Adaptação e desempenho ocupacional das mães de crianças com deficiência

Abstract

The birth of a child awakens several feelings in family members such as joy, happiness and pride, being a moment of celebration. When this child is born with some kind of disability, unexpected demands may arise, making it necessary for family members to adapt to this new situation. A child with a disability may require special care and attention, usually demanded from mothers, making it essential to understand the processes and expectations in the face of something that was not planned, so that the mother can develop and to be adapted to the child. The demands required by disabilities can cause damage to the mothers occupational performance, considering that their routine will be linked to the child's. Thus, this study aimed to investigate the mother's adaptation process and whether there were interferences in occupational performance. This is a descriptive and cross-sectional study with a quantitative-qualitative approach. The sample consisted of 31 children´s mothers with disabilities, including Autistic Spectrum Disorder, Down Syndrome and Cerebral Palsy. For data collection, the Parental Disability Adaptation Scale (PDAS), the Canadian Occupational Performance Measure (COPM) and a Form on Needs of Children’s Mothers with Disabilities prepared by the researcher were applicated. The data analysis was performed using PDAS and COPM own procedures, in addition by apllying the Mann-Whitney U Test for PDAS. The data from the Form on Needs for Children´s Mothers with Disabilities were computed individually and then compared to identify similarities between mothers. Among the results, it was found that out of the 30 mothers, 29 are adapted to their children and 1 is still in the process of development, it is because the diagnosis of disability was received just 4 months ago, at the time of the research. The influence of some factors showed a statistically significant difference in adaptation, specifically in the dimensions measured by PDAS. Among these factors, the type and time since of diagnosis, the children's age and the mother's type of work. As for the needs of mothers, it was observed that some obtained information about the disability, family members were important as an emotional and functional support, and the family financial issue was affected by the costs generated by the children's disability. Regarding the mothers' occupational performance, it was noted that some occupations performed before were no longer possible to do after the birth of the child, and some different occupations started to be performed to meet the demands of both mothers and children. It is concluded that as much as mothers are adapted to their children, their routine and occupations were impacted, denoting that changes in occupational performance accompany the process of personal development of these mothers combined with the type of environment in which they live and the existence of social support.