CEN Education Day Parent and carer questionnaire on tube feeding Dr Marit Boot
The NHS board areas of the respondents Ayrshire and Lanarkshire Arran Borders Lothian Dumfries & Orkney Galloway Fife Tayside Forth Valley Not specified Greater Glasgow and Clyde
Who was the person who first identified problems with your child's oral feeding? Parents/carers Paediatrician GI clinician Speech and language therapist Neonatologist Neurologist Midwife Dietician Community children's nurse 0% 5% 10% 15% 20% 25% 30% 35% 40% 45%
Who was the first person to discuss changing from oral feeding to tube feeding? Paediatrician GI clinician Speech and language therapist Neurologist School nurse Nurse specialist Dietician Community children's nurse GP Tube feeding from birth 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%
Did they explain the risk in continuing oral feeding in a way that was clear and helpful for you? Clear and helpful 76% Not clear 7% OK 17%
Did you find it difficult to come to terms with your child changing from oral feeding to tube feeding? A bit difficult 44% Not difficult 17% Very difficult 39%
What were the two most difficult parts of the change to tube feeding? No oral food experiences for my child How it felt not to be able to feed my child orally More hospital visits Learning the techniques involved Complications with feeding tubes Change to family life and family meals Organising supply of feeds Reaction of others to nasogastric tube No help local health service to re-insert tube Never got to experience normal feeding routine 0% 5% 10% 15% 20% 25% 30%
Did healthcare professionals talk to you about the emotional issues related to your child changing to tube feeding? No, emotional issues were not 73% mentioned Some emotional issues were discussed Yes, we received a lot of support related to the 7% emotional issues 20%
What could be done to improve the change to tube feeding? Acknowledgment that change to tube feeding may be upsetting A leaflet on the technical details A leaflet on the emotional issues More time to discuss and ask questions about the decision More emotional support to discuss effects on the whole family More emotional support when discussing change in feeding More emotional support when the decision has been made Parent/family support group to discuss change to tube feeding Improved access to dieticians More information about receiving tube feeding supplies Other 0% 2% 4% 6% 8% 10% 12% 14% 16% 18%
Who would be the most appropriate person to support you with the emotional issues in changing from oral to tube feeding? Nurse specialist Community children's nurse Dietician GI clinician Speech and language therapist Psychologist Nutrition nurse Paediatrician GP Other parents/carers 0% 5% 10% 15% 20% 25%
http://www.cen.scot.nhs.uk/
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