“I love my sister, but sometimes I don't”: A qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities^†

† This manuscript was accepted under the Guest Editorship of Roy Brown.

Figures & data

Table 1. Characteristics of participants and children with profound intellectual and multiple disabilities (PIMD).

	Typically developing child (n = 18)			Sibling with PIMD (n = 14)
Characteristics	M (SD)	n	%	M (SD)	n	%
Age (in years)	9.1 (2.1)			9.3 (3.6)
6–7		3	16.7
8–9		8	44.4
10–11		5	27.8
12–13		2	11.1
Gender
Female		9	50.0		8	57.1
Male		9	50.0		6	42.9
Position in relation to child with PIMD
Older		8	44.4
Younger		9	50.0
Missing		1	5.6

Table 2. Coding system describing the number and percentage of coded fragments within a domain.

Domains of sibling quality of life	Operationalisation of the domain (subdomains)
1. Joint activities (n = 170; 34.1%)	No joint activity (n = 56)
	Non-adapted joint activity (n = 26)
	Adapted joint activity (n = 55)
	Care-related activities (n = 33)
2. Mutual understanding (n = 91; 18.3%)	Understanding what sibling wants, mean, feels (n = 67)
	Not understanding what sibling wants, means, feels (n = 16)
	Feeling understood by the sibling (n = 4)
	Not feeling understood by the sibling (n = 4)
3. Private time (n = 44; 8.8%)	Spending time without the sibling (n = 30)
	Personal hobbies (n = 6)
	Lack of time for personal activities because of the sibling (n = 6)
	Lack of time with parent(s) because of the sibling (n = 2)
4. Acceptance (n = 63; 12.7%)	Accepting the disability in their own way (n = 32)
	Difficulties with accepting the disability (n = 21)
	Seeing advantages of having a sibling with a disability (n = 10)
5. Forbearance (n = 40; 8.0%)	Dealing/coping with behaviour of the sibling (n = 7)
	Finding it hard to deal with behaviour of the sibling (n = 32)
6. Trust in wellbeing (n = 62; 12.4%)	Trust in wellbeing of the sibling and the use of aids (n = 27)
	Concern about welfare of the sibling (n = 10)
	Feeling happy when the sibling is happy or sad when not (n = 25)
7. Exchanging experiences with other siblings of children with a disability (n = 0; 0.0%)	–
8. Social support (n = 13; 2.6%)	Other brother(s) or sister(s) (n = 2)
	Missing a typically developing sibling (n = 4)
	From other relatives (n = 2)
	From friends (understanding or not) (n = 5)
9. Dealing with the outside world (n = 15; 3.0%)	Support and help from wider circle (n = 4)
	Difficulties with wider circle, frustrations, staring (n = 11)

Note. Total coded fragments = 498.