Metas funcionais de crianças e adolescentes brasileiros com transtorno do espectro autista e paralisia cerebral: perspectivas da família

Abstract

Autism Spectrum Disorder (ASD) and Cerebral Palsy (CP) affect many children and adolescents, requiring intervention programs that meet their needs, focusing on a family-centered approach. Studies on the subject focus on developed countries, leaving a knowledge gap about the needs and expectations of families in countries with different socioeconomic and health realities, such as Brazil. This dissertation investigates, in an exploratory manner, the functional goals of parents and family members of children and adolescents with ASD and CP from all brazilian regions. The Canadian Occupational Performance Measure (COPM) was used to define goals, based on family-centered practice. Study 1 was conducted with 241 children and adolescents with ASD, average age 6.95 years (sd=3.69), 75.9% of whom were male. Their parents responded to the COPM by choosing goals to be worked on in interventions. A total of 1.203 goals were established, organized into categories by the American Occupational Therapy Association (AOTA). The main goals were related to activities of daily living (ADLs), behavioral difficulties, communication, play, and social interactions. This profile was similar across different levels of support and age groups, but with some variations. Play-related goals were more frequent for participants at support level 3 than those at level 1 (p<0.005). Education goals appeared more frequently at support level 1 (p<0.005). Communication demands were more significant among children aged 0-6 years (p<0.05), while among adolescents, meal preparation and cleaning goals were more significant (p<0.05). In Study 2, 171 children and adolescents with CP and their families were selected, average age 7.68 years (sd=3.32), of whom 54.4% were male. A total of 740 functional goals were identified, also organized into categories by the AOTA. The main goals included ADLs, body functions, motor skills, and play. The profiles of functional goals were similar across different levels of GMFCS, MACS, and age groups, but with some variations. Play goals were more frequent for children aged 0-6 years (p<0.05). Dressing goals were more significant among participants at GMFCS levels I-III, while positioning motor skills were more frequent for levels IV-V (p<0.05). Participants at MACS levels I-III showed significant differences (p<0.05) in toilet use and personal hygiene goals, while at levels IV-V, the most significant goals were swallowing and communication (p<0.05). In summary, ADLs emerge as the main focus area for both children and adolescents with ASD and those with CP. Prioritizing ADLs reflects a desire of parents to promote their children's autonomy, which can significantly reduce parental burden and stress, as well as expand community participation. Interventions and therapeutic programs aimed at children with disabilities should emphasize the development of skills related to ADLs, thus meeting the immediate needs of these individuals and preparing them for a future with more independence and greater participation.