“Mine did not breastfeed”, mothers’ experiences in breastfeeding children aged 0 to 24 months with oral clefts in Uganda

Background: Appropriate breastfeeding is vital for infant and young child nutrition. Annually, oral clefts affect 0.73 per 1000 children in Uganda. Despite this low incidence, children with a cleft face breastfeeding difficulty which affect their nutrition status. In addition, knowledge on maternal experiences with breastfeeding and support is limited. We explored maternal perceptions, experiences with breastfeeding and support received for their children 0 to 24 months with a cleft attending Comprehensive Rehabilitative Services of Uganda (CoRSU) Hospital. Methods: This cross-sectional study combined quantitative and qualitative methods. We consecutively recruited 32 mothers of children with a cleft aged 0 to 24 months attending CoRSU hospital between April and May 2018. A structured questionnaire collected data on breastfeeding practices and device use (n = 32). To gain a broad understanding of mothers’ perceptions and experiences with breastfeeding and support received, we conducted two Focus Group Discussions (in each, n = 5), and 15 In Depth Interviews. Descriptive statistics were analyzed using SPSS software. Qualitative data were analyzed thematically. Results: Of the 32 children with a cleft, 23(72%) had ever breastfed, 14(44%) were currently breastfeeding, and among those under 6 months, 7(35%) exclusively breastfed. Of 25 mothers interviewed in IDIs and FGDs, 17(68%; IDIs = 8/15, FGD1 = 5/5 and FGD2 = 4/5) reported the child’s failure to latch and suckle as barriers to breastfeeding. All ten mothers who used the soft squeezable bottle reported improved feeding. Nineteen (76%) mothers experienced anxiety and 14(56%), social stigma. Family members, communities and hospitals supported mothers with feeding guidance, money, child’s feeds and psycho-social counselling. Appropriate feeding and psycho-social support were only available at a specialized hospital which delayed access. Conclusions: Breastfeeding practices were sub-optimal. Mothers experienced breastfeeding difficulties, anxiety and social stigma. Although delayed, feeding, social and psycho-social support helped mothers cope. Routine health care for mothers and their children with a cleft should include timely support. This cross-sectional design integrated quantitative and qualitative methods; this allowed for description of breastfeeding practices, and an in-depth exploration of maternal perceptions, experiences, and support. In a quantitative survey, we collected data on child’s history of: breastfeeding, pre-lacteal and breast milk alternative use, and feeding device use. The sample size was achieved using the census method which lists all available elements in a population and it is applicable for rare groups like this [18]. We used a consecutive sampling strategy, where each person who meets the inclusion criteria is selected until the sample size is achieved. Subsequently, each consecutive mother-child pair with a cleft who attended CoRSU hospital during a two-month survey period was approached for enrolment. The survey sample amounted to 32 mother-child pairs with a cleft (n = 32). The researchers believed this consecutive sample was more representative of the target population than one from convenience sampling. During the same time period, we conducted Focus group discussions (FGD) and In depth interviews (IDI) to explore perceptions about breastfeeding and support received. This triangulation of methods enabled us to check out the consistency of findings generated. We purposively selected mothers to children with a cleft to allow for deep exploration of their lived experiences with breastfeeding. Out of the 32 mothers that were recruited during their visit to CoRSU during the study period, 25 mothers consented to be interviewed in two FGDs, each with 5 mothers, (n = 10) and 15 IDIs (n = 15). The study was conducted at CoRSU hospital in Uganda located in Wakiso District in Uganda. The hospital was purposefully selected because it provides specialized feeding, psycho-social and cleft repair surgical services for children with a cleft referred from all over Uganda. Feeding support services include: screening for and treatment of malnutrition, and provision of breastfeeding support to the parents. The psycho-social support involves individual and group counselling. The study included mother-child pairs of children 0 to 24 months old, born with a cleft and presenting at CoRSU hospital, Uganda between April and May 2018. The children were either waiting for cleft surgical repair, recovering from one, or between surgeries. All included mothers were considered for recruitment into FDGs and IDIs because of their common characteristic of having children with a cleft. Mother-child pairs where the mothers were unwilling or unable to participate in the study due to psychological incapacitation or child’s death were excluded. Children with Pierre Robin sequence and Constricting ring syndrome where included because their breastfeeding practice in Uganda has not been previously documented. All tools were translated into a local language, Luganda by the team and verified by a language specialist (See supplementary files: Feeding practices questionnaire, In Depth Interview guide and Focus Group Discussion guide). All interviews were conducted in English or Luganda according to participant preference. The survey on breastfeeding practices adapted and used a structured questionnaire from the WHO recommended measures of IYCF indicators that was previously used in Kampala [19, 20] (Feeding practices questionnaire). Breastfeeding variables were: ever breastfed; currently breastfeeding- proportion of children 0 to 24 months fed on breast milk; exclusive breastfeeding- proportion of children 0 to 5 months fed on breast milk alone; continued breastfeeding- proportion of children 6 to 24 months fed on breast milk; and duration of breastfeeding- the period for which a child was fed on breast milk. Pre-lacteal feeds were any feeds given to children before initiating breastfeeding while breast milk alternatives were any feeds given to replace breast milk. Feeding devices referred to use of feeding tools such as: spoon, cup, bottle with nipple, NG tube or soft squeezable plastic bottle. Both FGDs and IDIs had interview guides (FGD guide and IDI guide), were audio recorded had a moderator and note taker. In FGDs, we discussed and sought consensus on maternal group experiences with breastfeeding children with a cleft and explored support received [21]. In IDIs, we explored detailed individual maternal perceptions on their breastfeeding and support experiences [21]. Feeding support was any feeding guidance given to mothers such as: counselling on breastfeeding and provision of devices and feeds. Psycho-social support was any emotional reassurance. All questionnaires were checked daily for errors and the information verified with the participants. Quantitative data were entered and cleaned in EpiData (version 3.1, EpiData Association, Odense, Denmark). Data were then analyzed into percentages using SPSS (version 16.0: SPSS Inc., Chicago, IL). Audio data were transcribed verbatim [22], and translated into English by two team members fluent in both English and Luganda. Thematic content analysis started with thorough reading of transcripts to identify basic features of the data that we organized as explicit codes and defined; these were written in a code book [22]. We used the codes to group text into segments whose meanings were similar to the codes. From these, we identified underlying patterns which were synthesized and grouped into basic themes [22]. Basic themes represented groups of the lowest-order meanings or responses evident in the text [23]. We summarized and grouped together similar basic themes into more abstract principles to form categories called organizing themes [23]. We then merged similar organizing themes into categories of principal or main meanings concerning breastfeeding and support experiences called global themes. Global themes included: breastfeeding difficulties, devices, feeds, negative attitudes, social stigma and support received [23]. Global themes were interpreted by identifying co-occurrence across IDIs and FDGs.