Grief, Uncertainty and Community: A Qualitative Study on Parental Experiences of Paediatric Feeding Disorders and Feeding Tube Use in Singapore

Abstract

AimTo explore the perceptions and experiences of parents caring for children with paediatric feeding disorders requiring feeding tubes (PFD‐T).Study DesignA descriptive qualitative approach was adopted in this study.MethodsUsing purposive sampling, 12 parents were recruited from paediatric inpatient wards and the outpatient paediatric feeding clinic at a tertiary public hospital in Singapore. Data collection was done from July to December 2024. Semi‐structured one‐on‐one interviews were conducted with the parents (fathers or mothers) until data saturation. Thematic analysis was used to identify themes from the interview content.ResultsA total of three themes and six subthemes were identified, encapsulating the challenges experienced by parents with caregiving and feeding tube management, as well as the sources of support they had. The themes are: (1) A sense of community, (2) Grieving over the loss of normalcy and (3) Facing the unknown.ConclusionParents in this study felt supported being in a community of other parents with children who have PFD‐T. It enabled them to gain valuable information and offered them a space where they felt understood. At the same time, they expressed feelings of guilt and isolation, as the caregiving demands led to limited capacity to cater to or interact with other loved ones. Additional challenges parents faced included transitioning between types of feeding tubes and insufficient support from healthcare professionals.Trial and Protocol RegistrationEthical approval was obtained from the National Health Group Domain Specific Review Board (DSRB 2024/00064) on 8 May 2024.Reporting MethodThis study followed the reporting guidelines outlined by the COnsolidated criteria for REporting Qualitative (COREQ) research checklist.Public ContributionThis study did not include patient or public involvement in its design, conduct, or reporting.