Measuring Activity and Participation Outcomes for Children and Youth with Acquired Brain Injury: An Occupational Therapy Perspective

Abstract

Introduction: Intervention outcomes for children and youth with acquired brain injuries should be measured in terms of participation in activities. The aim of this study was to explore the occupational therapy outcome measures used with this group. Method: One cycle of an action research study, which focused specifically on occupational therapists, is reported. Ten occupational therapists working with children and youth with acquired brain injuries collated the outcome measures they used and mapped their frequently used measures onto the International Classification of Functioning, Disability and Health — Children and Youth, using established linking rules. Findings: Forty-two outcome measures and assessments were identified. Of these, 19 were used frequently and 15 were used as outcome measures. All activity and participation domains were represented, with learning and applying knowledge, mobility, communication and self-care (except looking after one's health) particularly well covered. Conclusion: Occupational therapists are using measures that reflect the domains of activity and participation, unlike those previously identified which were linked predominantly to body functions. The importance of occupational therapists working in rehabilitation teams is reiterated in that some of the domains that are not covered by occupational therapists impact on participation, for example, pain.

Child-Report Measures of Occupational Performance: A Systematic Review

“…Many systematic reviews of diagnostic groups have focused on measures of participation domains, commonly following the International Classification of Functioning, Disability and Health–Children and Youth (ICF-CY) domains of activity and participation, such as learning and applying knowledge, general tasks and demands, mobility, self-care and major life areas [ 30 ]. [ 19 ] reported in their systematic review that measures covered all ICF-CY domains of participation and activity for children with ABI, and that self-care in particular was covered well. The authors concluded that the occupational therapy assessments were more holistic in occupational performance, unlike medical assessments which were commonly related with bodily functions [ 19 ].…”

“…[ 19 ] reported in their systematic review that measures covered all ICF-CY domains of participation and activity for children with ABI, and that self-care in particular was covered well. The authors concluded that the occupational therapy assessments were more holistic in occupational performance, unlike medical assessments which were commonly related with bodily functions [ 19 ].…”

What do Kids with Acquired Brain Injury Want? Mapping Neuropsychological Rehabilitation Goals to the International Classification of Functioning, Disability and Health

“…The ICF-CY has been used as a foundation to consider the role of contextual factors in the rehabilitation of young people with TBI (Cicca & Threats, 2015), but to our knowledge no other study has used the ICF-CY to analyse the post-acute goals or outcomes in young people with ABI. Community and residential paediatric neurorehabilitation services in the UK have begun to analyse the rehabilitation goals of young people with ABI in order to shape the interventions provided (Dunford, Bannigan, & Wales, 2013), but further research is needed in order to develop a systematic and evidence-based approach for this. This study aimed to: Increase understanding of the community neuropsychological rehabilitation goals of young people with ABI, and how these goals map onto the ICF-CY two-level classification.Identify if there is an association between demographic and injury-related factors and the types of community neuropsychological rehabilitation goals young people with ABI have.…”

Measuring changes in functional ability in older children and young people with acquired brain injury using the UK FIM + FAM

“…The UK FIM + FAM is a measure of functional ability across two domains – motor and cognitive – which was originally developed for adults with ABI. A recent mapping exercise of the UK FIM + FAM demonstrated that the items of the measure primarily map onto the ‘Activities and Participation’ domains of the International Classification of Functioning, Disability and Health: Children and Youth Version (ICF-CY) (World Health Organization, 2007), supporting its potential as an outcome measure of functional ability (Dunford et al., 2013). The UK FIM + FAM is one of the most extensively researched and used outcome measures in adult neurorehabilitation services in the UK (Skinner and Turner-Stokes, 2006).…”

“…It is valid, reliable and responsive for adults in inpatient settings (Nayar et al., 2016; Turner-Stokes and Siegert, 2013) and community settings (Wilson et al., 2009). Outcome data from this measure are currently used to influence NHS funding decisions for neurorehabilitation services across the UK (Turner-Stokes et al., 2012), including some services for children and young people with ABI (Dunford et al., 2013). Given these implications for funding and commissioning of ABI services for children and young people with ABI, it is important to establish whether the UK FIM + FAM is valid, reliable and able to capture clinical change in a younger client group.…”