Maria Carolina Witkowskia,*
Doctoral student, Graduate Program in Child and Adolescent Health, School of Medicine, Federal University of Rio Grande do Sul, Porto Alegre, RS, Brazil.
Corresponding author. Email: firstname.lastname@example.org
This study aimed to present the experience of training familial caregivers how to use parenteral nutrition at home for children and adolescents participating in a multi-professional intestinal rehabilitation program at a university hospital. The project concluded that such a practice is feasible in the public health system in Brazil.
The process of bringing children and adolescents with parenteral nutrition (PN) home from the hospital can be viable, safe and effective through PN care training for family caregivers at home.
This was the conclusion of researchers from the Federal University of Rio Grande do Sul, in Porto Alegre, Rio Grande do Sul, who sought to evaluate the experience of training family members of children and adolescents to provide home PN care for patients participating in the Children and Adolescents Intestinal Rehabilitation Program at a public university hospital in Southern Brazil, between July 2014 and January 2017. The study published in the Revista Paulista de Pediatria - “The training of children and adolescents’ family members for home parenteral nutrition care” - evaluated 27 family caregivers of 17 patients using PN. The inclusion criteria were family members of children aged 30 days to 17 years and expected use of PN≥8 weeks in addition to family members who demonstrated motivation to care for the child. The training included: hand washing and hygiene; infusion pump handling; care with the central venous catheter (CVC) and with the PN solution. The outcomes assessed were: CVC-related bloodstream infection rate, accidental CVC withdrawal, termination of PN infusion more than 60 minutes later or earlier than expected, mechanical obstruction, CVC insertion site bleeding, and death.
Intestinal failure is a condition of severe malabsorption that requires parenteral artificial nutrition.1
The first treatment option for patients requiring long-term PN is home PN. 2
The training of family members of children for at least two to three weeks prior to hospital discharge has shown good results in European countries,3-5
and has also provided a better transition for patients going from hospital to home care.6
In our study, family members of children and adolescents with home-based PN underwent training for at least two weeks and received ready-to-use PN infusion bags to administer to the patient. These bags required no preparation or administration of other solutions prior to the infusion.
The researchers point out two limitations of the study: the lack of quality of life assessment as an indicator of well-being of patients and families and the number of participants. However, this study presented, for the first time in Brazil, the formalization of family caregiver training and caregiver’s active participation in home-based PN care. It provides support for the development of a home-based PN care line in the country for patients that use the public health system. There is a need for changes, as current legislation indicates that this practice is the sole responsibility of nurses.7
In this regard, the results of administering PN at home without the occurrence of serious adverse events, and with the active participation of families trained by nurses and under their supervision, demonstrated that the process of bringing children and adolescents with PN home from the hospital can be viable, safe and effective.
1. Emedo MJ, Godfrey EI, Hill SM [homepage on the Internet]. A qualitative study of the quality of life of children receiving intravenous nutrition at home. J Pediatr Gastroenterol Nutr. 2010;50:431-40 [cited 2019 Jul 9]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/20179643
2. Bielawska B, Allard JP [homepage on the Internet]. Parenteral nutrition and intestinal failure. Nutrients. 2017;9:pii:E466 [cited 2019 Jul 9]. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5452196/
3. European Society for Paediatric Gastroenterology Hepatology and Nutrition [homepage on the Internet]. Home parenteral nutrition in children. J Pediatr Gastroenterol Nutr. 2005:41:S70-S75 [cited 2019 Jul 9]. Available from: https://journals.lww.com/jpgn/Fulltext/2005/11002/11__Home_Parenteral_Nutrition_in_Children.11.aspx
4. Friedman-Gruszczynska J, Ossolinska M, Popinska K, Ksiazyk JB. [homepage on the Internet]. Parenteral nutrition mixtures prepared at home by trained parents are as safe as pharmacy-made mixtures: a 3-y prospective study. Nutrition. 2013;29:988-92 [cited 2019 Jul 9]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/23644008
5. Hughes A, Evans V, Forbes-Penfold D, Koeglmeier J, Hill S. [homepage on the Internet]. Burden of care at night when living with a child on parenteral nutrition at home. Clin Nutr ESPEN. 2015;10:e180 [cited 2019 Jul 9]. Available from: https://www.ncbi.nlm.nih.gov/pubmed/28531479
6. Griffin JB, Pickler RH. [homepage on the Internet]. Hospital-to-home transition of mothers of preterm infants. MCN Am J Matern Child Nurs. 2011;36:252-7 [cited 2019 Jul 9]. Available from:https://www.ncbi.nlm.nih.gov/pubmed/21709523
7. Conselho Federal de Enfermagem [homepage on the Internet]. Resolução COFEN N° 0453/2014. Norma Técnica que dispõe sobre a Atuação da Equipe de Enfermagem em Terapia Nutricional [cited 2019 Jul 9]. Available from: http://www.cofen.gov.br/resolucao-cofen-no-04532014_23430.html