Dificuldades e dúvidas de pais de crianças com paralisia cerebral

Abstract

In our society families have proved to be the main source of care providing in illness and / or disability. Despite the changes in family dynamics occurred in the past decades, namely the entry of women in the world of work, they continue to be the main caregivers of the sick and / or disabled person, whether he/she is a child, an adult or an elderly. The role played by family caregivers and the disturbances it creates will change and / or restrict the natural development of the family. Therefore, these families often need to readjust themselves in order to cope with these complex situations and acquire skills to effectively support the ill family member. Our goal was to identify the type of needs and barriers that a group of six families with children with cerebral palsy, attending a school group from the urban centre of Braga, face and in this sense, give a modest contribution to the study of the subject in Portugal. As tools for collecting information we used a semi-structured interview created for this purpose and based on literature review and the Portuguese version of the interview used in Zarit Caregiver Burden Interview. The results suggest that the mother is the primary caregiver. These caregivers seem to have accepted, with resignation, the problem of their children, although they claim to worry only about living the present. The results point to feelings and behaviors related to anxiety, doubt, fear when receiving the diagnosis and difficulties in triggering actions for solving problems related to caring. In what the quality and quantity of clinical information obtained on the issue of cerebral palsy is concerned, they declare it is scarce and they still have many doubts about what are the best ways to take care of their children. These caregivers have demonstrated knowledge in relation to the evolutionary stages of child development, the majority of caregivers (5 out of 6), had already realized that the child had a problem, although they hadn’t identified it as cerebral palsy , before the diagnosis was given to them. In relation to networks of support, these mothers mentioned that in their daily lives they need some help to take care of their children. Most mothers (4 out of 6) count on grandparents or other relatives to help taking care of them. In spite of this help, the majority of mothers (4 of 6) had to quit their job to take care of their children. Contrary to expectation, the existence of a child with a disability does not necessarily bring greater flexibility to find help or greater solidarity among the family members. The Portuguese State provides education and health support to these children. In what education is concerned, these children benefit from the special education services and their families agree that it suits their expectations although two caregivers consider that they could receive more help from school. Regarding health services, individuals with disabilities have right to the same services as any other citizen and also to be seen by specialized doctors in hospitals. Fifty percent of caregivers do not consider health support to be enough. The child’s cerebral palsy influences the decision of repeating motherhood.

Date of Award	15 Dec 2011
Original language	Portuguese
Awarding Institution	Universidade Católica Portuguesa
Supervisor	Lúcia do Rosário Cerqueira de Miranda (Supervisor)