EXPLORING THE EXPERIENCE OF ACUTE IMMUNE THROMBOCYTOPENIC PURPURA THROUGH NARRATIVES OF CHILDREN WITH IMMUNE THROMBOCYTOPENIC PURPURA, THEIR PARENTS, AND HEALTH CARE PROFESSIONALS

Background: Treatment options for typical, acute immune thrombocytopenic purpura (ITP) include IVIG, steroids, anti-D, and observation. The decision is preference-sensitive; there is no clearly superior option, and families’ values may be considered in making an informed choice. Understanding the experience of acute ITP is essential for informing the development of a patients’ decision aid that will help families actively participate in the decision making process.   

Purpose: To explore the experience of diagnosis, treatment, and outcomes for children with ITP, their parents, and health care professionals, towards the broader goal of developing a decision aid.   

Method: We conducted six focus groups comprising two groups each of children (N=7), parents (N=16), and professionals (N=10), recruited from a large urban children’s teaching hospital. Thematic analysis was employed whereby team members examined transcripts and developed a codebook, allowing for systematic coding of the data. Rigor was assured by multiple investigators’ involvement in each stage of the process. The NVivo 8 software package was used to assist in data management.   

Result: Analysis of the data yielded three dominant themes. 1. Emotions: anxiety and fear were pervasive throughout the parents’ and children’s dialogues, relating to all aspects of their ITP experience. 2. Communication: positive, negative, and ideal communication strategies regarding diagnosis and treatment permeated all accounts. 3. Decision making: parents described variations in levels of participation in decision making, while professionals acknowledged a discrepancy between the ideal goal of parental involvement and the current practice of directed recommendations.   

Conclusion: The emotional impact of ITP, communication issues, and participation in decision making are important aspects of the ITP experience. These themes should be considered by health care professionals when caring for children with acute ITP, and will inform the development of a patients’ decision aid.