Percepção sobre o corpo na paralisia cerebral – Escala para Cuidadores (PCPC-EC): construção e teste psicométrico de um instrumento

Abstract

Children and adolescents with cerebral palsy (CP) experience activity limitations and participation restrictions. Among the factors influencing participation, the role of caregivers, particularly mothers, is noteworthy, as their perceptions and beliefs regarding the body and disability, shaped by sociocultural constructions, may act as facilitators or barriers to engagement in daily activities. In this context, the present study aimed to develop a measurement instrument assessing caregivers’ perceptions about the bodies of children and adolescents with CP aged 2 to 17 years, and to evaluate its psychometric properties. This is a methodological study with a sequential mixed-methods design, composed of four phases, approved by the Human Research Ethics Committee of the Federal University of Juiz de Fora (UFJF). In the first phase, items were generated based on a literature review and six focus groups conducted between April and July 2024, involving 20 mothers and two grandmothers of children and adolescents with CP. At the end, 27 items were developed, along with the instructions for the researcher and the participant, as well as the format and response options of the instrument. In the second phase, content validity and semantic analysis of the items were assessed by eight experts and six mothers representing the target population through two focus groups. All items were retained and ten underwent minor modifications, including changes in title, format, and scale instructions. The third and fourth phases evaluated the psychometric properties of the scale in a sample of 202 caregivers of children and adolescents with CP across 11 Brazilian states. Exploratory and confirmatory factor analyses were conducted on independent samples. The final version of the instrument, the Percepção sobre o Corpo na Paralisia Cerebral – Escala para Cuidadores (PCPC-EC), comprised 18 items distributed across three factors: (1) “Perception of body-related stigma in social interactions” (8 items); (2) “Perception of autonomy and participation promotion” (7 items); and (3) “Perception of functional dependence” (3 items). The PCPC-EC demonstrated satisfactory validity and reliability indices, constituting a promising instrument for assessing caregivers’ perceptions and beliefs about the bodies of children and adolescents with CP aged 2 to 17 years, with potential applications in clinical settings and future research.