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.
Most children were classified has having a social vulnerability. It is imperative to create networks of support between the hospital and the primary healthcare service to promote healthcare practices directed to the needs of the child and family.
MLVI has been used to assess adherence. To determine the MLVI in children <12 years of age at transplantation and to identify demographic correlates and consequences for the graft. This is a retrospective study of 50 outpatients (4.0 ± 3.5 years), at least 13-month post-liver transplantation. The outcomes evaluated were MLVI, ALT > 60 IU/L, ACR, death, and graft loss. We analyzed demographic and socioeconomic characteristics, indication for transplantation, and type of donor. Student's t test and the chi-square test were used. Statistical significance was set at P ≤ .05. Seventy-two percent were infants or preschoolers, 62% biliary atresia. Seventy-four percent of the mothers had middle-school education, and 54% of the families had an income ≤3632.4 US$/y. Twenty-two (44%) patients had a MLVI ≥ 2 SD; this was more prevalent in families with higher incomes (P = .045). ALT levels > 60 IU/L were more common in MLVI ≥ 2 SD group (P = .035). ACR episodes were similar between groups (P = 1.000). No patient died or lost the graft. MLVI ≥ 2 SD may be an indicator of the risk of medication non-adherence.
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