The IMPACT survey: a mixed methods study to understand the experience of children, adolescents and adults with osteogenesis imperfecta and their caregivers

Table 4 Caregiver and close relative demographics

Caregiver relation, n (%)^b,c	n = 700^a
Parent	684 (98)
Sibling	2 (0.3)
Grandparent	7 (1)
Legal guardian	18 (3)
Prefer not to say	0 (0)
Other	2 (0.3)
Number of care recipients with OI in household, n (%)^d,c
Households with 1 care recipient	632 (90)
Households with 2 care recipients	56 (8)
Households with 3 care recipients	12 (2)
Number of care recipients without OI in household, n (%)^d
Households with 0 siblings	302 (43)
Households with 1 sibling	284 (41)
Households with 2 siblings	91 (13)
Households with 3 siblings	18 (3)
Households with 4 siblings	5 (0.7)
Close relative relation, n (%)^e	n=116
Partner of a person with OI	33 (28)
Sibling of a person with OI	23 (20)
Friend of a person with OI	17 (15)
Grandparent of a person with OI	14 (12)
Aunt of a person with OI	8 (7)
Child of a person with OI	4 (3)
Friend of a caregiver for a child with OI	3 (3)
Support teacher of a person with OI	3 (3)
Doctor of a person with OI	2 (2)
Grandchild of a person with OI	2 (2)
Great aunt of a person with OI	2 (2)
Brother-in-law of a person with OI	1 (1)
Caregiver of a person with OI	1 (1)
Godmother	1 (1)
Mother of a person with OI	1 (1)
Mother of a deceased child with OI	1 (1)

OI, osteogenesis imperfecta
^aIncludes caregiver adults with OI and caregivers without OI. Of 710 caregivers 700 provided information on care recipients with OI; ^b14 respondents indicated > 1 relation to a care recipient; ^cQuestion 24 “What is your relationship to the child/children with OI in your care?”. Respondents could pick more than one option including: parent, sibling, grandparent, legal guardian, prefer not to say, other and provide free text. ^dQuestions 22 and 23 included a drop down with numerals from 1 to 3 and 0 to 4 respectively. ^eQuestion 396 “Please indicate which of the following best describes your relationship to the person with OI”. Answer options included: child of a person with OI, sibling of a person with OI, grandparent of a person with OI, partner of a person with OI, other relationship to a person with OI (please specify below)

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