healthcare workers. RESULTS: Six focus group discussions involving 28 caregivers were conducted in a hospital setting in eastern Uganda. Four in-depth interviews were then also held with healthcare staff. Lack of knowledge of donated human milk emerged with discussants, and the barriers relating to transmission of infection (HIV) and poor hygiene. Common reasons which facilitated its acceptability were; a general knowledge and recognition that human milk is better than formula milk and a strong belief by caregivers in healthcare workers providing knowledgeable and safe care. Healthcare workers were supportive of introducing donor human milk but perceived a need for community and hospital education programs to enable this to be facilitated and scaled up. CONCLUSIONS: This study shows that donor human milk can be acceptable to the caregivers of vulnerable babies in hospital settings in Uganda. Lack of awareness of donor human milk, its benefits and the methods of screening, acquisition and storage of donor milk are all barriers that could be addressed through improved education. This study advocates for national policies and programs that build capacity for effective and sustainable donor milk banking.