Burden of care at night when living with a child on parenteral nutrition at home

Hughes, Anna; Evans, Victoria; Forbes-Penfold, D.; Köeglmeier, Jutta; Hill, Susan

doi:10.1016/j.clnesp.2015.03.011

Cited by 4 publications

(3 citation statements)

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“…Home PN was indicated as a safe practice, well established in both children and adults 7 13 , 15 The training of children’s family members for at least two to three weeks before hospital discharge showed good results in European countries, 16 , 17 , 18 even when it covered the addition of electrolyte solutions to the PN bag 16 . The training also improved the transition from hospital to home care 19 .…”

Section: Discussionmentioning

confidence: 99%

Training of Children’s and Adolescents’ Family Members in Home Parenteral Nutrition Care

Witkowski

Silveira

Durant

et al. 2019

Rev. paul. pediatr.

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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.

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Section: Discussionmentioning

confidence: 99%

Training of Children’s and Adolescents’ Family Members in Home Parenteral Nutrition Care

Witkowski

Silveira

Durant

et al. 2019

Rev. paul. pediatr.

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“…presented data showing caregivers in their program woke between 1 and 8 times at night to provide for the needs of their children. 45 This represents a significant burden of care on the caregiver and must be accounted for. Children with USBS will require prolonged home PN making the caregivers at risk of burn out.…”

Section: Care Coordinationmentioning

confidence: 99%

<p>Multidisciplinary Management in Pediatric Ultrashort Bowel Syndrome</p>

Belza¹,

Wales²

2020

JMDH

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Pediatric intestinal failure (IF) remains a complex and devastating condition resulting in the inability of the gastrointestinal tract to absorb adequate fluids and nutrients to sustain life. The goal in the management of IF is to achieve enteral autonomy and when not possible to avoid and minimize the development of long-term complications. Survival rates for children with IF have continued to improve resulting in an increased population of children with more altered anatomy. While IF remains a rare disease, children with IF secondary to ultrashort bowel syndrome comprise an even smaller patient population. The goal of this article is to review the recent literature related to the impact of multidisciplinary intestinal rehabilitation programs (IRPs) on the management and outcomes of intestinal failure in children with ultrashort bowel syndrome and potential avenues to further improve the long-term outcomes of this patient population.

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“…There is an added burden of providing enteral tube feeding as boluses or via pumps in most children both in the day and night. 31 …”

Section: Introductionmentioning

confidence: 99%

Epidemiology, management and outcome of ultrashort bowel syndrome in infancy

Batra

Keys

Johnson

et al. 2017

Arch Dis Child Fetal Neonatal Ed

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Ultrashort bowel syndrome (USBS) is a group of heterogeneous disorders where the length of small bowel is less than 10 cm or 10% of expected for the age. It is caused by massive loss of the gut which in the neonatal period can be a result of vanishing gastroschisis or surgical resection following mid-gut volvulus, jejunoileal atresia and/or extensive necrotising enterocolitis. The exact prevalence of USBS is not known although there is a clear trend towards increasing numbers because of increased incidence and improved survival. Long-term parenteral nutrition (PN) is the mainstay of treatment and is best delivered by a multidisciplinary intestinal rehabilitation team. Promoting adaptation is vital to improving long-term survival and can be achieved by optimising feeds, reducing intestinal failure liver disease and catheter-related bloodstream infections. Surgical techniques that can promote enteral tolerance and hence improve outcome include establishing intestinal continuity and bowel lengthening procedures. The outcome for USBS is similar to patients with intestinal failure due to other causes and only a small proportion of children who develop irreversible complications of PN and will need intestinal transplantation. In this review, we will summarise the available evidence focusing particularly on the epidemiology, management strategies and outcome.

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Burden of care at night when living with a child on parenteral nutrition at home

Cited by 4 publications

References 0 publications

Training of Children’s and Adolescents’ Family Members in Home Parenteral Nutrition Care

Training of Children’s and Adolescents’ Family Members in Home Parenteral Nutrition Care

<p>Multidisciplinary Management in Pediatric Ultrashort Bowel Syndrome</p>

Epidemiology, management and outcome of ultrashort bowel syndrome in infancy

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