Main Findings and Reports

The main findings of the questionnaires and interviews with parents, carers and professionals are:

  • The emotional impact of changing from oral feeding to tube feeding for families with a child with exceptional healthcare needs can be far-reaching
  • Generally the standard of technical training provided by practitioners in the use of tube feeding is of a high standard. However, the emotional impact is largely neglected by practitioners
  • Practitioners are conscious of the emotional impact but do not always demonstrate that awareness with parents. If a parent presents emotionally then that will be discussed but some practitioners reported they would not raise it directly as an issue themselves
  • Acknowledgement that the change to tube feeding may be upsetting was identified by parents across Scotland as the most important improvement that needs to be made
  • Nurse Specialist nd Community Children's Nurse were identified by parents as the most appropriate persons to provide support on the emotional issues related to tube feeding
Report 'How does it feel' by Claire Edwards .
Report Parents and Carers questionnaire on tube feeding by Dr Marit Boot and Dr Patricia Jackson

What do you think?

We asked parents and carers of children with multiple impairments and on tube feeding across Scotland about their experiences. What did most parents and carers say?

1. What was the most difficult part of the change from oral feeding to tube feeding?

Learning the techniques involved
More hospital visits for my child
No oral food experiences for my child

2. What could be done to improve the change to tube feeding?

More time to discuss and ask questions about the decision to move from oral feeding to tube feeding
Acknowledgement by those around that the change to tube feeding may be upsetting
A leaflet on the emotional issues related to tube feeding

3. Did healthcare professionals talk to you about the emotional issues related to the change to tube feeding?

No, emotional issues were not mentioned
Some emotional issues were discussed
Yes, we received a lot of support related to the emotional issues

4. Who would be the most appropriate person to support you with the emotional issues in changing to tube feeding?

Nurse
Psychologist
Dietician

Return to How Does it Feel? Acknowledging the Emotional Impact of Tube Feeding.