Practical and emotional issues of tube feeding:
Research into the Parent Perspective
Laurie Eyles
Specialist Dietitian
Project Background
Increasing patient numbers and complexity
+
Increasing pressure on limited resources
+
Inequity between adult and paediatric services
+
Risk that patients on HETF could be lost to follow up
Need to investigate current position
Project Aim and Objectives
Identification
Identificationofofall
all
patients
patients
Definition of current
model of care
To define the current service provision for
children and young people at home on tube
feeding and identify any service
improvements necessary
Supplies and
equipment processes
Audit of best practice
statements
Investigation of
patient/parent
experience
Patient and parent experience: postal questionnaire
• 163 questionnaires sent, 58% response rate
• 95% of respondents were parents of child/young person on HETF
• 8 questions asked to ascertain:
– Adequacy of training on HETF
– Optimal modes of delivering HETF training
– Level of professional support for HETF
– Location of follow up
– Key areas for improvement
Patient and Parent Experience
Q. What level of information about HETF were you given to begin with?
5%
About right
Not enough
95%
Patient and Parent Experience
Q. What would be the best way for you to get information on HETF?
Other
1
Mode of information
Other children/parents
18
Video/DVD
23
Website
26
Written Booklet
49
In Person
84
0
10
20
30
40
50
Number of respondents
60
70
80
90
Patient and Parent Experience
Q. Who would you contact with any tube feeding problems?
Other
3
Health Professional
GP
10
Company nurse
35
Hospital nurse/doctor
36
Dietitian
36
Community Nurse
73
0
10
20
30
40
50
Number of respondents
60
70
80
Patient and Parent Experience
Q. What level of health professional support do you get for tube feeding?
13%
About right
Not enough
87%
Patient and Parent Experience
Q. How would you like to be reviewed?
Other
1
Location of review
School
5
Local hospital
13
email
15
GP Practice
17
Telephone
37
Home visit
46
Specialist hospital
47
0
5
10
15
20
25
30
Number of respondents
35
40
45
50
Patient and Parent Experience
More
time to go
over
things
Easier access to
dietitians
One
supplier for
all products
Better
communication
with parents
More
dietetic
input
What is the one thing the NHS could
do to support you with home tube
feeding?
Support group for
the whole family
Nurseries and schools
need more information
on why tube feeding is
needed
More support
for oral feeding
programmes
Regular
monitoring
Have someone
available to visit at
short notice to avoid
hospital visit
Patient and Parent Experience
•
Questionnaire provided excellent basis for generalisation of the
population but we wanted to know more!
•
Issues further explored through “parent stories”
•
Seven parent stories, one to one interviews
•
Recorded and transcribed
•
Themed together with questionnaire
Parent Stories
Theme 1: Supplies and equipment
“It would be helpful for parents to have one supplier or contract for supplies. When
my child was first tube fed, everything came from Homeward, now supplies
are limited and you have to contact Homeward for some and Vygon for others
and CCNs for others etc. It’s a bit of a hassle. It would be easier if there
were one point of contact”
“Make deliveries easier. With lots of different OPD appointments it’s not possible to
stay in all day for a delivery”
“We never know who to contact to sort out supplies, keep getting passed on to a
different person for different things and it takes ages”
Parent Stories
Theme 2: Communication
“I was given mixed messages, consultant told me to stop feeding her myself and
use the nasogastric tube only….then 2 hours later a nurse told me that was
wrong and I should continue to breast feed her…..I didn’t know what to do for
best”
“We were told confusing messages…one doctor told us to stop our son’s feed but
our GP gave us different advice….what was the right thing?”
“We want people to realise that we get very stressed keeping our children alive
(thankfully) in this manner and we need to be understood and supported well.
It’s very scary at first!”
“When everything is going well, you don’t hear from anyone”
Parent Stories
Theme 3: Decision Making
“Nasogastric feeding was discussed, but we weren’t given the choice….it was
distressing but we understood that he needed it”
“It was shock to hear he needed a PEG, we didn’t understand it. We wanted
someone to sit down with us with pictures, complications…..by just reading
about it we were unable to understand…it would help if it was more practical,
less theory”
“He was originally on a specialist feed which was going well, then when he was
sent home it was changed…..no-one told me why. I tried to tell the nurses
that he wouldn’t tolerate this new feed but no-one would listen. It wasn’t until
he had lost lots of weight that I could get someone to listen to me”
The Way Forward
Recommendations using parent experience:
1.
Have a designated key professional to contact for all tube feeding
issues, who:
•
•
•
Is easily contactable
Can deal immediately with problems or liaise on families behalf
Has specialist knowledge of the needs of a tube fed child
2.
Review entire supplies and equipment procedure and make it
simple.
3.
Regular community support at a venue suitable for the family
4.
Involve families in each stage of the decision making process
5.
Recognise the knowledge and expertise that families can offer.
One final thought….
“I would like all professionals….doctors, nurses,
dietitians, speech and language therapists, health
visitors to understand…to wonder what to do when
your child vomits, when the tube falls out and you
have to run to hospital, be woken up in the middle of
the night and feel the grief and the pain and the
emotion and the suffering that the parents go
through. Then one day they will listen to the parents,
not all parents are wrong – take the parent’s
experience”
Parent
Questions?
Contact:
laurie.eyles@nhslothian.scot.nhs.uk