Medical and psychosocial experiences of family caregivers with children fed enterally at home

Background: Pediatric home enteral nutrition (HEN) studies that evaluate the psychosocial aspects of caregiving are limited. Overlooking the psychosocial needs of the caregiver may result in negative outcomes such as lack of adherence to the HEN regimen. This study determined whether caregivers report psychosocial situations more frequent and difficult to manage than medical situations. Methods: A questionnaire, which identified 10 psychosocial and 10 medical issues related to pediatric HEN, was mailed to 150 caregivers (37 responded), who rated the statements for frequency and difficulty. Each statement was ranked from most frequent/difficult to least frequent/difficult by mean cross-product score (frequency x difficulty). To indicate overall burden, a medical total composite score (MTCS) and a psychosocial total composite score (PTCS) were calculated by summing the cross-products of the respective problems. Paired t tests compared MTCS to PTCS and also the psychosocial frequency means and difficulty means to the same for the medical problems. Results: Of the top 10 problems, 7 were psychosocial, whereas 3 were medical. Caregivers reported incidences of psychosocial problems more frequently (p <.003) than medical problems, and they had more difficulty (p <.001) with the psychosocial situations than with the medical ones. The PTCS was significantly higher (p <.001) than the MTCS. Conclusions: The psychosocial situations were perceived as causing a greater burden and greater difficulty in coping with everyday life. Health professionals need to understand and address the psychosocial difficulties of the caregiver in order to provide support for the caregiver and promote positive growth and development of the child.