Parents’ Experiences and Perceptions when Classifying their Children with Cerebral Palsy: Recommendations for Service Providers

Abstract

Knowledge of parents' experiences when using the GMFCS, MACS, and CFCS can provide useful insight for service providers collaborating with parents to classify function in children with CP. Using the recommendations from these parents can facilitate family-provider collaboration for goal setting and intervention planning.

Steering towards collaborative assessment: a qualitative study of parents’ experiences of evidence-based assessment practices for their child with cerebral palsy

“…The final interpretive description we developed-the Steering Wheel for Collaborative Assessment-may help guide more familycentred evidence-based assessment. Our findings are consistent with previous reports indicating parental discomfort associated with the use of specific evidence-based assessment tools [18,28,29]. By exploring parents' experiences of evidence-based assessment more broadly further insights have been gained as to why some parents may find the assessment process for their child persistently challenging.…”

“…Uncertainty about parents' perceptions of formally administered assessments and potential impact on the parent-professional relationship has been identified as a "sticking point" by therapists [20][21][22][23]. Parent perspectives of specific evidence-based assessment tools are variable, with some assessment tools perceived more positively [24][25][26][27] than others [18,28,29]. Parents' mixed responses and therapists' uncertainty with using evidence-based assessment tools suggests further investigation is needed.…”

Caregiver knowledge and preferences for gross motor function information in cerebral palsy

“…Limited information exists about caregivers’ perceptions of discussions with providers about their children's GMFCS level. A small qualitative study, (part of a larger study classifying children's gross motor function), suggests perceptions of GMFCS may differ given their child's level of functioning . Caregivers of children in GMFCS level V reported negative feelings and experiences versus caregivers of children in GMFCS levels I to III.…”

Modified Constraint-Induced Movement Therapy at Home—Is It Possible? Families and Children’s Experience

“…Most studies on mCIMT show its efficacy at improving affected UL non-use [6,[10][11][12]. Different investigations have analyzed the experiences of children, caregivers, and parents in CIMT application [13][14][15][16], although none have collected the parents' and children's perceptions or experiences of the application of CIMT at home. However, it is necessary to collect the perspectives of children and their parents when the intervention is carried out at home and determine the impact on their day-to-day life, to improve the function of the affected UL without altering family life and avoiding frustration.…”