Everyday life is a real challenge for those caring for a seriously ill child

Categories: Care and Research.
Basics such as regular sleep and enjoying everyday family activities are a real challenge for those caring for a seriously ill child, new research by Together for Short Lives shows.

We recently worked with Ipsos UK to survey 2,236 UK adults, 696 with one or more child, and we also separately surveyed 40 families currently caring for a seriously ill child to find out more about what everyday life is like for families, and how it differs for carers of seriously ill children.

We found that 83 per cent of UK adults typically enjoy six or more hours sleep each night. This is in stark contrast to families currently providing at-home care for children with life-limiting or life-threatening illnesses: only one in seven of these carers (14%) get more than six uninterrupted hours of sleep.Important family moments enjoyed together such as a meal (23%), watching a film or TV programme (19%) or going to the park/playground (15%) were the most-high ranking activities enjoyed by UK families of children aged 17 or under, but these simple pleasures are often not an option for countless caring for a child with a life-limiting/life-threatening condition.Families caring for a seriously ill child struggle with enjoying many activities because of the unpredictability of their child’s condition (37%), they are unable to find the time (29%) and they are unable to get the whole family together due to pressures related to their child’s condition (11%).

UK families enjoy regular days out with their children, with over half (58%) taking trips once or twice a month or more. Families caring for a seriously ill child find getting away, even for a day trip a real challenge because of the planning involved and lack of support available such as accessibility (42%) and the unpredictability of day-to-day life (19%).


This article is republished from Together for Short Lives with permission

Together for Short Lives is here for you and for every family caring for a child with life-threatening or life limiting illness. Our Support Hub provides useful information and can connect you with support services and others also caring for a seriously ill child. Or if you would like to talk to us please contact our helpline on 0808 8088 100, we’re open between 9am-4pm on weekdays.

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