Maternal experiences of prematurity, feeding and infant communication within a vulnerable population in South Africa

Abstract

ENGLISH ABSTRACT : Background: The concept of vulnerability, as defined by Adger (2006), relates to an individuals’ “state of susceptibility to harm, powerlessness, and marginality” (p. 286). Respectively, the ‘vulnerable’ participants consisted of mothers of preterm infants, belonging to a largely marginalised indigenous cultural community (isiXhosa-speaking), living within low socioeconomic circumstances. Preterm birth remains a rising global threat to maternal and infant mortality and morbidity, with preterm birth accounting for 5-18% of births worldwide. Mothers, and other primary caregivers of preterm infants, face many day-to-day caregiving challenges. These mothers’ experiences are influenced both positively and negatively by a myriad of factors, including traditional/cultural, socioeconomic and contextual influences. Understanding the daily realities these mothers face is thus essential in designing and providing interventions that are contextually appropriate for the patient populations. A need for and striving towards culturally competent healthcare is being globally recognised, but studies with such vulnerable populations are difficult to source. Such knowledge is necessary for evidence-based practice, however, a notable knowledge gap in terms of such vulnerable populations is evident. Aims and Objective: The main objective of this study was to describe and explain the maternal experiences of having, caring for, feeding and communicating with their (the mothers’) preterm infants in low socioeconomic circumstances in South Africa. The study explored such experiences of those isiXhosaspeaking mothers; a vulnerable population about whom limited knowledge is available. This objective was achieved through eight sub-aims. Participants and Methodology: The study employed a qualitative cross-sectional design that was explorative in nature. A semistructured discussion schedule was used to guide 15 in-depth interviews that were later thematically analysed. The participants were vulnerable mothers of preterm infants who were born and received follow-up appointments at the tertiary hospital serving as the research site. The participants’ infants were of stable medical health and between the ages of three and six months chronological age (term – three months corrected age) and had spent a minimum of one week at home after hospital discharge. Findings: Briefly, caring for a preterm infant was difficult, with concerns about medical stability and negative perceptions of tube feeding contributing to this negative initial experience. In-hospital support systems such as nursing staff, kangaroo mother care (KMC), information sessions and religious services provided positive influences throughout the hospital stays. Furthermore, homebased support systems (for example, with caregiving and chore-based, emotional and financial support) appeared to be one of the most positive aspects of mothers’ overall experiences. Additionally, prematurity influenced maternal decision-making and mothers showed high perceptions of infant vulnerability. It was also found that the hospital staff’s poor understanding and knowledge of cultural traditions surrounding infant birth impacted mothers’ abilities to participate in certain traditional practices such as Imbeleko (the first ceremony that is performed when a baby is born). Conclusion: The findings highlighted both universally shared and population-specific aspects of having and caring for a preterm infant. Important information emerged regarding influential factors within such maternal experiences, as well as information that may assist healthcare workers in providing mothers with premature infants with culture-specific care.

AFRIKAANSE OPSOMMING : Agtergrond: Die konsep van kwesbaarheid, as omskryf deur Adger (2006), hou verband met ‘n individu se ‘toestand van vatbaarheid vir skade, magteloosheid en marginaliteit’ (p. 286). Die 'kwesbare' deelnemers bestaan uit moeders van vroeggebore babas, wat deel uitmaak van 'n grootliks gemarginaliseerde inheemse kultuurgemeenskap (isiXhosa-sprekend), wat onder lae sosioekonomiese omstandighede leef. Premature geboortes hou wêreldwyd toenemend ’n bedreiging in vir moeder- en babasterftes en -mortaliteit, met 5% tot 18% van alle babas oor die wêreld wat prematuur gebore word. Moeders en ander primêre versorgers van premature babas kom daagliks voor talle versorgingsuitdagings te staan. ʼn Menigte faktore, met inbegrip van tradisionele/kulturele, sosio-ekonomiese en kontekstuele invloede, het ʼn positiewe sowel as ʼn negatiewe invloed op hierdie moeders se ervarings. Gevolglik is dit noodsaaklik om die daaglikse werklikhede waarmee hierdie moeders gekonfronteer word, te verstaan ten einde ingrypings te ontwerp en te voorsien wat kontekstueel geskik is vir die pasiëntbevolking. ʼn Behoefte aan en ʼn strewe na kultuurgeskikte gesondheidsorg word wêreldwyd erken, maar dit is moeilik om studies oor sulke kwesbare populasies te vind. Ofskoon dié kennis noodsaaklik is vir bewysgebaseerde versorging, is dit duidelik dat daar ongetwyfeld ’n tekort aan kennis betreffende sulke kwesbare bevolkingsgroepe bestaan. Doelstelling en doelwitte: Die hoofdoelstelling van hierdie studie was die beskrywing en verduideliking van moeders in swak sosio-ekonomiese omstandighede in Suid-Afrika se ervaring daarvan om premature babas te hê, hulle te versorg en te voed, en met hulle te kommunikeer. Hierdie studie het sulke ervarings van Xhosa-sprekende moeders ondersoek; ʼn kwesbare groep oor wie slegs ʼn beperkte hoeveelheid inligting beskikbaar is. Hierdie doelstelling is deur agt sekondêre doelwitte bereik. Deelnemers en metodologie: ʼn Kwalitatiewe deursnee-ontwerp wat verkennend van aard is, is in die studie gebruik. ʼn Semigestruktureerde besprekingskedule is as riglyn gebruik vir 15 diepgaande onderhoude wat later tematies ontleed is. Die deelnemers was kwesbare moeders van vroeggebore babas wat gebore was en opvolgbehandeling ontvang het in die tersiêre hospitaal wat as die navorsingsterrein gedien het. Al die deelnemers was vroue met ʼn lae sosio-ekonomiese status (soos bepaal deur opvoedkundige status en finansiële inkomste) wat in die omgewing van die tersiêre hospitaal gewoon het. Die deelnemers se babas was stabiel en gesond en hulle chronologiese ouderdom was tussen drie en ses maande (termyn – drie maande reggestelde ouderdom) en was reeds vir minstens ʼn week tuis nadat hulle uit die hospitaal ontslaan is. Bevindings: Kortliks, dat dit moeilik is om ʼn premature baba te versorg, en dat kommer oor mediese stabiliteit en negatiewe persepsies van buisvoeding bygedra het tot die aanvanklik negatiewe ervaring. Die hospitaal se interne ondersteuningstelsels soos verpleegpersoneel, kangaroe-moederversorging (KMV), inligtingsessies en religieuse dienste was dwarsdeur die hospitaalverblyf positiewe invloede. Verder het tuisgebaseerde ondersteuningstelsels (byvoorbeeld ondersteuning met versorging en daaglikse huiswerk, asook emosionele en finansiële steun) geblyk een van die positiefste aspekte van die moeders se algehele ervaring te wees. Verder het die premature geboortes die moeders se besluitneming beïnvloed en hulle het sterk persepsies van die babas se kwesbaarheid getoon. Ook is daar gevind dat die hospitaalpersoneel se swak begrip en gebrekkige kennis van kulturele tradisies betreffende kindergeboorte ʼn impak gehad het op die moeders se vermoë om deel te neem aan sekere tradisionele gebruike soos Imbeleko (die eerste seremonie wat plaasvind nadat ʼn baba gebore is). Slotsom: Die bevindings onderstreep sowel universele as bevolkingspesifieke aspekte daarvan om ʼn premature baba te hê en te versorg. Belangrike inligting het aan die lig gekom oor faktore wat ʼn invloed uitoefen op sulke ervarings van moeders, asook inligting wat gesondheidsorgwerkers kan help in die voorsiening van kultuurgeskikte sorg aan moeders van premature babas.