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

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).

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.

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.

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.