Estudio de las características psicológicas y sociales del cuidador principal de niños con enfermedades neurológicas dependientes de nutrición enteral domiciliaria a través de gastronomía

Home care of a child with disability and home enteral nutrition through gastrostomy (HEN-G) has a significant impact on the family, especially on the primary caregiver that in most cases is the mother. This implies an impact on your personal aspirations, physical health, social and cultural relations, career opportunities and economic resources. The hypothesis of our study was that the main carers of children with a neurological disease and HEN-G may have psychological disorders (anxiety, depression, psychological distress and overload) that affect their health and socio-economical position as well as the nutritional evolution of the patient. This was an analytic longitudinal study, consisting of two series, one prospective and one retrospective that included patients with and without neurological diseases and their primary caregivers. The data collection time was between 2007-2012. The patients were recruited from the Sections of Pediatric Gastroenterology and Nutrition Clinical of the Hospital of Valencia and the Hospital of the Nino Jesus in Madrid. Clinical data were collected from medical records. Nutritional trends and complications of the HEN-G were obtained prospectively. All patients were previously measured at the onset of the nutritional treatment and at 6 and 12 months. Psychological and sociodemographic questionnaires (SCL -90- R, STAI scale and Zarit caregiver burden) applied caregivers were obtained transversely following the introduction of gastrostomy (prospective group) or at the time of cutoff (retrospective group) . The conclusions were: 1) the group of patients in which most often the HEN-G was indicated was the children with neurological disease although the age at which it started was higher to that of other diseases ; 2) mothers were the main carers in all cases; 3) mothers of neurological patients had an unemployment rate higher than the general population and that the group of mothers with children without neurological disease; 4) endoscopic percutaneous gastrostomy was the most widely used technique for placement and 50% of patients experienced some minor complications; 5) enteral formula was mostly used although half of neurological patients consumed food crushed with or without enteral formula; 6) mothers of children with and without neurological disease had higher scores of anxiety and depression. Mothers of children with neurological disease had 2.8 times more risk of anxiety than mothers of children without neurological disease and 1.2 times more than the Spanish population. Likewise, mothers of children with neurological disease showed 2.2 times more risk for depression than mothers of children without neurological disease and 13.7 times the Spanish population; 7) 75% of neurological patients in the prospective group suffered some form of malnutrition at the beginning of the HEN-G. All the children improved their nutritional status after the introduction of the support, this improvement was related whit the use of enteral formula associate whit a age less that 18 months. In these circumstances you can predict an improvement of 1.66 points on the Z-score of BMI for age and sex; 8) mothers whose children did not reach caloric intake recommended by your doctor, showed 11.5 times more risk for anxiety symptoms. Likewise , mothers whose children had a chronic or an acute chronic malnutrition showed higher psychological overload; 9) mechanical complications, such as skin lesions, increased symptoms of anxiety, depression and maternal overload. Likewise, the time devoted to feeding the child was directly related to the presence of mother depressive symptoms; 10) most mothers showed high satisfaction with nutritional support and observed a decrease in the time alimentation and in the number of respiratory infections and also, they noticed an improvement of nutritional status after the placement of the gastrostomy.