Transcript Families' Perceptions & Experiences Of Neonatal Care
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
• 12 Network Units
Level 3 Units Level 2 Unit Level 1 Unit
Large Urban Conglomerate NNU and Small Rural Area SCBU Yorkshire Neonatal Network Hospitals
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
Why the Study?
• 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
The evidence what does it say?
•
Limited consultation & participation across Neonatal Networks despite the benefits- BLISS UK National Parental Involvement Study-2007
•
Benefits improved family integration, indicators of or targeting of improvements in care quality Knowledge generation, effective resource and service delivery, 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
• Phase 1 • Questionnaire • Within NNU experience • Completed
Design ….
• • • 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
Recruited 286
Responses by NNU/SCBU
parents out of possible denominator 395 response 72% Hospital NNU/SCBU
Airedale DGH Bradford RI Dewsbury DGH Halifax DGH Huddersfield RI Hull RI Harrogate DGH Leeds LGI Scarborough DGH Leeds SJUH Pontefract DGH York DGH All unit total
Number of parents
27 66 19 32 19 49 24 47 13 35 21 43
Number of responses
14 39 17 21 12 30 20 43 10 26 17 37
% Response rate
51 59 89 65 63 61 83 91 76 74 80 86
Cumulative % spread response rate
4.9
13.6
5.9
7.3
4.2
10.5
7.0
15.0
3.5
9.1
5.9
12.9
395 286 72 100.0
34% 4%
POPULATION DATA
parents age
62% 18-30 years <18 years >30 years 300 250 200 150 100 50 0 240
Ethnic Origins
28 1
Ethnicity
6 2 38 1 singleton twin quads White Asian Black Other 247
POPULATION DATA
Ethnic origin 300 250 200 150 100 50 0 240 28 6 1 Ethnicity 2 White Asian Black Other
Population data
40.00
35.00
30.00
25.00
0.00
1.00
2.00
3.00
4.00
5.00
6.00
7.00
birth weight 0 1 2 3 4 5 6 7 kg Birth weight Length of Stay
90 80 70 60
parents
50 40 30 20 10 0 < 1 week 1 week 2-3 weeks
weeks
4-8 weeks >8 weeks
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
Communication Communication & Visiting 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
20.1% parents opportunity to visit NNU pre-delivery 86% parents felt “welcome” on 1 st visit N=181 versus N=93 concerned to be at cot side during ward rounds N=54 difficulty in visiting
Results
Quality of Care
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
Decision Making & Participation
N=236 Parents personalised care N=245 versus N=28 Engaged in decision making
Parental Support
Results
Parental Education & Information
19.9% Parents more support 88% Parents valued “talking” to staff
Levels of stress fluctuated over periods of time on NNU
N= 24 Parents no education whilst on NNU 1/3 of these parents were from the Ethnic minority population N=60 Parents more “information options” Leaflet or “one pager”
Results
Preparation for Home
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 home 20.6% Parents unable to identify post discharge support 45 40 35 30 25 20 15 10 5 0 1
Preparation fo Home
2 3
Periods of time
4 5 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 Practical Parenting Issues Adaptation & Confidence in Coping Themes of Concern Highlighted by Parents
-
Feeding, breastfeeding feeding, weight gain and tiny
-
Temperature and infection
-
Giving medication
-
Parenting oxygen dependent baby
-
Baby born early, development, long term problems
-
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
20%
Service Improvements
Communication Information 7% 12% 1% 15% Facilties and Environment Visitingparking access Psycho-Social 20% Feeding 13% 12% Transport Other
Service Improvements
Communication
-
Communication of deterioration
-
Improve medical communication
-
“Stern- staff” in their communication
-
Inconsistency in communication with care
-
Not understand 2 nd nurses language drs and
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
Visiting, Parking, Access Feeding issues
-
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
-
More of partnership and debate about breastfeeding cup and bottle feeding
-
Breast feeding support and mothers food/ nutrition on the unit
Positive feed back
“ 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
“Yes they were brilliant… anything we needed they did.. Strangely they feel like family!!”.
Parent No 271 “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 Groups
163
Focus Group Discussions in Future
2 120 yes no telephone
• 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
Thank You
GOOD BYE AMERICA 2007……….