1. Families' Perceptions & Experiences Of Neonatal Care Delivery Within The Yorkshire Neonatal Network –What are they? Gwynn Bissell- Yorkshire Neonatal Network Regional Neonatal Nurse Educator

2. What and where is the Network Level 1 Unit Level 2 Unit 12 Network Units Level 3 Units

3. Yorkshire Neonatal Network Hospitals Large Urban Conglomerate NNU and Small Rural Area SCBU London

4. 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

5. 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?

6. 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)

7. 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)

8. 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

9. 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

10. 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

11. 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

12. Responses by NNU/SCBU Hospital NNU/SCBU Number of parents Number of responses% Response rate Cumulative % spread response rate Airedale DGH 2714514.9 Bradford RI 66395913.6 Dewsbury DGH 1917895.9 Halifax DGH 3221657.3 Huddersfield RI 1912634.2 Hull RI 49306110.5 Harrogate DGH 2420837.0 Leeds LGI 47439115.0 Scarborough DGH 1310763.5 Leeds SJUH 3526749.1 Pontefract DGH 2117805.9 York DGH 43378612.9 All unit total 39528672100.0 Recruited 286 parents out of possible denominator 395 response 72%

13. POPULATION DATA

15. Population data 0 1 2 3 4 5 6 7 kg Birth weight

16. 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

17. 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 CommunicationCommunication & Visiting 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

18. 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

19. Results 19.9% Parents more support 88% 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 population N=60 Parents more “information options” Leaflet or “one pager”

20. Results 15.5% Parents felt under prepared for home Experienced by parents within 7:12 units 8 weeks 31 and 36 weeks gestations 25% Parents expressed concerns about going home 20.6% Parents unable to identify post discharge support Preparation for Home

21. 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

22. 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

23. 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

25. 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 2 nd language drs and nurses

26. 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

27. “ 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”

28. Focus Groups

29. 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

30. 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

31. Thank You GOOD BYE AMERICA 2007………. Gwynn.Bissell@lth.nhs.uk