Table 5.

Family burden and PQoL

Scale results	Mean (SD)	Range	Cronbach’s alpha
FaBel scores
Daily/social impact	2.28 (0.63)	1.2–3.8	0.88
Personal strains	2.45 (0.62)	1–3.6	0.45
Financial burden	2.05 (0.69)	1–3.5	0.63
Impact on siblings	0.59 (0.51)	1–3	0.69
Problems in coping	1.87 (0.59)	1–3	0.28
FaBeL total score (without sibling items)	2.39 (0.46)	1.3–3.2	0.85
ULQIE scores
Physical and daily functioning	2.37 (0.73)	0.85–3.85	0.87
Satisfaction with family	2.82 (0.81)	0.67–4	0.83
Emotional stability	2.15 (0.98)	0–3.75	0.81
Self-development	1.57 (0.87)	0–4	0.85
Well-being	2.48 (0.75)	1–3.75	0.66
ULQIE total score	2.33 (0.67)	0.82–3.62	0.94

Family Burden Questionnaire (FaBel): 4-point Likert rating scale ranging from 1 (“strongly agree”) to 4 (“strongly disagree”). Higher scores indicate higher family burden. Ulm Quality of Life Inventory for Parents of Chronically Ill Children (ULQIE): 5-point Likert rating scale ranging from 0 (“never”) to 4 (“always”). Higher scores indicate higher PQoL