Abstract
Objective
Feeding and swallowing difficulties in children are increasing due to improved survival rates of children with complex medical conditions. Despite being common complications of esophageal atresia (EA), EA related feeding difficulties have received little attention in research. Establishing positive feeding interactions and practices are important for child health and development, and for parental and child mental health. The current study aimed to investigate the parental experiences of feeding a child born with EA.
Methods
An international online survey was developed and disseminated to parents of children born with EA, aged 0–12 years, in collaboration with a patient charity for EA. Reflexive Thematic Analysis was used to analyze the qualitative survey responses.
Results
176 participants were included in the qualitative sample from a larger international online survey study, chosen by a process of selective coding. Three themes were constructed during the analysis: 1) Anxiety, trauma and loss; 2) Isolated and unsupported; and 3) Supported. The results indicated that parents of children born with EA experienced significant anxiety related to their child's swallowing and feeding difficulties and traumatic experiences during feeding, and that these led to parents feeling a sense of loss and sadness. It was also found that support, or a lack of support, within parents' social environment might mediate parental experiences of child's feeding difficulties.
Conclusions
This study highlighted the importance of support for parents of children born with EA, and suggested a need for improved guidance for feeding and swallowing difficulties.
Feeding and swallowing difficulties in children are increasing due to improved survival rates of children with complex medical conditions. Despite being common complications of esophageal atresia (EA), EA related feeding difficulties have received little attention in research. Establishing positive feeding interactions and practices are important for child health and development, and for parental and child mental health. The current study aimed to investigate the parental experiences of feeding a child born with EA.
Methods
An international online survey was developed and disseminated to parents of children born with EA, aged 0–12 years, in collaboration with a patient charity for EA. Reflexive Thematic Analysis was used to analyze the qualitative survey responses.
Results
176 participants were included in the qualitative sample from a larger international online survey study, chosen by a process of selective coding. Three themes were constructed during the analysis: 1) Anxiety, trauma and loss; 2) Isolated and unsupported; and 3) Supported. The results indicated that parents of children born with EA experienced significant anxiety related to their child's swallowing and feeding difficulties and traumatic experiences during feeding, and that these led to parents feeling a sense of loss and sadness. It was also found that support, or a lack of support, within parents' social environment might mediate parental experiences of child's feeding difficulties.
Conclusions
This study highlighted the importance of support for parents of children born with EA, and suggested a need for improved guidance for feeding and swallowing difficulties.
| Original language | English |
|---|---|
| Pages (from-to) | e9-e15 |
| Journal | Journal of Pediatric Nursing |
| Volume | 67 |
| Early online date | 3 Nov 2022 |
| DOIs | |
| Publication status | Published - 30 Nov 2022 |
Bibliographical note
We would like to thank all the parents taking part in the study, and the Tracheo-Esophageal Fistula Support (TOFS), Registered Charity in England and Wales (327735), for their financial support and invaluable help with participant recruitment. We would like to acknowledge the patient-led approach used in this study, including the main author (VW) being born with EA.We would also like to thank Dr. Maria Loades for her valuable and helpful comments on an earlier draft.
Funding Information:
The findings of the current study suggest that information and support for EA related feeding difficulties is needed, and that patient voice is important in developing guidance for rare diseases. This study recommends a guidance for EA related feeding difficulties to include: 1) Information about what to expect when feeding a child born with EA; 2) First aid skills and safe feeding practices; 3) Guidance on how to deal with food sticking in child's esophagus; and 4) Guidance on how to recognize and cope with uncomfortable emotions and difficult feelings during feeding.
Keywords
- Anxiety
- Feeding difficulties
- Parents
- Qualitative methods
- Social support
ASJC Scopus subject areas
- Pediatrics
