Empowerment Through Participation: Children With ... · Empowerment Through Participation: Children...
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Empowerment Through Participation: Children With Intestinal Failure
HA Convention 2015 May
Tomcy Leung
Nurse Consultant (PICU)
Department of P&AM
Queen Mary Hospital
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Content
• Introduction
• Impact on children and hospital for prolonged hospitalization
• Home parenteral nutrition program
• Strategies to engage parents
• Outcomes
• Conclusion
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Intestinal Failure A malabsorption disorder, defined as an inability of a child to achieve adequate weight and growth without intravenous nutritional support, has two principal components:
the intestine is too short as a consequence of surgical resection,
the intestine is dysfunctional despite adequate length
Rudolph & Squires, 2010
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Rudolph, A & Squires R. Current concepts in the medical management of pediatric intestinal failure. Curr Opin Organ Transpl, 2010, 15:324-329.
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Paediatric Conditions Causing Intestinal Failure
Congenital malformation: e.g. small bowel atresia, aganglionosis
Infections of G.I. tract: e.g. necrotizing enterocolitis
Following extensive bowel surgeries secondary to
mesenteric ischemia: e.g. midgut volvulus
Absorptive impairment: e.g. intestinal pseudo-obstruction
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Children With Intestinal Failure
• Require long term hospitalization for nutritional management through:
Strategies for bowel adaptation by continual challenge the bowel with nutrients at the upper limit of the absorptive capacity of the remaining intestine
Use of parenteral nutrition
• Often the child’s condition is good but is hospitalized because of parenteral nutrition
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Impact On Children With Prolonged Hospitalization
• Poor bonding with parents and family members
• Separation anxiety
• Lack of sensory stimulation or play
• Bad experiences due to procedures and therapy
• Cannot attend school
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Impact On Hospital
• Inefficient use of resources
• Increase the burden of the health care system
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To promote a better quality of life for child
with prolonged parenteral nutrition, Home
Parenteral Nutrition Programme is developed to
facilitate the transition from hospital to home
through parents’ participation.
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Parents’ Empowerment
• Ensuring parents have the resources necessary for maintaining the health and well-being of their child
(Laschinger et al, 2010)
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Home Parenteral Nutrition Programme
Objectives :
• Enable the child with parenteral nutrition to be cared at home
• Promote parents-child bonding and child development
• Enhance parents’ understanding of their child’s condition and participation in the care
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Home Parenteral Nutrition (PN) Programme
• Started in Queen Mary Hospital since 2003
• Total 11 children requiring long term parenteral nutrition have participated in this programme
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Home PN Programme
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How To Engage Parents?
• Through guided participation :
learning new skills and knowledge thro’ their participation in practicing the care alongside with nurses
• The active role of parents’ participation is emphasized
• Keep parents in the loop of communication and decision-making
• Continual support to parents
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Advanced Nutritional Support Team
Multi-disciplinary team including:
• Nurses
• Paediatrian
• Paediatric Gastroenterologist
• Paediatric surgeon
• Pharmacist
• Dietitian
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Functions Of Advanced Nutritional Support Team In Home PN Programme
In-hospital & follow-up visits :
• Assess the child’s nutritional intake & tolerance
• Monitor the complications of PN
• Design treatment directions:
Discuss the use of various liver protection strategies
Review strategies for bowel adaptation
• Monitor weight & growth in child
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Outcomes
Patient characteristics :
• 11 children in the programme
10 children were either born at QMH or referred to our unit during neonatal period
One child was referred to the programme at 12 years of age, and not follow-up by our nutrition team
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Outcomes
Patient characteristics (cont’d) :
• Indications for home PN:
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Short bowel syndrome, 9, 82%
Aganglionosis of gut, 1, 9%
Pseudo-obstruction of bowel, 1, 9%
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Outcomes
Duration of PN
• 5 children are still on HPN
(ranging from 3 months to 4.7 years)
• 4 children weaned off PN within 11 to 18 months after discharge
• 1 child died of septiceamia not related to PN complications
*The outcome of 10 children are mentioned hereafter as the 12 year-old is followed up in the referring hospital. 18
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Outcomes
Catheter Associated Blood Stream Infection
(CA-BSI)
19 0
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2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014
BSI per 1000 catheter days
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Outcomes
Cost
• Child : ~ $ 2,500 - 5,000 per month
vs hospital fee $1,800 per month
• Hospital : $ 2,300 per day, or
$69,000 per month
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Conclusion
Home PN programme :
• A safe therapy
• A win-win strategy for both families and health care system
• Commitment of parents is the key to success
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Acknowledgement
Heartfelt thanks to the continual support from
• Advanced Nurtritional Support Team
• Clinical teams of P&AM
• Paediatric Surgical team
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