‘I never thought that this baby would survive; I thought that it would die any time’: perceptions and care for preterm babies in eastern Uganda

Objective To explore the current care for and perceptions about preterm babies among community members in eastern Uganda. Methods A neonatal midwife observed care of preterm babies in one general hospital and 15 health centres using a checklist and a field diary. In-depth interviews were conducted with 11 community health workers (CHWs) and also with 10 mothers, six fathers and three grandmothers of preterm babies. Three focus group discussions were conducted with midwives and women and men in the community. Content analysis of data was performed. Results Community members mentioned many features which may correctly be used to identify preterm babies. Care practices for preterm babies at health facilities and community level were inadequate and potentially harmful. Health facilities lacked capacity for care of preterm babies in terms of protocols, health workers’ skills, basic equipment, drugs and other supplies. However, community members and CHWs stated that they accepted the introduction of preterm care practices such as skin-to-skin and kangaroo mother care. Conclusion In this setting, care for preterm babies is inadequate at both health facility and community level. However, acceptance of the recommended newborn care practices indicated by the community is a window of opportunity for introducing programmes for preterm babies. In doing so, consideration needs to be given to the care provided at health facilities as well as to the gaps in community care that are largely influenced by beliefs, perceptions and lack of awareness. “Je n’ai jamais pensé que ce bébé survivrait; j’ai pensé qu’il mourrait à tout moment”: Perceptions et soins pour bébés prématurés dans l’est de l’Ouganda Objectif: Explorer les soins actuels et les perceptions au sujet des bébés prématurés parmi les membres de la communauté dans l’est de l’Ouganda. Méthode: Une sage-femme a observé les soins aux bébés prématurés dans un hôpital général et 15 centres de santé en utilisant une liste de contrôle et un journal de terrain. Des interviews approfondies ont été menées avec 11 agents de santé communautaires (ASC) et aussi avec 10 mères, 6 pères et 3 grands-mères de bébés prématurés. 3 discussions de groupes focalisées ont été menées auprès des sages-femmes et des hommes et femmes dans la communauté. L’analyse du contenu des données a été réalisée. Résultats: Les membres de la Communauté ont cité de nombreuses caractéristiques qui peuvent être correctement utilisées pour identifier les bébés prématurés. Les pratiques de soins pour les bébés prématurés dans les établissements de santé et au niveau de la communautéétaient inadéquates et potentiellement dangereux. Les établissements de santé n’avaient pas la capacité pour les soins des bébés prématurés en termes de protocoles, de compétences des agents de la santé, d’équipement de base, de médicaments et autres fournitures. Toutefois, les membres de la communauté et les ASC ont déclaré accepter l’introduction des pratiques de soins pour prématurés tels que le contact peau contre peau et la méthode kangourou. Conclusion: Dans ce cadre, les soins aux bébés prématurés sont inadéquats à la fois dans le centre de santé qu’au niveau communautaire. Toutefois, l’acceptation des pratiques de soins recommandées pour nouveau-né indiquée par la communauté est une fenêtre d’opportunité pour introduire des programmes pour les bébés prématurés. Ce faisant, une attention doit être accordée aux soins dispensés dans les établissements de santé ainsi qu’aux lacunes dans les soins communautaires qui sont en grande partie influencées par les croyances, les perceptions et le manque de sensibilisation. “Nunca pensé que este bebé sobreviviría; pensaba que moriría en cualquier”: Percepciones y cuidados de bebés prematuros en Uganda del este Objetivo: Explorar los cuidados actuales para y las percepciones sobre bebés prematuros entre los miembros de la comunidad en Uganda del este. Métodos: Una comadrona de neonatos observó el cuidado procurado a bebés prematuros en un hospital general y 15 centros sanitarios, utilizando una lista de control y un diario de campo. Se realizaron entrevistas en profundidad a 11 trabajadores sanitarios comunitarios (TSCs) y a 10 madres, 6 padres y 3 abuelas de bebés prematuros. Se realizaron 3 discusiones de grupo focalizadas con comadronas y mujeres y hombres de la comunidad. Se realizó un análisis de contenido de los datos. Resultados: Los miembros de la comunidad mencionaron muchas características que pueden utilizarse correctamente para identificar bebés prematuros. Las prácticas de cuidado para bebés prematuros en los centros sanitarios y a nivel de la comunidad eran inadecuadas y potencialmente dañinas. Los centros sanitarios no tenían la capacidad de cuidar a los bebés prematuros en términos de protocolos, habilidades de los trabajadores sanitarios, equipamiento básico, medicamentos y otros suministros. Sin embargo, los miembros de la comunidad y TSCs mencionaban que aceptaban la introducción de prácticas de cuidado para prematuros, tales como el de piel-con-piel o la madre canguro. Conclusión: En este emplazamiento, el cuidado de bebés prematuros es inadecuado tanto en los centros sanitarios como a nivel de la comunidad. Sin embargo, la indicación de la comunidad de aceptar las prácticas recomendadas para recién nacidos es una ventana de oportunidad para introducir programas para prematuros. Al hacerlo, es necesario considerar los cuidados ofrecidos en los centros sanitarios al igual que los vacíos existentes en los cuidados comunitarios que están en gran parte influenciados por creencias, percepciones y falta de conocimiento. Millennium Development Goal IV – to reduce child mortality by two-thirds – will not be achieved without significant reductions in newborn mortality rates. Reducing deaths related to preterm birth is a crucial part of reducing overall newborn mortality, because low birth weight and prematurity are the direct causes of 28% of newborn deaths globally (Lawn et al. 2008a, 2005, 2004). Preterm births are a major cause of perinatal deaths, neonatal mortality and long-term morbidity (Goldenberg et al. 2008). Most preterm babies are also of low birth weight, which directly or indirectly contributes to 60–80% of neonatal mortality (Lawn et al. 2008b, 2006). Estimated global rates for premature births are 5–13% for high-income countries and 10–25% for low- to middle-income countries (Lawn et al. 2005; Unicef 2008). The annual low birth-weight rates are estimated at 15% globally and 12% for Uganda, where preterm births account for 25% of newborn deaths (Government of Uganda, 2009). Biomedical explanations of causes of preterm labour include maternal infections, chronic diseases and pregnancy-related complications. Risk factors include low socioeconomic status, advanced maternal age, adolescence, black race, smoking and drug abuse (Goldenberg et al. 2008). Preventing preterm birth is a challenge because only a few risk factors such as infections can be identified during regular antenatal care (ANC) (Goldenberg et al. 2008). In low-income countries (LIC), prevention is even more difficult because few women attend the four recommended visits to ANC facilities (Villar et al. 2001; Carroli et al. 2001a,b), and those who do so come late in pregnancy (Government of Uganda, 2009). Additionally, there are affordability, accessibility and quality-related barriers to obstetric care. Only 41% of births are supervised by trained health workers; the rest are taking place either at home or with traditional birth attendants (TBAs). There is evidence that expensive technologies such as neonatal care units are not prerequisites for handling most cases of preterm births (Darmstadt et al. 2005) but that improving essential affordable newborn care practices (clean cord care, thermal care, and early and exclusive breastfeeding) (Marsh et al. 2002) can be effective if fitted into a comprehensive newborn care package (Kerber et al. 2007). However, we found a dearth of studies that have assessed care for preterm babies from the perspectives of both health facility (supply side) and community care (demand side) in sub-Saharan Africa. The aim of this study was to explore the current care practices at facilities and at home, and related perceptions regarding preterm birth, to inform a community-based, facility-linked newborn intervention (UNEST: Uganda Newborn Study ISRCTN50321130) in rural eastern Uganda. The study was located in two rural districts (Iganga and Mayuge) in eastern Uganda, with a total population of about one million people. Eighty per cent of the population are peasants with 49% of women and 68% of men literate. About 42% of all deliveries in the study area take place in a health facility (Uganda Bureau of Statistics (UBOS) and Macro ORC, 2007). There are various types of community health workers (CHWs) but most are not active because they are neither well coordinated nor supported. About 3500 births per year, of which an estimated 10% are preterm babies, occur in the hospital. Fieldwork took place in two sub-counties in each district, selected because they had relatively active CHW programmes. Among CHWs selected, there was overlap of tasks but not physical proximity. Qualitative methods are conducive to understanding the concepts and perspectives of different groups in the community by enabling them to express their lived realities (Pope Eng et al. 1990). The respondents for each method are shown in Table 1. In preparation for health worker training, an experienced neonatal midwife from a tertiary hospital spent a month (2 weeks in the general hospital and 1 day in each of the 15 health centres). She observed events, behaviours and interactions using a semi-structured checklist (Table 2), and recorded activities and observations in a field diary (Mays 10 mothers, six fathers and three grandmothers of preterm babies. From among the 42 preterm births recorded in the study area hospital over a 6-month period, the mothers of 10 preterm babies were identified because they had supplied complete addresses. Only seven could be interviewed, as three could not be traced. Another three mothers who had delivered a preterm baby at home during the previous 6 months were identified by community members for interview. IDIs with mothers were conducted till saturation. None of the individuals we approached refused to participate. Only one respondent reported having lost her preterm baby. Demographic data were available for 14 respondents. The ages of the respondents ranged from 25 to 45 years; 13/14 women were multi-gravidae; 9/14 were peasants. All were married and 7/14 had attained secondary school education or higher. After the IDIs, we conducted three focus group discussions (FGD) as follows: one for midwives in the hospital and two in the community with parents but not necessarily of preterm babies (one FGD for men and one for women) to establish general community perceptions about preterm births. Participants representing different age groups were identified by local leaders with guidance from the third author (SNK). Towards the end of each community FGD, participants were shown pictures of a mother practicing kangaroo mother care (KMC) so as to assess knowledge thereof, as well as to glean information about their perceptions and considered level of acceptability. In-depth interviews and FGDs were conducted by SNK with a note-taker being present. Both SNK and the note-taker were degree holders and had >5- year experience of interviewing. They were supervised by the first author, a medical doctor who is a native speaker of the local language, Lusoga. All interviews were conducted in Lusoga, tape-recorded and later transcribed into English by the moderator and the note-taker. Data were systematically coded and analysed manually by content analysis, that is, the first three authors rigorously read the scripts independently and coded them (Graneheim & Lundman 2004). Thereafter, they met to compare and agree on the codes. Recurrent and emerging themes were identified and organised into meaningful categories and sub-categories. Relevant quotes were extracted, of which some are presented verbatim. The data collected from the picture viewing were analysed through free listing of opportunities and challenges of preterm care. Ethical approval was provided by the Makerere University School of Public Health Ethics Board. During the health facility observation, any errors identified in the care of a baby were corrected immediately. Health facilities lacked capacity for preterm care in terms of infrastructure, practices, skills, equipment, drugs and other supplies. Only the hospital had a neonatal resuscitation kit, 7/16 had a delivery kit and 7/16 had a weighing scale. Neonatal drugs such as injectable ampicillin and gentamycin were generally lacking, and when needed, parents would be asked to buy them from nearby drug shops and pharmacies. Only 2/16 of the health facilities had a midwife trained in newborn resuscitation. No health unit had a for the care of preterm babies. Preterm babies were in which had many control for the preterm babies None of the health units skin-to-skin care or To babies were in many was to babies on of practices were reported in interviews with community level health units preterm babies to the hospital. However, during of care or was We not any for the care of preterm babies. The CHWs available were for they were breastfeeding community drug and safe motherhood we found that CHWs were because the programmes that had them had Only breastfeeding had trained in of for babies which on CHWs reported that they mothers on newborn care practices such as and the for health facility Three CHWs only prevention and the other two were related to the CHWs However, some CHWs reported that was a challenge because community members do not mothers their a mother the and baby without even other community members the community of and the newborn which the for a because as are in as to the baby for when is not the as their are in the FGD, birth attendants are in the care of preterm babies. They identify prematurity by using features such as at birth is to is and to at that such babies are in the local language, baby who reported that when they they have a they on care which the baby and and the mother that not the baby and the However, reported that some practices were difficult to among the women come when they to She when No no no the The some on some practices was some reported that they the of for of if a mother was as not having first used and in a that one where we We and a in is her to be to or to In we found that CHWs were not on care or but we the they to them if In the language, various are to preterm babies and which as baby the of pregnancy was a for mothers and grandmothers to preterm identify from the the baby is we that is a in men and women to months from to so to that is a FGD, The features that were reported as being used by community members to identify preterm babies were to those by that preterm babies were and that their is to that of on the the is that a preterm a FGD, explanations for causes of preterm births diseases and or other medical complications. However, many community members preterm births with causes such as from a and the of in the local that when an there is in both and and preterm birth of a preterm baby. Three of the 10 mothers of premature babies we had not the indicated that they had so because of complications. In respondents that if well preterm babies could and mothers reported that they babies in the as other babies. However, some mothers were that had had a of this would be that this baby would that would any of a preterm baby. We found that a of the practices for preterm babies at the level were not the for care for a preterm baby was well among the community members had knowledge on care or The of was through and of babies in many and the and or in to the baby. Community members reported that they most of this information from health workers and midwife to the baby in a not to to and a and She also to a or a where so that some and to from or till one is the method used to of preterm baby. were also by health workers to babies for weeks or to However, some indicated that the baby had to be immediately. The of on the was reported to be and is even by health workers with the that the In when shown a picture of a mother in a but not identified the After was both men and women were of the but most men that was for to the of at community level that were mentioned in FGDs of the baby because cord is women to baby to be in the all the and the that is is because can even can even FGD The challenges for for preterm babies (Table that were mentioned for labour and other because of the to buy and and to the care at facility when is and the of rural and and that was expensive and to in a can and the of the baby in to most mother of preterm baby. which care for preterm babies the maternal and newborn of care, contributes to the understanding of newborn health in sub-Saharan where there is a dearth of data on newborn care. Care for preterm babies in this is inadequate from both the of (supply side) and (demand However, the relatively knowledge and perceptions about preterm babies opportunities for the care of preterm babies in health facilities and at community level. the health units and care health workers and lacked knowledge and on essential newborn care practices, as well as facilities for preterm care as a basic practices, the baby and which be (Darmstadt et al. were not medical care is to be free in Uganda, neonatal drugs such as injectable ampicillin and gentamycin were generally lacking, and when needed, parents would be asked to buy them from nearby drug shops and pharmacies. there were no and the care of preterm babies. could be a of the that newborn care a relatively area et al. 2005) with no for health in the study of the that have reported for this lack of attention include are that neonatal deaths are because of a lack of babies for a because of a of and there is a in reducing newborn deaths et al. In Uganda, newborn care in the health of Uganda, there are no programmes and facilities for their care. In a of in four of the found that not have a safe and and lacked some equipment, and et al. 2009). The is that inadequate facility care is with for neonatal mortality in the the care of preterm babies in this is at home or community level. Community members this to factors facility care, and the for mothers to be at home because of However, we found that preterm care at home of potentially such as using or to the baby or with in et al. et al. and & reported practices, such as early and of for newborn babies. for maternal and newborn which both the and the Community members generally had a of preterm babies, as was also found in et al. 2008). were to essential newborn care is well that newborn care do not and such as neonatal care units with (Darmstadt et al. of low practices is a can be provided at level health facilities et al. and also at the community and et al. community care for newborn babies, preterm babies, in et al. of preterm care to level health workers and with CHWs with to be in Uganda. However, to take into consideration some of the community perceptions as and as causes of preterm as well as practices such as late of home and inadequate practices for and not to that some of challenges can be through community with of community et al. et al. et al. et al. to care for preterm babies in Uganda, capacity needs to be for health facilities to be to practices and community methods for and care of preterm babies, of to be A of study is that we only 10 mothers who had experienced a preterm birth, of only three had delivered a health of preterm babies at home or were difficult to so their may be However, we by using different such as observations of care provided and data from mothers of preterm babies to FGDs with community and through interviews with other such as A of this study is care practices, we also observed the care. In rural Uganda, the care provided to preterm babies at facility and community level is and health facilities lack capacity for care of preterm babies. However, the acceptance stated by community members of preterm care practices such as and breastfeeding a window of opportunity for introducing preterm care programmes the of care in Uganda. study was by the – Makerere University – as well as by provided by the through a from the & The of the study are the of the authors and do not necessarily the of the the & nor any of the of We the study Demographic and the Study (Iganga and and the We also the for the for and and for their on the