Experiences and quality of life of mothers of children with cerebral palsy. / Experiências e qualidade de vida de mães de crianças com paralisia cerebral

AUTOR(ES)
DATA DE PUBLICAÇÃO

2007

RESUMO

As a chronic deficiency condition, cerebral palsy has social implications that affect all family members. Being the mother of a child with cerebral palsy involves a series of changes in personal, marital and professional life, affecting the quality of life of such mothers. The general objective of the present study was to learn about the experiences of mothers of children with cerebral palsy and to assess their quality of life, and the specific objective was to determine how these mothers perceive and evaluate the family dynamics, and their interpersonal, social, marital and professional relations before and after the birth of a child with cerebral palsy. The study was conducted on 15 mothers of children with cerebral palsy aged more than 7 years who are tetraplegic, with no prognosis of ever being able to walk and with severe motor and cognitive impairment, and thus totally dependent on care provided by one or more other persons. All children are followed at the Sector of Childhood Rehabilitation, Sarah Rehabilitation Center, Fortaleza. A semi-structured interview instrument prepared for the purposes of the present study and the abbreviated form of the questionnaire developed by the World Health Organization (WHOQOL-Bref), Portuguese version described and validated by Fleck et al (2000), were used. The interview data were analyzed by the Qualitative-Interpretative System (Biasoli-Alves, 1998). The data obtained with the WHOQOL-Bref were scored using the SPSS statistical software according to the World Health Organization (THE WHOQOL GROUP, 1998). The results showed that the mean age of the mothers enrolled in the study was 33,6 years, with 73,3% of them having low income, 40% having complete elementary education, and only 26,6% having complete higher education, and that their mean age during gestation of the child with cerebral palsy was 22,6 years. Of the children with cerebral palsy, 60% are girls, 67% are the first child, only 20% attend school, and 80% use a wheelchair to aid locomotion. The results of the interviews showed that all mothers are informed and counseled about the disease of their children. The most common reaction to the news that their children had cerebral palsy was sadness, with 66,7% of the mothers having expectations of improved overall development of their children and 26,67% having expectations of a cure. 93% reported that they have a support network. When comparing their life before and after the birth of the child with cerebral palsy in terms of social relations, 53% of the mothers stated that they currently have no friends or leisure activities; 86,6% used to have a job and, after the birth of the child with cerebral palsy, only 53,3% returned to work. When evaluating their quality of life during the interview, 53% of the mothers reported a worsening of some aspects after the birth of the child with cerebral palsy. However, the WHOQOL-Bref data demonstrated that they are currently satisfied with their quality of life, in contrast to the data obtained in the interview. The rates of satisfaction were slightly above average in all domains, and the highest index was detected in the physical domain. We may conclude that the diagnosis of cerebral palsy in a child alters the family dynamics, interfering with the quality of life of the mothers, who are the main caregivers, that a support network is fundamental for the restructuring of the family, and that it is important to attend rehabilitation programs where the mothers can clarify their doubts and better understand the diagnosis of their children. We emphasize that the care provided by the Sarah Center represents an important support network that may influence the satisfaction with their current quality of life as reported by the mothers.

ASSUNTO(S)

qualidade de vida family. quality of life paralisia cerebral cerebral palsy família

ACESSO AO ARTIGO

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