Educação em saúde on-line para mães de crianças com paralisia cerebral: conhecimento sobre a deficiência e coping familiar em tela

Abstract

Cerebral Palsy (CP) affects the functionality of children and adolescents, significantly impacting families who need to develop effective coping strategies to manage the condition. Educational programs for families have been reported as a strategy to assist families; however, such family interventions are lacking. This research evaluated the effects of an online health education program on CP on the knowledge and coping strategies of families of newly diagnosed children. The study adopted a quasi experimental design with no randomization of the sample and no control group. A non-probabilistic characterization sample of 48 participants was recruited through an online form containing the Demographic, Family System, and Knowledge and Questions about CP Characterization Questionnaire, and the Brazilian versions of the Family Crisis Oriented Personal Evaluation Scales (F-COPES). From this sample, six mothers of children aged 0 to 3 years were selected to participate in the intervention. For these participants, the Pediatric Evaluation of Disability Inventory – Computer Adaptive Testing (PEDI CAT), the Gross Motor Function Classification System – expanded and revised, the Family Report Questionnaire, and a semi-structured interview script about participation in the psychoeducational program were also applied. The psychoeducational program EmFRENTE was developed after identifying the doubts and coping strategies of the general and intervention samples, as well as the functional characteristics of the children whose mothers would participate in the intervention group. Descriptive and inferential statistics using the JT Method and content analysis of the interviews were used to analyze the data. There was no difference between pre- and postEmFRENTE scores in knowledge about CP. The main themes of doubt were communication and speech, movement stimuli, adaptive equipment, and positioning. Regarding coping strategies, a reliable positive change was observed in all factors and for the total scale; however, the changes were not uniform across all families, showing stable gain, unstable gain, and even loss. Concerning functionality, a reliable positive change was identified, especially in Mobility, though changes were not uniform among the children. The proposed online intervention has the potential to develop family coping strategies and mobility gains; however, there is a need to improve the program, including, for example, a longer follow-up period for some mothers. Despite the limitations, this quasi-experiment contributes to the scarce literature on interventions focusing on CP, family coping, and functionality.