Daily living transactions: Understanding how children and carers work together to complete daily living tasks and routines when the child has cerebral palsy.

Objective: This research explored how children with cerebral palsy (CP) functioning at Gross Motor Function Classification System (GMFCS) levels IV and V work together with their carers to complete daily routines. It aimed to investigate the activities and skills that are important and may inform goal setting and intervention planning for children and carers.

Design: An explanatory sequential mixed methods study.

Method: Non-ambulant children (GMFCS IV and V) aged 5-18 years and their carers were recruited from the Victorian Cerebral Palsy Register. A study specific survey and the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), were used to describe the children, carers, and their daily routines. Descriptive statistics were used to rank routines according to importance, level of assistance and difficulty. Data collected from video elicited interviews in the homes of five child/carer pairs was then analysed using qualitative methodology. The thematic analysis of the interviews examined what happened

and the transactions between child and carer that occur during daily routines.

Results: Survey data were obtained from 78 carers of children with CP (child mean age 12.3 years, SD 3.7 years; female n=39; GMFCS IV, n=23). Nine young people also completed the youth version of the CPCHILD. All routines were rated as important. Some were completed with greater ease and higher rates of independence, with some children able to contribute to easier routines such as sitting in a wheelchair, eating, and moving indoors/outdoors. Findings from the five child/carer interviews highlighted how carers and children work together during routines. Themes were derived describing how families negotiate a busy life, and the child, carer and contextual factors that influence routines and that change on a daily basis. Children used a range of small but important skills that contributed to the completion of daily routines, such as closing their hands for upper limb dressing, leaning forward for hygiene routines, and relaxing their body to be hoisted safely.

Conclusion: Children with CP functioning at GMFCS levels IV and V will always need assistance, but there are small skills and actions that they can learn and use to positively influence daily routines. In-depth examination of five child/carer pairs provided rich information about how they work together to complete routines, even on ‘difficult’ days. This new and important knowledge may inform therapy interventions that addresses and value the skills of both the child and their carer that are useful during daily routines.