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Transitioning Children from Tube Feeding

Transitioning Children from Tube Feeding . The Current State of Affairs in New Zealand Emma Necus, Bianca Gordon, T urid Peters SLTs. Thanks to…. Turid Peters, Speech-Language Therapist, Central Otago Healthcare Limited Emily Jones, Speech-Language Therapist, Massey University

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Transitioning Children from Tube Feeding

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  1. Transitioning Children from Tube Feeding The Current State of Affairs in New Zealand Emma Necus, Bianca Gordon, Turid Peters SLTs

  2. Thanks to… • Turid Peters, Speech-Language Therapist, Central Otago Healthcare Limited • Emily Jones, Speech-Language Therapist, Massey University • Dr Tim Jelleyman, Paediatrician, Waitemata DHB

  3. Who are we talking about? • 630 children in New Zealand on gastrostomy tube >3months (Jelleyman, 2014) • Tube placed for a variety of reasons • Safety of swallow/ medical/ nutritional • Cohort of children who no longer require tube for original reason. • “medically stable, safe swallow and developmentally ready to transition to oral feeding.” • “Tube dependency” • 130 children in the process of being weaned or deemed appropriate for weaning to oral eating and drinking (Jelleyman, 2014)

  4. What is the issue? • Different services across New Zealand designed to meet this need - dependent on resourcing and geographical area • A range of approaches across the districts with a variety of models (Jelleyman 2014) • Varying opinions on success of these services • Current media/political interest • Are these services evidence based and cost effective? • Cost of tube dependency both in services and consumables • Emotional cost to families

  5. “We had always considered his g-tube a blessing which allowed M to become strong and healthy. Finding a program which helped M eat on his own was another gift which brings our family closer” Parent quote http://www.feedingtubeawareness.org/former-tubies.html

  6. a note of caution.. “It is important to note that all these children were medically cleared to eat. Their diagnosis was understood and there were no medical or physical reasons for them not to eat at the time they began to wean from their feeding tube” http://www.feedingtubeawareness.org/former-tubies.html

  7. Service providers in NZ: • Child Development Services • Special Education/ MOE • Private SLTS • ACC providers • Privately funded programs (e.g. GRAZ etc) • Paediatrician Team (DT/Paed or SLT/DT/Paed or SLT/DT /Paed/Psych) Current Solutions

  8. Adult directed External motivation Volume driven – hunger provocation Child-directed Intrinsic motivation Relationship driven Applied Behaviour Analysis Operant conditioning and flooding e.g. escape prevention, access to parent Systematic Desensitisation Positive reinforcement Natural reinforcers Family as role models Natural environmental manipulations in the child’s home SOS Approach to Feeding Hospital based day treatments Hospital based inpatient programmes “Self-help” techniques Messy food play Dunn-Klein “Get Permission” Approach

  9. What does the evidence say? • SOS • Hunger provocation • Behavioural Approaches • Frequency of treatment • GRAZ program

  10. Future Directions… • What does New Zealand need? • A range of approaches • What are the numbers of children needing each type of service? • Where do we need these programs? Local vs. National? • What will it cost?

  11. Future Directions… • A cohesive approach across and within DHBs. • A national co-ordinator • Links to teams and professionals locally and nationally • Cultural factors and their influence • What is the natural history of tube feeding against which to test the efficacy of intervention models? (Jelleyman 2014) • What practises might reduce the need for or lead to prolongation of tubes (Jelleyman 2014)

  12. Future Directions…some ideas • A national evidence-based guideline for placement and weaning • A national register • A virtual centre of excellence. A “hub” for the dissemination of information. • A Multi-disciplinary SIG • An outreach service as a source of education and information • Telemedicine approach • A range of best-practice services to meet the range of needs, clear documentation and evidence • A working party to begin this process

  13. Summary • Tube weaning is a ballooning issue • Current services are available with variable success and resources • We advocate for a national overview, and clear guidelines shared through a multidisciplinary professional network • A national register and more research into prevalence, treatment approaches and outcomes

  14. Contacts • Emma Necus emmanslt@gmail.com • Bianca Gordon b.gordon@auckland.ac.nz • Turid Peters turidpeters@gmail.com

  15. Jelleyman, T. (2014) Short Report: Long-Term Enteral Nutrition Survey New Zealand Child Health Services. Paediatric Society New Zealand

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