Trajectory and emotional overload of the family of autistic children: maternal reports / "Trajetória e sobrecarga emocional da família de crianças autistas: relatos maternos".

AUTOR(ES)
DATA DE PUBLICAÇÃO

2005

RESUMO

Significant changes are made in a family’s life cycle when one of the family members acquires the special condition of a chronic illness. One important factor to be taken into consideration is how the family faces a child’s sickening, especially how mothers face their child’s special condition. This study aimed to examine the emotional overload (stress and depression) on the mothers of children with autism, to verify how this overload relates to the quality of life evaluation and to get to know the main difficulties that result from the child’s care demands and coping modes. Research participants were 20 mothers of children with autism, who attended two care institutions. During meetings with each participant, a semi-structured interview was held and the following standardized evaluation instruments were applied: Lipp’s Stress Symptoms Inventory for Adults (LSSI), Problem Coping Modes Scale (EMEP), Beck Depression Inventory and the Quality of Life Scale (WHOQOL-Bref), complemented by a questionnaire to identify the participants’ sociodemographic and cultural profile. Interviews were accomplished at the institution and/or at the participant’s house. The application of the instruments started by reading and signing the Consent Terms. Interviews were audio-taped, transcribed and submitted to thematic content analysis. Nonparametric correlation was used to statistically verify the existing relations between the study variables. The results indicated an average age of 40 years for the interviewees and 11 for the children, families had low income and had two or three children. While 25% of the mothers had finished higher education, another 25% had not finished basic education. Only two participants spent part of the day outside their homes due to paid work and mentioned help from an employee to take care of the autistic child. Evaluation results indicated that 65% of the mothers displayed stress. With respect to depressive symptoms, one participant presented dysphoria and two mothers demonstrated depression. The coping analysis revealed that 45% of the participants used strategies that mainly focused on religious practices and fantastic thoughts, while 35% of the mothers used problem-focused strategies. What quality of life is concerned, the physical domain received the highest grade and the environment domain the lowest. Considering the innumerable possibilities of reflection, analysis of the semistructured interview permitted the discussion about some themes: the family trajectory in the attempt to understand the child’s problem, constituting a pilgrimage movement through hospitals and health professionals; the mourning faced by the family and the difficulties to deal with the child’s condition; the changes in family dynamics and the emotional overload of mother which culminated in the rationalization process of suffering; the helplessness parents feel with respect to the future perspectives of care for the child.

ASSUNTO(S)

autismo sobrecarga emocional família family emotional overload autism

ACESSO AO ARTIGO

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