practical and emotional issues of tube feeding: research into the parent perspective laurie eyles
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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 + - PowerPoint PPT PresentationTRANSCRIPT
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
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
Identification of all patients
Audit of best practice statements
Definition of current model of care
Identification of all patients
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?
95%
5%
About right
Not enough
Patient and Parent Experience
Q. What would be the best way for you to get information on HETF?
84
49
26
23
18
1
0 10 20 30 40 50 60 70 80 90
In Person
Written Booklet
Website
Video/DVD
Other children/parents
Other
Mo
de
of
info
rmat
ion
Number of respondents
Patient and Parent Experience
Q. Who would you contact with any tube feeding problems?
73
36
36
35
10
3
0 10 20 30 40 50 60 70 80
Community Nurse
Dietitian
Hospital nurse/doctor
Company nurse
GP
Other
Hea
lth
Pro
fess
ion
al
Number of respondents
Patient and Parent Experience
Q. What level of health professional support do you get for tube feeding?
87%
13%
About right
Not enough
Patient and Parent Experience
Q. How would you like to be reviewed?
47
46
37
17
15
13
5
1
0 5 10 15 20 25 30 35 40 45 50
Specialist hospital
Home visit
Telephone
GP Practice
Local hospital
School
Other
Lo
cati
on
of
revi
ew
Number of respondents
Patient and Parent Experience
What is the one thing the NHS could do to support you with home tube
feeding?
More dietetic input
Easier access to dietitians
Better communication
with parents
More time to go
over things
One supplier for all products
More support for oral feeding programmes
Nurseries and schools need more information on why tube feeding is
needed
Have someone available to visit at short notice to avoid hospital visit
Support group for the whole family Regular
monitoring
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
