Down syndrome or Rett syndrome in the family: Parental reflections on sibling experience

Figures & data

Table 1. Demographics of mothers, children with Down syndrome or Rett syndrome, and family characteristics.

Demographics	Down syndrome	Rett syndrome
	n (%); median (IQR), range	n (%); median (IQR), range
MOTHERS	156 (100)	149 (100)
Maternal age at birth of the child with disability (years)	31 (28–35), 19–57	29 (26–33), 17–41
<20	1 (1)	3 (2)
20–24	11 (7)	22 (15)
25–29	45 (29)	52 (35)
30–34	58 (37)	48 (32)
35–39	25 (16)	21 (14)
>39	16 (10)	3 (2)
Age at questionnaire (years)	54 (50–57), 37–80	45 (42–50), 28–64
30–39	1 (1)	2 (1)
40–49	36 (23)	22 (15)
50–59	88 (56)	83 (56)
60–69	26 (17)	37 (25)
>70	5 (3)	4 (3)
CHILD WITH DISABILITY
Gender
Male	85 (54)	0 (0)
Female	71 (46)	149 (100)
Age at questionnaire (years)	21 (18–25), 15–30	16 (11–21), 3–31
<5	0 (0)	6 (4)
5–12	0 (0)	44 (29)
13–18	47 (30)	47 (32)
19–25	80 (51)	40 (27)
>25	29 (19)	12 (8)
Position in the family
Youngest	58 (37)	59 (40)
Middle	51 (33)	33 (22)
Oldest	47 (30)	57 (38)
FAMILY CHARACTERISTICS
Family size	3 (3–4), 2–8	3 (2–4), 2–8
Small <3 children	32 (20)	56 (38)
Medium 3–5 children	93 (60)	71 (48)
Large >5 children	31 (20)	21 (14)
Birth spacing
First-born to second child	2 (2–4), 1–20	3 (3–5), 2–15
Last-born to second last child	4 (3–7), 1–14	3 (2–4), 1–16
Sibling ages	25 (19–32), 2–51	18 (12), 1–45
Response levels per question
Advantages	137 (88)	126 (85)
Disadvantages	112 (72)	132 (89)
Recreation	139 (89)	111 (74)
Holidays	136 (87)	118 (79)

Figure 1. Perceived parental availability of time, proportion of total possible scores, per domain, per condition.

Figure 2. Perceived parental availability of time, frequency of “not at all adequate” responses, per domain, per condition.

Figure 3. Parent perceived advantages for siblings of children with Down syndrome or Rett syndrome.

Figure 4. Parent perceived disadvantages for siblings of children with Down syndrome or Rett syndrome.

Figure 5. Parent perceived impact of having a child with Down syndrome or Rett syndrome on family recreation activities.

Figure 6. Parent perceived impact of having a child with Down syndrome or Rett syndrome on family holidays.