Participation and engagement in family activities among girls and young women with Rett syndrome living at home with their parents – a cross-sectional study

Figures & data

Table 1. Characteristics of the girls and young women (n = 23).

Variables	n (%)
Answering questionnaires
Mother	19 (82.6)
Father	4 (17.4)
Age^a
<13 years, n = 14	7.5 (3.4–12.5)
≥13 years, n = 9	17.0 (15.4 − 19.8)
Type of gene variant
C-terminal	5 (21.7)
Large deletion	4 (17.4)
p.Arg106Trp	1 (4.4)
p.Arg168*	3 (13.0)
p.Arg270*	1 (4.4)
p.Arg294*	1 (4.4)
p.Thr158Met	4 (17.4)
Other	4 (17.4)
HAS^b
Community ambulator	11 (50.0)
Household ambulator	2 (9.1)
Therapeutic ambulator	2 (9.1)
Nonambulant/standing	4 (18.2)
Nonambulant/non-standing	3 (13.6)
CSS^a^,b
≤24 points, n = 11	20 (10–24)
>24 points, n = 11	28 (25–38)
Level of hand function^a^,b	1.5 (1–8)
No observed hand function, n = 11	1.0 (1)
Observed hand function, n = 11	5.0 (2–8)

^amedian (range); ^bn = 22.

Table 2. Family characteristics (n = 23).

Variables	n (%)
Answering questionnaires
Mother	19 (82.6)
Father	4 (17.4)
Mother and stepfather	2 (8.7)
Number of siblings living at home
0	1 (4.4)
1	10 (43.5)
2	9 (39.1)
3	2 (8.7)
4	0 (0)
5	1 (4.4)
Total annual income (USD)^a^,b
<22.199	1 (4.8)
22.200 − 44.399	0 (0)
44.400 − 73.999	4 (19.1)
74.000 − 118.399	10 (47.6)
>118.400	6 (28.6)
Education, mother
Lower secondary school (≤9th grade)	0 (0)
Higher secondary school (10th–12th grade)	2 (8.7)
Vocational education and training	6 (26.1)
Graduate education (academic degree)	15 (65.2)
Education, father/stepfather^a
Lower secondary school (≤9th grade)	1 (4.8)
Higher secondary school (10th–12th grade)	0 (0)
Vocational education and training	10 (47.6)
Graduate education (academic degree)	10 (47.6)
Employment, mother
Full-time	6 (26.1)
Part-time	11 (47.8)
Job seeking	1 (4.4)
Student	2 (8.7)
Economic compensation	3 (13.0)
Employment, father/stepfather^a
Full-time	19 (90.5)
Part-time	0 (0)
Job seeking	0 (0)
Student	0 (0)
Economic compensation	2 (9.5)

^an = 21; ^bconverted from DDK 2019-11-22.