Transition from hospital to home care for preterm babies: a qualitative study of the experiences of caregivers in Uganda

Improving care for preterm babies could significantly increase child survival in low-and middle income countries. However, attention has mainly focused on facility-based care with little emphasis on transition from hospital to home after discharge. Our aim was to understand the experiences of the transition process among caregivers of preterm infants in Uganda in order to improve support systems. A qualitative study among caregivers of preterm infants in Iganga and Jinja districts in eastern Uganda was conducted in June 2019 through February 2020, involving seven focus group discussions and five in-depth interviews. We used thematic-content analysis to identify emergent themes related to the transition process. We included 56 caregivers, mainly mothers and fathers, from a range of socio-demographic backgrounds. Four themes emerged: caregivers’ experiences through the transition process from preparation in the hospital to providing care at home; appropriate communication; unmet information needs; and managing community expectations and perceptions. In addition, caregivers’ views on ‘peer-support’ was explored. Caregivers’ experiences, and their confidence and ability to provide care were related to preparation in the hospital after birth and until discharge, the information they received and the manner in which healthcare providers communicated. Healthcare workers were a trusted source of information while in the hospital, but there was no continuity of care after discharge which increased their fears and worries about the survival of their infant. They often felt confused, anxious and discouraged by the negative perceptions and expectations from the community. Fathers felt left-out as there was very little communication between them and the healthcare providers. Peer-support could enable a smooth transition from hospital to home care. Interventions to advance preterm care beyond the health facility through a well-supported transition from facility to home care are urgently required to improve health and survival of preterm infants in Uganda and other similar settings

Prevalence and associated factors of neurodevelopmental disability among infants in eastern Uganda: a population based study.

BACKGROUND: Neurodevelopmental disability (NDD) is increasingly acknowledged as one of the important causes of disease burden in low income countries. None the less, there is a dearth of data on the burden of NDD and its determinants in these settings. We aimed to establish the prevalence and factors associated with NDD among infants in Eastern Uganda. METHODS: We assessed 487 infants aged 9-12 months within Iganga-Mayuge Health Demographic Surveillance Site in Eastern Uganda using the Malawi Developmental Assessment Tool. The tool has four domains: gross motor, fine motor, language and social domains. An infant failed a domain if she/he failed more than two parameters of the expected at his/her age. We interviewed mothers on factors that could influence the infants' neurodevelopmental outcomes. Data were analysed using STATA version 14. We used odds ratios and 95% confidence intervals to assess statistical significance of associations. RESULTS: Of the 487 infants, 62(12.7%) had an NDD in at least one of the domains. The most affected was social behaviour where 52(10.7%) infants had an NDD. Severe impairment was seen among 9(1.8%) infants with NDD in either three or four domains. Factors associated with NDD at multivariate logistic regression included: parity of more than three children (aOR = 1.8, 95% CI: 1.02-3.18); failure to cry at birth (aOR = 3.6, 95% CI: 1.46-9.17) and post-neonatal complications (aOR = 4.15, 95% CI: 1.22-14.10). Low birth weight, immediate and exclusive breast feeding were not significantly associated with NDD. CONCLUSION: We found a high NDD burden among infants particularly in the social behaviour domain. To optimise the socio-neural development of infants, programs are needed to educate and work with families on how to engage and stimulate infants. Existing immunisation clinics and community health worker strategies provide an excellent opportunity for stemming this burden

Uganda's experience in Ebola virus disease outbreak preparedness, 2018-2019.

BACKGROUND: Since the declaration of the 10th Ebola Virus Disease (EVD) outbreak in DRC on 1st Aug 2018, several neighboring countries have been developing and implementing preparedness efforts to prevent EVD cross-border transmission to enable timely detection, investigation, and response in the event of a confirmed EVD outbreak in the country. We describe Uganda's experience in EVD preparedness. RESULTS: On 4 August 2018, the Uganda Ministry of Health (MoH) activated the Public Health Emergency Operations Centre (PHEOC) and the National Task Force (NTF) for public health emergencies to plan, guide, and coordinate EVD preparedness in the country. The NTF selected an Incident Management Team (IMT), constituting a National Rapid Response Team (NRRT) that supported activation of the District Task Forces (DTFs) and District Rapid Response Teams (DRRTs) that jointly assessed levels of preparedness in 30 designated high-risk districts representing category 1 (20 districts) and category 2 (10 districts). The MoH, with technical guidance from the World Health Organisation (WHO), led EVD preparedness activities and worked together with other ministries and partner organisations to enhance community-based surveillance systems, develop and disseminate risk communication messages, engage communities, reinforce EVD screening and infection prevention measures at Points of Entry (PoEs) and in high-risk health facilities, construct and equip EVD isolation and treatment units, and establish coordination and procurement mechanisms. CONCLUSION: As of 31 May 2019, there was no confirmed case of EVD as Uganda has continued to make significant and verifiable progress in EVD preparedness. There is a need to sustain these efforts, not only in EVD preparedness but also across the entire spectrum of a multi-hazard framework. These efforts strengthen country capacity and compel the country to avail resources for preparedness and management of incidents at the source while effectively cutting costs of using a "fire-fighting" approach during public health emergencies

Pregnancy planning among female sex workers in Uganda: evaluation of the psychometric properties of the london measure of unplanned pregnancy

The aim of the study was to evaluate the psychometric properties of the London Measure of Unplanned Pregnancy (LMUP) among female sex workers (FSWs) in Uganda. The LMUP was translated into Luganda and adapted for use with FSWs and underwent cognitive testing and two field tests. From the final Luganda LMUP, three other language versions were created (Acholi, Lugisu and Runyakole), and preliminary field test data were collected. Final data were collected from 819 FSWs attending the 'Most at Risk Population Initiative‘ clinics. The Luganda field testing showed that there were no missing data, the scale was well targeted, Cronbach‘s alpha was 0.82, weighted Kappa was 0.78, measurement was unidimensional, and all construct validity hypotheses were met. Likewise, with the Acholi, Lugisu, and Runyankole translations, field testing showed that there were no missing data, the scales were well targeted, Cronbach‘s alpha were>0.70, and measurement was unidimensional. We concluded that the Luganda LMUP is a valid and reliable tool for assessing pregnancy planning among FSWs in Uganda and that the Acholi, Lugisu, and Runyankole versions of the LMUP also had good initial psychometric propertiesLe but de l'étude était d'évaluer les propriétés psychométriques de la mesure de Londres de la grossesse non planifiée (MLGNP) chez les femmes prostituées (FPs) en Ouganda. Le MLGNP a été traduit en luganda et adapté aux (FPs). Il a été soumis à des tests cognitifs et à deux tests sur le terrain. À partir de la version finale de Luganda MLGNP, trois autres versions linguistiques ont été créées (acholi, lugisu et runyakole) et des données de test de terrain préliminaires ont été collectées. Les données finales ont été recueillies auprès de 819 prostituées qui fréquentent les cliniques de l‘«Initiative pour la population la plus exposée au risque». Les essais sur le terrain en Luganda ont montré qu‘il n‘y avait pas de données manquantes, l‘échelle était bien ciblée, le coefficient alpha de Cronbach était de 0,82, le kappa pondéré de 0,78, la mesure était unidimensionnelle et toutes les hypothèses de validité de construction étaient remplies. De même, avec les traductions Acholi, Lugisu et Runyankole, des essais sur le terrain ont montré qu‘il n‘y avait pas de données manquantes, que les échelles étaient bien ciblées, que le coefficient alpha de Cronbach était supérieur à 0,70 et que les mesures étaient unidimensionnelles. Nous avons conclu que le MLGNP de Luganda est un outil valide et fiable d‘évaluation de la planification de la grossesse chez les FPs en Ouganda et que les versions acholi, Lugisu et Runyankole du MLGNP avaient également de bonnes propriétés psychométriques initiales.Keywords: Female sex workers, pregnancy planning, psychometric validation, UgandaAfr J Reprod Health 2019; 23[3]: 79-9

‘As soon as the umbilical cord gets off, the child ceases to be called a newborn’: sociocultural beliefs and newborn referral in rural Uganda

Background: The first week of life is the time of greatest risk of death and disability, and is also associated with many traditional beliefs and practices. Identifying sick newborns in the community and referring them to health facilities is a key strategy to reduce deaths. Although a growing area of interest, there remains a lack of data on the role of sociocultural norms and practices on newborn healthcare-seeking in sub-Saharan Africa and the extent to which these norms can be modified. Objective: This study aimed to understand the community's perspective of potential sociocultural barriers and facilitators to compliance with newborn referral. Method: In this qualitative study, focus group discussions (n=12) were conducted with mothers and fathers of babies aged less than 3 months. In addition, in-depth interviews (n=11) were also held with traditional birth attendants and mothers who had been referred by community health workers to seek health-facility-based care. Participants were purposively selected from peri-urban and rural communities in two districts in eastern Uganda. Data were analysed using latent content analysis. Results: The community definition of a newborn varied, but this was most commonly defined by the period between birth and the umbilical cord stump falling off. During this period, newborns are perceived to be vulnerable to the environment and many mothers and their babies are kept in seclusion, although this practice may be changing. Sociocultural factors that influence compliance with newborn referrals to seek care emerged along three sub-themes: community understanding of the newborn period and cultural expectations; the role of community health actors; and caretaker knowledge, experience, and decision-making autonomy. Conclusion: In this setting, there is discrepancy between biomedical and community definitions of the newborn period. There were a number of sociocultural factors that could potentially affect compliance to newborn referral. The widely practised cultural seclusion period, knowledge about newborn sickness, individual experiences in households, perceived health system gaps, and decision-making processes were facilitators of or barriers to compliance with newborn referral. Designers of newborn interventions need to address locally existing cultural beliefs at the same time as they strengthen facility care

Newborn Care Practices among Adolescent Mothers in Hoima District, Western Uganda.

Adolescent childbearing remains a major challenge to improving neonatal mortality especially in Sub Saharan countries which are still struggling with high neonatal mortality rates. We explored essential newborn care practices and associated factors among adolescent mothers in Western Uganda.Data were collected among 410 adolescent mothers with children aged one to six months in Hoima district. Three composite variables (appropriate neonatal breastfeeding, cord care and thermal protection) were derived by combining related practices from a list of recommended newborn care practices. Logistic regression analysis was conducted to identify factors independently associated with practice of essential newborn care.Appropriate newborn feeding, optimal thermal protection and dry cord care were practiced by 60.5%, 67.2% and 31% of adolescent mothers respectively. Independent predictors' of cord care were: knowledge of cord care (AOR 5.34, 95% CI (1.51-18.84) and having delivered twins (AOR 0.04, 95% CI (0.01-0.22). The only predictor of thermal care was knowledge (AOR 25.15, 95% CI (7.01-90.20). Staying in a hospital for more than one day postpartum (AOR 2.45, 95%CI (1.23-4.86), knowledge of the correct time of breastfeeding initiation (AOR 14.71, 95% CI (5.20-41.58), predicted appropriate neonatal feeding, whereas; adolescent mothers who had had a caesarean delivery (AOR 0.19, 95% CI (I 0.04-0.96) and a male caretaker in the postnatal period (AOR 0.18, 95% CI (0.07-0.49) were less likely to practice the recommended newborn feeding.Sub optimal essential newborn care practice was noted especially suboptimal cord care. Adolescent mothers should be a focus of strategies to improve maternal and neonatal health

Caring for children with neurodevelopmental disability : Experiences from caretakers and health workers in rural eastern Uganda

Background: Long term outcomes of children with neurodevelopmental disability are influenced by the condition itself, available health services and caretakers' coping ability to nurture the children which may be related to their beliefs and experiences. Most children with neurodevelopmental disabilities live in resource constrained settings. To inform design of contextually appropriate interventions, this study explored health workers' and caretakers' experiences in caring for infants with neurodevelopmental disability in rural eastern Uganda. Methods: A qualitative case study was carried out in December 2017 and involved in-depth interviews with 14 caretakers of infants with severe neurodevelopmental disability, and five health workers in Iganga/Mayuge Demographic Surveillance Site in eastern Uganda. The interviews with caretakers were conducted inLusoga, the local language, and in English for the health workers, using a pre-determined open-ended interview guide. Data were analyzed using latent content analysis. Results: Caretakers described the experience of caring for children with neurodevelopmental disability as impoverishing and 'imprisoning' due to high care costs, inability to return to income generating activities and nursing challenges. The latter resulted from failure in body control and several aspects of nutrition and maintaining vital functions, coupled with limited support from the community and the health system. Many caretakers expressed beliefs in supernatural causes of neurodevelopmental disability though they reported about complications during and shortly after the birth of the affected child. Care-seeking was often challenging and impeded by costs and the feeling of lack of improvement. The health care system was also found to be incapable of adequately addressing the needs of such children due to lack of commodities, and human resource limitations. Conclusion: The caretakers expressed a feeling of emotional stress due to being left alone with a high nursing burden. Improvement in the health services including a holistic approach to care, improved community awareness and parental support could contribute to nursing of children with NDD