ABSTRACT
OBJECTIVES: Data on multidisciplinary programs dedicated to home parenteral nutrition (HPN) in Latin America are limited. This study describes the results of the first multidisciplinary pediatric intestinal rehabilitation program for HPN at a public tertiary hospital in Brazil. METHODS: We retrospectively reviewed patients aged 0-18 years with intestinal failure (IF) who required parenteral nutrition (PN) for >60 days between January/2014 and December/2020. RESULTS: Fifty-four patients were discharged on HPN (15 achieved enteral autonomy, 34 continued on HPN at the end of the study, 1 underwent intestinal transplantation, and 4 died). The median (IQR) age at the study endpoint of patients who achieved enteral autonomy was 14.1 (9.7-19) versus 34.7 (20.4-53.9) months in those who did not achieve enteral autonomy. Overall prevalence of catheter-related thrombosis was 66.7% and catheter-related bloodstream infection rate was 0.39/1000 catheter-days. Intestinal failure-associated liver disease (IFALD) was present in 24% of all patients; none of the patients who achieved enteral autonomy had IFALD. All patients showed significant improvement in anthropometric parameters during the HPN period. The sociodemographic characteristics of the patients' family members were mothers less than 20 years old (7.5%), schooling time more than 10 years (55.5%), and household income between 1 and 3 times the minimum wage (64.8%). The 5-year survival rate for HPN is 90%, and 27.7% of patients achieve enteral autonomy. CONCLUSION: The treatment of pediatric patients with IF followed by a multidisciplinary pediatric intestinal rehabilitation program with HPN is feasible and safe in the Brazilian public health system.
Subject(s)
Intestinal Diseases , Liver Diseases , Parenteral Nutrition, Home , Adult , Brazil , Child , Humans , Intestinal Diseases/etiology , Intestinal Diseases/therapy , Liver Diseases/etiology , Parenteral Nutrition, Home/adverse effects , Retrospective Studies , Young AdultABSTRACT
ABSTRACT Objective: 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.
RESUMO Objetivo: Apresentar a experiência da capacitação de familiares de crianças e adolescentes participantes de um programa multiprofissional de reabilitação intestinal de um hospital público terciário para uso de nutrição parenteral (NP) no domicílio. Métodos: Estudo descritivo transversal com familiares cuidadores de pacientes do Programa de Reabilitação Intestinal do Hospital de Clínicas de Porto Alegre, RS, Brasil, entre julho/2014 e janeiro/2017. Critérios de inclusão: familiares das crianças com idades entre 30dias e 17 anos e previsão de uso de NP≥8 semanas; e familiares que demonstrassem motivação para os cuidados da criança. Acapacitação contemplou: lavagem e higienização das mãos; manuseio da bomba de infusão; cuidados com cateter venoso central (CVC) e com solução de NP. Desfechos avaliados foram: taxa de infecção de corrente sanguínea relacionada ao CVC (ICSRC), saída acidental do CVC, término da infusão da NP com atraso ou adiantamento maior que 60minutos em comparação ao previsto, obstrução mecânica, sangramento do sítio de inserção do CVC e óbito. Resultados: Foram capacitados 27 familiares de 17 crianças, com mediana de idade de 28 (18-60) anos, dos quais 63% eram mães. A taxa média de ICSRC observada foi 1,7/1.000 dias de uso de CVC, e a saída acidental do CVC ocorreu em 29,4% dos pacientes. Não foram observadas complicações referentes à infusão da NP, a sangramento ou a óbito. Conclusões: A capacitação de familiares cuidadores possibilitou a execução de maneira segura da NP no domicílio com participação ativa das famílias, tornando o procedimento viável no sistema público de saúde no Brasil.
Subject(s)
Humans , Male , Female , Infant , Child, Preschool , Child , Adolescent , Adult , Young Adult , Family , Health Education/methods , Caregivers/education , Parenteral Nutrition, Home , Brazil , Cross-Sectional Studies , Outcome Assessment, Health Care , Middle AgedABSTRACT
OBJECTIVE: 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.
Subject(s)
Caregivers/education , Family , Health Education/methods , Parenteral Nutrition, Home , Adolescent , Adult , Brazil , Child , Child, Preschool , Cross-Sectional Studies , Female , Humans , Infant , Male , Middle Aged , Outcome Assessment, Health Care , Young AdultABSTRACT
A fibrose cística é uma doença genética, sistêmica, manifestando-se principalmente através de alterações no trato respiratório e digestório. O tratamento é diário e rigoroso cujo objetivo é de manutenção da saúde, evitando a exacerbação da doença. Este relato pretende dar visibilidade ao trabalho realizado pelas enfermeiras no Hospital de Clínicas de Porto Alegre no cuidado à criança e adolescente com fibrose cística e suas famílias, através de atividades realizadas pelo enfermeiro no ambulatório e internação hospitalar. Entre estas atividades destaca-se o grupo de sala de espera, participação em reuniões multidisciplinares, implementação de rotinas, treinamento da equipe de enfermagem, cuidados na prevenção da infecção cruzada, elaboração da lista de pacientes para a internação e implementação do tratamento hospitalar. A enfermeira realiza a assistência, visando uma melhor qualidade de vida a estes pacientes e suas famílias, através da implementação de cuidados adequados e de orientações específicas. As intervenções realizadas pretendem a aceitação da doença, a melhora clínica do paciente, o controle dos sintomas, o conhecimento da doença e do regime terapêutico, o comportamento de adesão ao tratamento e a participação do familiar no cuidado. Acredita-se que a apresentação da dinâmica de trabalho e atividades descritas neste relato, possam contribuir com outros serviços de enfermagem que atendam esta clientela, na busca das melhores práticas.
Cystic fibrosis is a genetic and systemic disease primarily characterized by changes in the respiratory and digestive tracts. Its rigorous daily treatment aims at preserving the patients health and to prevent the progression of the disease. This report draws attention to the work performed by nurses at Hospital de Clinicas de Porto Alegre in the care of children and adolescents with cystic fibrosis and their families as it discusses the activities developed in the outpatient clinic and in the medicalwards during hospitalizations. Of these activities, we highlight the waiting-room group, the participation in multidisciplinary meetings, the implementation of routine practices, the training of the nursing staff, the prevention of cross-infection, the preparation of patient lists for hospital admission and the implementation of hospital treatment. Nurses provide assistance and seek to improve quality of life for these patients and their families by providing adequate care and implementing specific guidelines. The main objectives of each hospital admission are to promote acceptance of the disease, clinical improvement and control of symptoms, to improve knowledge of the disease and of the treatment prescribed, to promote adherence to treatment and to conduct discussions about the participation of relatives in the patients care. The description of our work dynamics and activities may contribute to improving other nursing services that work with similar clientele.
