A Narrative Approach to Describe QoL in Children With Chronic ITP

Area of Science:

• Hematology
• Psychology
• Family Medicine

Background:

• Primary immune thrombocytopenia (ITP) is a hemorrhagic disorder affecting children.
• While many pediatric cases resolve spontaneously, 20-30% develop chronic ITP.
• Chronic ITP significantly impacts family dynamics and financial stability.

Purpose of the Study:

• To assess a narrative instrument's effectiveness in enhancing the quality of life for pediatric chronic ITP patients and their families.
• To quantify the familial burden associated with pediatric chronic ITP.
• To identify patient and family coping mechanisms through a narrative approach.

Main Methods:

• A quantitative survey and an online narrative plot were employed.
• Pediatricians introduced the project to patients and families at ten Italian Hematologic Centers.
• 70 caregivers completed an ad-hoc questionnaire, with data from 53 analyzed.

Main Results:

• The study revealed the significant emotional impact of chronic ITP on caregivers.
• The narrative intervention highlighted specific resources utilized by families to manage the disease.
• Caregivers reported positive feedback, describing the experience as liberating and quality-of-life enhancing.

Conclusions:

• A narrative approach can improve the quality of life for families managing pediatric chronic ITP.
• Understanding familial burden and coping strategies is crucial for supportive care.
• Caregivers emphasized the importance of compassionate interactions with healthcare professionals.