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

Abstract

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.

Breastfeeding Promotion and Nursing Care for Infants with Cleft Palate and/or Cleft Lip in Northeastern Craniofacial Center, Thailand

“…A recent study performed in Uganda showed a mean breastfeeding duration of 4.3 weeks in CLP infants and not one of the CP infants was breastfed. Data from focus group discussions and in-depth interviews revealed multiple reasons for breastfeeding failure in this group, including struggles with the breastfeeding process, difficulties in expressing breast milk, poor breast milk supply, babies choking on milk, milk spillages, and nasal regurgitation [15]. In addition, the prevalence of malnutrition in CP and CLP infants, reported by Tungotyo et al in Uganda, was 68% with 57% having moderate-to-severe malnutrition.…”

Factors Associated With Perception of Stigma Among Parents of Children With Cleft Lip and Palate: Cross-Sectional Study

“…Fathers also had a high level of stigma perception. However, previous studies [ 14 , 18 ] suggested that mothers of children with CL/P experienced severe stigma or discrimination while ignoring the possibility that fathers also experienced high levels of discrimination. Two other studies [ 19 , 20 ] pointed out that the main sources of stress among fathers were the treatment process, feeding, and social stigma.…”

Do Orofacial Clefts Impair Breastfeeding and Increase the Prevalence of Anemia?

“…These authors revealed that the knowledge of mothers on breastfeeding and weaning-related factors was significantly associated with the monthly family income. It is worth noting that the feeding of these children should be carefully and frequently monitored to provide essential nutrients for proper growth, maintenance of general health, and Other studies have also shown breastfeeding practices below ideal rates owing to difficulties, which reveals that guidance and psychosocial support play an important role in the breastfeeding of newborns with orofacial clefts (Kaye et al, 2019;Madhoun et al, 2020;Nabatanzi et al, 2021). Murthy et al (2020) compared through a randomized control trial the efficacy of guidance using an audiovisual modulus with a traditional instructional modulus for improving the habits of assisted breastfeeding.…”

“…The particular problems of newborns with cleft lip and/or palate (CL/P), regarding breastfeeding are insufficient suction, excessive air ingestion, fatigue, inadequate milk ingestion, nasal regurgitation, and excessive time to feed. The lack of satisfactory feeding may cause anxiety and stress between the mother and the baby (Silva et al, 2018;Nabatanzi et al, 2021).…”