Short breaks and respite care for disabled children and their carers

Each week the Social Care Institute for Excellence analyses research findings behind specific social work practices

Short breaks are intended to have positive benefits for both children and carers: children have the opportunity to have enjoyable experiences and socialise with others, while carers and siblings have the opportunity to relax, do other tasks and spend time with family and friends.

There are more than 400 short-break services in England, Wales and Northern Ireland. They include: sitting services, befriending services, youth clubs, play schemes, the use of outreach/sessional workers to stay with the child or take them out and overnight stays with carers or in care homes or hospital. The length of the breaks reflect the ages of the children and range of disability. Services must take into account the individual and unique nature of each child and be planned with the children and their families. It is important that the breaks are considered an integral part of the substantial care provided by families.

Research confirms that families with children with learning disabilities are not getting as many short breaks as they would like nor are breaks long enough. Children with complex health needs, challenging behaviour and disabilities such as autistic spectrum disorders are less likely to have short breaks, as well as boys and young people from mixed race or ethnic minority communities, although some studies have found that severely disabled children use short break services more.

Studies show that families prefer home-based breaks to breaks in care homes or hospitals and would like more choice in the type of break available: short breaks during school holidays and in the form of play schemes are particularly popular with families. And children from ethnic minorities are more likely to be placed in institutions than family settings and are more likely to be unaware of short-break services. It also shows that low-income families use a narrower range of services than other families and that very young children are less likely to have short breaks.

There is also evidence that, while carers benefit from the use of short-break services, this can be accompanied by feelings of guilt, loss, concerns about safety and an increase in carer stress. Carers may benefit from group therapy to help reduce the stress of caring.

There is also increasing consultation of children about the services they would like to receive and their assessment of existing short-break services. Some studies suggest there is a lack of adapted housing and of short-break carers.

Research examining the use of salaried carers to address carer recruitment problems found benefits including improved stability of placements, a greater level of commitment by carers and a more experienced pool of carers. Befriending is another of the volunteer services offered by some short-break or respite services, but little research has been carried out on the subject.

One study has found that befrienders and befriendees gain a lot from the experience, but that most schemes could not meet the demand for befrienders, and that recruitment was difficult. It also found that services matched befrienders and befriendees based on the interests of the befrienders alone, and that the service often ended abruptly, so befriendees and their families felt let down.

Finally, there is concern about existing research methodologies, including methodological flaws and small sample sizes. Much of the literature is descriptive in nature which is of value in exploring the viewpoints of children and their carers. More research is needed on the outcomes and benefits of short-break services, the views of children using them, the cost benefits of different types of service and the development of effective models for short-break care.


● An increase in funding and continuity of funding is needed to provide the variety of services required. To do this, service providers need to obtain accurate information on the number of children with complex health needs to assist in planning. This should mean that the substantial minority of families who do not use short-break services can be identified.

● At a local level, services need to be developed and information about them disseminated to the families most likely to benefit. In particular, services need to be targeted to children from ethnic minorities, low-income households or large families to address access inequalities and increased provision of school holiday breaks.

● More trained carers would help to reduce waiting lists and enable them to have a paid and professional standing – which might allow quality issues to be addressed.

● It is vital that disabled children are consulted about the services they receive, including the issue of quality in services as services that respond directly to user and family needs have a greater chance of success.

● It is also important that efforts are made to consult children directly through communication aids if necessary, rather than through the advocacy of family members.

Further information
● SCIE research briefing 5: Short breaks (respite care) for children with learning disabilities
● Practice guide 10: Community-based day activities and supports for people with learning disabilities
● Knowledge review 14: Having a good day? A study of community-based day activities for people with learning disabilities
Valuing People Support Team
The Department of Health website has links to a useful information about children with learning disabilities

Related articles
Research abstracts: Short breaks

This article appeared in the 27 September issue under the headline “The need for short breaks and how to run then”

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