Children’s Assessment of Participation and Enjoyment (CAPE)
After review, the aforementioned information remains accurate and current.
Article Summary
Connell T, Paterson J, Roberts RM, Raghavendra P, Sawyer M, Russo RN. Clinician modifiable factors associated with better quality of life in children with acquired brain injury undergoing rehabilitation. Brain injury. 2018;32(4).
Purpose
The purpose of this study was to assess relationships between potentially clinical modifiable factors at evaluation and Quality of Life (QOL) at 6 month follow up among children receiving rehabilitation for acquired brain injury (ABI) as rated by both the children and their parents. A secondary aim was to analyze relationships of child and patient perceptions of QOL.
Study Population
The study population included 39 children, 5-18 years old who were attending the Novita Children’s Services in South Australia between 2008-2010. The participants sustained an ABI between 7 months and 10 years before the study. The participants needed to be a minimum of 6 months post injury in order to ensure medical stability.
Methods
Participants were recruited via a letter of invitation sent to clients of the Novita ABI Program. Participating families received copies of parent and child completed questionnaires with instructions. The child participated in the ABI program, which for some of the participants had before the evaluation. The rehabilitation continued up to the follow up assessment 6 months later. At the 6 month follow up, the questionnaires were administered again, along with the PedsQL, and the CAPE (which was not administered at the initial assessment).
Relationships between variables were analyzed using nonparametric correlations (Spearman’s rho). Level of significance was set at 0.05. The magnitude of correlations were described according to Cohen’s guidelines. Differences between parent and child ratings of QOL were assessed using paired sample t tests, with effect sizes.
Outcome Measures
A. Injury severity was described using the Rancho Los-Amigos Revised Levels of Cognitive Functioning (RLAS)
B. The Personality Inventory for Children-2 behavioral summary with the use of the Somatic Concern sub scale, Social Skill Deficits sub scales, Internalisation Composite, Extenalisation Composite
C. The Vineland Adapative Behaviour Scales
D. The Handicap-Related Problems for Parents Inventory to determine family relationships and parent stressors
E. Children’s Assessment of Participation and Enjoyment (CAPE)** CAPE determines how children participate in activities outside of school. The five dimensions include diversity (number of activities), intensity (frequency of activities within a category), location, who they did the activities with and enjoyment of the child’s participation. The 5 dimensions are surveyed separately for each of 5 categories of activity (active physical, recreational, self improvement, social and skill based activities). Administration involved asking the family member (or if the children could complete it themselves) whether the child engaged in each of 55 home and community based activities over the previous 4 months.
F. PedsQL
Intervention
The ABI program included individualized rehabilitation with physiotherapists, occupational therapists, speech pathologists, psychologists, family service coordinators and allied health assistants.
Results
The QOL of participants in the study was lower compared to a UK sample of healthy children on all but one dimension of child rated emotional QOL.
A. Differences between participants
Characteristics of participants include that males outnumber females 2:1, trauma is the main cause of injury within the sample, the severity of injury for all participants was within the moderate (VI-VII) to mild (VIII-x) range on RLAS.
B. Relationships between potentially clinician modifiable factors and QOL
Moderate to large relationships found between all predictor variables and total QOL, by both parents and children. Children with decreased levels of internalizing/externalizing behaviors, lower levels of health and social skill problems, and higher family functioning had significantly higher levels of total QOL. Children with increased levels of adaptive behavior had significantly higher parent rated total QOL. Measures of mother’s stressors were moderate but did not have significant relationships with the child’s QOL. Participation across the five dimensions of activity assessed was not related to total QOL, with the exception of physical activities and child reported total QOL. There were moderate and significant relationships between measures of diversity, intensity, location, and with whom children participated in physical activities and total QOL as rated by children but not parents.
C. Relationships between parent and child ratings of QOL
Moderate but not significant differences between child and parent ratings of QOL on physical, emotional and social dimensions. There was large and significant differences between child and parent ratings of QOL on school dimension and total score. In all comparisons, parents rated child’s QOL lower than the child.
Strengths
Strengths of this study include that there is limited previous research with children with ABI where both the parent and child ratings were assessed. The outcome measures were evidenced based and patient and family centered. The measures also take into a wide variety of factors including but not limited to the child’s participation, function, emotions, personality, stressors based on both the child’s and the parent’s report.
Limitations
Limitations include that there was not a control for time since brain injury. This could effect results because time since injury can be related to QOL in children after TBI. It also did not specify how or in what setting that the outcome measures were administered to the parent and children or it does not state the researcher’s qualifications. Another limitation is that the 6 month intervention process was not described. In regards to transferring this to clinical practice, it would be difficult to administer this large amount of QOL measures due to the extensive amount of time and attention it requires. It also had a limited sample size collected from one center, thus limiting its external validity. Future research could incorporate various rehabilitation centers with larger sample sizes.
Conclusion
In conclusion, this study provides guidance for prioritizing rehabilitation following brain injuries in children in order to increase QOL. Interventions that focus on children’s internalizing problems may result in the greatest impact of the children’s QOL from both the parent’s and child’s perspectives. Considering the individual, environmental characteristics, symptoms and functions also improve QOL.
2 responses to “Children’s Assessment of Participation and Enjoyment (CAPE)”
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Hey Caroline,
Thanks for the article review. I’m curious whether the fact that some of the participants completed the ABI prior to the evaluation affected the results. I couldn’t determine if that was part of the design or not. If not, I feel that would be a limitation, as well.
Jacob
Jacob,
I agree that this variable could have affected the results. I think in future studies that the participants should complete the evaluation BEFORE the rehabilitation.