Treino intensivo de objetivos funcionais associado a estratégias de educação de pais na promoção da funcionalidade diária de adolescentes com paralisia cerebral

Abstract

Adolescents with cerebral palsy (CP) may have limitations in performing self-care, household, school and leisure tasks. Such limitations may imply the need for continuous and complex care, which often results in physical, emotional and financial burden for caregivers. The aims of the study are: to compare the effects of an intensive training of individualized functional goals with adolescents associated with educational strategies with caregivers, in relation to the effects of intensive training of individualized functional goals carried out exclusively with adolescents. Another aim was to understand the perceptions of adolescents and their caregivers regarding the interventions. A mixed-method study was conducted, with an explanatory sequential research strategy, with 21 adolescents, aged between 12 and 17 years, diagnosed with CP, and their respective mothers. Adolescents were randomly assigned to Group A (n=10) or Group B (n=11) and classified for gross motor skills using the Gross Motor Function Classification System (GMFCS) at levels I to IV and for manual skills using the Manual Ability Classification System (MACS) at levels I to III. Adolescents identified their prioritized functional goals using the Canadian Occupational Performance Measure (COPM). Group A training occurred with the adolescents at the rehabilitation centers for 2 weeks, 5 times a week, 3 hour/day. Group B training took place with the adolescents and their mothers in a hybrid format, with 5 in-person meetings of 3 hours/day at the rehabilitation center, alternating with 5 online meetings with each mother/adolescent at home. In both groups, the interventions lasted 30 hours. Outcome measures included the COPM performance and satisfaction scales, the Pediatric Assessment Inventory of Disability- Computerized version (PEDI-CAT), and the Dimensions of Mastery Questionnaire (DMQ-18). Data were collected before the intervention (T1), after the intervention (T2), and 4 months after the intervention (T3) by an examiner blinded to the intervention procedures. Mixed analysis of variance (ANOVA) tested the effects of the independent group factor and the repeated measures factor to compare groups and assessments. Semi-structured interviews were conducted with all adolescents and their mothers, 10 days after the end of the intervention. The interviews were conducted individually and virtually, with audio recording and subsequent transcription. Data analysis was performed using thematic category analysis using MAXQDA software. Participants in both groups showed significant changes in the COPM performance and satisfaction scales after the intervention, with results maintained after 4 months. Regarding daily activities (PEDI-CAT), there was a group x time interaction effect, with greater improvements in Group B compared to Group A. Both groups showed a statistically significant improvements in PEDI-CAT social/cognitive scores after the intervention, with maintenance after 4 months. There was no statistically significant change in mobility, responsibility or motivation outcomes after the intervention. Four thematic categories emerged from the content analysis of the interviews: (1) “Expectations and fears”; (2) “Challenges along the way”; (3) “Partnership in training”; (4) “Change for everyone”. Adolescents and mothers reported their expectations, challenges, and possibilities experienced with the intervention. They also reported improvements observed in the performance of the tasks trained during the intervention. Participants in Group B highlighted changes in the daily routine and in the mothers' attitudes to promote their children's functional performance after the intervention. The results of the present study indicate similar effects of the two proposed interventions on the adolescents' performance in the functional goals trained during the intervention. The participation of caregivers facilitated the adolescents' engagement in daily tasks, in addition to reducing the time required for intervention in the clinical environment. Challenges reported in both groups were also reported by participants, such as travel to the rehabilitation centers, the need to reorganize the families' daily routine to participate in the interventions and the adolescents' discomfort in filming their performance at home. Such information may help adolescents and their families to choose effective interventions to promote daily functioning that best suit their needs and preferences. Future studies may investigate other formats and dosages of providing individualized functional goal training for adolescents with CP.