Browsing by Subject "paediatric dysphagia"

Now showing 1 - 2 of 2
  • No Thumbnail Available
    Item
    Open Access
    Mothering a neonate/young infant with feeding and swallowing difficulties: barriers, facilitators, and support
    (2025) Meyer, Cecilia; Norman, Vivienne; Morrow, Brenda
    Background: The anticipation of a new infant is typically characterised by feelings of joy, excitement, and hopeful expectations for the future. However, these positive emotions can be altered when mothers are faced with the reality of caring for an ill, hospitalised infant, particularly one with feeding and swallowing difficulties (FSD). FSD in infants significantly impacts not only the infant's health and development but also the mother's emotional and psychological wellbeing. Caring for neonates and young infants with FSD in hospital settings presents unique challenges, especially in resource-constrained environments like South Africa. Limited research exists exploring mothering an infant with FSD, highlighting a gap in understanding the maternal experience. Research aim and objective: This research aimed to explore ‘mothering' a neonate/young infant with FSD in a South African healthcare context. To achieve the aim, mothers' experiences of barriers, facilitators and support needs within a neonatal healthcare context are described. Methods: A qualitative, exploratory case study design was used. Semi-structured interviews were conducted with mothers whose infants presented with FSD in neonatal/infant units. A total of seven mothers were interviewed (n=7) whose infants (aged from birth to three months) were admitted at either Mowbray Maternity Hospital or Red Cross War Memorial Children's Hospital, for a minimum of seven days. The data were thematically analysed, allowing the emergence of key themes that represent maternal experiences. Results: The overarching theme of ‘mothering' emerged, encapsulated by the quote: “Baby comes first in everything.” Six distinct themes then emerged from the overarching theme, represented by relevant quotes from the participants: “Information helps”; “They help a lot”, “It's not home”, “Everything on you”, “It affects me emotionally”, “Not on your own” and lastly, “It's my baby”. These themes emerged from the accounts of the mothers, which were then described in terms of barriers such as separation and burden of care, facilitators such as information and maternal strength, and support structures. The findings outline the dedication and resilience of mothers when navigating the challenges of caring for infants with FSD, while also highlighting the intricate and often dichotomous realities they face in the hospital setting. Conclusion: This study highlights the complex experiences of mothers caring for infants with FSD in South African healthcare settings. While deeply committed to their infants' wellbeing and feeding, mothers face barriers such as inadequate communication, separation, and limited support, which heighten stress and guilt. Facilitators, including clear communication, practical support from healthcare professionals, and peer and family networks empower mothers and alleviate their emotional burden. A collective effort by healthcare professionals, families, and hospital systems is essential to ensure care that supports both the recovery of infants and the wellbeing of their mothers. These insights can inform healthcare practices and future research in similar resource-limited settings.
  • Thumbnail Image
    Item
    Open Access
    The feeding and swallowing impact survey (FS-IS): cross-cultural adaptation for the South African context
    (2021) Bestenbier, Candice; Norman, Vivienne; Pascoe, Michelle
    Background: Feeding and swallowing difficulties (FSD) are found in typically developing children and children with complex medical and developmental conditions. These difficulties may have negative health consequences which can be stressful for caregivers as they are required to provide care for their children in the home environment. The Feeding and Swallowing Impact Survey (FS-IS) is a subjective rating scale used to determine the health-related quality of life (HRQoL) of caregivers of children diagnosed with FSD. However, this scale is not yet available in any of the official South African languages (except for English), and has not yet been culturally or linguistically adapted for the South African context. Research aims: The study aimed to cross culturally adapt and validate the FS-IS for the South African context by 1) describing the content validity of the FS-IS in a South African context; 2) describing the cultural and linguistic appropriateness of the English, isiXhosa and Afrikaans versions of the FS-IS; and 3) describing the experiences caregivers of children have in caring for their child with FSD using the FS-IS, in a pilot study. Methodology: A descriptive exploratory design was used to cross-culturally adapt and pilot the FS-IS, which consists of 3 subsections related to daily activities, worrying and problems with feeding. Five expert speech-language therapist (SLT) participants were identified to review the FS-IS for content validity. The FS-IS was then translated into Afrikaans and isiXhosa using the forward and back translation process. Caregivers (n=15) were identified at feeding clinics to determine the cultural and linguistic appropriateness of the FS-IS in English (n=5), Afrikaans (n=5) and isiXhosa (n=5). Their recommendations were taken into consideration and changes made. The pilot study included caregivers of children with FSD attending feeding clinics at two institutions (n=32) who completed the FS-IS. The participants in the pilot study included parents as primary caregivers (n=28; 88%), grandparents (n=2; 6%), as well as foster parents (n=2; 6%). Thirty-one participants were female with 14 English speaking, 9 isiXhosa and 9 Afrikaans speaking. The caregivers were the primary caregivers of children with a variety of FSD including non-oral feeds, oral feeds with specific modifications and picky or selective eaters. Results: The FS-IS was found to have content validity as experts and caregiver participants judged it to be contextually relevant for the South African context. Caregivers considered the items on the FSIS important, clear and appropriate for speakers of their native language as well as for fellow South African families, with minor changes suggested for the isiXhosa translated version. The tool has high internal consistency (Cronbach's alpha = 0.827) as well as excellent intra and inter-rater reliability (100% agreement). Daily activities that caregiver participants found most difficult included getting help from others (50%, n=16) and leaving their child in the care of others as they are scared to have others feed or take care of their child (62.5%, n=19). The majority of caregiver participants reported concerns related to their child's general health (84%, n=27) and whether they were doing enough to help with their child's FSD (50%, n=16). Few caregivers reported difficulties with feeding, with 87.5% (n=28) reporting no difficulties as a result of the time taken to prepare meals and 72% (n=23) reported no difficulty due to professionals or family having differing opinions about how to feed their child with FSD. Conclusion: The results confirm that the FS-IS is a reliable and valid tool for the identification of caregivers with reduced HRQoL related to caring for their child with FSD in a South African context. The adapted and translated FS-IS can therefore be used to identify caregivers who may need additional support or referral for further management from the multidisciplinary team. The results highlighted the complexity of caring for a child with FSD and the effects of the burden of care on caregivers. Early identification of the HRQoL of caregivers will not only benefit the caregivers but also the child they are caring for as the HRQoL of caregivers impacts on the QoL of the child with FSD.