Ms Robyn Heesh1, Dr Susan Greaves2, Dr Loretta Sheppard1, Professor Christine Imms1
1Australian Catholic University, Melbourne, Australia, 2The Royal Children’s Hospital, Melbourne, Australia
This research investigated what non-ambulatory children with cerebral palsy (CP) aged 5 to 18 years can do, with support, during daily routines. Our purpose was to inform goal setting and intervention planning that focuses on the abilities of children with significant disability and their carers.
Purposively sampled child/carer dyads took part in video elicited interviews in their homes in Victoria. Qualitative thematic analysis of the interviews examined what the child and carer contributed to tasks and explored the transactions between child, carer and context that enabled daily routines to be completed.
Findings from five dyads highlighted that children (2 male; aged 8-16 years) used a range of small but important skills that contributed to the completion of daily routines. Three core themes were derived describing how families negotiate a busy life, and the highly variable child, carer and contextual factors that influenced routines daily. The Child Active Routine (CAR) framework was developed as a synthesis of findings describing how routines were achieved under differing circumstances.
Significance of the finding to allied health:
Children with severe disabilities will always need assistance, but there are small skills and actions, (e.g., lean forward during hygiene routines; close hand for dressing), they can learn and contribute to daily routines. The CAR framework may aid communication among children, carers and clinicians about when and how children can contribute and learn skills. Findings can inform therapy interventions that build the capacity of the child and carer within the context of daily routines.
Robyn Heesh is an Occupational Therapist with 20 years clinical experience working with children with disabilities and their families in community, school, early intervention, hospital and rehabilitation settings. Through her Masters of Health Science Research based at Australian Catholic University, she recently competed a mixed methods project focused on children with cerebral palsy and their families.