Information sources and search strategies.

Literature searches were conducted between April and November 2019 using four main search strategies:

1. Broad search for qualitative research on infant feeding for Zika (primary studies) (April 2019).
2. Follow up of included reviews and primary studies, checking references and citation searching of all included references on infant feeding for Zika (May-July 2019).
3. Broad search for any qualitative research on Zika Virus (NB. Dropping explicit requirement for infant feeding in title/abstracts) (August 2019).
4. Rapid targeted searches on infant feeding in infants with severe disability or nonprogressive, chronic encephalopathies (e.g. microencephaly, dysphagia, choking, swallowing etc) (September 2019) and on specific conditions e.g. cerebral palsy and Down’s Syndrome (October 2019).

Search methods are described sequentially according to these phases. We searched the following databases for relevant published and unpublished literature from 2000 to 2019: PubMed; MEDLINE (Ovid); PsycInfo (Ovid); CINAHL (Ovid); EMBASE (Ovid); Web of Science; SCIELO; Scopus; LILACS (for studies conducted in South America); BIREME; African Journals Online (for studies conducted in Africa); and African Index Medicus. Using guidelines developed by the Cochrane Qualitative & Implementation Methods Group for searching for qualitative evidence[24,25] search strategies were developed for each database. The search combined thesaurus and free-text terms for Zika with terms for infant feeding and published filters to identify qualitative research (https://hiru.mcmaster.ca/hiru/HIRU_Hedges_MEDLINE_Strategies.aspx). Subsequently, the search was broadened using a search tactic known as “drop a concept”[26]; in other words, the most specific concept, infant feeding, was omitted from the search strategy to retrieve qualitative research on Zika, regardless of whether or not the specific aspect of infant feeding was specified (S1 Table). This revised strategy combined thesaurus and free-text terms for Zika with an abbreviated filter to identify qualitative research[24,27]. The search strategy for MEDLINE is available in the S2 Table. Reference lists of included papers were scrutinized (back-chaining) and items included as appropriate. Citation searches (forward-chaining) were run on Google Scholar for all included studies using the Publish or Perish software[24]. Google Scholar alerts were set up for all included studies to identify newly published studies published up until the final analyses, and any further studies retrieved for inclusion. Results were transferred to Microsoft Excel spreadsheets for sifting for possible inclusion.

Non-English language studies were included where translation was possible. Titles and/or abstracts of potentially relevant studies published in languages other than English were translated using a basic translation package (Google Translate). No geographic restrictions were imposed on the search; the date range was limited to 2000–2019 to capture recent and contemporary views.

Parental anxiety and stress.

Parents report uncertainty about how best to feed their child due to swallowing difficulties. In an analysis of YouTube videos posted by relevant family members, it was recorded that families first approached health professionals only ‘after a few days with their child, [when] mothers recognized abnormal infant behaviors, such as constant crying and difficulty in swallowing’[31]. Parents in one CZS study reported a need for guidance on infant feeding, especially on the management of breastfeeding, weaning, types of foods, spacing of diets, introduction of supplements and use of adequate pacifiers when the baby is not exclusively breastfed [30]. Participants in three studies reported that one of their concerns was that they did not know how best to feed their child[30,33,35]. Clear uncertainty and ‘doubt’ existed regarding the best diet and the best way to feed their child. Parents reported a lack of knowledge regarding how to manage choking or gagging[30,33]; parental uncertainties that were reflected in more aspects that feeding alone [36]. Participants in a further study received an educational intervention that covered choking problems[35].

Parents report fear and anxiety due to choking or difficulty swallowing. The theme of choking or difficulty swallowing appeared in four Zika studies[30,33]. Participants in two studies reported that their principal concern was their child choking[30,33]. Parents in these studies also reported that they were unsure how to manage choking or gagging [30,33]. Mothers in particular reported that feeding almost always produced choking [32]. Several parents reported in one study that, such was their level of fear and anxiety when it came to feeding their child, because the child would choke, that they simply did not want to do so; they would rather do anything else[30]. Participants in two studies also reported a fear of suffocating their child when feeding[30,33].

Researchers in an ethnographic study reported that anxiety over choking could affect other female family and community members also: ‘Other women are notably more reluctant to participate in holding these babies, because they .., have problems in swallowing food, suffer frequent convulsions, and, in general, present a very vulnerable condition’[34]. Fifty percent of CZS babies have been reported to have poor lipid intake, and this inadequate dietary intake of lipids may be explained by the main challenges posed by choking, when mothers thicken food through the use of carbohydrate-rich farinaceous food[15].

Bonding concerns when feeding is problematic. Demands on the mother were seen to impair the relationship between mothers and their children. Mothers reported “not accepting the congenital anomaly that their child has and how it ends up reflecting on their daily habits and consequently on their bond with the child”[35].

Parents report that the burden of feeding can be time-consuming and stressful for mothers. A mother in one study reported that feeding a child with swallowing difficulties placed a time burden, as well as an emotional burden, on the primary carer, principally the mother [32].

Information and advice.

One CZS study documented a mother’s anecdotal report of her daughter’s food related broncho-aspiration pneumonia acquired due to poor positioning during feeding, as she felt the instructions she had received werenot adequate [35]. Mothers in a further study reported how doctors, and other health professionals providing home visits, did offer guidance and instruction about food, but that this might be ignored: a mother reported that she was told not feed her child certain things, but she fed them and her son ate and enjoyed them anyway [32]. The perceived adequacy and value of information provided to parents appeared to differ in these studies.

Training programmes for parents.

In two CZS studies, mothers reported the information they needed from training programmes. Participants in a tailored training programme reported that they had difficulties with breastfeeding and introducing first foods, and that they needed explanations about the feeding positions they used with their babies and which foods they had introduced first[35]. Elsewhere families expressed a specific need to learn first-aid techniques, mainly “in order to reverse gagging, caused by dysphagia, and airway cleansing and hygiene maneuvers in children, since infants have gastric reflux and difficulty accepting food [especially the milk], making it difficult to feed them properly”[30]. Many mothers of children with microcephaly expressed doubts related to their children’s diet, discussing such issues as the correct mode of food preparation and the types of foods introduced first, according to each child’s age group[35]. The training programmes advised mothers about the importance of exclusive breastfeeding during the first 6 months, as well as stimulating the baby’s grip, as well as providing advice on essential care when administering food by nasogastric and nasoenteral tubes [32]. No study mentioned any potential role for bottle-feeding.

Resource considerations.

Caring for a child with feeding problems places pressure on family resources. Researchers in an ethnographic study noted that, ‘For many reasons the lack of resources becomes more intense for these families, especially when mothers leave their jobs and have growing needs for medicines, expensive special food, therapeutic instruments (to favor deglutation, ambulation, posture, vision, etc.) …’)[34]. In a further study, mothers who were unable to maintain exclusive breastfeeding were instructed to purchase formula feed offered by the state[35]. Lack of support from the government was highlighted by parents as the main cause of mothers’ hopelessness towards feeding their children.

Parental anxiety and stress.

Parents report uncertainty about how best to feed their child. In the UK and Australian studies, mothers consistently reported uncertainty about whether they were doing the best for their child, making the best feeding choices [39,40]. Mothers of UK Downs Syndrome infants reported that their infants were often sleepy and did not demonstrate feeding cues, which is not reported in the literature regarding typical infants, and they struggled to gain answers from health professionals [39].

Bonding concerns when feeding is problematic. Mothers in an Australian study reported that they felt that the requirements or advice to adopt a certain approach to feeding, such as expressing breast milk for bottle feeding, affected their ability to bond with their child[40]. However, Australian health professionals expressed the view that prolonged times spent feeding presented an important opportunity for one-on-one contact between the main carer and the child[44]. The study from Portugal found that family and professional support could help mothers to manage their different feelings and to enhance their positive feelings and thus help in the maintenance of breastfeeding, without early weaning[37]. Mothers in a study from Brazil felt that the professionals who attend the woman/mother of a child with Down syndrome should promote early bonding, if possible, taking the first hour to establish breastfeeding, because at this moment, despite likely drowsiness, the baby is likely to be active[38]. In this study, one mother also reported that prior familiarity with Down’s Syndrome created a “bridge” to bonding, thereby increasing the chances of successful breastfeeding[38]. Health professionals in an Australian study felt that the shared responsibility of caring for a child with cerebral palsy might enhance family bonding[44]. Effects of caregiver feelings of self-stigma and shame were profound and were given as a major reason why fathers had left, family members were unwilling to care for the child, the child and caregiver faced exclusion in home and community life, and why the child may be neglected. This finding for cerebral palsy in Ghana[43] had previously surfaced in general studies of the effects of Zika in Brazil[45].

Parents report the burden of feeding can be time-consuming and stressful for mothers. Typically, studies reported that the feeding of an infant with feeding difficulties was time consuming[38–40,42,43,44]. Parents reported experiencing frustration that they could not feed in the way they wanted to, such as breast-feeding[40], and that interventions and advice often did not ‘work’[39,40]. Mothers in the UK study of infants with Down’s syndrome, reported finding feeding, whether breastfeeding, expressing or bottle-feeding, to be ‘overwhelming’, ‘lengthy and time-consuming’, ‘exhausting’ and ‘difficult’[39]. This was echoed in an Australian study in which mothers reported finding expressing and feeding ‘degrading’, ‘time-consuming’ and leaving them ‘feeling fatigued’[40].

Researchers in a Ghanaian study reported that long meal times were the norm, with some being further lengthened by other comorbidities[42]. Specific demands include the length of meal times, the need to modify food and prepare separate meals from those of the rest of the family, the perceived inability of children to feed themselves, the messiness caused during meals, and the pressure of providing sufficient food of good enough quality[42]. Messiness was a particular concern; it could lead to extra chores and might deter others from helping caregivers with feeding[42]. The Brazilian study confirmed that time taken is an issue; but also the timing of the challenges in relation to other issues with which the woman has to contend[38]. Mothers’ comments suggest that feeding was often physically exhausting as well as stressful, both for the mother and child [42,43].

Parents feel that the information and support provided to them by health professionals is mostly inadequate.

The inadequacy of information provided by health professionals was reported in four studies[37–40] by multiple respondents. Mothers in the UK and Australian studies reported seeking answers to their questions and uncertainties, but the advice forthcoming was inconsistent or there was ‘no answer’ at all, [39,40] with the result that some mothers reported not wanting to access services [39]. Participants reported a ‘lack of skilled help’, ‘mixed messages’ and a ‘lack of information provided on feeding’[39]. Mothers in the same study reported not being given ‘correct’ advice on expressing breast milk or bottle-feeding, with the result that one mother reported attempts at bottle feeding being ‘frightening’[39]. Some health professionals, when faced with feeding difficulties, were described as being ‘out of their depth’ and unable to provide appropriate growth charts[39]. Mothers of Down’s Syndrome infants mothers reported inconsistency in the information and advice being provided [40].

Even when attention and support was provided, it was reported that it could be considered inadequate [39]. Mothers in the study from Portugal felt that health professionals did not encourage breastfeeding and did not pass accurate information, confusing mothers about practices they should have, leaving doubts, discomfort, and a demotivating environment [37]. Health professionals were often insensitive to stress and other concerns and parents reported feeling they have to seek information themselves. Mothers in the Brazilian study described how family members and friends often sought to provide support when this was not forthcoming from the health professionals[38]. Every family had resources and previous breastfeeding experience upon which to draw, with beliefs and values being passed on among family members particularly in connection with breastfeeding support[38].

Finally, mothers in the Australian study complained that attending scheduled appointments with health professionals when their child was having feeding difficulties could be stressful[40]. Support from health professionals within nutrition services was variable; when visiting nutrition clinics, some were not referred for treatment, some were given advice that they felt was inappropriate, while others were referred for treatment but had difficulties attending appointments and did not receive follow-up. This disconnect with nutrition services seemed to contribute to limited care-seeking habits of caregivers[42].

However, mothers in the UK study reported good support from neonatal unit staff, as well as support and advice on nutrition, if not on breast-feeding [39]. The Brazilian study also reported support received from health professionals, particularly nursing, maternity and those providing home visits as well as team members from the Human Milk Bank[38]. Parents in the Australian study of infants who had been in neonatal intensive care also reported good support from staff both for them and their children, as well as in terms of making their child well enough to go home[40].

Parents report feeling they have to seek information themselves.

In the presence of uncertainty, and the absence of adequate information and support from health professionals, mothers of infants with Downs Syndrome reported having to seek information on feeding themselves, both ante- and post-natally, including on choice of breast pumps and infant weight gain[39]. However, one mother in this UK study also reported being too exhausted or stressed to conduct her own research. Another mother reported, while feeling that the information should have been provided to her, that the process of seeking and finding information was a positive experience as it gave her a sense of control[39]. Participants from the study in Porto described how they identified other parents through Internet forums (on sites that specifically address Down’s Syndrome), and Facebook groups, and were frustrated when they attended appointmets and seemed to have greater knowldege than staff [37].

Parents report a general lack of control.

Two studies reported that mothers felt a lack of control over the feeding decisions made for their child, whether it was to persist with breast-feeding, to stop breast-feeding or to adopt a combination of breastfeeding, expressing or bottle-feeding [37,39]. These mothers reported a ‘loss of power’ regarding feeding, having their preferences ‘overridden’ by health professionals[39] and that health professionals acted as the ‘gatekeepers’ to services[39]. In the UK study of mothers of infants with Downs Syndrome, a mother reported being ‘pushed’ from breast-feeding to expressing, then from expressing and tube feeding to formula feeding[39]. This lack of choice also surfaced in the other study of Down’s Syndrome (DS) from Portugal[37] where women were denied the opportunity to breastfeed their children soon after their child’s birth due to factors such as their child’s health problems, their child’s hospitalization in a neonatal unit, or due to the opinions of health professionals who thought the practice of breastfeeding in children with DS was impossible. As a consequence, breast milk was offered with the use of a bottle, a syringe, and a nasogastric tube. Mothers in an Austalian study reported feeling that their ‘maternal competence’ was being challenged, and their bond with their child was affected if others took control of feeding when the mother’s actions were not proving successful[40]. In both the UK study and the Australian parental study, mothers reported they were frustrated at the control exercised by health professionals and within maternity hospital environments [39,40]. However, fathers in one study[40] reported that the involvement of health professionals alleviated the stress and frustration as someone else was taking control. Fathers were also positive about being able to give expressed breast milk as it gave them a feeding role that they otherwise would not have had [40].

The Brazilian study also asserted that knowing that every child is a single individual and that differences in breastfeeding occur across individuals helped to strengthen the determination of one mother in continuing to insist on breastfeeding her son with Down’s Syndrome[38]. Mothers were very aware that health professionals should respond to these differences and, if necessary, update their knowledge to be able to deal with such cases[37]. The Australian study of health professionals saw them highlighting the need to recognize the individuality of families’ needs[44]. These health professionals asserted that “optimal communication from health professionals should be non-aggressive, supportive, non-judgemental and respectful of the parents’ viewpoint” [44]. The Australian health professionals in this study identified “provision of educational information, acknowledgement of the parent as main carer and choosing the appropriate time to communicate difficult information” as being particularly important[44]. However, these health professionals also recognised that parents experience loss of control when dealing with the medical system[44].

In the study of neonatal feeding difficulties a mother reported that, while expressing was ‘painful’, it did give her a sense of ‘doing something’[40]. In the study of infants with Downs Syndrome, another mother reported that her child was ‘taken away’ to be fed to support weight gain, while another mother, a health professionals herself, took control of the situation and refused to allow anyone else to take away her baby to be fed [39]. The need to facilitate women’s infant feeding choices was also clearly expressed in the Brazilian study [38].

Mothers in the study of infants who were in neonatal intensive care reported wanting to ‘take their baby home’ in order to be ‘in control’[40]. However, one mother in the UK Down’s Syndrome study reported that she had much greater control over feeding when admitted to a children’s hospital compared to when she was in the maternity hospital, while another mother in the same study reported that seeking and finding useful information gave her a sense of autonomy: ‘it felt like a really important proactive step to at least try to get some control over the situation’[39]. By contrast, some fathers and mothers with other small children, in the study of infants who had been in neonatal intensive care, reported that they were ‘happy to let nurses care for their infant’ because of the demands of caring and feeding, and the expectation that the child would be well enough to leave the hospital more quickly [40].

Parents report that the infant’s weight gain can be the overwhelming focus both for them and for health professionals.

Parents of children who had been in neonatal intensive care reported that the priority for them, and for health professionals, was their child’s weight gain rather than how he or she was fed: the reported reasons were not only to see their child thriving, but to do so with the aim of ‘getting home’ and out of hospital as quickly as possible[40]. Health professionals recognised that discussions regarding weight gain often revealed discordance between parents’ and health professionals’ wishes[44]. Feeding and weight gain, for reasons other than discharge, such as surgery, were also described by one mother in the other study [39]. In the same study, a mother reported how weight gain was prioritised over other factors in decisions made over feeding choices [39].

Training programmes for parents.

Several studies examine training programmes, often in low-cost settings, to improve feeding of children with cerebral palsy [41,42,43,44,46]. Programmes include training on head positioning[42,43] and on mixing foods to an appropriate consistency. Bangladesh and Ghanaian training programmes for cerebral palsy aimed to alleviate stress from choking by offering specific guidance on positioning [41,42]. Table 6 summarises potential implications of this indirect evidence when planning Zika training programmes.

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Table 6. Implications of indirect evidence [41–44] for Zika parental training programmes.

https://doi.org/10.1371/journal.pntd.0008731.t006

Training programmes offer a potential source of practical advice with caregivers feeling able to give more diverse foods after having been given advice on appropriate modifications. Caregivers in this Ghanaian study reported the need to modify the consistency of foods, making them softer or liquidized, to enable feeding[42].

Parents appreciate improved support from others as a result of sharng information that they themselves have received from training programmes. One mother of a two-year old who attended a training programme described how she was able to share knowledge on choking with her own mother which offered respite in the toddler’s care [43]. This successful sharing or participation of other family members in training was also reported in another study [41]. Some mothers in the study from a NICU reported that intervention was a ‘helpful’ step, ‘restoring positive experiences around feeding’[40]. Family and professional support helped them manage their different feelings and to enhance their positive feelings and thus help in the maintenance of breastfeeding, without early weaning.

Some mothers described how family members and friends often sought to provide support when not being received from the health professionals. Sharing information with parents facing similar challenges was reported to be one of the most effective ways of learning. The mutual support and sense of “family” were considered important contributions of training programmes[43]. Evidence from cerebral palsy workshops in Ghana and Bangladesh suggests that it may be difficult for mothers to attend group training provision if they are unable to access transportation or pay travel costs. The absence of fathers further contributed to a lack of resources in the Ghanaian study, with no family accessing any social protection programmes at the outset of the training [43].

Resource considerations.

Australian health professionals considered the parental burden of time, physical effort, financial and emotional costs of feeding to be high[44]. One mother from Ghana expresses this intersecting relationship between the physical dependency of the child, the economic implications and caregiver stress: “I am unable to leave him and even go and work because of his condition. I need to work and support him and the other children but I just cannot. This makes me very unhappy”[42]. Mothers may be unaware of available financial welfare support[43].

Poverty shaped the wellbeing of the majority of Ghanaian caregivers and their ability to implement change from the training programme[43]. The absence of fathers, who may abandon the mothers when faced by the perceived added burden of a child with cerebral palsy, could further contribute to a lack of resources[43]. This Ghanaian study found that “Fathers were almost completely absent from the household, whether because of separation or divorce, working away from home, and infrequent home visits”[43]. Adams observes, in the context of Bangladesh, that: “in situations of poverty, problems are exacerbated by factors such as lack of resources to buy nutritious food, limited time and facilities for cooking special recipes”[41]. Mothers and their children may also face lack of access to rehabilitation and health services to deal with associated complications”[41], including lack of transport[43]. Parents with better economic circumstances had additional health insurance to address the deficits of the social care services. However, some specialties were not registered with health providers thereby occasioning further expense as mothers cared for their child.