Adaptation Strategies for Coping With the Impact of Sensory Alterations on Eating Behavior in Children With Cancer: A Qualitative Study From the Perspective of Children and Parents

Childhood cancer represents a major public health concern and remains one of the leading causes of disease-related mortality in children. Advances in treatment have improved survival, but chemotherapy is frequently associated with adverse effects that significantly impact nutritional status and quality of life. Malnutrition affects approximately 40-60% of pediatric oncology patients and is associated with poorer treatment tolerance, increased risk of infection, immune dysfunction, and reduced survival.

Among treatment-related toxicities, alterations in taste (dysgeusia) and smell (dysosmia) are increasingly recognized as key contributors to feeding difficulties. Chemotherapy targets rapidly dividing cells, including gustatory and olfactory receptor cells, which may explain the high prevalence of sensory disturbances. Taste and smell play a central role in appetite regulation and food enjoyment; their disruption can lead to reduced intake, food aversions, and changes in texture preferences. Although these effects are well documented in adults, pediatric data remain limited and heterogeneous, particularly regarding children's subjective experiences and coping mechanisms.

Recent studies suggest that up to 60% of children receiving chemotherapy experience taste and/or smell alterations perceived as highly distressing. Adolescents frequently report that food "does not taste good" and that food-related smells trigger nausea. Parents often identify sensory changes as the main cause of feeding problems, yet discrepancies may exist between parental perceptions and children's lived experiences. Furthermore, little is known about how food texture perception evolves in children with cancer, despite evidence that tactile oral sensitivity can strongly influence food selectivity.

This study is designed as a prospective, monocentric, non-interventional observational study (RIPH3), using a qualitative methodology based on individual semi-structured interviews. Participants will include children aged 6-17 years undergoing chemotherapy for a malignant hematological or solid tumor, and one of their parents or legal guardians. Interviews will be conducted separately with children and parents to ensure independent data collection and minimize mutual influence. Fifteen children and one of their parent will be included.

The primary objective is to identify and describe the coping strategies used by children and parents to manage taste, smell, and texture alterations and associated changes in eating behavior during chemotherapy. Secondary objectives include characterizing the nature, frequency, intensity, and duration of reported sensory alterations; exploring their emotional and social impact; examining the influence of cancer type, treatment stage, and eating context (hospital versus home); and assessing concordance and discrepancies between children's and parents' experiences and descriptions.

Data analysis will follow a rigorous qualitative approach, including thematic coding, verification of code saturation, and cross-checking by a second researcher to ensure analytical reliability. Reflexivity will be supported through the use of a field journal documenting the researcher's observations and potential biases.

This study will be among the first qualitative investigations in France to focus specifically on chemo-sensory alterations in pediatric oncology from both the child's and the parent's perspectives. By identifying effective, family-driven coping strategies, the findings aim to inform future nutritional guidance, supportive care interventions, and clinical recommendations, ultimately improving nutritional outcomes and quality of life for children undergoing cancer treatment.

Inclusion criteria

Children:

• Aged 6 to 17 years old on the day consent is obtained.
• Diagnosed with a malignant hematological or oncological tumor.
• Possessing sufficient verbal ability to participate in the interview planned for the study.
• Having started chemotherapy treatment at least 2 months prior.
• Agreeing to participate in the study.
• Able to understand, read, and write French.
• Affiliated with a social security system.

Parents:

• Be the parent or legal guardian of a child aged 6 to 17 inclusive, with cancer and undergoing chemotherapy.
• Dated and signed informed consent.
• Able to understand, read, and write French.

Exclusion criteria

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