Much is written about the parents and carers of disabled children, but what are the feelings, expectations and needs of the disabled child’s siblings?
Updated research (the original report prompted a parliamentary question in the House of Lords) drew on material provided by 56 questionnaires from families with disabled children.1 Children from 41 families attended a sibling support group. A further 15 families had children who did not attend a support group, thus acting as a “control” for the research to establish whether or not the sibling support group experiences were shared elsewhere or were markedly different.
The actual words used by the young people are included, where possible, within the report itself. This provides an insight into the child’s perspective on family life with a disabled brother or sister. The report shows that many children found it difficult to share their feelings, hence the title Finding a Voice. The practice-based conclusion has 27 recommendations.
The main findings confirm those of others, that siblings faced tasks as secondary carers for their disabled siblings and most undertook the tasks with good composure, reducing – as far as they were concerned – the stress on their parents. Many positive experiences were reported but the sense of familial neglect in the face of competing demands on parental attentions came across overwhelmingly.
Angela (not her real name) aged 10 years expressed her frustration towards her younger disabled brother: “I know how angry I am going to be. I say to myself, shall I hit him now or shall I hit him then? Sometimes I just grab him, sometimes I make a fight a game.”
On the other hand, in a positive way, Graeme (aged 16) said: “If Jamie’s around when mum and dad die he’ll come and live with me. If I’m able there is no way he’ll go into care. I’ve accepted that responsibility since I was old enough to think.”
These two views contrast the experience of siblings showing that they are all too aware of the difference within their family life. The first is an angry, resentful reaction which needs expression if it is to be understood and if Angela is to be offered some help. The second is very protective and Graeme had never expressed his views to his parents. Both quotes help to show the strength of feeling held.
Attendance at a support group provides opportunities to express feelings within an environment where there is some commonality and understanding of the day-to-day difficulties shared by siblings. Finding a Voice is the first stage of gaining recognition of one’s own identity as an individual; and the opportunity to speak freely in a group is something unique for these siblings. Indeed, even those siblings not attending a support group expressed the desire to do so, and only one in this small research project rejected the possibility outright.
In our view, providing support to siblings of disabled children is imperative, but this should not deny, in any way, the needs of the disabled child. Essentially, providing support is important for all family members.
However, this sibling support group was a valued resource as far as the young people involved were concerned and could be an exemplar for others.
1 Peter Burke and Sue Montgomery, Finding a Voice, University of Hull, 2003. It is available for £7.50 from 16 Kent Street, Birmingham, BR5 6RD.
Peter Burke is a social work lecturer at the University of Hull.