When a child is diagnosed with a life-limiting condition inevitably parents become their main carer. Caring for a child with a life –limiting condition can be a full-time job with the child often requiring care around the clock. Parents providing care at home often have to develop new skills in order to care for their child and this care may be needed for weeks, months and sometimes years. The care of a child with a life-limiting condition, impacts on all aspects of family life not only changing the home environment but also affecting all family members including the child’s siblings.
In order to be able to continue to provide care for their child many parents seek support in the form of respite or short breaks. Respite is described as a break from the usual routine of caring and can be provided in a variety of locations including in-the-home or out-of-home. Where and how services are accessed varies depending on where the family live and also sometimes on what condition or diagnosis the child has.
It is important that those providing respite or short breaks recognise that the parents are often the experts in their child’s care and that handing the care of their child to others is often difficult for them. Parents frequently seek reassurance that the level of care provided during respite meets their expectations. Trust in those providing respite is essential.
For parents using services that deliver respite or short breaks provides them with the opportunity to undertake some of the everyday tasks that many take for granted such as shopping and spending time with their other children. Ultimately a break from the routine of caring can help parents to continue to care for their child at home.
[Written by Julie Ling, 2014]
Short Breaks can support you in caring for your child
Caring for a child with a life limiting condition can be a full time job, with care often required around the clock and through unexpected events or admission to hospital. Parents often have to learn new skills that extend their role to not just Mum or Dad but to being the providers of expert care to their child. This care may be needed for just a short time or may go on over years. It will certainly impact dramatically on all aspects of family life and affects everyone in the family. It’s really important that while you care for your child, you look after yourself as well.
One of the ways families can be supported in doing that is through short breaks. Short break care can be provided either in your own home or away from home in for example a Childrens Hospice. Often it can be difficult to think about leaving your child so short break care is usually flexible to fit in with what works best for your family.
Short break care is often described by families as “what keeps them going”. It provides the opportunity for the family to relax together, or for parents to spend time with other siblings and for a well-earned rest.
[Written by Grace Stewart, 2014]