All about my brother

Angie Naylor is a lecturer in psychology at Edge Hill
University College, where she has taught since September 2001. She
is a qualified teacher and person-centred trainee counsellor and is
writing her PhD on non-directive play therapy.

Phil Prescott is a senior lecturer in childhood studies
and social work at Edge Hill University College and the Open
University. He has been a lecturer in social work for 13 years and
has worked previously as a manager, social worker and guardian ad
litem in the statutory sector.   

A disabled child can have a profound effect on all members of a
family. As early as 1991, the Department of Health recognised the
need for support services for siblings of disabled children, who
may have unique needs and concerns.¹ Yet, there remain
few services to help these children.

Our research shows these groups can help to resolve frustrations,
enable self-expression and encourage activities. Siblings indicated
a desire and need for a support group, and found that becoming part
of one reduced the sense of isolation they can feel. These groups
allowed siblings to mix with other children with similar
experiences and the children acknowledged that being around others
who knew how they felt, without explanation, was positive.

The therapeutic potential of the group was identified early by some
of the children who wanted to talk about feelings of jealousy and
resentment, while others initially simply wanted to take part in
recreational activities with other siblings of disabled children.
Overall there were several positive outcomes of the support group
for the non-disabled siblings, including an increase in:

• Self-esteem.
• Quality of life.
• Coping strategies within the family.
• Understanding of disability issues.

A significant outcome of the project was the benefit that the
children derived from the individual adult attention they received
when the evaluation took place.

Siblings of disabled children may have concerns such as worries
about their disabled sibling, their parents, themselves, friends,
school and adulthood. Listening to them in a therapeutic way helps
them to validate their experiences and raise their self-esteem. The
key element may be giving children or young people a safe space in
which to explore their perceptions of their experiences. So popular
was this course of action that the children were queuing at the
door in order to take part in the research interviews.

The study found some initial reluctance on the part of the siblings
to acknowledge negative feelings about their situation. But their
readiness to do so increased as the group progressed.

Clearly the development of support groups will reduce the potential
for denial of sibling needs. The child-centred approach in this
research allowed the children themselves to reorient the group to a
more therapeutic focus.

Future aims for support groups of siblings of disabled children
were identified as:

• Encouraging personal time away from their disabled sibling and
  family environment.
• Offering social interaction with others especially those in
  similar positions.
• Enabling such children to be part of a group process.
• Improving coping strategies for children living within the
  disabled environment.

The development of a drop-in service and the identification of
key workers for the non-disabled sibling were also seen as possible
aims.

Overall, the research reinforced the importance of listening to
children, creating safe spaces and empowering children in general.
Other researchers have identified that it is important to focus on
the whole family. ^3,4

However, this research suggests that, in so doing, the needs of
individual children, notably the siblings of disabled children, may
be marginalised. This may be underlined in the results of this
study, by the siblings’ initial reluctance to acknowledge their own
feelings about their family situation.

A strategic response to family need is required, but not to the
detriment of particular family members where the “disability
context” might create a screen behind which some children are
hidden.

The research

The research identified the need for sibling support groups and
undertook a five-month in-depth study of such a group. This
research was prompted by central and local government initiatives
to target disabled children and their families, such as specialised
Sure Start programmes.

Abstract 

This article discusses a research project investigating the
needs of the siblings of disabled children. In partnership with
Barnardo’s in north west England, the need for support groups for
siblings of disabled children was identified and the outcomes of a
sibling support group were explored. The research indicates a need
for further service provision and the results have implications for
practice in addressing specific preventive interventions.

References

¹ Department of Health, The
Children Act 1989; Guidance and Regulations. vol 6. Children
with Disabilities: a new framework for the care and upbringing of
children, HMSO, 1991. 

³ L Olson, “He ain’t heavy,
he’s my brother. Exceptional siblings: Resiliency and vulnerability
factors explored in adults with disabled siblings”,
Dissertation Abstracts International, section A,
humanities and social sciences, vol 60 (7-A), February
2000. 

⁴ P Banks, N Cogan, S
Deeley, M Hill, S Riddell, K Tisdall, “Seeing the Invisible
Children and Young People Affected by Disability”, Disability
and Society, vol 16, no 6, pp797-814, 2001.

Further information   

• L Bergmann, “A guide for conducting a support group for
  siblings of children with disabilities”, Dissertation Abstracts
  International, section B, sciences and engineering, vol 59
  (6-B), December 1998. 
• P Burke S Montgomery, Finding a Voice. Supporting Brothers
  and Sisters of Children with Disabilities, The Children’s
  Research Fund, 2001.

Contact the author  

Angie Naylor can be contact by e-mail at naylora@edgehill.ac.uk or
telephone 01695 584068.