Support needs of families with a child with profound intellectual and multiple disabilities

Figures & data

Table 1. Characteristics of participants (family, parents, and child with PIMD).

Characteristic (family)	Families (N = 44)
	n
Family type
Nuclear family	18
Single parent	1
Reconstituted family	0
Other	1
Annual family income
< € 20,000.-	0
€ 20,000.- - € 65,000.-	12
> € 65,000.-	6
Unknown	2
Number of family members
3	6
4	4
5	9
6	1
Characteristic (parent)	Fathers (N = 4)	Mothers (N = 4)
	n	n
Highest educational level
Secondary education	0	1
Intermediate vocational training (MBO)	1	1
Higher vocational training (HBO)	1	10
University (WO)	2	4
Employment
Full-time (≥35 h)	0	4
Part-time (0–35 h)	3	10
Unemployed	1	2
Characteristic (child)	Children (N = 20)
	n
Age category
Child (0–9 years)	10
Teenager (10–17 years)	5
Adult (18–30 years)	5
Residence
At home	16
Partly at home, partly out of home	4
Out of home	0
GMFCS level^a
IV	6
V	14
Communicative abilities^b
Uses sounds	16
Uses eyes, facial expressions and body language	18
Communicative support^b
Signs	1
Symbols/icons	3
Single message device	4
Speech-generating device	3
Other/no support	14
Additional disabilities^b
Visual problems	12
Hearing problems	3
Epilepsy	16
Reflux	9
Chronic airway infection	8
Difficulties with swallowing and chewing	16
Chronic obstipation	10
Behavioural problems	3
Sleep problems	9
Tube feeding	10
Scoliosis	10
Often very ill	3
Other	5

^a Gross Motor Functioning Classification System (Palisano et al. 1997).

^b Multiple answers could be selected.

Figure 1. Visualization of hierarchy of domains and codes.

Palisano, R., Rosenbaum, P., Walter, S., Russell, D., Wood, E. and Galuppi, B. 1997. Development and reliability of a system to classify gross motor function in children with cerebral palsy. Developmental medicine and Child Neurology, 39, 214–223.

 PubMed Web of Science ®Google Scholar