Most of the research concerning the children of disabled parents is small-scale and qualitative. It also relates mainly to children who are in contact with children’s social services, although most children of disabled parents are not in contact with children’s services. There are fairly consistent messages, however, about how families experience formal services. Families often feel that services are slow, inflexible, intrusive and not always of much value. A lack of communication and co-ordination between children’s and adults’ services is also a commonly reported problem.
Children also say that professionals often have little understanding of their situation and do not pay enough attention to their knowledge or their concerns. Some children and their parents say that formal services expect children to provide practical assistance to their parents.
Regardless of whether, or the extent to which, a young person takes on a caring role, it can be tough living in a family affected by parental mental health problems, substance abuse, HIV/AIDS, physical or sensory impairment, or learning difficulty – not least because of the social stigma which often accompanies such experiences. For example, adults who were brought up by parents with learning difficulties have reported being bullied and picked on at school and in their local community, and children whose parents have additional support needs can acquire labels which are stigmatising and isolating.
Sharing experiences with others who know what you’re talking about is very helpful to children and young people, although they may not have the opportunity unless they have been identified as “young carers” and are therefore eligible for young carers’ services. The many studies that report how much children and young people appreciate young carers’ projects reflect the benefits that young people experience from meeting and spending time with peers with whom they have so much in common. Disabled parents also recognise the benefits of these schemes to their children.
However, concern has been expressed that the development of peer support and social opportunities for children of disabled parents should not be used as a substitute for the provision of services to enable disabled adults to carry out their parenting role.
Lack of support from informal networks and inadequate forms of support can mean children take on inappropriate roles within the family.
This is more likely in lone parent families and those on low incomes. Research on children who have been identified as young carers finds that they may be affected physically, emotionally and socially and that they may face problems in school.
Research concerning the experiences of children whose parents have mental health problems highlights that they may be more likely than other children to take on an emotional caring role and this can cause problems for them. Children can also be anxious about what is going on at home while they are not there and this may mean that they prefer to stay with their parent than attend school.
However, taking on caring responsibilities for a parent can also have a positive impact on a child. Sometimes children experience an increased sense of independence and maturity. A caring role may also help mitigate some of the other difficulties children are living with and strengthen their relationship with their parents because they feel a sense of inclusion within the family, whereas outside the family they feel a sense of exclusion because they are different.
Resource guide 9: Working together to support disabled parents
Knowledge Review 11: Supporting disabled parents and parents with additional support needs