Exploring Parental Involvement in Neonatal
Networks
Andrew Gibson, Loraine Blaxter and Gillian Lewando Hundt,
School of Health and Social Studies, Institute of Health, University of
Warwick
BACKGROUND
After the Department of Health
review of neonatal services in 2003,
managed clinical networks were
developed across England. It is a
requirement that parents are
consulted about developments or
changes in how services are run.
However, neonatal networks are at
very different stages with regard to
parental involvement.
“I have to admit that I was terrified walking
in that room today. I don’t know why; it
wasn’t as if they were all going to quiz me
or anything.” (Parent board member on
her first meeting)
 The identification of problems that
would otherwise be missed, e.g.
improving support for breastfeeding for
mothers of premature babies
Models of parental involvement
•as consultants on service improvement
•as a source of information about service quality
•as representatives of other parents
METHODS
National repeated survey of all
neonatal networks in England
4 network case studies consisting
of:
•Interviews/discussions with key
professionals
•observation of meetings and review
of minutes
•Interviews/discussions with involved
service users
FINDINGS
Development of an exit survey to
monitor the experiences of families on
neonatal units. This has been used as a
tool to improve services
 The development of information
leaflets designed to explain the process
of unit transfers and therefore reduce
the stress experienced by parents
AIMS
•Explore the development of parental
involvement and roles within
neonatal networks locally and
nationally
•Identify strategies for recruiting,
supporting and training parents to be
effective participants
Examples of parent led
innovations
Mechanisms of involvement
Working as:
•members of the board
•participating in network sub-groups
•holding consultation/support meetings based around
local units
“Between this (setting up a parents’
group) and the network it is taking up a
lot of time and effort. It is hard fitting it
round home life, and I don’t want to
spread myself too thinly.” (Parent Board
Member)
The development of a video charting
the experience of parents on a neonatal
unit for use with both parents and
clinicians.
CONCLUSIONS
The research has uncovered concerns
from parents and professionals that
involving parents in strategic decision
making may be ‘tokenistic’ and
ineffective. However, the research has
also found evidence that where parental
involvement is well planned and
supported parents can make a valuable
contribution to the development of
neonatal services
ACKNOWLEDGEMENTS
This research was funded by
BLISS, West Midlands Specialist
Services Agency and Grace’s Fund
Survey
•Wide variation nationally in level
and type of parental involvement
from no representation to relatively
well developed mechanisms for
involvement
•Lack of diversity in parental board
members, i.e. under representation
of fathers, ethnic minorities and
people from lower socio-economic
groups
• Where parents are involved the
average number of parents on a
board is 2. The average neonatal
board has 20-29 members
Case Studies
•Many board members are very supportive of
parental involvement
•Some board members feel that having parents at
board meetings might not be the best way to involve
parents or may be tokenistic
•There are concerns about parents with an “axe to
grind”
•Concern that parents will represent themselves
rather than the broader view of parents: “wanting a
level 3 neonatal unit on their doorstep”.
•Relatively few boards pay parents for attendance at
meetings
CONTACT DETAILS
Dr Andrew Gibson
Research Fellow
Institute of Health
School of Health and Social Studies,
University of Warwick
Coventry
CV4 7AL
E-mail:
Andrew.J.Gibson@warwick.ac.uk
Tel: 07941 344653