Familia, atención primaria y riesgo de discapacidad en la infancia

Abstract

ABSTRACT This paper addresses the impact on families caused by any difficulty faced by a child in the early childhood stage, between 0 and 5 years old, which may complicate his evolutionary development to the point, in some cases, of risk of disability. In the territorial context of the Region of Murcia, these children are often treated within the framework of Early Intervention discipline, which aims to prevent and work on improving the difficulties faced by children. In general, the objectives of this work are: 1) Knowing the consequences that Early Intervention needs have in different family areas or dimensions, and the risk of disability in a 0 to 5 year-old child; and 2) Exploring and describing related variables that affect the development of certain aspects or dimensions in family life: supportive environment, primary caregiver, working environment, family welfare, family relationships (sibling relationships, parenthood, partnership). To carry out this study, the dimensions mentioned in the second objective were defined after an observation period and a literature review. In addition, variables that allow us to explore each of these family aspects were also defined and, a survey, based on these variables, was developed and distributed to every Centre for Children Development and Early Intervention in the Region of Murcia. In this study, 29 centres were involved and 347 surveys corresponding were conducted as part of a quantitative study with a non-probabilistic purposive sample having a wide territorial representation and a 85% participation of the centres with Early Intervention in the Region of Murcia. After collecting such data and following a descriptive statistical analysis where descriptive statistics was combined with contrasts of variables and nonparametric tests, the results highlight issues such as a greater number of boys served, a deeper mother involvement in children care (one in three families, she is the primary caregiver), a parental emotional map in connection with their children situation, observing a significant presence of sadness as a predominant feeling at the time of the first information communicated to parents as well as in later times, a risk of excessive burden for primary caregivers, and a significant impact on parent's workplace in case one of their child has difficulties and risk of disability. Besides, the caregiver overload was proven with other variables, and observed that the child dependence degree significantly affect this overload. It was also found that if a family considers that the nature of child's difficulty is permanent affects aspects such as the overall assessment of family life, parenthood, or primary caregiver overload. In general, this research demonstrated, from a large sample (about 10% of Early Intervention child population served in the territory under study), the impact of child's difficulties may have in different areas of the family with relevant results for those who professionally take part and investigate with children in early childhood who have developmental difficulties or risk of disability. When planning interventions with families and even regarding public social policies for Early Intervention, childhood and disability, this study can provide guidance on adaptation to family needs.