Novita Research Report January 1999 - Novita Children's Services

‘If you wanted to know about it just ask!’
Exploring disabled young people’s experiences of health and health care
Gillian Bricher 1
Doctoral Candidate
Supervisors
Philip Darbyshire 1
Chair of Nursing
Peter Flett 2
Director
1
School of Health Sciences
– Nursing and Midwifery,
University of South Australia
2
Dept of Rehabilitation
and Child Development,
Women’s and Children’s
Hospital
Objective
This project undertook a qualitative study into the health and health care experiences of disabled children and
young people, using a flexible and participatory approach to challenge the traditional relations of research
production. This reflected new paradigms in childhood research and the social model of disability. This study
aimed to give a voice to disabled children and young people, and to gain an understanding of their experiences,
perceptions and feelings.
Method
Twenty young people aged 9 –18 years met with the researcher up to four times, with the choice after the initial
meeting of an individual or group meetings. All had a physical disability, some also had communication or learning
difficulties. Conversations with the young people covered a range of topics that included hospitals, appointments,
splints, therapy, and what it is like to have a carer.
Results
The young people showed recognition of factors that contributed to their health and sense of well being. They
spoke of experiences of empowerment and powerlessness within a triad of the parent: professional: young person.
Concern was expressed that many treatments were an experiment and that outcomes were hard to balance with
the pain and inconvenience. Common talk was about living in a world that considers them as different, and the
effect that this has with little opportunity for contact with disabled adults or peers. School issues raised concerns
such as equity in access, being different, having to prove oneself, limited school sport involvement and issues of
friendship and teasing.
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Implications
This study raises a number of issues for the provision of services to children in a client centred service, where both
the child and parent need to be considered as clients. How therapists communicate with children to make their
interventions understood, and outcomes realistic for the child, needs to occur in a manner that is meaningful and
understood by the child. How a child determines success may be different to that of the professional, and there
is a need for the “success” of interventions to be discussed and set before undertaking the procedure. There is a
need to link children with other children with disabilities for peer contact, and adults with disabilities for role models.
Social isolation was a factor for young people who were the only one with a disability at their school.
Project completed in 2002
Novita Children’s Services Incorporated • Research Report January 1999 – June 2004