When children have serious illnesses, eating and digestion problems are very common and really hard for families to handle. This study talked to 11 nutrition experts in Norway who work with these children to understand how they help. The experts found that good nutrition care works best when doctors, nurses, and nutrition specialists all work together as a team. They also discovered that how hospitals are organized affects whether nutrition experts can do their job well, and that families feel much better when they have a trusted nutrition expert helping them through their child’s care journey.

The Quick Take

  • What they studied: How nutrition experts (called dietitians) help children with serious illnesses manage eating problems and stomach issues, and what challenges they face in their work
  • Who participated: 11 nutrition experts from Norway who regularly work with children receiving palliative care (specialized care for seriously ill children)
  • Key finding: Nutrition experts believe that helping seriously ill children eat well is a big part of their overall care, but they need support from other doctors and nurses to do it effectively. They also found that how hospitals organize their teams affects whether nutrition experts can help families properly.
  • What it means for you: If your child has a serious illness, asking for a nutrition expert to be part of your care team may help with eating problems and give your family important support. However, this research shows that not all hospitals have good systems in place yet to make this happen easily.

The Research Details

Researchers interviewed 11 nutrition experts who work with seriously ill children in Norway. They asked these experts detailed questions about their experiences, challenges, and how they help families. The interviews were recorded and carefully analyzed to find common themes and patterns in what the experts said.

This type of study is called qualitative research, which means the researchers were looking for detailed stories and experiences rather than numbers or statistics. The researchers used a method called reflexive thematic analysis, which is a careful way of organizing what people say into meaningful groups or themes.

The nutrition experts came from different types of healthcare settings in Norway, which helped the researchers understand how different organizations affect the work these experts do.

This research matters because very few studies have asked nutrition experts what they actually experience when working with seriously ill children. By listening to their real-world experiences, we can understand what’s working well and what needs to improve. This helps hospitals and healthcare systems make better decisions about how to organize care for these vulnerable children and their families.

This study has some important strengths: it focused on real experiences from actual nutrition experts, the researchers were careful and thoughtful in analyzing what was said, and the findings came directly from people doing this work every day. However, the study only included 11 experts from Norway, so the findings may not apply everywhere in the world. Also, because this is qualitative research (based on stories rather than numbers), it’s meant to help us understand experiences deeply rather than prove something works for everyone.

What the Results Show

The nutrition experts identified four main themes about their work. First, they strongly believe that helping children eat well is a core part of caring for seriously ill children, not just an extra service. Second, they found that where they work in the hospital system really matters—if they’re well-connected to other doctors and nurses, they can help families much better.

Third, the experts described fragile structures for nutrition care, meaning that the systems supporting their work are not always strong or reliable. They often lack clear guidelines and professional support when making difficult decisions about feeding children with complex problems. Fourth, the experts talked about forming close bonds with families, spending ongoing time with them, and adjusting their advice as the child’s condition changes.

The nutrition experts emphasized that they cannot and should not work alone. They see nutritional care as a team responsibility that requires doctors, nurses, social workers, and other specialists working together. When this teamwork happens, families feel more supported and children’s quality of life improves.

The experts revealed that much of their knowledge about caring for seriously ill children comes from their own experience rather than formal training. They often feel they lack professional support and clear guidelines when facing difficult feeding and stomach problems. Despite these challenges, the experts maintain close, ongoing relationships with families and adjust their approach as children’s conditions change. This personal connection appears to be very valuable to families, even when the nutrition expert works within an imperfect system.

Previous research has shown that feeding and digestion problems are very common in seriously ill children, but very few studies have asked nutrition experts about their actual experiences and challenges. This study fills that gap by providing detailed insights into how nutrition experts work, what they struggle with, and how they help families. It confirms that nutrition is important in palliative care and adds new information about how hospital organization affects whether families can access this expertise.

This study only included 11 nutrition experts from Norway, so we don’t know if these findings apply to other countries with different healthcare systems. The study didn’t include perspectives from doctors, nurses, or families themselves, so we’re only hearing one side of the story. Also, because this is qualitative research based on interviews, the findings describe experiences and themes rather than measuring how often things happen or proving that certain approaches definitely work better than others.

The Bottom Line

Based on this research, healthcare systems should: (1) Make sure nutrition experts are part of the team caring for seriously ill children (moderate confidence—based on expert opinion); (2) Organize hospitals so nutrition experts can easily communicate with doctors and nurses (moderate confidence); (3) Provide nutrition experts with professional support, training, and clear guidelines for caring for seriously ill children (moderate confidence); (4) Recognize that nutrition care is a team effort, not something one person should handle alone (moderate confidence).

Parents and families of seriously ill children should care about this research because it shows that having a nutrition expert involved in care can help with eating problems and provide important emotional support. Healthcare administrators and hospital leaders should care because it shows how organizational structure affects whether families can access nutrition expertise. Doctors and nurses should care because it emphasizes the importance of teamwork in nutrition care. Nutrition experts themselves should care because it validates their important role and identifies areas where they need better support.

Families might notice improvements in eating problems and feel more supported within weeks of starting to work with a nutrition expert, but significant changes in a child’s nutrition and quality of life may take months. The emotional support and sense of partnership with a nutrition expert often begins immediately and continues throughout the child’s care journey.

Want to Apply This Research?

  • Track daily feeding attempts, amounts eaten, and any stomach or digestion problems. Also note the child’s energy level and comfort during meals. This information helps nutrition experts see patterns and adjust recommendations.
  • If you have a seriously ill child, ask your healthcare team if a nutrition expert can be part of your care team. Keep a simple food and symptom diary to share with your nutrition expert at each visit. This helps them understand what’s working and what needs to change.
  • Work with your nutrition expert to set up regular check-ins (weekly or monthly depending on your child’s needs). Use the app to track feeding challenges, digestion issues, and how your child feels. Share this information with your nutrition expert so they can adjust their recommendations as your child’s condition changes. Also track how supported you feel as a parent—this is an important part of good nutrition care.

This research describes nutrition experts’ experiences and perspectives on caring for seriously ill children—it does not provide medical advice. If your child has a serious illness with feeding or digestion problems, please work with your child’s healthcare team, including a qualified nutrition expert, to develop a personalized care plan. The findings from this study are based on interviews with 11 experts in Norway and may not apply to all healthcare settings or countries. Always consult with your child’s doctors before making any changes to feeding or nutrition care.