“I hope I’ll outlive him”: A qualitative study of parents’ concerns about being outlived by their child with profound intellectual and multiple disabilities

Figures & data

Table 1. Respondents and their children.

Respondent	Age group	Age group child(ren) with PIMD	Developmental age child(ren)*	Living situation child(ren) with PIMD
Mother-1	40–50	10–20	Motor: 0–3 months Cognitive: 18 months	Home
Mother-2	50–60	20–30	0–3 months	Home
		20–30	0–3 months
Mother-3	50–60	20–30	3 months	Home
Mother-4.1	60–70	30–40	6–12 months	Home
Father-4.2	60–70
Mother-5	50–60	20–30	0–6 months	RCF
Mother-6	50–60	10–20	8 months	Home
Mother-7	60–70	20–30	12 months	Home
Mother-8	40–50	10–20	8–12 months	Home
Mother-9	60–70	20–30	6–8 months	RCF
Mother-10	40–50	10–20	12–16 months	RCF initiated by parents
Mother-11	60–70	20–30	–	Home
Mother-12	50–60	10–20	0–4 months	Home
Mother-13	40–50	10–20	–	Home
Mother-14	50–60	20–30	Motor: 9–12 months Cognitive: 24 months	Home
Mother-15	70–80	30–40	9 months	RCF
Mother-16	50–60	20–30	4 months	Home
Mother-17	50–60	20–30	Motor: 3 months Cognitive: 18 months	RCF
Mother-18	50–60	20–30	4–6 months	Home
Father-19	70–80	50–60	8–12 months	RCF
Mother-20.1	60–70	30–40	2 months	RCF
Father-20.2	70–80
Mother-21	60–70	30–40	9 months	RCF
Father-22	70–80	30–40	–	RCF
Mother-23.1	60–70	30–40	18 months	RCF initiated by parents
Father-23.2	60–70
Mother-24	40–50	10–20	0–3 months	RCF

*Developmental age as reported by parents.