Oral mucositis: a phenomenological study of pediatric patients' and their parents' perspectives and experiences

Abstract

Goal: The purpose of this qualitative phenomenological study was to describe children's and their parents' lived experiences of oral mucositis (OM) and to explore their needs in relation to OM.

Materials and methods: Individual semistructured interviews were conducted with 22 children who had experienced WHO grade > or = 2 OM during chemotherapy within the previous 6 months. Parents from each family were also interviewed in the same way. Interviews were audio recorded and fully transcribed verbatim. Data were analyzed using inductive content analysis.

Results: The mean ages of the children and parents were 12 and 41 years, respectively. Regarding gender, 55% of the children were boys, and 95% of the parents were mothers or grandmother. Forty-one percent of the children were diagnosed with acute lymphoblastic leukemia, and 36% were treated with methotrexate. The findings illustrated that the experience of OM impacted on the lives of the children and their parents. Five themes, which subsumed a number of categories, were constructed: "Symptoms experienced," "Negative emotional outcomes," "The dilemma of eating (or not eating)," "Challenges in oral care," "Health care needs." Mouth and throat pain were found to cause a number of severe consequences in daily life. Many children experienced turmoil characterized by a panoply of emotions. All parents described psychological distress on various levels which they attributed to the burden of care and the suffering of their children. OM can present a difficult dilemma to patients: on the one hand, children found it too painful to chew and swallow food, while on the other hand they felt very hungry. Children were aware of the significance of oral care. Discomfort associated with oral care forced some children to neglect oral care. Parents also described oral care as a stressful event for their children and for them. Children needed more activities coordinated by the ward to distract them from their OM, as well as psychological support from the health care professionals. Parents indicated the need for more information about the process of OM and food selection.

Conclusion: Findings from this study illustrate the complex biopsychosocial impact of chemotherapy-induced OM on children and their parents. Optimal OM pain management guidelines and holistic supportive care strategies should be developed in conjunction with OM strategies in the future.