Maternal Stress in Caring for Children with Feeding Disabilities

The Lived Experience of Mothers of Children with Chronic Feeding and/or Swallowing Difficulties

“…The mothers shared their acquired skills (''…I trained Betty [not actual name] to finger feed'') and knowledge with family members (''I downloaded information from the internet. We printed everybody a booklet about cerebral palsy, feeding issues…'') They furthermore expressed a wish to be able to empower other mothers by providing information, practical skill demonstration, and emotional support (''I would love to be there in the doctor's rooms when an initial diagnosis is made, to say to the mother that she is not alone, and that there are other mothers that can walk the road with her''), a wish that has not been previously identified in other similar studies [5,9,10]. …”

“…Relatively few international studies [4][5][6][7] and one in South Africa [8] have examined the everyday experiences of caring for a child with chronic feeding difficulties, and little information is available on factors that enable or hinder a mother's capacity to provide such care. Mothers and other caregivers may feel unprepared for the demands of caring for a child who requires adapted feeding strategies [5,9,10]. Mealtimes are often described as difficult.…”

“…When the ideal of meeting a child's feeding needs with ease is unattainable, a perception of inadequacy may arise [13]. Though only a small number of studies have evaluated parental experiences of managing enteral feeding at home, what emerged was that it was often associated with caregiver burden, perceptions of loss, and a greater degree of stress was experienced relative to that of mothers with children who had disabilities but who could still be fed orally [3,5,14]. The initial decision to have a gastrostomy tube inserted was found to be difficult for mothers to make, which was not necessarily made easier where oral feeding was challenging [4].…”

“…Research on experiences of feeding has been conducted primarily in Australia, North America, and the United Kingdom [4][5][6][7]9]. South Africa potentially provides a very different developing-nation context in which mothers are accessing healthcare services and providing home-based care for children with chronic feeding difficulties, thus highlighting the need for a study to be conducted in Cape Town.…”

Feasibility of conducting a prospective cohort study in pediatric surgery: introducing the Caregiver Quality of Life of pediatric patients referred for feeding tube insertion (CARE) study

“…Based on the study protocol designed at the inception of this study, completion of the follow-up visits has been excellent (91.3%) despite challenges with the number and length of time between scheduled follow-ups [19][20][21].…”