Empowerment Through Participation: Children With Intestinal Failure

HA Convention 2015 May

Tomcy Leung

Nurse Consultant (PICU)

Department of P&AM

Queen Mary Hospital

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.

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%

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

Outcomes

Catheter Associated Blood Stream Infection

(CA-BSI)

19 0

1

2

3

4

5

6

7

8

9

10

2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014

BSI per 1000 catheter days

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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