17 Caregiver experiences with enteral feeding transitions

Abstract

Abstract Background Children with medical complexity (CMC) are an expanding group within paediatrics due to advances in medical care, often including a dependence on medical technology. Issues such as oromotor swallowing dysfunction and feeding difficulties are common in this population. As a result, many CMC require the use of enteral tubes for feeding. While evidence does support improved nutritional status with the use of enteral feeding tubes, there is limited literature discussing how these interventions impact other patient centered outcomes, such as quality of life for the child, changes in parental caregiving, and logistical implications for the family. A comprehensive understanding of the positive and negative outcomes associated with selection and transition between different feeding tube options is needed. Objectives To describe and explore the caregiver and patient experience with different feeding tubes, with a focus on the experience of transitioning between different enteral feeding modalities. Design/Methods We conducted semi-structured interviews with 16 participants, including both caregivers and two patients. Reflexive thematic analysis was utilized to identify preliminary themes from interviews. Themes were further refined by the study team. Results The themes identified through interviews included: A) the pros and cons with each type of enteral feeding modality, B) the emotional impacts on patients and caregivers, C) logistical impacts on day-to-day life for families, and D) the experience of transitioning between feeding tubes. Globally, participants spoke positively about their transition from nasogastric feeding to either gastrostomy or gastrojejunal feeding tubes. Caregivers also felt that they were integral to the decision-making process, though some felt in hindsight the transition process was too slow. Conclusion This study highlights both the complexity and heterogeneity of the caregiver experience with different feeding tubes. It found that most families consistently viewed their transitions with enteral feeding tubes positively, as this was seen as a significant milestone in helping their child both nutritionally and with their quality of life. Finally, further research could be done to explore experiences with gastrojejunal and jejunal feeding, as this patient population is not well elucidated within the literature.