Self-Concept of Children with Cerebral Palsy

Self-concept is the perception that individuals have of themselves across different aspects of life such as academic performance or appearance. The Self-Concept Feedback Loop proposed for this research program conceptualised self-concept as developing through an interactive and iterative process involving social experiences and the cognitive processes of individuals. Through this process, individuals evaluate their behaviour or attributes against their internal standards. Subsequently, this evaluation influences their self-concept. In the general population, low self-concept has been linked to a range of negative outcomes, including poor academic achievement, and behaviour and mental health problems. However, research into the self-concept of children with cerebral palsy (CP) is rare. The motor and accompanying impairments associated with CP limit participation opportunities for children with CP, creating a unique social experience for these children that are likely to differ from typically developing (TD) children. Given this unique social experience, children with CP may perceive their self-concept differently from TD children as well as be at potential risk for low self-concept. The overall aim of this research program was to examine the self-concept of children with CP after identifying or developing a CP-specific self-concept instrument suitable for this purpose.

In Study 1, a systematic review was undertaken to identify self-concept instruments suitable for children with CP. Five studies that measured the self-concept of preadolescent children with CP that had population-specific psychometric data were identified. Examination of the psychometric properties of the instruments utilised in those studies identified no CP-specific self-concept instruments, whilst existing instruments developed for TD children did not have strong psychometric support for their use with children with CP.

In Study 2, a three-round Delphi consensus survey was conducted to identify self-concept domains relevant to children with CP. Three groups were recruited: professionals working with children with CP (n=21), caregivers of children with CP (n=18), and children with CP (n=12, 7 boys). Findings demonstrated that children with CP generally conceptualise self-concept using similar domains to TD children. However, several CP-specific domains were identified. Based on these findings, it was determined that the construction of a population-specific instrument which incorporates CP-specific domains was necessary in order to provide a comprehensive evaluation of self-concept for children with CP.

The myTREEHOUSE Self-Concept Assessment (myTREEHOUSE) was developed using classical test theory based on the rational-empirical approach. Self-concept is measured by the child’s appraisal of their performance for 26 items across eight domains. The child’s appraisal is rated from three perspectives: Personal, Social, and Perceived. In addition, children also complete an Importance Rating. The discrepancy between the Importance Rating and the Personal Performance Perspective for each item is summed to achieve a Personal Concern Score which indicates the presence and severity of self-concept concerns.

In Study 3, the validity and reliability of myTREEHOUSE was examined. Support for face and content validity was ascertained through semi-structured interviews with seven experts. myTREEHOUSE demonstrated strong internal consistency assessed with 50 children with CP (29 boys). Moderate test-retest reliability was demonstrated with a subset of 35 children (20 boys).

Study 4 explored the profile of self-concept using myTREEHOUSE for 50 children with CP (29 boys) in relation to age, gender, and motor, communication, and cognitive function. Children with CP in this cohort reported high self-concept. Findings also demonstrated that self-concept was not associated with age, gender, motor function, or communication function. Cognitive function was found to be associated with the self-concept domains of Social Skills and Learning Skills.

Study 5 investigated the relationship between self-concept and quality of life measured using two population-specific instruments; myTREEHOUSE for self-concept and CP QOL-Child for quality of life. Higher self-concept was associated with higher quality of life in this cohort of 25 children with CP (13 boys). The relationships between self-concept with child-reported quality of life were stronger than proxy-reported quality of life.

Through this research program, it was ascertained that existing self-concept instruments are not suitable for children with CP, given their weak psychometric data and the absence of CP-specific domains. In response, the myTREEHOUSE Self-Concept Assessment was developed and preliminary validation undertaken. Findings from this research program present the first self-concept profile of children with CP and provide a deeper understanding about how these children perceive their self-concept and quality of life.

Pages 461-467 and 469-471 have been redacted to protect the intellectual property of the author.