CEN Education Day
Parent and carer questionnaire on tube feeding
Dr Marit Boot
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
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?
Not difficult 17%
Very difficult 39%
A bit difficult 44%
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?
73%
7%
20%
No, emotional
issues were not
mentioned
Some emotional
issues were
discussed
Yes, we received
a lot of support
related to the
emotional issues
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/