Table 2 Safety concerns and strategies reported by caregivers in the online survey
From: Caregivers’ experience of sleep management in Smith–Magenis syndrome: a mixed-methods study
Number | Example | |
|---|---|---|
Concerns | ||
Trying to ‘cook’ | 6 | “She tried to cook porridge in the microwave and set it to 99 min, the microwave caught fire!” |
Self-injury | 5 | “She has head butt the floor in a rage and bitten her hands to the point she has drawn blood.” “Smashed a hole in the wall in her room with her head” |
Foraging for food | 4 | “Or eating anything and everything out of the fridge or cupboards.” |
Destruction of property | 4 | “He flushed toys down the toilet and flooded our home.” |
Trying to leave the house over night | 2 | “She nearly died of hypothermia when she was little because she left the room in a hotel in New Hampshire and got locked between the fire door and outdoors. By the time we found her she was unresponsive with a temperature in the 80s Fahrenheit.” |
Climbing up furniture/windows | 2 | “Climbed out of 1st floor bedroom window at 2 years.” |
Fire starting | 2 | “Trying to set house on fire.” |
Interfering with plugs/plumbing | 1 | “Has dismantled plug sockets and cut wires unscrewed plumbing with hot water.” |
‘Helping’ with domestic chores | 1 | “She once decided to 'help' us with the ironing. She left the iron switched on and face down on the ironing board so that it burned a hole through it.” |
Smearing | 1 | “Smearing following soiled nappy.” |
Accessing sharp objects/matches | 1 | “Managing to get hold of matches and hurting her self. Spent a week in a burns unit. Matches were hidden!” |
Falling out of bed/cot | 1 | “He used to rock his cot to get out of that and he had fallen out of his cot.” |
Aggression | 1 | “Gave me a bloody nose by head butting me as I was trying to calm her and get her to sleep.” |
Strategies | ||
Lock/stair gate on bedroom door | 12 | “We have locked gates on her room, we have no choice!” |
Adapted bedroom to remove furniture, sharp items etc | 10 | “Room was stripped back to essential items due to disruption and destruction.” |
Enclosed bed | 8 | “Sleeps in a high sided padded profiling bed and has a safety sleeper or respite and holidays.” |
Video/baby monitor in individual’s room | 6 | “CCTV in his room so that we can see what he is doing.” |
Co-sleeping | 6 | “We lock him in our room and he sleeps with us.” |
Locking doors to other rooms in the house | 5 | “Kitchen door is also locked at night.” |
Constant supervision | 5 | “I always wake when he wakes.” |
Locked windows | 4 | “Installed special front door and windows so he can't open them.” |
Strategies to help child self-manage (e.g. use of iPad overnight) | 3 | “Once he has his iPad he is ok and will self manage in his room until 6:30.” |
Hiding keys/food/potentially dangerous objects | 3 | “We have a 'lock down' routine before we go to bed every night. Always careful not to leave something out that could be potentially harmful to her, or endanger everyone else. It requires us to always be vigilant and careful.” |
Alarms on doors | 2 | “We have doors to rooms with dangerous appliances/things like the kitchen alarmed.” |