families' perceptions & experiences of neonatal care delivery within the yorkshire neonatal...
TRANSCRIPT
Families' Perceptions & Experiences Of Neonatal Care Delivery Within The Yorkshire Neonatal Network –What
are they?
Gwynn Bissell- Yorkshire Neonatal Network Regional Neonatal Nurse Educator
What and where is the Network
Level 1 Unit
Level 2 Unit
• 12 Network UnitsLevel 3 Units
Yorkshire Neonatal NetworkHospitals
Large Urban Conglomerate NNUand
Small Rural Area SCBU
London
Background to commissioning study
• Drivers – Inception of YNN • Embraced supply & demand issues• Maximised limited resource availability• Partnership and collective protocols• Limited consultation and participation with parents• National Patient & Parent Involvement (PPI) DH
• Engaging with service users provide first indicators of parental perceptions of care & mark progress made
by YNN to date
• Paucity in specific or exploratory literature of neonatal service users in the UK’s neonatal networks
• Quality of care measured by using family’s judgement of what may be deemed satisfactory or unsatisfactory neonatal care- used as health outcomes
• Defining quality of care & suggesting what is of significance to families offers a more authentic and improved service may prevail
Why the Study?
The evidence what does it say?
• Limited consultation & participation across Neonatal Networks despite the benefits- BLISS UK National Parental Involvement Study-2007
• Benefits- Knowledge generation, effective resource and service delivery, improved family integration, indicators of or targeting of improvements in care quality- Ygge and Arnetz (2001)
• Perceptions-Consumer and service provider views not translate the same
Conner and Nelson (1999)-
• Family visiting- Reid et al (1995) • Neonatal transfers- Hegedus and Madden (1994) • Consumer perspectives of care- significance of fostering greater
partnerships and long term relationships with NICU parents- Fowlie and McHaffie (2004),
Bloomfield et al (2005), McAllister and Dionne (2006)
The literature to guide design of project..
• Studies- Concept satisfaction consistently multi-dimensional and measured
along a period of time
• Methods- Interviews questionnaires and focus groups service user satisfaction-
experience
• Tool- Predominantly questionnaire developed for specific data collection
encompass host of aspects of care
Design- Individual study aims and purposes-satisfaction, improving FCC or
developing potentially better practices
• Target- Independent distribution, interviewer administered, postal/ telephone
survey NIPS-Mitchell-Dicenso et al (1996), Parent Feedback- Blacklington et al (1995),
Picker Institute Inpatient NICU- Picker (2005)
What did the Network want to discover?
• Understand the service users reality of care within the YNN
• Identify deficiencies or disparity in care and highlight practice of Excellence in care
• Able to offer potential solutions to improve care within the Network’s NNU’s-reducing dissatisfaction amongst consumer population
• Long term to develop strategies with parents to subsequently improve care for families in the future
Ethical approval
• No significant risk involved
• Approval of local research and development and COREC multi-centre research in 12 NNU/SCBU
• Questionnaires coded prior to analysis
Design ….
• Phase 1• Questionnaire• Within NNU experience• Completed
• Phase 2• Focus group after discharge home• Not commenced• Resources, managerial change,
Network refocus• BUT • Baseline quality of care-indicator
of parental readiness to be involved
• Choose the method of future parental involvement to become a service user- parent led Network- options tested focus/support groups and parents reporting to Strategy Board
Method
• Descriptive Quantitative Design approach
• Questionnaire tool developed from reviewed literature, “service-experienced” and “lay person’s” understanding
• Piloted from Support Groups and recent families with NNU graduates
• Encompassed 9 domains:- Transport, Communication and Visiting, Care, Decision-Making/Participation, Support, Education and Information, Preparation for Discharge Home, Facilities, and Yorkshire Neonatal Network Experience.
• Data statistically analysed via SPSS version 13 software, offering descriptive statistics. Limited content analysis required for open ended questions
Responses by NNU/SCBU
HospitalNNU/SCBU
Number of parents
Number of responses % Response rate
Cumulative % spread response rate
Airedale DGH 27 14 51 4.9
Bradford RI 66 39 59 13.6
Dewsbury DGH 19 17 89 5.9
Halifax DGH 32 21 65 7.3
Huddersfield RI 19 12 63 4.2
Hull RI 49 30 61 10.5
Harrogate DGH24 20 83 7.0
Leeds LGI 47 43 91 15.0
Scarborough DGH 13 10 76 3.5
Leeds SJUH 35 26 74 9.1
Pontefract DGH 21 17 80 5.9
York DGH 43 37 86 12.9
All unit total
395 286 72 100.0
Recruited 286 parents out of possible denominator 395 response 72%
POPULATION DATA
Ethnic Origins
240
286 2
0
50
100
150
200
250
300
1
Ethnicity
Parent Numbers
White
Asian
Black
Other
247
38 1
singleton
twin
quads
parents age
62%4%
34%
18-30 years
<18 years
>30 years
POPULATION DATA
COMPLETED BY
203
13
65
4
0
50
100
150
200
250
1
PARENT MEMBER
Mother
Father
Joint
Other
Ethnic origin
240
286 2
0
50
100
150
200
250
300
1
Ethnicity
NUMBERS
White
Asian
Black
Other
Population data
0
10
20
30
40
50
60
70
80
90
parents
< 1week
1 week 2-3weeks
4-8weeks
>8weeks
weeks
Length of Stay
0 1 2 3 4 5 6 7 kg Birth weight
Results
Transport
• 20.3% babies delivered in hospitals other than booked
• 23.1% babies required transport service
• N=6 transfer out of YNN• N=3 Not know why
transferred
• Parents perceived that they wanted to know when and why their baby was being transferred to other units
• Parents reported that an early transfer back to their home unit was preferable for them
• Mother’s transfer delays caused separation and distress for parents
Results
Parents perceived that the opportunity of pre-delivery unit visit was of value
Parents perceived that the first visit “welcome” to the SCBU or NNU was very importance to all family members
Parents reported a preference for greater flexibility of visiting particularly for grandparents, children and relatives travelling large distances
Parents perceived parking and travel incurred costs whilst on the units as being problematic and a financial drain
Communication Communication & Visiting
20.1% parents opportunity to visit NNU
pre-delivery86% parents felt
“welcome” on 1st visitN=181 versus N=93 concerned to be at cot
side during ward roundsN=54 difficulty in visiting
Results
N=268 Parents perceived that they and their baby received “good care”
N= 0 Parents perceived staff never misunderstood baby needs
N=46 Parents needs “never” to ”sometimes” met
Quality of Care Decision Making & Participation
N=236 Parents personalised care
N=245 versus N=28 Engaged in decision
making
Results
19.9% Parents more support88% Parents valued “talking” to staff
Levels of stress fluctuated over
periods of time on NNU
Parental Support Parental Education &
Information
N= 24 Parents no education whilst on NNU
1/3 of these parents were from the Ethnic minority
populationN=60 Parents more
“information options”Leaflet or “one pager”
Results
15.5% Parents felt under prepared for home
Experienced by parents within 7:12 units
<1 week to >8 weeks
31 and 36 weeks gestations 25% Parents expressed concerns
about going home20.6% Parents unable to identify post
discharge support
Preparation for Home
Preparation fo Home
05
1015202530354045
1 2 3 4 5
Periods of time
Parental numbers
not
little
mod
very
Results
Neonatal Unit Facilties
N= 266 Parents satisfied with facilties on NNU
76.2% have overnight facility
1/ 2 parents in the units across YNN stated breastfeeding- expressing facilities to improve
N=248 Parents had some “alone time” and privacy
Category of Concern
Themes of Concern Highlighted by Parents
Practical Parenting Issues
-Feeding, breastfeeding feeding, weight gain and tiny-Temperature and infection-Giving medication-Parenting oxygen dependent baby -Baby born early, development, long term problems
Adaptation & Confidence in Coping
-Baby gets ill again & coping-Not spotting further problems & coping-Monitored environment to self reliant experience-Coping at home & confidence
Service Improvements
• The areas of service improvement identified by the parents initially comprised of 37 factors and developed into the 8 main categories of :-– Communication– Information– Facilities and Environment– Visiting, Parking and Access– Feeding Issues– Psycho-Social Issues– Transport Issues– Other
Service Improvements
15%
20%
12%13%
20%
7%12% 1%
Communication
Information
Facilties andEnvironment
Visitingparking access
Psycho-Social
Feeding
Transport
Other
Service Improvements
Visiting, Parking, Access
-Improved access to delivery suite and NNU/SCBU
-More visitors allowed and better flexibility with visiting and communication of other family members (grandparents children)
-Parking and costs whilst visiting in units
Psycho-Social Issues
-Increase staff time with babies and families
-More “alone time”-Not leave baby no separation
-More dads’ support and time spent with them
-More children support and help within NICU
Feeding issues -More of partnership and debate about breastfeeding cup and bottle feeding
-Breast feeding support and mothers food/ nutrition on the unit
Communication -Communication of deterioration
-Improve medical communication
-“Stern- staff” in their communication
-Inconsistency in communication with care
-Not understand 2nd language drs and nurses
Positive feed back
“Yes they were brilliant… anything we needed they did.. Strangely they
feel like family!!”.Parent No 271
“ The experience that I had at the unit couldn’t have been
more comforting or better-the staff at.. are the most sensitive and considerate ..” Parent 232
“We feel that the staff have done everything possible to make us
feel welcome and kept us informed every step
of the way”.Parent No 122
“ Nothing as the quality of care was very good”. Parent
No64
“ The Neonatal Units of the future must offer supportive and good quality care; by making families welcome a more positive experience may be created. It is also
paramount that families are kept informed, and by the health professional remaining considerate to the
families’ needs they will be helped to become a whole family unit”
Focus Group Discussions in Future
120
163
2
yes
no
telephone
Focus Groups
• How do we keep the momentum and monitor these parental needs or developments and yet keep a breast of a majority rather than a minority of parents
• Critical to choose the method of future parental involvement to ensure service user- parent led Network
Action plan
• Provide greater understanding of the families’ needs
• Improve channels of communication and greater engagement with parents in decision making and offering of informed choice
• Increased flexibility of visiting particularly with grandparents, children and relatives who travel long distances
• Earlier transfers back to home units where possible
• More flexible education and information opportunities delivered at critical times by experienced health professionals
• Service user involvement through focus groups and questionnaires to map long-term perceptions and involvement in service modifications
