Estudio exploratorio de las condiciones sociodemográficas y estado de salud de niños y adolescentes con espina bífida

Abstract

ABSTRACT The main contribution of this study is the characterization of the state of health of a collective with spina bifida, with an age range between 1 and 12 years. Objectives: It was considered the typification of the diet, by the description of the macro and micronutrients intake, to compare subsequently the diet of the infant-juvenile population affected by spina bifida with the recommendations given for the Spanish infant-juvenile population; and finally to know the perception and personal experiences of fathers and mothers about the disability of children with spina bifida in the Region of Murcia. Methodology: This descriptive transversal study had two sampling periods: May-July 2009, May-July 2011. The number of participants was 19 in the 1st sampling, belonging to AMUPHEB; and 12 in the 2nd, belonging to associations of spina bifida all over Spain. In both cases the parents were given the dietary history of 15 days, Kreceplus test for food habits, Kreceplus test for physical exercise and questionnaire of sociodemographic characteristics, made ad-hoc by the research staff. The intake of macro and micronutrients were determined and the percentage of individuals according to their ages that fulfilled such daily intake recommendations. Regarding the physical activity, the largest proportions were calculated, by age, of number of hours of physical exercise per day as well as the time spent daily with the television and video game console/s. In order to determine the food habits, 7 items were assigned for the food consumption, as well as 4 for the breakfast and 4 for the preferences; calculating the number of subjects according to their age who fulfil the condition. From these results it was diagnosed the proportion of individuals for each group which was in each nutritional level (low, medium, high). Finally, in the test of sociocultural characteristics, it was determined the percentage and the proportions of individuals who lived in the same home and place of residence. Lastly a study of qualitative design was carried out (May 2014) in order to explore the perceptions, expectations and experiences about the feeding, the physical exercise, stigmatization and perception of weight, by an interview in depth. 14 children with spina bifida from the Region of Murcia took part (ages 8-18); delimiting such sampling by information saturation. The collection of data was done by an interviewer previously trained, establishing a series of open questions by means of a semi-structured interview; they were registered and transcribed literally. They were characterized according to the subjacent categories stablished and the systematization on the analysis was carried out in several stages. Conclusions: It is concluded that the infant-juvenile population with spina bifida from 1 to 12 years, object of this study, does not comply with the nutritional parameter of the Mediterranean Diet. It presents low consumption of fresh fruit, fresh vegetables as well as cereals and legumes; high consumption of processed baked goods, candies and sweets. The daily consumption of energy, carbohydrates and fibre was lower than the recommended amount; high on proteins. The dairy intake of folic acid and iodine were anomalously low, being anomalously high the sodium one. Practically, the totality of the population presents overweight and/or obesity to a greater or lesser degree. Regarding the sociodemographic characteristics, most of the population lived in rural municipalities and the predominant family model was non-extended nuclear family. The totality of the population exhibited a sedentary pattern, devoting a great amount of their free time to sedentary leisure and doing less than 2 daily hours to physical activities. The fundamental characteristic of our sample is that they suffer continuous hospitalizations and medical visits to different specialists, to treat the diverse functional complications that are inherent to their condition. As a consequence they present high rates of school absenteeism, taking part in less school and out-of-school activities, feeling rejected and excluded. They presented problems and difficulties in socialization, solitary conducts and social isolation. The experience of the parents is that the school and urban physical environment are not sufficiently adapted to the needs of children with this physical disability and there is scarce social awareness. They require social sensitivity of their condition (spina bifida) and full inclusion in society without any restriction. Key words: spina bifida, split spine, infant-juvenile, test Kreceplus, daily intake, food consumption frequency, nutritional pattern, Mediterranean diet, passive leisure, sedentarism, rural, non-extended nuclear family, socialization problems, solitude, social isolation, school absenteeism, social awareness, adapted spaces.