Abstract
ABSTRACTObjective: To report the experience of the training in home parenteral nutrition (PN) directed to family members of children and adolescents participating in a multidisciplinary intestinal rehabilitation program of a tertiary public hospital.Methods: Cross-sectional descriptive study with family caregivers of patients from the Intestinal Rehabilitation Program of Hospital de Clínicas de Porto Alegre, RS, Brazil, from July/2014 to January/2017. Inclusion criteria: family members of children aged 30 days to 17 years and estimated PN use ≥8 weeks; and family members motivated to care for the child. The training covered: hand washing and disinfection; infusion pump handling; and central venous catheter (CVC) and PN care. Outcomes assessed: catheter-related bloodstream infection (CRBSI) rate, accidental CVC exit, end of PN infusion with more than 60minutes of delay or advance compared to the time predicted, mechanical obstruction, bleeding in the CVC insertion site, and death.Results: Twenty-seven family members of 17 children were trained. Their median age was 28 (18-60) years, and 63% were mothers. The mean CRBSI rate was 1.7/1,000 days of CVC use, and 29.4% of patients had at least one episode of accidental CVC exit. There were no complications related to PN infusion, bleeding, or death.Conclusions: The training of family caregivers allowed the safe implementation of home PN, with the active participation of families, making the procedure feasible in the public health system in Brazil.
Highlights
Intestinal failure (IF) is a severe malabsorption condition that demands artificial nutrition via parenteral.[1]
A total of 27 family caregivers of 17 patients on parenteral nutrition (PN) were eligible for the study
This study presented the results of the training of children’s and adolescents’ family caregivers in home PN care of patients participating in the intestinal rehabilitation program for children and adolescents of a public university hospital in Southern Brazil
Summary
Intestinal failure (IF) is a severe malabsorption condition that demands artificial nutrition via parenteral.[1] It can be acute — when the patient depends on parenteral nutrition (PN) for up to 90 days —,2 or chronic – when the time of PN use exceeds 90 days. The first treatment option for patients who need longterm PN is home PN.[3]. Home PN allows both patients and their family to live outside the hospital. PN can improve the quality of life of patients and their entire family, and increase survival, promote social interaction, and reduce costs with health.[4] Home PN was introduced in Europe in the decade of 1970,5 and requires an integrated multidisciplinary team of physicians, nurses, pharmacists, nutritionists, psychologists, and social workers.[6,7]
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