Availability of outcome measures (OMs) with robust psychometric properties is an essential prerequisite for the evaluation of interventions designed to address gait deterioration in young people with Cerebral Palsy (CP). This review evaluates evidence for the reliability, validity and responsiveness of outcome measures of gait quality and walking performance in young people with CP. A systematic search was performed in MEDLINE, CINAHL, PubMed and Scopus. Articles that met the eligibility criteria were selected. Methodological quality of studies was independently rated by two raters using the modified COnsensus-based Standard for the selection of health status Measurement INstruments checklist. Strength of evidence was rated using standardised guidelines. Best evidence synthesis was scored according to Cochrane criteria. Fifty-one articles reporting on 18 distinct OMs were included for review. Best evidence synthesis indicated a moderate to strong evidence for the reliability for OMs of walking performance but conflicting evidence for the reliability of OMs of gait quality. The evidence for responsiveness for all OMs included in this review was rated as 'unknown'. The limitations of using the modified COSMIN scoring for small sample sizes are acknowledged. Future studies of high methodological quality are needed to explore the responsiveness of OMs assessing gait quality and walking performance in young people with CP.
The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child's condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.
Depending on the severity of their disabilities, children with Down syndrome (DS) and with cerebral palsy (CP) may remain pre-symbolic for prolonged periods of time. When interacting with pre-symbolic children, communication partners have a role in identifying which of their behaviours are communicative, to be able to respond to those behaviours and maintain reciprocal interaction. To date, most research on these children's communication development has been conducted within the context of mother-child interaction. Seldom have they been observed interacting with other family members, and in interactions other than dyadic, despite these interactions also occurring daily.
A hospital study was carried out to compare parenting stress among 87 Malaysian mothers of children with cerebral palsy and a control group (comprising 87 mothers of children without disability who attended the walk-in paediatric clinic), using the Parenting Stress Index (PSI) questionnaire. Multiple regression analysis was used to determine socio-demographic and medical factors associated with child-domain stress (CDS) and parent-domain stress (PDS). Mothers of children with cerebral palsy scored significantly higher than control subjects on all sub-scales of CDS and PDS (p < 0.01), except for the sub-scale of 'role restriction'. The presence of cerebral palsy (p < 0.001) and activities of daily living (ADL) scores (p < 0.001) were significantly associated with CDS. Factors predictive of PDS were ADL scores (p < 0.001), number of hospitalizations over the past year (p = 0.024), level of maternal education (p = 0.018) and Chinese mothers (p < 0.001). Although this study demonstrated that Malaysian mothers of children with cerebral palsy experienced higher levels of stress than controls, the impact of cerebral palsy per se on parenting stress was modified by other factors such as increased care-giving demands, low maternal education and ethnic background. Habilitation should be directed at easing the burden of daily care, minimizing hospital re-admissions and targeting appropriate psychosocial support at specific subgroups to change parental perception and expectations.
Study site: neurology clinics or physiotherapy department or inpatients, Paediatric Institute, Kuala Lumpur, Malaysia