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The NHS board areas of the respondents
Ayrshire and Arran Borders Dumfries & Galloway Fife Forth Valley Greater Glasgow and Clyde Lanarkshire Lothian Orkney Tayside Not specified
CEN Education Day Parent and carer questionnaire on tube feeding Dr - - PowerPoint PPT Presentation
CEN Education Day Parent and carer questionnaire on tube feeding Dr - - PowerPoint PPT Presentation
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
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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%
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Who was the first person to discuss changing from oral feeding to tube feeding?
Tube feeding from birth GP Community children's nurse Dietician Nurse specialist School nurse Neurologist Speech and language therapist GI clinician Paediatrician
0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50%
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Did they explain the risk in continuing oral feeding in a way that was clear and helpful for you?
Clear and helpful 76% OK 17% Not clear 7%
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Did you find it difficult to come to terms with your child changing from oral feeding to tube feeding?
Very difficult 39% A bit difficult 44% Not difficult 17%
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What were the two most difficult parts of the change to tube feeding?
Never got to experience normal feeding routine No help local health service to re-insert tube Reaction of others to nasogastric tube Organising supply of feeds Change to family life and family meals Complications with feeding tubes Learning the techniques involved More hospital visits How it felt not to be able to feed my child orally No oral food experiences for my child
0% 5% 10% 15% 20% 25% 30%
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Did healthcare professionals talk to you about the emotional issues related to your child changing to tube feeding?
73% 20% 7% No, emotional issues were not mentioned Some emotional issues were discussed Yes, we received a lot of support related to the emotional issues
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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%
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Who would be the most appropriate person to support you with the emotional issues in changing from oral to tube feeding?
Other parents/carers GP Paediatrician Nutrition nurse Psychologist Speech and language therapist GI clinician Dietician Community children's nurse Nurse specialist
0% 5% 10% 15% 20% 25%
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