Novita Research Report January 1999 - Novita Children's Services

48
Parimala
Raghavendra
Manager
Clinical Research
Julie Smith
Senior Psychologist
Trevor Harrison 1
Pam Donnelly
Regional Manager
Glenda Noble 2
Senior Occupational
Therapist
Heather Slattery 3
Actress
1
Harrison Consultants
2
Communication and
Therapy Services, now part
of Adult Therapy Services
at the Independent Living
Centre
3
Deceased
Childhood therapy experiences of adults with cerebral palsy:
implications for today’s children with cerebral palsy
Objective
The aim of the project was to investigate how an agency providing long term support for children with cerebral
palsy can best prepare them for adulthood. Adults who had received services from Novita Children’s Services
(formerly Crippled Children’s Association of SA Inc.) as children, were asked how physiotherapy, occupational
therapy, speech pathology and social work/psychology services had assisted them during their years at Novita.
They were also asked what they thought of the services they had received, what else they might have needed,
and what suggestions they would like to make regarding Novita’s services for the future.
Method
A qualitative research methodology involving focus groups and individual interviews was employed with a
participatory research paradigm in which people with disabilities and researchers worked together at each stage
of the project.
Fifteen people with cerebral palsy between the ages of 20 and 35 years who had received services from Novita
as children, participated in the study. Ten of them were individually interviewed and 5 participated in focus groups.
All data was transcribed verbatim and cross-checked with the participants. Inductive analysis of the data included
displaying the data in tables, developing codes, and identifying patterns, themes, and categories of responses.
The report was provided to the participants in written and audio format and their feedback obtained and
incorporated in the final report.
Results
Of all the services, participants remembered physiotherapy in greatest detail and depth. They spoke very highly of
the quality of physiotherapy service they had received, in particular the amount of therapy. Of the nine participants
who had received speech pathology services, most were satisfied. In looking back at occupational therapy
services, they identified a need to have more input on practical living issues, e.g. getting about in the community,
finding employment, managing a team of attendants. The majority of participants were satisfied with friendship
experiences, but reported dissatisfaction with aspects of their school experiences.
Some of the recommendations made by the participants:
• Ensure mobility is presented as a range of options;
• Provide more independence training;
• Provide more training across a range of communication skills: directing personal attendants & conversing
with peers;
• Give greater emphasis to teaching literacy skills, especially the ability to read; and
• Advocate more for disability awareness in the community, better access, better understanding and support.
Implications
A retrospective evaluation of its services provides Novita with some clear recommendations for future service
delivery. A “Research into Services“ sub-committee studied the report and proposed two distinct areas of
recommendations:
1. Philosophical basis for Novita to reflect a focus on the development of autonomy in the young person; and
2. Content and focus of services particularly for adolescents.
For more information visit www.novita.org.au
Project completed in 2002
Novita Children’s Services Incorporated • Research Report January 1999 – June 2004