Abstract
BACKGROUND: Feeding disorders and gastrointestinal problems are among the most prevalent concerns in children who are eligible for palliative care. Many of these children require medical nutrition therapy and benefit from the involvement of healthcare professionals with expertise in nutrition, such as dietitians. Dietitians may help alleviate the practical and emotional burden parents experience when caring for their sick child at home. However, research is limited regarding dietitians' roles and contributions in children's palliative care. AIM: This study explores dietitians' experiences and perceptions of nutritional management and care of children in palliative care in Norway. METHODS: Semistructured interviews were conducted with 11 dietitians who provide nutritional management to children in palliative care, and the data were analysed using a reflexive thematic analysis approach, as described by Braun and Clarke. RESULTS: Four themes were developed through this analysis: First, nutrition is a core component of comprehensive palliative care; second, organisational placement affects dietitians' involvement; third, fragile structures for nutritional care; fourth, close bonds between the family and the dietitian. We found that dietitians face complex feeding and gastrointestinal challenges when working with children and view nutritional care as a responsibility best addressed by a multidisciplinary team, rather than a task for the dietitian to manage independently. Organisational structure impacts a dietitian's ability to collaborate effectively with other professionals in providing nutritional care. Dietitians' knowledge of children's palliative care is primarily experience-based, and they often lack professional support in decision-making processes. Nevertheless, dietitians maintain close, ongoing contact with the families of the children they treat and tailor their approach to meet these families' needs as the children's conditions progress. CONCLUSION: Nutrition is a core component of comprehensive palliative care and can impact the quality of life of children and their families. Therefore, it should be an integrated component of multidisciplinary palliative care for children.