Table 2.

Classification of themes and categories

Theme	Category	Number of codes
Support needs for patients		18
	Difficulties in disease acceptance	4
	Progression of symptoms	4
	Difficulties with activities of daily living	7
	Challenges in relationships with others	3
Support needs for families		22
	Burden of caring for parents	5
	Challenges for siblings	4
	Concerns as a genetic disorder	5
	Collaboration with supporters	5
	Relationships with people outside the family	3
The impact of treatment		15
	Difficulties in diagnosis	3
	Challenges for HSCT	5
	Utilization of supportive care	3
	Expectations for future treatments	4
Challenges within support systems		20
	Utilization and dissatisfaction with support systems	11
	Barriers to schooling	9

HSCT; hematopoietic stem cell transplantation