Mothers’ experiences and perceptions of their child’s weaning process from tube feeding within a multidisciplinary Paediatric Feeding Program

Abstract

Objectives Previous studies have described the negative impact that tube feeding of children with complex chronic diseases has on the caregivers’ emotions, relationships and daily life. It is unclear whether these negative experiences persist or change during and after the weaning process. We sought to explore mothers’ experiences and perceptions of their child being weaned off tube feeding within a Paediatric Feeding Program (PFP). Methods We conducted a qualitative study using semi-structured interviews with mothers whose children <4 years old had experienced feeding tube weaning within an outpatient, family-centred, telemedicine-supported PFP. The transcripts were analyzed using thematic analysis. Results We conducted 9 interviews with mothers of children (n = 10) in the PFP at which point data saturation was achieved. Three main themes emerged: a) the initial emotional toll on mothers stemming from fear of perceived adverse consequences of decreasing tube feeds and uncertainty surrounding efficacy of weaning; b) achievement of weaning via a family-centered approach through gaining trust, close contact, and collaboration with the team; and c) attainment of mothers’ expectations of family life through transformed relationships and social activities. A positive evolution of emotions was observed, attributable to the support of the PFP. Conclusions These experiences suggest that our outpatient weaning program had a positive impact on the stress, fear, and relational challenges that mothers reported before and during initial tube weaning. These findings highlight potential areas of discussion with families at multiple stages of the child’s tube feeding experience, to help normalize emotions for families and support coping strategies.

Parents' experiences of their child's transition from tube to oral feeding during an intensive intervention programme

“…Although previous research has evaluated the significant impact of tube feeding on both the child and their family members (Hopwood et al, 2020; Krom et al, 2019; Pederson et al, 2004; Tarbell & Allaire, 2002; Wilken, 2012), there is only a very limited evidence base exploring parental experiences during the tube weaning process (Cipolla et al, 2022). This study contributes to this evidence base by demonstrating that initiating and engaging in tube weaning is an emotional process that is challenging, multi‐factorial and individual to each family and is influenced by their experiences of parenting their medically complex child up to that point.…”

“…However, there is very limited research on the actual weaning process as experienced by the child or their parents. Mothers' experiences and perceptions whilst undertaking tube weaning have been investigated, and key themes identified were maternal emotional stress, collaboration with the team and resumption of a more typical family life (Cipolla et al, 2022). Although the high levels of maternal responsibility and expertise in tube feeding have become increasingly acknowledged (Clouzeau et al, 2021; Hopwood et al, 2020, 2021; Tarbell & Allaire, 2002), we are yet to understand the barriers, facilitators and emotional journey mothers and fathers experience during the tube weaning process.…”