Parents` experiences of neonatal care

Parents’ experiences of neonatal care

A REPORT ON THE FINDINGS FROM A

NATIONAL SURVEY

Dr Esther Howell & Chris Graham

Picker Institute Europe

November 2011

Picker Institute Europe

Picker Institute Europe is a not-for-profit organisation that makes patients’ views count in healthcare. We: build and use evidence to champion the best possible patient-centred care work with patients, professionals and policy makers to strive continuously for the highest standards of patient experience.

© Picker Institute Europe 2011

Published by and available from:

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CONTENTS

Acknowledgments

Executive summary

Introduction

Background

Why the survey was carried out

How the survey was carried out

Development of the questionnaire

Summary of key findings

Positive parent experience

Key areas for improvement

Variations across units in parents’ experiences

Question domains

Variations in the experiences of parents

Admission to neonatal care

Pre-natal experience

After the birth

On admission to the unit

Staff on the neonatal unit

Relationship with staff

Information and communication

Confidence in staff

Parental involvement

Involving parents in decision-making

Involving parents in providing care

Support with feeding

Support for parents

Information provision

Emotional support

The neonatal unit environment

Transfers to another unit

Discharge from the unit

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Care and support at home

References

Appendix 1: Questionnaire development

Literature review and consultation

Focus Groups

Cognitive testing

Appendix 2: Participating neonatal units

Appendix 3: Respondent characteristics

Appendix 4: Question domains

Appendix 5: Frequency tables for all questions

Appendix 6: Results by different groups of respondents

Mean scores

Survey questions by sub groups

Acknowledgments

We are very grateful to the parents who participated in the survey, and for those families that helped in the development of the questionnaire by taking part in focus group discussions or cognitive interviews.

Thanks also to the neonatal network managers and lead nurses who worked with their units to ensure the success of the survey. NHS trust staff should be thanked for their work in checking sample lists and, in some cases, for mailing out questionnaires.

Staff at Clevermed Ltd should be acknowledged for all their help and hard work in extracting the sample lists from BadgerNet for many of the neonatal units.

The survey was championed by Bliss, the special care baby charity, and additional funding was provided by the neonatal networks participating in the survey and the Department of

Health.

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Executive summary

Introduction

The first national survey of parents’ experiences of neonatal care was carried out in 2010-

11 with 125 neonatal units, including special care baby units, local neonatal units and neonatal intensive care units (see Appendix 2 for a list of participating units). The survey was carried out by 19 neonatal networks and was championed by Bliss, the special care baby charity, and also supported by the Department of Health.

Picker Institute Europe developed and co-ordinated the survey in conjunction with Bliss and neonatal network representatives. The survey was carried out in three ‘waves’ between summer 2010 and autumn 2011. Almost 20,000 parents were sent a postal questionnaire following their baby’s discharge from hospital asking about their experiences of neonatal care. Over 9,000 parents took part in the survey. After taking into account undelivered questionnaires and those parents that were ineligible for inclusion, this is a response rate of 50%.

Key findings

Admission to neonatal care

Where admission of a baby to a neonatal unit was predicted, 41% of parents were given the chance to visit the neonatal unit and 36% said a member of staff definitely came to talk to them about what to expect after the birth.

Most parents (85%) were able to touch their baby before he/she was admitted to the unit, although only 46% were given a photograph of their baby. One in five parents (22%) said that a member of staff did not talk to them about their baby’s condition and treatment after the birth.

Following the birth, more than half of the mothers (59%) were cared for on the same ward or area as those mothers who had their baby with them; 32% said they were bothered by this. The majority of respondents – 81% - said that their partner or family member was not allowed to stay with them overnight after the birth of their baby.

On admission to the unit, 74% of parents said infection control practices were explained to them but 43% said they were not given enough information about the neonatal unit

(such as rules, procedures and facilities for parents) and 46% were not clearly told about the purpose of the machines, monitors and alarms used in the unit

Staff on the neonatal unit

Most parents (85%) said that staff referred to their baby by his/her first name, although only 56% reported that when they visited the unit all staff introduced themselves. A high percentage of respondents (86%) said they were told which nurse was responsible for their baby’s care each day they were in the unit.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 1

Parents were largely positive about the neonatal staff and their communication with them:

76% were always able to talk to staff on the unit about their worries or concerns

73% said nurses were always sensitive to their emotions and feelings

79% said that staff always kept them up to date with their baby’s condition and progress and 78% were always told about any changes in their baby’s condition or care

79% said staff always explained the purpose of any tests their baby had and, if their baby required surgery, 77% said staff always explained the operation and its outcome in a way they could understand

86% said they always had confidence and trust in the staff caring for their baby

The survey highlighted, however, that only 40% of parents said they definitely got enough written information to help them understand their baby’s condition and treatment; 27% did not get any written information. Other areas of the survey where parents reported less positive experiences include:

29% said that important information about their baby was not always passed on from one member of staff to another

44% reported that staff ‘sometimes’ or ‘often’ gave them conflicting information

Parental involvement

Parents were largely positive about their involvement in their baby’s care:

81% were definitely involved as much as they wanted to be in the day-to-day care of their baby, such as nappy changing and feeding

77% were definitely encouraged to touch, hold and comfort their baby

However, only 50% of parents said they definitely had as much ‘kangaroo care’ (skin to skin contact) with their baby as they wanted. Parents’ were also less positive about staff involving them in decision-making; only 55% said that staff always included them in discussions about their baby’s care and 37% were not always allowed to be present during a ward round when their baby was being discussed.

Around three in four parents responded positively with regard to the support provided to help them feed their baby, whether through expressing breast milk, breast feeding or feeding their baby formula milk

Support for parents

Whist in general parents were positive about the information and explanations given to them by staff with regard to their baby’s condition and treatment, the survey showed that relatively large proportions of respondents said they did not receive information about parent support groups (34%) or any help they could get with travelling expenses, parking costs or food vouchers (53%).

Although most parents (56%) said they did not need any emotional support or counselling, 25% said they were not offered this support but would have liked it.

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Transfers to another unit

Of those parents responding to the survey, 13% said their baby was transferred to a neonatal unit at a different hospital. A third of these parents (33%) said that they were cared for in a different hospital to their baby, highlighting one area where parents’ experiences could have been better. The survey also showed that:

41% of parents were not given enough warning that their baby was being transferred

38% were not given enough information about the hospital/unit where their baby was being transferred to

31% felt that staff in the new unit were not fully aware of the care their baby had previously received

Discharge from the unit

Most parents (80%) were offered accommodation overnight at the hospital before their baby came home and 75% said they definitely felt prepared for their baby’s discharge from neonatal care.

Of those parents whose baby required special equipment when they were discharged home, 78% were definitely given enough information and guidance on using the equipment at home.

The survey highlighted that parents were less positive about the information they were given on what to expect in terms of their baby’s progress and recovery; 32% said they were only given enough information ‘to some extent’ and 15% were not given any information at all.

Care and support at home

Parents were least positive about the care and support they received once their baby had been discharged from the neonatal unit. Almost one in ten parents (9%) said they would have liked some contact with neonatal staff following their baby’s discharge but did not have any. Around a quarter of parents (24%) said that their baby had a follow-up appointment at hospital but only 19% said that staff contacted them by telephone and

15% were visited by staff at home.

A relatively high proportion of parents (42%) reported that they did not get enough overall support – or only got enough support ‘to some extent’ - from health professionals after their baby arrived home. Of those parents who saw a health visitor, only 39% said that they definitely had enough information about the development of babies who had received neonatal care.

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Recommendations

1. Neonatal networks and individual neonatal units should use the results of the survey to prioritise areas for improving their parents’ experiences of neonatal care. Units can explore those areas where other units have performed better to help understand how improvements can be made and what initiatives could be introduced to improve parents’ experiences.

2. Results from the survey can be used to monitor performance at national, network and unit levels against relevant quality standards for neonatal care outlined in the

Department of Health’s Toolkit for High-Quality Neonatal Service and the NICE Quality

Standard for Specialist Neonatal Care.

3. Neonatal units should share the feedback about their services widely with key stakeholders, both within and outside their organisation. Everyone who plays a role in delivering or receiving neonatal services should ideally be aware of and make use of this parent feedback. Commitment from front-line staff is key to implementing changes on the ground, while senior managers can help ensure quality improvement remains a priority for the organisation.

4. To maintain and improve high quality care for babies and their families, a national survey of parents’ experiences of neonatal care should be conducted by all units annually, using a standardised methodology and tool. This will allow parents’ experiences across units to be compared and performance benchmarked against local and national standards over time. Changes in performance can only be identified if surveys are repeated and, repeated surveys will allow units and networks to measure the impact of quality improvement initiatives from the parents’ perspective.

5. Neonatal networks and/or units could use the same questionnaire tool and method to carry out additional surveys between national surveys to continuously monitor performance and measure the impact of any quality improvement initiatives introduced to their neonatal service.

6. To increase the response rate to future national surveys by:

Ensuring greater publicity of the survey internally and externally (e.g. posters in units advertising the survey, flyers in discharge packs given to parents, presenting survey results within the unit, press releases, and so on).

Revisions to the questionnaire tool to reduce the length of the questionnaire and remove questions shown to be less important to parents and/or of less use for units.

Checking there is no overlap with units conducting local surveys at the same time as a national survey.

Confirming all parents in the survey sample are eligible by increased checking of sample lists by NHS staff (e.g. to ensure that all babies spent at least 24 hours in the neonatal unit).

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Introduction

Background

Neonatal units specialise in the care of babies born early, with low weight, or with a medical condition that requires specialised treatment. The level of neonatal care a baby receives will vary from minimal intervention for a few minutes or hours through to considerable support over many weeks, months or even years. The demand for specialist

neonatal care has increased by 9% in the last three years (2006/07–2008/09).

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In 2001, the Department of Health recommended that neonatal services be organised into managed clinical networks, with hospitals working as teams to ensure that babies were

cared for in appropriate settings.

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Neonatal services are based upon Strategic Health

Authority populations and organised as 23 managed clinical networks across England, although several are managed together in consortia relating to specialist commissioning

groups.

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Each network

has, or is developing, its own care pathways, guidelines and clinical audit programmes. Each unit within a network should also have access to 24-hour transfer services to ensure that babies receive care in appropriate settings timed to maximise clinical outcomes

.

2

As outlined in section 3.8 of the Toolkit for high-quality neonatal services

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takes place in three types of unit:

, neonatal care

Special care units (SCUs) provide special care for their own local population.

Depending on arrangements within their neonatal network, they may also provide some high dependency services. In addition, SCUs provide a stabilisation facility for babies who need to be transferred to a neonatal intensive care unit (NICU) for intensive or high dependency care, and they also receive transfers from other network units for continuing special care.

Local neonatal units (LNUs) provide neonatal care for their own catchment population, except for the sickest babies. They provide all categories of neonatal care, but they transfer babies who require complex or longer-term intensive care to a NICU, as they are not staffed to provide longer-term intensive care. The majority of babies born at over 27 weeks of gestation will usually receive their full care, including short periods of intensive care, within their LNU. Some networks have agreed variations on this policy, due to local requirements. Some LNUs provide high dependency care and short periods of intensive care for their network population. LNUs may receive transfers from other neonatal services in the network, if these fall within their agreed work pattern.

Neonatal intensive care units (NICUs) are sited alongside specialist obstetric and feto-maternal medicine services, and provide the whole range of medical neonatal care for their local population, along with additional care for babies and their families referred from the neonatal network. Many NICUs in England are co-located with

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neonatal surgery services and other specialised services. Medical staff in a NICU should have no clinical responsibilities outside the neonatal and maternity services.

Why the survey was carried out

Assessing parents’ experiences of neonatal services is crucial for an understanding of how the quality of care can be improved. Principle 4 of the Bliss Baby Charter Standard states that “developing a culture of continuous improvement, that involves and is informed by parents, maintains high quality care for babies and their families and

encourages units to continually raise the bar in provision of family-centred care”.

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Previous research has shown parents’ experiences of neonatal care, and the extent to

which services are ‘family-centred’, can vary enormously between units.

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Whilst a number

of neonatal units and/or networks were already carrying out their own parent satisfaction surveys, participating in a national survey using a standardised tool and methodology was recognised to be valuable for benchmarking unit performance against national findings as well as with similar services in terms of the type of unit or location. Each neonatal unit has been provided with three separate reports which benchmark their performance against 1) national findings, 2) other units of the same ‘type’ (i.e. all Special

Care Baby Units, all Local Neonatal Units or all Neonatal Intensive Care Units) and 3) other units within the same neonatal network.

The importance of ensuring that neonatal care is family-centred and parent-focused has been increasingly recognised in recent years. The NHS Neonatal Taskforce, which was established in response to the National Audit Office report on the reorganisation of

neonatal care

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, agreed a set of measures to support the delivery of high quality neonatal services as outlined in the ‘Toolkit for High-Quality Neonatal Service.’

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The third principle

in the toolkit, ‘care of the baby and family experience’, sets out a number of markers of good practice which puts the physical, psychological and social needs of both the baby and their family at the centre of all care provided. The parents’ neonatal survey is an important source of data for measuring performance against this principle.

In addition, the National Institute for Health and Clinical Excellence (NICE) published a quality standard in 2010 to address the care provided for babies in need of specialist

neonatal service3. There are a number of quality measures accompanying the standard

which aim to improve the structure, process and health outcomes of neonatal care. This national parents’ neonatal survey was recognised by NICE as a method for collecting evidence for assessing parent involvement in care and decision-making (i.e. quality statement 5).

Throughout the report we highlight results that are related to key standards. A full summary of how survey domains relate to various standards is included in appendix 4, table 1.

How the survey was carried out

Each neonatal unit participating in the survey was required to send the Picker Institute a sample of parents whose babies were discharged home over a specified three month

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sampling period.

*

Parents were ineligible for inclusion if their baby had stayed in a neonatal unit for less than 24 hours, if the baby’s mother was aged under 16 years at the time the sample was drawn or if the baby had been taken into care.

For the majority of units that use the BadgerNet platform for recording and managing their neonatal data, Clevermed Ltd extracted the sample list for the units according to inclusion/exclusion criteria as specified by the Picker Institute. The sample list could be accessed by a member of the NHS trust staff who had the correct permissions to view patient identifiable data. Other units, not using BadgerNet, compiled the samples from trust records by following detailed guidance instructions provided by the Picker Institute.

All units were required to check with the NHS Demographic Batch Service that none of the mothers or babies had died following discharge to ensure that questionnaires were not mailed to recently bereaved families.

The survey was conducted in three ‘waves’ in order to obtain a sufficiently sized sample to allow the results to be presented at unit-level:

Wave 1: sample compiled in July 2010 (babies discharged April-June)

Wave 2: sample compiled in October 2010 (babies discharged July-September)

Wave 3: sample compiled in January 2011 (babies discharged October-December)

Parents were sent a questionnaire to complete at home and up to two reminders were sent to non-responders (the second reminder included another copy of the questionnaire). If parents decided to take part in the survey, they could return their completed questionnaire to the Picker Institute in a freepost return envelope. Parents could also complete the questionnaire over the phone with the help of a researcher and with the additional help of an interpreter if required.

Development of the questionnaire

The questionnaire used in the survey was developed by Picker Institute Europe in consultation with Bliss and the neonatal network representatives. Previous questionnaires examining parent satisfaction with and experiences of neonatal care were initially

reviewed, as were recent research studies (such as the POPPY project

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) and policy and

quality standards on neonatal care.

Focus groups were carried out with parents who had recently experienced neonatal care to establish the issues that were of most importance to them. Following the literature review and focus groups, a draft questionnaire was developed and a number of cognitive interviews were conducted with parents to test the relevance and validity of the questionnaire. Many revisions were made to the questionnaire during this testing phase, and further amendments were made to the tool following consultation with Bliss and the network representatives.

Please see Appendix 1 for further information on the development of the questionnaire.

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The questionnaire was sent to a random sample of 60 parents of babies who were discharged home per unit over the three month sampling period (or all parents if fewer than 60 babies were discharged in the sampling period)

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Summary of key findings

This section provides a broad overview of the main survey findings, focusing on those areas where, at a national level, parents reported their most positive and least positive experiences of neonatal care. Those questions showing the greatest variation across neonatal units in parents’ experiences are also highlighted.

The survey results are discussed in further detail in the rest of the report, examining the parents’ journey from their baby’s admission to neonatal care to their discharge home.

The results for each question included in the survey are shown in Appendix 4, and the results are broken down for particular groups of respondents (such as by parents’ age) in

Appendix 6.

Positive parent experience

Parents reported positive experiences of neonatal care in the following areas:

99% said there were facilities for the storage of breast milk on the unit

95% reported that their partner/companion was able to see their baby as soon as they wanted following their baby’s admission to the neonatal unit

93% said staff always washed or cleaned their hands before touching their baby

89% were able to visit their baby as much as they wanted to and 92% were able to contact the unit by telephone whenever they needed

86% reported always having confidence and trust in the staff caring for their baby

86% said that staff always treated them with respect and dignity

85% said staff referred to their baby by his/her first name

84% of parents said staff clearly explained why their baby was being transferred to a different hospital

80% were offered accommodation overnight at the hospital before their baby was discharged

79% said a member of staff always explained the purpose of any tests their baby had in a way they could understand

73% said nurses were always sensitive to their emotions and feelings

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Key areas for improvement

Parents reported least positive experiences in the following areas:

81% said that after they gave birth their partner or family member was not allowed to stay with them overnight

65% said they were not able to speak to a doctor about their baby as much as they wanted

61% said the health visitor who visited them at home following discharge did not have enough information about the development of babies who had received neonatal care

56% were not always offered overnight accommodation if they wanted to be close to their baby

Information provision:

53% did not get any information about any help they could get with travelling expenses, parking costs or food vouchers

34% did not get any information about parent support groups

34% said they were not given enough written information to help them understand their baby’s condition and treatment and a further 27% said they did not get any written information at all

Where admission to the neonatal unit was predicted, 43% said a member of staff from the neonatal unit did not talk to them about what to expect after the birth

32% said there was nowhere for their other children to play when visiting the unit and a further 10% said children were not allowed to visit

32% were bothered about being cared for in same ward as mothers who had their babies with them

25% were not offered emotional support or counselling services but would have liked it

Variations across units in parents’ experiences

Table 1 shows those questions in the survey which showed the greatest variation in parents’ reported experiences across units.

The individual responses to questions in the survey were converted into scores on a scale of 0 to 100 to indicate the extent to which the parents’ experience could be improved; a score of 0 is given to any response option(s) that suggest considerable scope for improvement, whereas a score of 100 is given to any response option(s) that shows the best possible experience. The higher the score for each question, the better the unit is performing. The overall unit score for each question is calculated as an average of the

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individual scores. Those questions where the range in the overall unit scores was greater than 50 are presented in Table 1. This shows where there is the greatest room for improvement for those units scoring low at these questions.

Table 1: Questions showing a large variation in parents’ experiences across units

Survey question

A2 Before your baby was born, were you given the chance to visit the neonatal unit?

A3 Before your baby was born, did a member of staff from the neonatal unit talk to you about what to expect after the birth?

B3 Were you given a photograph of your baby?

B4 After you gave birth, were you ever cared for in the same ward as mothers who had their baby with them?

B9 After you gave birth, was a partner or family member allowed to stay with you overnight?

E7 When a ward round was taking place, were you allowed to be present when your baby was being discussed?

E8 Did staff arrange your baby’s care (such as weighing, bathing) to fit in with your usual visiting times?

F5 If you (and/or your partner or companion) wanted to stay overnight to be close to your baby, did the hospital offer you accommodation?

F8 If you had your other children with you when visiting the unit, was there somewhere they could play?

G7 Were you offered emotional support or counselling services?

G8 Were you given information about any help you

Minimum Maximum unit unit score score

Range across units

31 85

54

17

11

27

2

20

34

15

0

11

5

76

100

88

80

96

92

89

62

71

74

59

89

61

78

76

57

74

62

60

69

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could get with travelling expenses, parking costs or food vouchers?

G9 Did staff give you any information about parent support groups, such as Bliss or other local groups?

H9 After your baby arrived home, did you have contact with neonatal staff?

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13

80

96

57

84

Question domains

To help understand which area(s) of neonatal care parents reported the most positive experiences and those where there is most room for improvement, scored questions have been grouped and aggregated to form a single composite score for 7 domains. A factor analysis was undertaken to determine these domains which is described in Appendix 4.

The questions included in each domain are presented in Appendix 4 mapped to relevant quality standards for neonatal care (Appendix 4, Table 1).

The domain with the highest overall mean score was ‘trust and confidence in staff’ indicating that parents were most positive about the communication and support provided by staff and their relationship with staff caring for their baby (Table 2). In contrast the areas of care where parents reported the least positive experiences overall were ‘co-ordinated discharge planning’ and ‘interaction with doctors’ (Table 2).

Table 2: Overall question domain scores by type of unit

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Domain National

(125 units)

Special Care Baby

Units

(38 units)

Local Neonatal

Units

(53 units)

Neonatal Intensive

Care Units

(34 units)

Mean

Min Max

Mean

Min Max

Mean

Min Max

Mean

Min Max

Trust and confidence in staff

Knowledge and information sharing

78

64 94

78

80

64 91

80

Active Care

Empowered decision making

75

Privacy for breastfeeding

45 93

78

84

61 95

84

Co-ordinated discharge planning

85

73 93

85

76 91

85

74 93

85

64 94

78

67 86

77

64 91

80

68 89

80

54 93

74

52 87

73

61 95

84

71 94

85

67

49 83

67

56 83

67

49 78

67

69

55 83

68

55 80

69

57 79

70

Interaction with doctors

73 91

64 91

71 86

45 89

63 95

56 75

60 83

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There were no statistically significant differences in the mean domain scores by the type of unit that a baby was discharged from. The mean score for Special Care Baby Units

(SCBUs) was higher for the ‘empowered decision making’ domain (78) compared with

Local Neonatal Units (74) and Neonatal Intensive Care Units (73). This suggests that parents whose baby was discharged from a SCBU were more positive about their experiences of being involved in their baby’s care when compared with parents whose babies were discharged from the other types of unit. In contrast, the mean score for the

‘interaction with doctors’ domain was higher for units providing more complex or longerterm care: the mean domain score for SCBUs was 68 compared with 69 for LNUs and 70 for NICUs suggesting that parents are more positive about the sensitivity shown by doctors and were able to speak with a doctor as much as they wanted if their baby was discharged from a unit providing higher level care. Although these differences are not statistically significant they nevertheless highlight the main areas where parents reported experiences differ depending on unit type.

The data was also analysed to test for differences in domain scores by key groups of respondents. Few significant differences were found and consequently these tests are not reported.

Variations in the experiences of parents

In general, parents’ reported experiences of neonatal care were more positive if they were older and their baby was born at an earlier gestational age (and/or if their baby was of lower birth weight and/or spent longer in a neonatal unit). The data have therefore been standardised by the age of respondents and by the gestational age of their baby at birth.

This standardisation was particularly important for the unit-level reports to ensure that no unit appeared better or worse than another because of its respondent profile.

A breakdown of the results by key groups of respondents is presented in Appendix 6.

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Admission to neonatal care

Pre-natal experience

Preparing parents for their baby’s time in the neonatal unit is important as the experience can be shocking and stressful. Previous research has shown parents appreciate having a

tour of the neonatal unit and being informed about what to expect after the birth.

4,5

Toolkit for high-quality neonatal services

3.1 Where admission to a neonatal unit is predicted, a pre-natal opportunity to visit the neonatal unit and meet key personnel is offered to the family

Around one third of parents (32%) responding to the survey knew that their baby might need care in a neonatal unit. Of these, 41% said they were given the chance to visit the unit before the birth but almost a quarter (21%) said they would have liked to have visited but were not given the chance. Of those parents who expected their baby would spend time in a neonatal unit, only one third (36%) said that a member of staff from the unit definitely talked to them about what to expect after the birth.

The survey showed that a significantly higher proportion of parents whose babies were born at an earlier gestational age, had a lower birth weight and spent a longer length of time in the unit were given the chance to visit the neonatal unit and have spoken to a member of staff from the unit about what to expect after the birth (Appendix 6). This finding is perhaps unsurprising given that these factors are perhaps all indicative of babies that have greater needs and require more intensive care.

After the birth

In the focus groups carried out during the development of this survey, parents said that touching or seeing their baby (or receiving a photograph) before s/he went to the neonatal unit was important; and some hospital staff made sure that this happened.

The majority of parents responding to the survey (85%) said they were able to touch their baby before they were admitted to the neonatal unit

although less than half of respondents (46%) said they were given a photograph of their baby. The survey showed a large variation across units with regard to the percentage of parents reporting that they had been given a photograph of their baby, ranging from just 2% of respondents at one unit to 90% at another.

In the first few hours after the birth, it is known that parents appreciate being contacted

by a member of staff from the neonatal unit to inform them about their baby’s progress.

4

One in five parents who responded to the survey (22%) said that a member of staff did not come to talk to them about their baby’s condition and treatment after the birth. Of those parents aged 36 and over, 80% said a member of staff came to talk to them compared with just 75% of parents aged 16-27 years (Appendix 6)

This figure excludes parents that were unable to touch their baby due to medical reasons.

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Mothers of babies admitted to a neonatal unit can find it difficult to be cared for on the general postnatal ward with mothers and babies. Research has shown that mothers who are separated from their babies want to be treated with sensitivity at this time but that

this need is not always met.

5

The survey showed that 59% of mothers were cared for on

the same ward as those mothers who had their babies with them; over half of these (32%) said they were bothered by this. The results suggest that mothers of babies born with greater medical need (i.e. babies born at any earlier gestation, of lower birth weight, requiring a longer length of stay, and admitted to a neonatal intensive care unit) were more likely to report being cared for in a separate room or area following the birth

(Appendix 6). For instance, of those babies born weighing less than 1000 grams, 52% of their mothers were cared for in a separate room or area compared with just 38% of mothers whose babies were born weighing more than 2500 grams. Whilst it is perhaps understandable that hospitals may prioritise separate rooms/areas for those mothers of babies requiring more intensive care and treatment, there is nevertheless a large variation across units in the proportion of mothers who said they were cared for in a separate room (11%-80%).

Another area where the results vary widely across units is with regard to whether or not partners/family members were allowed to stay overnight after the birth. Whilst overall

81% of respondents said that a partner or family member was not allowed to stay with them overnight after the birth, this ranged from just 20% of respondents at one unit to almost all respondents (98%) at another, highlighting one area where some units could make considerable improvement.

On admission to the unit

Providing parents with information about the neonatal unit, such as the facilities available to them and the purpose of the technology used to stabilise and monitor the babies, is

important to help parents familiarise themselves with the unit at a traumatic time.

2,4

The

alarms and monitors used in neonatal units were a major concern for parents in all the focus groups that were conducted as part of the development of the survey.

Toolkit for high-quality neonatal services

3.2 All parents are introduced to facilities, routines, staff and equipment on admission to a neonatal unit

Almost half of parents (43%) said that they were not given enough information, or only given information ‘to some extent’ about the neonatal unit. A similar proportion of parents (46%) reported that that the purpose of the machines, monitors and alarms used in the unit was not clearly explained to them. In contrast, almost three quarters of parents (74%) said that infection control practices were definitely explained to them.

There were no statistically significant differences between the different ‘types’ of units with regard to parents experiences of the information provided about the unit and explanations on infection control practices. However, a significantly higher proportion of parents whose baby stayed in a special care baby unit reported that the purpose of the machines and monitors was explained to them (56%) compared with local neonatal units

(54%) and neonatal intensive care units (51%).

Copyright 2011 Picker Institute Europe. All rights reserved. Page 15

Staff on the neonatal unit

Relationship with staff

One criterion for achieving standard 5.1 (‘Introducing parents to the unit’) of the Bliss

Baby Charter is that unit staff should introduce themselves to parents and explain their role in relation to their baby’ care and the running of the unit. Just over half of parents responding to the survey (56%) said that all of the staff introduced themselves when they visited the unit, although this ranged between 31% and 83% of respondents across units.

A higher proportion of parents overall (85%) said that staff always, or nearly always, referred to their baby by his/her first name, but again fairly large variations were evident across units: at the highest scoring unit for this question, 99% of parents said that staff always/nearly always referred to their baby by his/her first name, compared with just 50% of parents at the lowest scoring unit for this question.

The focus groups undertaken with parents during the development of the survey showed that the personal qualities of staff were of primary importance to parents during their journey through neonatal care; parents said that the ‘personal touch’ of considerate and sensitive staff made all the difference. Seventy six percent of parents responding to the survey said that they were always (or nearly always) able to talk to staff on the neonatal unit about their worries and concerns. However of those parents in the youngest age group (aged 16-27), a significantly lower percentage of parents reported that they were always able to talk to staff about their worries or concerns (69%) when compared with those parents aged 36 and over (80%).

Parents have reported that it is important to have a good rapport with nurses caring for

their baby on the unit and to be offered support by them.

4

Almost three quarters of parents responding to the survey (73%) said that nurses were always, or nearly always, sensitive to their emotions and feelings. This compares with just 63% of parents who reported that doctors were always/nearly always sensitive to their emotions and feelings.

Interestingly, whilst there were no significant differences in the proportions of parents reporting that nurses were sensitive to their emotions by the ‘type’ of unit their baby was discharged from, there were significant differences in parents’ experiences of doctors being sensitive to their emotions and feelings by unit-type (Appendix 6). Of those parents whose baby was discharged from a neonatal intensive care unit, 67% said that doctors were always, or nearly always, sensitive to their emotions or feelings compared with just 62% of parents whose baby was discharged from a local neonatal unit and 61% of parents whose baby was discharged from a special care baby unit.

Only 36% of parents said they were always, or nearly always, able to speak to a doctor about their baby as much as they wanted (ranging from 19% to 65% across units). Almost half of parents (46%) said they were only able to speak to a doctor as much as they wanted ‘to some extent’ whilst 19% said they were not able to speak to a doctor as much as they wanted. As perhaps expected, higher proportions of those parents of babies who appeared to have greater health needs (i.e. babies born at an earlier gestation, babies born lower weight and babies that stayed in the unit longer) said they were always able to speak to a doctor about their baby (Appendix 5). For instance, 38% of parents whose baby stayed in neonatal care for more than one week said they were always able to speak to a doctor compared with 32% of parents whose baby stayed in the unit for less than one

Copyright 2011 Picker Institute Europe. All rights reserved. Page 16

week. Given this finding, it might be expected that parents of those babies discharged from units providing a higher or more intensive level of care would be more likely to report being able to speak to a doctor as much as they wanted. However, the survey showed no significant differences in the proportions of parents who said they were able to speak to a doctor as much as they wanted by the type of unit that their baby was discharged from (Appendix 6).

Information and communication

Toolkit for high-quality neonatal services

3.9 Written information is available (in languages and formats appropriate to the local community) to all users of the service on medical and surgical treatments, to permit early and effective communication with parents covering at least:

Condition/diagnosis

Treatment options available

Likely outcomes/benefits of treatment

Possible complications/risks

Possible tests and investigations

The survey showed that parents were largely positive about their experiences of staff communicating information to them:

86% said that they were told which nurse was responsible for their baby’s care each day they were in the unit (64%-100% across units)

79% said that staff always, or nearly always, kept them up to date with their baby’s condition and progress (57%-95% across units)

79% said a member of staff always, or nearly always, explained the purpose of any tests their baby had in a way they could understand (61%-92% across units)

77% said a member of staff always, or nearly always, explained the operation and its outcome in a way they could understand if their baby had surgery (numbers at unit-level too low to report range)

78% said that staff always, or nearly always, told them about any changes in their baby’s condition or care (59%-93% across units)

Parents were less positive, however, about the amount of written information they were given to help them understand their baby’s condition and treatment. Only 40% of respondents said that they ‘definitely’ got enough written information and over a quarter

(27%) reported that they did not get any written information at all to help them understand their baby’s condition. In the lowest scoring unit for this question, 42% of parents said they did not get any written information compared with just 16% of parents at the highest performing unit which shows one area where some units could make a significant improvement.

Although there were no significant differences in the experiences of parents receiving written information by the ‘type’ of unit their baby was discharged from (i.e. SCBU, LNU or NICU), higher proportions of parents reported that they definitely got enough written information if their baby had greater health needs (i.e. babies born at an earlier

Copyright 2011 Picker Institute Europe. All rights reserved. Page 17

gestational age, and/or babies with a lower birth weight and/or babies that stayed in the unit for longer). For example, of those parents of babies who stayed in a neonatal unit for longer than one week, 47% reported that they were ‘definitely’ given enough information to help them understand their baby’s condition and treatment compared with just 31% of parents whose baby stayed in the unit for less than one week (Appendix X)

Of those parents who needed help understanding written or spoken English, 78% said that information was provided in a language they could understand.

One of the criterions outlined in the Bliss Baby Charter for achieving principle 2 on

decision-making, is that parents have open access to their baby’s records.

6

One in five

parents (20%) said they did not read their baby’s medical notes but would have liked to and 27% reported that they did not know about or see the medical notes. The proportions of parents reporting that they read their baby’s medical notes varied across units from 23% to 80%.

Confidence in staff

Participants in all four focus groups, conducted during the development of the questionnaire, described the clinical care their baby received as excellent overall despite differences between neonatal facilities in different units. They praised the clinical expertise of staff, ‘state of the art’ equipment, and the attention their babies got when things went wrong. The survey supports this finding as 86% of parents said that they always, or nearly always, had confidence and trust in the staff caring for their baby.

Almost all parents (93%) reported that, as far as they knew, staff always or nearly always washed or cleaned their hands before touching their baby. Of those parents who said that staff did not wash or clean their hands before touching their baby, only 33% said they always or nearly always had confidence and trust in staff compared with 90% of parents who said that staff always washed or cleaned their hands before touching their baby

(Table 3)

Table 3: Parents overall confidence and trust in staff by whether or not staff washed or cleaned their hands before touching their baby

Overall, did you have confidence and trust in the staff caring for your baby?

Yes, always or nearly always

Yes, sometimes No Total

As far as you know, did staff wash or clean their hands before touching your baby?

Yes, always or nearly always

Yes, to some extent

7043

89.7%

261

49.2%

724

9.2%

217

40.9%

85 7852

1.1% 100.0%

52 530

9.8% 100.0%

No

Total

25

32.9%

7329

86.7%

27

35.5%

968

11.4%

24 76

31.6% 100.0%

161 8458

1.9% 100.0%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 18

(X

2

=1148, df=4, p <0.001)

Around a quarter of parents (24%) said that important information about their baby was only ‘sometimes’ passed on from one member of staff to another and a further 5% said the information was not passed on at all. The proportion of parents who said that important information about their baby was always/nearly always passed on ranged between 46% and 90% across units. As shown in Appendix 6, a significantly higher proportion of parents in the oldest age group said that important information about their baby was passed from one member of staff to another when compared with those parents aged 16-27 years (76% compared with 64% respectively).

Another area of the survey that parents reported a less positive experience was with regard to receiving conflicting information from staff about their baby’s condition or care.

A quarter of parents (26%) said that staff ‘sometimes’ gave them conflicting information and 18% said that staff ‘often’ did. Previous qualitative research has shown that parents

find it very distressing to be given conflicting advice about how to care for their baby,

5

and the importance of parents being given consistent information from staff is

recognised in the Bliss Baby Charter Standards.

6

Of those parents who said that staff

‘often’ gave them conflicting information, 22% said they did not always have confidence and trust in the staff caring for their baby compared with just 7% of parents who were not given any conflicting information (Table 4). The survey showed considerable variation across units in parents’ reported experiences of being given conflicting information: in the poorest performing unit for this question, 46% of parents said that staff often gave them conflicting information compared with just 13% of parents at the highest scoring unit.

Table 4: Parents overall confidence and trust in staff by whether they received conflicting information from staff about their baby’s condition or care

Did staff give you conflicting information

Yes, often

about your baby's

condition or care?

Yes, sometimes

Total

No, not at all

Overall, did you have confidence and trust in the staff caring for your baby?

Yes, always or nearly always

Yes, sometimes No

1292

78.3%

1794

74.3%

4769

93.1%

7855

85.5%

276

16.7%

538

22.3%

312

6.1%

1126

12.3%

82

5.0%

84

3.5%

42

.8%

208

2.3%

Total

1650

100.0%

2416

100.0%

5123

100.0%

9189

100.0%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 19

(X

2

=580, df=4, p <0.001)

Copyright 2011 Picker Institute Europe. All rights reserved. Page 20

Parental involvement

Involving parents in decision-making

Principle 2 of the Bliss Charter states that decisions on the baby’s best interest should be based on evidence and best practice, and are informed by parents who are encouraged

and supported in the decision-making process.

6

It is reasoned that treating parents as

partners in their baby’s care provides the balance between baby and family-centred care.

Both the Department of Health’s toolkit and the NICE quality standards for neonatal care identify the importance of parents being involved in decision-making about the care and treatment of their baby.

NICE Specialist Neonatal Care Quality Standard

5a) Evidence of local arrangements to involve parents in decision-making processes

Toolkit for high-quality neonatal services

3.4 Parents are encouraged and supported to participate in decision-making about the care and treatment of their baby. Written and regularly updated care plans are shared with parents. Clinical care decisions are made by experienced staff in partnership with the parents and discussions held in an appropriate setting.

Just over half of parents (55%) reported that doctors and nurses ‘always’ included them in discussions about their baby’s care and treatment, with the remaining 46 per cent responding that this happened only ‘sometimes’ or not at all. At the best scoring unit for this question, 75% of parents reported that doctors and nurses always included them in discussions about their baby’s care. In contrast, only 35% of parents at the lowest scoring unit said they were always included in such discussions highlighting one area where considerable improvement can be made.

A higher overall proportion of parents (63%) said that they were always, or nearly always, allowed to be present during a ward round when their baby was being discussed. Inviting parents to be present at ward rounds is recognised as one criterion for achieving standard 2.1 of the Baby Charter on involving parents on an equal basis in the decision-

making process.

6

Of those parents who said they were always or nearly always allowed to be present during a ward round when their baby was being discussed, 67% reported that doctors and nurses included them in discussions about their baby’s care when compared with only 33% of those parents who were not allowed to be present (Table 5).

Copyright 2011 Picker Institute Europe. All rights reserved. Page 21

Table 5: Parents presence during ward rounds by involvement in discussions about their baby’s care and treatment

Did the doctors and nurses include you in discussions about your baby’s care and treatment?

Yes, always

Yes, sometimes No Total

When a ward round was taking place, were you

Yes, always or nearly always

allowed to be present when your baby was being

Yes, to some extent

discussed?

No, I was not allowed to be there

3373

67.1%

556

39.1%

503

1481

29.4%

718

50.5%

611

175 5029

3.5% 100.0%

147 1421

10.3% 100.0%

415 1529

Total

32.9%

4432

40.0%

2810

27.1% 100.0%

737 7979

55.5% 35.2% 9.2% 100.0%

(X

2

=1195, df=4, p <0.001)

Parents’ reported experience of whether or not they were allowed to be present during a ward round differs by the ‘type’ of unit (i.e. level of care provided) from which their baby was discharged. Of those parents whose baby was discharged from a special care baby unit, 70% reported that they were allowed to be present during ward rounds compared with only 61% of parents whose baby was discharged from a local neonatal unit and 58% of parents from a neonatal intensive care unit (Appendix 6).

Copyright 2011 Picker Institute Europe. All rights reserved. Page 22

Involving parents in providing care

NICE Specialist Neonatal Care Quality Standard

5b) Evidence of local audit demonstrating active involvement of parents in providing care for their baby

Toolkit for high-quality neonatal services

3.5 Parents are encouraged and supported to participate in their baby’s care at the earliest opportunity, including: regular skin-to-skin care; providing comforting touch and comfort holding, particularly during painful procedures; feeding; and day-to-day care, such as nappy changing

The active involvement of parents in caring for their baby while they are in neonatal care

is recognised as a key marker for a high-quality neonatal service.

2,3,6

Enabling parents to help to care for their baby facilitates development of the parental relationship thereby

allowing the baby and their family to achieve the best quality of life.

6

The qualitative work carried out to develop the questionnaire for this survey, showed that parents found doing practical things for their baby like changing nappies, feeding, dressing and bathing were vitally important in bonding, improving confidence and helping them feel like

‘proper’ parents. They found it helpful if staff recognised their need to be involved and encouraged and supported their efforts.

A relatively high proportion of respondents (81%) to the survey said that they were

‘definitely’ involved as much as they wanted to be in the day-to-day care of their baby, with 77% reporting that their partner or companion was involved as much as they wanted to be. The survey asked parents if staff arranged their baby’s care (such as nappy changing and feeding) to fit in with their usual visiting times, as this may help to support parents to participate in their baby’s daily routine.

Just over half of all parents (55%) said that staff always, or nearly always, arranged their baby’s care to fit in with their usual visiting times, although a quarter (24%) reported that this only ‘sometimes’ happened and 21% said staff did not do this. There was a large variation in parents’ experiences of staff arranging their baby’s care to fit in with their usual visiting times; at the best performing unit for this question (i.e. scored 96 out of

100), 87% of parents said that staff always or nearly always arranged their baby’s care to fit in with their usual visiting times, compared with just 17% of parents at the poorest performing unit for this question.

Table 6 shows that of those parents who said that staff arranged their baby’s care to fit in with their usual visiting times, 92% said they were ‘definitely’ involved as much as they wanted in the day to day care of their baby compared with just 61% of parents who

Copyright 2011 Picker Institute Europe. All rights reserved. Page 23

reported that staff did not arrange their baby’s care to fit in with their usual visiting times.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 24

Table 6: Parents involvement in the day-to-day care of their baby by their baby’s care being arranged to fit in with their usual visiting times

Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy changing and feeding?

Did staff arrange your baby’s care (such as

1 Yes, always or nearly always

weighing, bathing) to fit in with your usual

Yes, sometimes

visiting times?

Total

No

Yes, definitely

4556

91.8%

1566

73.8%

1132

61.4%

7254

81.3%

Yes, to some extent

329

6.6%

No, I was not involved as much as I wanted

77

Total

4962

1.6% 100.0%

462

21.8%

93 2121

4.4% 100.0%

436

23.6%

1227

13.7%

277 1845

15.0% 100.0%

447 8928

5.0% 100.0%

X

2

=1075, df=4, p <0.001

Three quarters of parents (77%) said they were ‘definitely’ encouraged to touch, hold and comfort their baby, with just 5% reporting that this was not the case in their experience

(ranging between 0% and 26% across units). A much smaller proportion of parents, 50%, said that they definitely had as much ‘kangaroo care’ (skin-to-skin contact) with their baby as they wanted, ranging between 22% and 79% across units. One in ten parents responding to the survey (11%) said that they did not know about kangaroo care.

The survey showed differences in parents’ reported experiences of their involvement in their baby’s care by age group (Figure 1). A significantly smaller proportion of the parents in the youngest age group reported being involved as much as they wanted to be in the day-to-day of their baby, being encouraged to hold and comfort their baby and having as much kangaroo care with their baby as they wanted.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 25

Figure 1: Parents’ involvement in their baby’s care by age group

90%

80%

70%

60%

50%

40%

30%

20%

10%

16-27

18-31

32-35

36 and over

0%

Definitely involved as much as wanted in the day-to-day care of their baby

Definitely encouraged to touch, hold and comfort their baby

Definitely had as much

‘kangaroo care’ (skin- to-skin contact) as wanted

Question response

Support with feeding

The benefits of breast milk for nutritional management are widely recognised; breast milk can help with enteral nutrition, promotes growth and reduces infections and related

complications.

6

NICE Specialist Neonatal Care Quality Standard

6) Mothers of babies receiving specialist neonatal care are supported to start and continue breastfeeding, including being supported to express milk

Toolkit for high-quality neonatal services

3.10 Maternity and neonatal services encourage breastfeeding and the expression of milk through the provision of information and dedicated support, including the availability of a comfortable, dedicated and discreet area and the availability of breast pumps and associated equipment

Copyright 2011 Picker Institute Europe. All rights reserved. Page 26

The POPPY research project with parents of neonates has shown that the information and support for expressing breast milk and for breastfeeding could be better so that women

have realistic expectations, adequate privacy and practical help.

4

This survey showed that at a national level a similar proportion of women said that they were definitely given the support they needed to express breast milk (76%), breastfeed their baby (74%) and bottle feed their baby formula milk (74%). A high percentage of women (85%) said they were given the equipment they needed to express breast milk for their baby, such as a breast pump, and almost all parents reported facilities on the unit for the storage of breast milk

(99%).

The overall proportions of parents who said they were definitely given enough privacy for expressing milk and for breastfeeding their baby were relatively high (77% and 67% respectively). Although there were no significant differences by the ‘type’ of unit a baby was discharged from (i.e. SCBU, LNU or NICU) with regard to parents’ satisfaction with the amount of privacy provided for expressing milk or breastfeeding, the survey showed variation in parents’ experiences across units. The proportion of parents reporting that they were definitely given enough privacy for expressing milk for their baby ranged from just 37% at one unit to 93% at another. A similar range across trusts was evident in the proportion of parents reporting that they were definitely given enough privacy for breastfeeding (29%-90%), highlighting one area where there is scope for some units to make considerable improvement.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 27

Support for parents

Information provision

The POPPY research project highlighted that parents value being able to develop a rapport with other parents on the neonatal unit and appreciate educational and support

groups led by a health professional.

4

One of the markers of a high-quality neonatal service, as outlined in the toolkit, is the provision of information to parents in a number

of areas, including national and local support groups.

2

Toolkit for high-quality neonatal services

3.8 Written information is available to all users of the service to permit early and effective communication with parents covering at least: national and local support groups available where to go for further information and support, including sources of financial support and useful websites

3.14 Trusts have policies to provide financial support for families during long-term admission and/or long-distance transfer away from their local unit. Information about this financial support is made available to families

One third of parents who responded to the survey (34%) said that they did not receive any information about parent support groups such as Bliss or other local groups, either from staff directly or from the unit (such as leaflets in a parents’ room), ranging between 9% and 66% across units. Perhaps unsurprisingly, higher proportions of parents reported that they received this information if their baby was born at an earlier gestational age and/or was of a lower birth weight and/or stayed in the unit for more than one week

(Appendix 6). Similarly, higher percentages of parents whose babies appeared to have more complex and greater needs, said they were given information about help they could get with travelling expenses, parking costs or food vouchers (Appendix 6). For example, of those parents whose baby stayed in a neonatal care unit for more than one week 28% said they were given this information, compared with just 20% of those parents of babies who stayed in the unit for less than a week. Overall, 53% of parents said they were not given information about any help they could get with travelling expenses, parking costs or food vouchers.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 28

Emotional support

Research has shown that many parents appreciate the opportunity to talk to a counsellor

whilst their baby is being cared for in a neonatal unit.

4

Standard 2.3 of the Bliss Baby

Charter states that the psychological aspects of care for the whole family should be recognised and included throughout the baby’s care pathway and it is one of the markers

of good practice outlined in the toolkit for high-quality neonatal services.

2

Toolkit for high-quality neonatal services

3.12 Families are able to easily access psychological and social support and parents are given written information about relevant services, such as local and national support groups, counselling, social services and benefits advice

Whilst more than half of parents responding to the survey said they did not need any emotional support or counselling, a quarter (25%) said they were not offered this support but would have liked it. At the national level, only 18% of parents said they were offered emotional support or counselling services and this was as low as 5% of parents at two units. As perhaps expected, significantly higher proportions of parents whose babies appeared to have more complex needs and require specialist neonatal care for longer (i.e. born at an earlier gestational age, had a lower birth weight, had a longer length of stay in the unit and were discharged from a neonatal intensive care unit) said they were offered emotional support or counselling services (Appendix 6). For instance, of those parents whose baby weighted less than 1000 grams at birth, 39% said they were offered emotional support or counselling compared with just 15% of parents whose baby was born weighing more than 2500 grams.

The neonatal unit environment

The toolkit for high-quality neonatal services outlines a number of facilities that should be made available for parents of babies receiving neonatal care, a few of which are outlined below:

Toolkit for high-quality neonatal services

3.11 Dedicated facilities are available for parents and families of babies receiving neonatal care, including overnight accommodation for parents, a play area for siblings of infants receiving care.

The survey has shown that parents of babies born with more complex needs, requiring more intensive and longer periods of time in neonatal care, generally appear to report more positively with regards to receiving information and support from staff (as outlined above). Conversely, of those parents whose baby was born at a later gestational age and/or of a greater birth weight and/or had a shorter length of stay in the unit, higher proportions reported that the hospital offered them accommodation if they wanted to stay overnight to be close to their baby (Appendix 6). Significant differences were also evident by the age group of respondents, with higher proportions of parents in the older age groups reporting that they were offered overnight accommodation (Appendix 6.

The survey showed a large variation across units with regards to the provision of somewhere for children to play when their parents are visiting their sibling in the unit.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 29

The proportion of parents who said that there was nowhere for their children to play when visiting the unit ranged between 0% and 92% across units.

Sixty six percent of parents said that there was always, or nearly always, enough space for them to sit alongside their baby’s cot in the unit. However, one third of parents said that there was only enough space to sit alongside their baby’s cot ‘sometimes’ (31%) or that there was ‘never’ enough space (3%). Of those parents whose baby was discharged from a Special Care Baby Unit, a significantly higher proportion said that there was always enough space for them to sit alongside their baby’s cot (69%) when compared with those parents whose babies were discharged from a Local Neonatal Unit (64%) or Neonatal

Intensive Care Unit (65%). The lack of space in the units providing higher level care may partly be explained by the increased amount of machines and monitors used in such units to care for the babies.

The survey asked parents if there were any aspects of the neonatal unit’s environment that could have been improved. Most parents (63%) said that no improvements were needed. Of the 37% of parents who did think one or more improvements could be made to the unit’s environment, the temperature and noise levels were the more commonly ticked options (Figure 2)

Figure 2: Parents’ experiences of the neonatal unit environment

Thinking about the environment of the unit which of the following could have been improved? (Tick all that apply)*

45%

40%

35%

30%

25%

20%

15%

10%

5%

0%

Noise levels Light levels Temperature Cleanliness Baby's comfort (eg baby nests)

Other

*Please note: the 63% of parents that ticked ‘no improvements were needed’ have been excluded from this analysis and chart

.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 30

Transfers to another unit

Parents’ have previously reported practical difficulties if their baby was transferred to another hospital for care, such as additional financial costs, and found it stressful to lose

the continuity of care from the previous hospital.

4

One of the markers of good practice outlined in the toolkit for high-quality neonatal services is that a mother and her baby are

cared for in the same hospital.

2

Toolkit for high-quality neonatal services

3.13 Every effort is made to keep a mother and her baby/babies in the same hospital during their respective admissions.

Around one in ten parents (13%) said that their baby was transferred to a neonatal unit at a different hospital. Of those parents who said that their baby was transferred, one third

(33%) said that they were cared for in a separate hospital to their baby. There were no significant difference in the proportions of respondents reporting that this happened by the ‘type’ of unit their baby was discharged from (i.e. Special Care Baby Units, Local

Neonatal Units, and Neonatal Intensive Care Units).

The importance of informing parents about the transfer service and providing information

about the unit to which a baby is being transferred has been recognised.

2

Toolkit for high-quality neonatal services

3.8 Written information is available to all users of the service to permit early and effective communication with parents covering at least:

Transfer service and repatriation

Services to which a baby is being transferred, including a named contact and telephone number

The survey showed that whilst the majority of parents (84%) said that staff clearly explained to them why their baby was being transferred to a different hospital, a smaller proportion (62%) said they were definitely given enough information about the hospital/unit where their baby was being transferred to. The survey highlighted other areas where parents’ experiences of their baby being transferred to a different hospital could be improved:

A relatively large proportion felt they were not given enough warning by staff that their baby was being transferred: 23% said they were only given enough warning ‘to some extent’ and 18% said they were not given enough warning at all.

Around a quarter of parents (29%) also felt that the staff in the unit where their baby was transferred were only aware of the previous care their baby had received ‘to some extent’ with 9% reporting that staff were not aware at all.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 31

Discharge from the unit

Principle 7 of the Bliss Baby Charter states that discharge planning should be facilitated and co-ordinated from admission to discharge to ensure both the baby and family receive appropriate care and access to resources. It is reasoned that discharge should be a

seamless and supported journey from the unit to home.

6

The toolkit for high-quality neonatal services outlines a number of markers of good practice to ensure the ‘safe and effective’ discharge of a baby; those that are covered by the parents’ survey are outlined below.

Toolkit for high-quality neonatal services

3.15 Health and social care plans are coordinated to enable the safe and effective discharge of a baby:

Parents are involved in multi-disciplinary discharge planning from the point of admission and plans are continually reviewed

Families have appropriate information and training before being discharged home

Parents have access to accommodation so they can be with their baby and develop confidence in day-to-day care prior to discharge

Offering overnight accommodation to parents in preparation for their baby’s discharge

can help parents to develop confidence in the day-to-day care of their baby.

6

Most parents

(80%) said they were offered accommodation overnight at the hospital before their baby came home. Only 4% of parents said that there were not offered overnight accommodation before their baby’s discharge but would have liked it, although more than a quarter of parents (28%) reported this at the poorest performing unit for this question. As perhaps expected, a significantly higher proportion of parents said that they were offered overnight accommodation before discharge if their baby had stayed in the unit for a longer length of time (Appendix 6).

Three quarters of parents (75%) said they definitely felt prepared for their baby’s discharge from neonatal care (ranging between 57% and 95% across units), although 22% reported that they only felt prepared ‘to some extent’. Higher proportions of parents said they definitely felt prepared for their baby’s discharge if their baby was born at a later gestational age, had a shorter length of stay in the unit and was discharged from a

Special Care Baby Unit (Appendix 6). For example, of those parents whose baby was born at 38 weeks gestation or later, 78% said they definitely felt prepared for their baby’s discharge home compared with 72% of parents whose baby was born at 37 weeks gestation or earlier.

Only 9% of parents said that their baby required some special equipment when they were discharged from the unit. Of these parents, the majority (78%) said that they were

‘definitely’ given enough information and guidance on using the equipment when their baby left the unit.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 32

The survey showed that parents would have liked to have been given more information on what to expect in terms of their baby’s progress and recovery. Almost one third of parents (32%) said they were only given enough information ‘to some extent’ whilst 15% said they were not given enough information on this at all. There was a large variation in parents’ experience of being given this information across units; at the best performing unit for this question (i.e. scored 86 out of 100), 77% of parents said that they were definitely given enough information about what to expect in terms of their baby’s progress, compared with just 32% of parents at the poorest performing unit for this question.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 33

Care and support at home

Previous research with parents has shown the importance of providing on-going support

from the neonatal unit at home following the baby’s discharge.

4

Both the toolkit for high-

quality neonatal services and the NICE quality standard for neonatal care recognise that the baby and family have ongoing needs at home and include measures to ensure a smooth transition from hospital to community care:

NICE Specialist Neonatal Care Quality Standard

7) Babies receiving specialist neonatal care have their health and social care plans coordinated to help ensure a safe and effective transition from hospital to community care.

Toolkit for high-quality neonatal services

3.16 The ongoing care of babies and families discharged from neonatal services is provided according to the needs of the baby and in a manner that facilitates a smooth transition home

The care and support provided to parents once their baby had been discharged from the neonatal unit was highlighted in the ‘summary of findings’ as one of the main areas of the survey where parents reported the least positive experiences.

After their baby arrived home, 58% of parents said they had some contact with neonatal staff and the majority of these parents (24%) said that this contact was from their baby having a follow-up hospital appointment. A relatively small proportion of parents said that staff contacted them by telephone (19%) or visited them at home (15%) following discharge and almost one in ten (9%) said they did not have any contact with neonatal staff but would have liked this.

Almost all parents (96%) said they saw a health visitor after their baby was discharged from the neonatal unit. A relatively large proportion of these parents said that the health visitor did not have enough information about the development of babies who had received neonatal care: 35% said the health visitor only had this information ‘to some extent’ and 26% said the health visitor did not have enough information. This finding supports the recommendation made by the POPPY research project for training for health visitors and GPs in pre-term baby issues and the effects for families. This previous research highlighted that visits from health visitors with specialised knowledge in

premature babies was highly valued by parents.

4

The survey asked parents if they got enough support overall from health professionals after their baby arrived home. Only 58% of parents reported that they definitely got enough support. Almost one third of parents (32%) said they only got enough support ‘to some extent’, while 10% said they did not get enough support from health professionals

Copyright 2011 Picker Institute Europe. All rights reserved. Page 34

once their baby had arrived home. The proportion of parents who reported that they definitely got enough support from health professionals at home ranged between 37% and 76% across units.

References

1. National Audit Office, Caring for Vulnerable Babies: The reorganisation of neonatal

care in England, (NAO, 2007).

2. Department of Health Toolkit for High-Quality Neonatal Services, (DH, 2009).

3. National Institute for Health and Clinical Excellence, Quality standard for specialist

neonatal care, (NICE, 2010).

4. Family centred care in neonatal units: A summary of research results and

recommendations from the POPPY project (NCT, August 2009)

5. France, C. Parental Involvement within Neonatal Units in the East of England, (East of England Specialised Commissioning Group, 2009)

6. Bliss, The Bliss Baby Charter Standards, (Bliss – the special care baby charity,

2009).

7. Sheldon H, Graham C, Pothecary N and Rasul F. Increasing response rates amongst

black and minority ethnic and seldom heard groups, Picker Institute Europe (2007).

Accessed from: http://www.nhssurveys.org/Filestore/documents/Increasing_response_rates_literat ure_review.pdf

Copyright 2011 Picker Institute Europe. All rights reserved. Page 35

Appendix 1: Questionnaire development

This section outlines the main stages involved in developing the questionnaire used in the 2010-2011 Parents’ Neonatal Survey.

Literature review and consultation

A list of survey topic areas was produced from a review of recent research studies, policy and quality standards documents on neonatal care. This list aimed to identify the areas of importance to parents and those issues that should come within the scope of this survey. Representatives from Bliss, Picker Institute Europe and a number of the Neonatal

Networks attended a working group meeting in February 2010 to discuss and refine the proposed topic areas/issues to be covered in the questionnaire. Bliss also provided feedback on these issues from their parent representatives.

Many of the representatives from networks suggested extra subject areas that could be included in the questionnaire, although it was recognised that the questionnaire should not become too lengthy. It was agreed that the focus of the survey was to highlight key areas of good practice and where improvements were needed, and that more detailed investigations could be undertaken by networks/units at a later stage into particular issues raised by the survey findings.

The consultation with Bliss and the networks highlighted the importance of capturing the experiences of parents whose babies were transferred to different neonatal units. Whilst the questionnaire focused on examining parents’ experiences of the neonatal unit that their baby was discharged from, it was recognised that the questionnaire should also allow parents to provide feedback on another unit if this is where their baby spent more time. Therefore, a section was included towards the end of the questionnaire containing a shortened set of the same questions which parents could complete about another neonatal unit where their baby spent more time.

Focus Groups

Four focus groups were conducted with parents whose baby had been cared for in a neonatal unit in the last twelve months. The aim of these focus groups was to explore parents views and experiences of the neonatal care their baby received in hospital and afterwards, to inform the development of the questionnaire.

The group discussions covered the parents ‘journey’ through neonatal care, from birth to admission and discharge from the unit in addition to care at home. The broad topic areas covered were:

Organisation of care

Parents’ involvement in care

Communication, information and support

Quality of care and facilities

The groups were moderated by a senior researcher from Picker Institute Europe. The participants were recruited by Bliss via two of the neonatal networks. Two focus groups were conducted in London; one in Leeds and one in Birmingham. Participation from a mixture of mothers and fathers, and parents from different ethnic groups was aimed for.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 36

Parents who had experienced different levels of neonatal care and who had experienced a transfer were also recruited for participation in the groups.

A total of 27 parents took part in the focus groups, 23 mothers and 4 fathers. Each focus group lasted approximately one and a half hours and was audio recorded. As most parents had their baby with them, the noise levels in the groups was high, making transcription of the audio tape potentially difficult. The facilitator therefore used a flip chart and participants were also asked to write on post it notes. The flip chart notes and post it notes were later written up and the recordings transcribed, taking care to remove any information that could identify individuals.

The focus group participants were very motivated and willing to talk about their experiences. All parents praised the skill and expertise of staff and the speed with which they responded to their babies’ health crises. Parents’ experiences varied widely, highlighting differences in the way hospitals organised care and treatment during the babies’ journey through neonatal care. The main gaps identified by parents in the care received were information provision, sensitivity and ongoing emotional support.

Cognitive testing

Fifteen cognitive interviews with parents whose baby had been in neonatal care were conducted in June 2010 in the following locations: London, Leeds, Gloucestershire and the West Midlands. The interviewees were recruited by Bliss and parents were given a gift voucher to thank them for their time.

The purpose of the cognitive interviews was to test the relevance and validity of the questionnaire. The participants were asked to read the instructions on the front of the questionnaire and to answer the questions. They were asked whether the instructions were clear and easy to understand, and were encouraged to comment on their thought processes whilst completing the questionnaire. The researchers probed throughout the interviews to assess the interviewees understanding of the questions and to ensure that the response options were appropriate. Interviewees were also asked if any issues of importance to them had been omitted from the questionnaire.

The questionnaire was tested in three stages, with revisions being made to the questionnaire after each stage including amendments to question wording, the addition or deletion of response options and changes to the layout of the questionnaire.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 37

Appendix 2: Participating neonatal units

Network Hospital Neonatal Unit

Bedfordshire and

Hertfordshire Neonatal

Network

Cheshire and Merseyside

Neonatal Network

Essex Neonatal Network

(East of England)

Kent and Medway Neonatal

Network

Lancashire and Cumbria

South Neonatal Network

Bedford Hospital

Lister Hospital, Stevenage

Luton and Dunstable Hospital

Queen Elizabeth II Hospital, Welwyn Garden City

Watford Hospital

Airedale General Hospital

Arrowe Park Hospital, Wirral

Countess of Chester

Leighton Hospital, Crewe

Liverpool Women’s

Macclesfield District General Hospital

Ormskirk Hospital

Warrington Hospital

Whiston Hospital

Basildon Hospital

Broomfield Hospital (formerly St John’s, Chelmsford)

Colchester Hospital

Darent Valley Hospital

Princess Alexandra Hospital Harlow

Southend Hospital

Maidstone District General

Medway Maritime Hospital

Pembury Hospital

Queen Elizabeth Hospital, Margate

William Harvey Hospital, Ashford

Blackpool Victoria Hospital

Furness General Hospital

Lancashire Women & Newborn Centre (formerly Royal

Blackburn Hospital & Burnley General Hospital)

Royal Lancaster Infirmary

Royal Preston Hospital

Copyright 2011 Picker Institute Europe. All rights reserved. Page 38

London Perinatal and

Neonatal Networks

Midlands Central Newborn

Network

Norfolk, Suffolk and

Cambridgeshire Neonatal

Network

Barnet Hospital

Chase Farm Hospital

Chelsea & Westminster Hospital

Ealing Hospital

Epsom General Hospital

Homerton Hospital

King George Goodmayes Hospital

Croydon University Hospital (formerly Mayday

Hospital)

Newham General Hospital

North Middlesex Hospital

Queens Hospital, Romford

Royal Free Hospital

Royal London Hospital

St George’s Hospital

St Helier Hospital

St Thomas’ Hospital

Whipps Cross Hospital

George Eliott Hospital, Nuneaton

Kettering General Hospital

Manor Hospital, Walsall

Northampton General Hospital

Queen's Hospital Burton on Trent

Walsgrave Hospital Coventry

Warwick Hospital

Addenbrooke’s Hospital, Cambridge

Hinchingbrooke Hospital, Huntingdon

Ipswich Hospital

James Paget Hospital, Great Yarmouth

Norfolk and Norwich University Hospital

Peterborough Maternity Unit

Queen Elizabeth Hospital, King’s Lynn

West Suffolk Hospital, Bury St Edmonds

Copyright 2011 Picker Institute Europe. All rights reserved. Page 39

Northern Neonatal Network

South Central Neonatal

Network

South West Midlands

Newborn Network

Cumberland Infirmary, Carlisle

Darlington Memorial Hospital

South Tees Hospital NHS Foundation Trust

Queen Elizabeth Hospital, Gateshead

Royal Victoria Infirmary (Newcastle)

South Tyneside District General Hospital

Sunderland Royal Hospital

University Hospital of North Tees

University of Durham Hospital

Wansbeck General, Ashington

West Cumberland, Whitehaven

Basingstoke and North Hampshire Hospital

Dorset County Hospital, Dorchester

Horton Hospital, Banbury

John Radcliffe Hospital, Oxford

Milton Keynes General Hospital

Poole Hospital

Princess Anne Hospital

Queen Alexandra Hospital

Royal Berkshire Hospital, Reading

Royal Hampshire County Hospital

Salisbury District Hospital

St Mary’s Hospital, Isle of Wight

St Richard’s Hospital

Stoke Mandeville Hospital, Aylesbury

Wexham Park Hospital, Slough

Birmingham Heartlands Hospital

Birmingham Women’s Hospital

City Hospital, Birmingham

County Hospital, Hereford

Good Hope Hospital

Sandwell General Hospital

Worcestershire Royal Hospital

Copyright 2011 Picker Institute Europe. All rights reserved. Page 40

Staffordshire, Shropshire and Black Country (SSBC)

Neonatal Network

Surrey and Sussex Neonatal

Network

Trent Perinatal Network

Yorkshire Neonatal Network

Alexandra Hospital, Redditch

New Cross Hospital, Wolverhampton

Royal Shrewsbury Hospital

Russells Hall Hospital

Stafford General Hospital

University Hospital of North Staffordshire

Conquest Hospital, Hasting, East Sussex

East Surrey, Redhill

Eastbourne Hospital

Frimley Park

Princess Royal, Haywards Heath

Royal Surrey, Guildford

Royal Sussex, Brighton

St Peter’s Hospital, Chertsey

Worthing Hospital

Derbyshire Children's Hospital

King's Mill Hospital

Lincoln County Hospital

Nottingham City Hospital

Pilgrim Hospital, Boston

Queen’s Medical Centre University Hospital

University of Hospitals Leicester NHS Trust

Bradford Royal Infirmary

Calderdale Royal Hospital

Dewsbury and District Hospital

Harrogate District Hospital

Hull Royal Infirmary

Leeds Neonatal Service

Pontefract General Infirmary

Scarborough General Hospital

Copyright 2011 Picker Institute Europe. All rights reserved. Page 41

Appendix 3: Response rates

Overall response rates

A total of 19, 305 questionnaires were mailed to parents and 9,442 were returned completed (Table 1). The overall response rate to the pilot survey was 50.4% after adjusting for questionnaires returned undelivered, sent to parents who were ineligible to take part in the survey (e.g. baby did not stay in a neonatal unit, baby stayed in the unit for less than 24 hours) or to families where the mother or baby had died following discharge. The adjusted response rates ranged between 42% and 57% across the 19 neonatal networks and between 32% and 73% across units.

Table 1: Overall response rate

Outcome of

Returned useable questionnaire

sending

Returned undelivered or parent moved house

questionnaire

Mother or baby died

9442

473

4

Too ill, opted out or returned blank questionnaire

Parent not eligible to fill in questionnaire

Questionnaire not returned - reason not known

186

86

9114

Base 19305

Adjusted base

18742

Adjusted response rate 50.4%

The response rates for each wave of the survey are shown in Table 2. The response rate was highest for the last wave of the survey which is most likely because the majority of units submitted their samples to the Picker Institute on time in this wave so the first mailings could be sent out in November for the majority of units, thereby reducing the delays in parents receiving the questionnaire following their baby’s discharge from the unit.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 42

Table 2: Overall response rate by survey ‘wave’

Wave

Sampling period

First mailing sent out

Number of respondents

Adjusted response rate

1

April-June 2010

2

July-September

2010

August-October

2010

November

2010-January

2011

3

October-

December 2010

February-

March 2011

2712

3196

3534

50.3%

47.1%

53.9%

National 9442

50.4%

Demographics of responders and non-responders

Most units supplied the age and ethnic group of the parents included in the sample.

Using this information and the outcome of each sample member (i.e. whether they returned a completed questionnaire or not), the response rates were calculated for age and ethnic groups. It is important to compare the response rates for different demographic groups of responders and non-responders to the survey, as the responders may not be representative of all those sampled.

Age

The response rates increased with age as completed questionnaires were received from:

36.6% of parents aged 16-27 years

51.2% of parents aged 28-31 years

58.8% of parents aged 32-35 years

63.3% of parents aged 36 and over

The differences in response rates between age groups were significant indicating that the achieved sample was not representative of some age groups (Table 2).

Copyright 2011 Picker Institute Europe. All rights reserved. Page 43

Table 2: Response rate by age group

Did not respond opted out Responded

Age group 1 16-27

Total

2 28-31

3 32-35

4 36 and over

3712

63.4%

2056

48.8%

1624

41.2%

1586

36.7%

8978

49.0%

2141

36.6%

2153

51.2%

2319

58.8%

2732

63.3%

9345

51.0%

X

2

=844, df=3, p>0.001

Total

5853

100.0%

4209

100.0%

3943

100.0%

4318

100.0%

18323

100.0%

Ethnic group

The response rates by ethnic group are shown in Table 3. There were significant differences in response rates between the groups. Whilst in other national patient surveys, the response rates are higher for those from White groups when compared with

Black and minority ethnic groups, in this survey a higher response rate was actually evident for the ‘Chinese or other ethnic groups’ (57%) when compared with white respondents (55%). However, the response rates for Asian/Asian British and Black/Black

British parents were lower (41% and 42% respectively).

This analysis has shown that one of the limitations to the neonatal survey is that, in common with many other research studies and patient surveys, younger people and those

from some minority ethnic groups were less likely to participate.

7

Copyright 2011 Picker Institute Europe. All rights reserved. Page 44

Table 3: Response rate by ethnic group

Did not respond opted out

Ethnic group

1 White 6600

Responded

7906

Total

2 Mixed

3 Asian or Asian British

4 Black or Black British

5 Chinese or Other Ethnic

Group

45.5%

134

47.0%

1127

58.7%

490

58.1%

180

43.4%

8531

47.5%

54.5%

151

53.0%

793

41.3%

354

41.9%

235

56.6%

9439

52.5%

X

2

= 160, df=4, p>0.001

Total

14506

100.0%

285

100.0%

1920

100.0%

844

100.0%

415

100.0%

17970

100.0%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 45

Appendix 4: Creation of question domains

Excluded questions

To avoid problems in generating site level domain scores, questions were excluded from the analysis if the overall item response rate was less than 70%. This threshold was chosen as it appeared to represent a natural ‘step’ in the distribution of item response rates. In total, 17 items (24%) were excluded:

Items excluded from the analysis due to low item response rates.

Q

A2

A3

B3

B6

C2

C4

C5

C6

C7

E16

F8

G2

G5

G7

H4

Question wording

Before your baby was born, were you given the chance to visit the neonatal unit?

Before your baby was born, did a member of staff from the neonatal unit talk to you about what to expect after the birth?

Were you given a photograph of your baby?

How long did you wait before a member of staff came to talk to you about your baby’s condition and treatment?

Were you and your baby ever cared for in separate hospitals?

Did staff clearly explain to you why your baby was being transferred to a different hospital?

Did you feel you were given enough warning by staff that your baby was going to be transferred?

In your opinion, were staff in the new unit fully aware of the care your baby had received so far?

Were you given enough information about the hospital/unit where your baby was being transferred (such as location and facilities)?

If you bottle fed your baby (formula milk) were you given enough support to do this from neonatal staff?

If you had your other children with you when visiting the unit, was there somewhere they could play?

If you needed help understanding written or spoken English, was information given in a language you could understand?

If your baby had any surgery, did a member of staff explain the operation and its outcome in a way you could understand?

Were you offered emotional support or counselling services?

Were you offered accommodation overnight at the hospital before your baby came

Item resp. rate

28%

31%

65%

58%

12%

12%

11%

12%

12%

59%

40%

10%

8%

43%

55%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 46

H7

H9 home?

Were you given enough information and guidance on using the equipment when your baby left the neonatal unit?

Follow-up contact with the neonatal unit

9%

44%

Factor analysis

The variables listed above were excluded from the dataset and mean scores for the remaining items were computed for each participating site (i.e. neonatal unit). Mean scores were computed based on weighted data to ensure a balanced case-mix between sites. The site-level mean scores of the remaining 56 items were then subjected to a factor analysis. Varimax rotation was used to clearly divide items between factors.

The rotated analysis included 13 components with Eigenvalues of greater than one. In total these accounted for around 73% of the overall variance. Each of the first seven factors accounts for ≥5% of the total variance, with 52% accounted for by the first seven factors collectively. Consequently, we focus only on the first seven factors

.

The rotated component matrix was inspected to identify items with high loadings to particular components: this is shown in figure 3, below. Items with factor loadings of ≥

0.5 were extracted for further analysis.

Note that an alternative interpretation could be made using a smaller number of factors, since the scree plot appears to show a distinct elbow after three to four factors. This may be useful if shortened questionnaires are required for future use.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 47

Q

B4

B5

B7

B8

B9

B10

B11

B12

B13

B14

D1

D2

D3

D4

Rotated component matrix showing high loadings

Component

1 2 3 4 5 6 7 8 9 10 11 12 13

.336 .048 -.143 .070 -.121 .297 .259 .139 -.091 .107 .073 -.104 -.153

Wording

After you gave birth, were you ever cared for in the same ward as mothers who had their baby with them?

After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

After your baby was admitted to the neonatal unit, were you able to see your baby as soon as you wanted?

After your baby was admitted to the neonatal unit, was your partner or companion able to see your baby as soon as they wanted?

After you gave birth, was a partner or family member allowed to stay with you overnight?

When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

When your partner or companion first visited the unit, were they able to speak to a doctor or nurse about your baby’s condition as soon as they wanted?

When you first visited your baby, were you given enough information about the neonatal unit (such as rules, procedures and facilities for parents)

When you first visited your baby, was the purpose of the machines, monitors and alarms used in the neonatal unit clearly explained to you?

When you first visited the unit, were infection control practices explained to you, such as hand washing and procedures for visitors?

When you visited the unit, did the staff caring for your baby introduce themselves to you?

Were you told which nurse was responsible for your baby’s care each day s/he was in the neonatal unit?

Did staff keep you up to date with your baby’s condition and progress?

Were you able to talk to staff on the unit about your worries and concerns?

.195 .522 .018 .306 .019 .263 .203 -.102 -.034 .014 -.092 .209 -.328

.065 .220 .184 .109 .134 .162 -.011 .059 -.047 .155 .725 .032 -.220

.150 -.053 .151 .037 .101 -.102 .074 -.005 .067 -.013 .805 .012 .199

.020 .268 -.064 .150 .005 -.012 .009 .044 .122 .507 .399 -.216 -.075

.384 .583 .109 .197 .179 -.020 .156 .336 .174 .158 .104 .156 -.041

.336 .644 .081 .181 .170 .033 .065 .311 .155 .149 .124 .055 .088

.337 .699 -.002 -.095 .017 .209 .164 .059 .133 .064 .162 .067 -.023

.446 .499 -.060 .261 .180 .080 .169 .098 .217 .148 .004 .261 -.109

.125 .763 -.108 -.291 -.200 .018 .138 .096 -.020 -.035 -.018 -.016 .129

.525 .221 .054 .188 -.009 .120 .011 .111 .588 .083 .058 -.010 -.035

.253 .231 .075 .007 .043 .069 -.095 .061 .734 .022 .045 -.078 .207

.618 .421 .211 .105 .015 .063 .031 .222 .342 .088 -.076 .049 -.067

.686 .309 .301 .190 .129 .147 .051 .190 .200 .080 -.008 -.008 .024

Copyright 2011 Picker Institute Europe. All rights reserved. Page 48

Q

D5

D6

D7

D8

D9

D10

Wording

Were you able to speak to a doctor about your baby as much as you wanted?

Were the nurses on the unit sensitive to your emotions and feelings?

Were the doctors on the unit sensitive to your emotions and feelings?

In your opinion, was important information about your baby passed on from one member of staff to another?

Did staff give you conflicting information about your baby's condition or care?

As far as you know, did staff wash or clean their hands before touching your baby?

Did staff refer to your baby by his/her first name?

Component

1 2 3 4 5 6 7 8 9 10 11 12 13

-.015 .462 .224 .281 -.108 .178 .031 .597 .091 -.074 .035 .018 .128

.733 .140 .112 .124 .191 .191 .118 .049 .362 .102 .019 .056 .123

.368 .146 -.137 .028 .213 .034 .124 .681 .086 -.013 -.004 -.030 -.048

.705 .224 .168 .051 .132 .116 .120 .339 .092 .020 .082 .175 .046

.662 -.108 -.056 -.143 .043 -.194 -.158 .124 -.039 -.004 .343 .169 .023

.550 .132 -.086 -.046 .105 .119 .235 -.239 .096 .072 -.087 -.409 .040

.600 .009 -.132 .417 .346 -.002 -.016 -.143 .035 .182 .056 .132 .040

D11

Overall, did staff treat you with respect and courtesy? .766 .082 .195 .116 .106 .166 .015 .019 .256 .023 .068 -.058 .134

D12

D13

E1

E2

Overall, did you have confidence and trust in the staff caring for your baby?

Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy changing and feeding?

.856

.092

.150

.121

.070

.760

.062

.145

.093

.286

.034

.123

.081

.037

.063

.053

.060

-.217

.114

.081

.036

.008

-.072

-.063

.025

.015

Was your partner or companion involved as much as they wanted in the day-to-day care of your baby, such as nappy changing and feeding?

.350 .133 .588 .070 .345 -.044 .052 -.038 -.231 .190 .096 .032 .187

Were you encouraged to touch, hold and comfort your baby? .118 .000 .799 -.020 -.085 .203 -.065 .062 .200 .013 .122 .072 .044

E3

E4

E5

E6

E7

Did you have as much ‘kangaroo care’ (skin- to-skin contact) with your baby as you wanted?

Did the doctors and nurses include you in discussions about your baby’s care and treatment?

Were you told about any changes in your baby’s condition or care?

When a ward round was taking place, were you allowed to be present when your baby was being discussed?

-.045 -.148 .740 .005 -.040 .078 .190 .029 .304 -.080 .191 .187 -.016

.255 .204 .254 .619 .005 .127 .267 .340 .099 .085 .089 .101 -.023

.510 .374 .214 .290 .169 .028 .117 .348 .119 -.005 -.026 .105 .103

.219 -.084 -.030 .839 .081 -.006 .085 .078 .044 .117 .051 .065 .117

Copyright 2011 Picker Institute Europe. All rights reserved. Page 49

Q

E8

E9

E10

E11

E12

E13

E14

Component

Wording

Did staff arrange your baby’s care (such as weighing, bathing) to fit in with your usual visiting times?

Overall, did staff help you feel confident in caring for your baby?

If you wanted to express breast milk for your baby, were you given the support you needed from neonatal staff?

1 2 3 4 5 6 7 8 9 10 11 12 13

.460 .106 .102 .367 .354 .051 .134 -.032 .000 .205 .050 .383 .051

.659 .250 .214 .155 .211 .163 .148 .147 .182 .111 .016 .189 .098

.292 .231 .219 .030 .505 .468 .081 .051 .136 .158 .240 .133 .103

Were you given the equipment you needed, such as a breast pump and sterilisation equipment?

Were you given enough privacy for expressing milk for your baby?

.171

.016

.047

.010

.283

.153

-.040

.016

.665

.126

.281

.830

.041

.029

.004

.056

.092

-.051

.283

.126

.079

-.120

.127

-.026

.046

.119

Were there facilities on the neonatal unit for the storage of breast milk?

If you wanted to breastfeed your baby were you given enough support to do this from neonatal staff?

.234

.281

-.119

.268

-.075

.246

.063

.045

.742

.409

.030

.428

.041

.057

.084

.176

.009

.177

.001

.072

.058

.148

-.061

.114

.060

.025

Were you given enough privacy for breast feeding your baby? .223 .208 .119 .107 .137 .785 .092 .011 .180 -.029 .086 .090 .024

E15

F1

Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

What improvements were needed?

.489 .045 .102 .518 -.058 .225 .296 .163 .064 -.014 .144 -.034 .110

.672 .143 -.269 .163 -.009 .169 .037 -.026 -.216 .047 .069 .012 .054

F2

F3

F4

F5

F6

F9

G1

Was there enough space for you to sit alongside your baby’s cot in the unit?

In your opinion, was there adequate security on the neonatal unit?

If you (and/or your partner or companion) wanted to stay overnight to be close to your baby, did the hospital offer you accommodation?

Were you able to visit your baby on the unit as much as you wanted to?

Were you able to contact the unit by telephone whenever you needed to?

Were you given enough written information to help you understand your baby’s condition and treatment?

.195 -.011 .001 .238 -.216 .279 .231 .244 -.087 .372 -.133 .172 -.076

.392 .149 -.231 .165 -.130 .153 .338 -.038 -.314 .066 .061 .240 .313

.158 .037 .170 .315 .270 .213 .233 -.020 .004 .662 .162 -.058 -.107

.244 .095 .271 .385 .444 .132 -.016 .116 -.250 -.098 .108 -.228 .005

.574 .246 -.086 .247 .245 .030 -.160 -.087 -.161 .294 -.088 .052 .233

.204 .387 .195 .154 .073 .238 .463 .119 .174 -.026 .098 .282 .212

Copyright 2011 Picker Institute Europe. All rights reserved. Page 50

Q

G3

G4

G8

G9

Wording

When you asked questions about your baby’s condition and treatment, did you get answers you could understand?

Did a member of staff explain the purpose of any tests your baby had in a way you could understand?

Were you given information about any help you could get with travelling expenses, parking costs or food vouchers?

Did staff give you any information about parent support groups, such as Bliss or other local groups?

In your opinion, was your baby’s stay in neonatal care…

H2

H5

H8

H11

H12

Did you feel prepared for your baby’s discharge from neonatal care?

Were you given enough information on what to expect in terms of your baby’s progress and recovery?

If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

Overall, after your baby arrived home, did you get enough support from health professionals?

Component

1 2 3 4 5 6 7 8 9 10 11 12 13

.586 .209 .124 .161 .245 .109 .185 .417 .030 -.025 .092 -.018 -.080

.631 .050 .149 .123 .329 .049 .212 .308 -.035 .071 .121 .026 -.089

.214 .013 .034 -.084 .105 .039 -.026 -.019 .036 .694 -.016 .162 .312

.173 .040 .115 .140 .117 .145 .099 .005 .147 .121 .008 .030 .788

.466 .162 .278 .078 -.056 -.081 -.155 .400 -.100 .165 .002 .110 .085

.072 .210 .110 .064 .016 .072 .215 .027 -.050 .040 -.005 .703 .036

.217 .253 .131 .049 -.035 .209 .512 .406 .150 .061 .237 .239 -.115

-.117 .247 .062 .059 .017 .079 .766 .066 -.116 -.075 .107 .154 .018

.249 .046 -.001 .175 .151 -.036 .768 .005 -.003 .213 -.150 -.012 .084

Copyright 2011 Picker Institute Europe. All rights reserved. Page 51

Rotated components

Factor loadings, correlations, and other evidence were reviewed to further refine each of the rotated components. Only the first seven factors were considered in detail.

Additionally, a scale reduction approach was only followed for those factors with four or more factors strongly loaded: factors one, two, and three.

Factor one – Trust and confidence in staff

Component 1 loadings

D1

D3

When you visited the unit, did the staff caring for your baby introduce themselves to you?

Did staff keep you up to date with your baby’s condition and progress?

.525

.618

D4 Were you able to talk to staff on the unit about your worries and concerns? .686

D11

D12

D13

E6

E9

D6

D8

D9

D10

Were the nurses on the unit sensitive to your emotions and feelings?

In your opinion, was important information about your baby passed on from one member of staff to another?

Did staff give you conflicting information about your baby's condition or care?

As far as you know, did staff wash or clean their hands before touching your baby?

Did staff refer to your baby by his/her first name?

Overall, did staff treat you with respect and courtesy?

Overall, did you have confidence and trust in the staff caring for your baby?

Were you told about any changes in your baby’s condition or care?

Overall, did staff help you feel confident in caring for your baby?

.600

.766

.856

.510

.659

.733

.705

.662

.550

F2 What improvements were needed? .672

F9

G3

G4

Were you able to contact the unit by telephone whenever you needed to?

When you asked questions about your baby’s condition and treatment, did you get answers you could understand?

Did a member of staff explain the purpose of any tests your baby had in a way you could understand?

.574

.586

.631

Cronbach’s Alpha = 0.937

Component one appeared to reflect an underlying construct relating to emotional and relational aspects of care and demonstrated exceptionally high scale reliability with 16 items included.

Several items can be removed from this factor to construct a shortened domain:

D1 is weakly loaded to this factor but is more strongly loaded to component nine, suggesting that it better fits a different construct.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 52

D10, E6, and F9 are also weakly loaded to the factor and should be removed.

D4 and D6 are strongly correlated with D12 (r=0.720, r=0.804) and D13 (r=0.712, r=0.726) respectively. One of these pairs of questions should be removed: given the high item loadings of D12 and D13, retain these.

D12 and D13 are highly correlated (r=0.742) and both are overall questions: drop

D12.

D8 is strongly correlated with several other items: D4 (r=0.716), D6 (r=0.706), E9

(r=0.751), and G3 (4=0.711). It therefore lacks uniqueness and can be removed.

F2 is highly correlated with D13 (r=0.622) as is potentially problematic for use in a domain (as the ‘other’ response option is excluded from the analysis) – therefore drop

F2.

G3 and G4 are strongly correlated (r=0.734) and superficially appear to cover very similar topics. Given weak item loading of G3, drop G3 and retain G4.

This leaves us with a six item domain comprising:

Q

D3

D9

Question wording

Did staff keep you up to date with your baby’s condition and progress?

Did staff give you conflicting information about your baby's condition or care?

D11 Did staff refer to your baby by his/her first name?

D13

E9

G4

Overall, did you have confidence and trust in the staff caring for your baby?

Overall, did staff help you feel confident in caring for your baby?

Did a member of staff explain the purpose of any tests your baby had in a way you could understand?

Cronbach’s Alpha = 0.828

The correlation between site-level scores for this factor based on the full 16 items and the shortened six item domain was r=0.960, indicating exceptionally high agreement between the two measures.

Factor two – Knowledge and information sharing

Component 2 loadings

B5

B10

B11

B12

B14

After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

When your partner or companion first visited the unit, were they able to speak to a doctor or nurse about your baby’s condition as soon as they wanted?

When you first visited your baby, were you given enough information about the neonatal unit (such as rules, procedures and facilities for parents)

When you first visited the unit, were infection control practices explained to you, such as hand washing and procedures for visitors?

.522

.583

.644

.699

.763

Copyright 2011 Picker Institute Europe. All rights reserved. Page 53

Cronbach’s Alpha = 0.811

Factor two appeared to reflect the quality of communication with and information from staff at the start of the neonatal episode.

B10 and B11 were extremely strongly correlated (r=0.871). Although B11 had a higher loading it was applicable to fewer respondents, so remove B11 and retain B10.

This leaves a four-item domain comprising:

Q

B5

B10

B12

B14

Question wording

After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

When you first visited your baby, were you given enough information about the neonatal unit (such as rules, procedures and facilities for parents)

When you first visited the unit, were infection control practices explained to you, such as hand washing and procedures for visitors?

Cronbach’s Alpha = 0.760

Unsurprisingly, the correlation between site-level scores for this factor based on the full five items and the shortened four item domain was very high (r=0.990), indicating exceptionally high agreement between the two measures.

Factor 3 – Active Care

Component 3 loadings

E1

E2

E3

E4

Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy changing and feeding?

Was your partner or companion involved as much as they wanted in the day-today care of your baby, such as nappy changing and feeding?

Were you encouraged to touch, hold and comfort your baby?

Did you have as much ‘kangaroo care’ (skin- to-skin contact) with your baby as you wanted?

.760

.588

.799

.740

Cronbach’s Alpha = 0.738

Factor three appeared to represent the extent to which staff on neonatal wards supported and encouraged new parents to be actively involved in caring for their children.

Recommend retaining all items: E1 & E2 are strongly correlated, as are E3 and E4, but all items appear to have value for the domain.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 54

Factor 4 – Empowered decision-making

Component 4 loadings

E5

E7

F1

Did the doctors and nurses include you in discussions about your baby’s care and treatment?

When a ward round was taking place, were you allowed to be present when your baby was being discussed?

Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

.619

.839

.518

Cronbach’s Alpha = 0.653

Q

E5

E7

F1

Question wording

Did the doctors and nurses include you in discussions about your baby’s care and treatment?

When a ward round was taking place, were you allowed to be present when your baby was being discussed?

Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

Factor 5 – Privacy for breastfeeding

Component 5 loadings

E12

E15

Were you given enough privacy for expressing milk for your baby?

Were you given enough privacy for breast feeding your baby?

.830

.785

Cronbach’s Alpha = 0.750

Q

E12

E15

Question wording

Were you given enough privacy for expressing milk for your baby?

Were you given enough privacy for breast feeding your baby?

Factor 6 – Co-ordinated discharge planning

Component 6 loadings

H8

H11

H12

Were you given enough information on what to expect in terms of your baby’s progress and recovery?

If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

Overall, after your baby arrived home, did you get enough support from health professionals?

.512

.766

.768

Cronbach’s Alpha = 0.728

Copyright 2011 Picker Institute Europe. All rights reserved. Page 55

Q

H8

H11

H12

Question wording

Were you given enough information on what to expect in terms of your baby’s progress and recovery?

If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

Overall, after your baby arrived home, did you get enough support from health professionals?

Factor 7 – Interaction with doctors

Component 7 loadings

D5

D7

Were you able to speak to a doctor about your baby as much as you wanted? .597

Were the doctors on the unit sensitive to your emotions and feelings? .681

Cronbach’s Alpha = 0.610

Q

D5

Question wording

Were you able to speak to a doctor about your baby as much as you wanted?

Were the doctors on the unit sensitive to your emotions and feelings?

D7

Table 1 below provides an overview of the seven domains mapped to the relevant quality standards for neonatal care.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 56

Table 1: Question domains mapped to neonatal quality standards

Domains

Survey question NICE Specialist Neonatal

Care Quality Standard

DH Toolkit for

High-Quality

Neonatal Services

3.4 Decision making

Bliss Baby Charter

2.1 Decision making

Relationships with staff

D3. Did staff keep you up to date with your baby’s condition and progress?

5a,

5b

Encouraging parental involvement in decisionmaking processes and care

D9. Did staff give you conflicting information about your baby’s condition or care?

D11. Did staff refer to your baby by his/her first name?

D13. Overall, did you have confidence and trust in the staff caring for your baby?

E9. Overall, did staff help you feel confident in caring for your baby?

5b Encouraging parental involvement in care

5b Encouraging parental involvement in care

Knowledge and information

G4. Did a member of staff explain the purpose of any tests your baby had in a way you could understand?

5a Encouraging parental involvement in decisionmaking processes

B5. After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

5a,

5b

Encouraging parental involvement in decisionmaking processes and care

3.4 Decision making

3.5 Parental involvement

3.9 Written information

2.1 Decision making

1.1a Dignity and

Privacy

5.6 Daily Cares

2.1d Decision making

5.1 Introduction to unit

Copyright 2011 Picker Institute Europe. All rights reserved. Page 57

sharing

Active care

Empowered

B10. When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

B12. When you first visited your baby, were you given enough information about the neonatal unit (such as rules, procedures and facilities for parents)

B14. When you first visited the unit, were infection control practices explained to you, such as hand washing and procedures for visitors?

5a,

5b

Encouraging parental involvement in decisionmaking processes and care

E1. Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy changing and feeding?

E2. Was your partner or companion involved as much as they wanted in the day-to-day care of your baby, such as nappy changing and feeding?

E3. Were you encouraged to touch, hold and comfort your baby?

E4. Did you have as much ‘kangaroo care’ (skin- to-skin contact) with your baby as you wanted?

5b Encouraging parental involvement in care

5b Encouraging parental involvement in care

5b Encouraging parental involvement in care

5b Encouraging parental involvement in care

E5. Did the doctors and nurses include you in discussions about your baby’s care and treatment?

5a Encouraging parental involvement in decisionmaking processes

3.2 Introduction

3.2 Introduction

3.5 Parental involvement

3.5 Parental involvement

3.5 Parental involvement

3.5 Parental involvement

3.4 Decision making

2.1b Decision making

5.1e Introduction to unit

5.1b Introduction to unit

5.6a Daily Cares

5.6a Daily Cares

1.2a Dignity and

Privacy

1.3a Dignity and

Privacy

2.1h Decision making

Copyright 2011 Picker Institute Europe. All rights reserved. Page 58

decision making

E7. When a ward round was taking place, were you allowed to be present when your baby was being discussed?

F1. Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

5a Encouraging parental involvement in decisionmaking processes

3.4 Decision making

3.6 Dignity and respect

2.1a Decision making

1.1f Dignity and

Privacy

Copyright 2011 Picker Institute Europe. All rights reserved. Page 59

Privacy for breastfeeding

E12. Were you given enough privacy for expressing milk for your baby?

E15. Were you given enough privacy for breast feeding your baby?

Co-ordinated discharge planning

Interaction with doctors

H8. Were you given enough information on what to expect in terms of your baby’s progress and recovery?

H11. If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

H12. Overall, after your baby arrived home, did you get enough support from health professionals?

D5. Were you able to speak to a doctor about your baby as much as you wanted?

D7. Were the doctors on the unit sensitive to your emotions and feelings?

6 Breastfeeding

6 Breastfeeding

7 Coordinated transition to community care

3.1 Encourage breastfeeding

3.1 Encourage breastfeeding

3.8

/

3.15

Information /

Co-ordinated discharge

7 Coordinated transition to community care

3.15 Co-ordinated discharge

7 Coordinated transition to community care

3.15 Co-ordinated discharge

5a,

5b

Encouraging parental involvement in decisionmaking processes and care

6.2b Breastfeeding

6.2b Breastfeeding

7.3a Baby's needs at home

7.1 Co-ordinated discharge plan

7.1 Co-ordinated discharge plan

1.1f Dignity and

Privacy

Copyright 2011 Picker Institute Europe. All rights reserved. Page 60

Appendix 5: Frequency tables for all questions

Before your baby was born

A1 Before your baby was born, did you know that

they might need care in a neonatal unit?

Number Percentage

1 Yes

2 No

Total specific responses

Missing responses

2972

6200

9172

64

32%

68%

100%

Answered by all

A2 Before your baby was born, were you given the

chance to visit the neonatal unit?

Number Percentage

1 Yes

2 No, but I did not mind

3 No, but I would have liked this

Total specific responses

4 This was not possible due to medical reasons

Missing responses

1022

976

548

2546

401

41

Answered by those who knew their baby might need neonatal care

41%

38%

21%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 61

A3 Before your baby was born, did a member of staff from the neonatal unit talk to you about what to

expect after the birth?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 Don't know / Can't remember

Missing responses

1004

593

1221

2818

135

35

Answered by those who knew their baby might need neonatal care

36%

21%

43%

100%

Admission to neonatal care

B2 After the birth, were you able to touch your baby

before s/he was taken to the neonatal unit?

Number Percentage

1 Yes

2 No

Total specific responses

3 It was not possible due to medical reasons

Missing responses

Answered by all

6496

1097

7593

1232

411

85%

15%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 62

B3 Were you given a photograph of your baby?

Number Percentage

1 Yes

2 No, but I would have liked this

3 No, but I took a photograph myself

Total specific responses

4 I did not want a photograph taken

Missing responses

4004

2012

2676

8692

268

46%

23%

31%

100%

276

Answered by all

B4 After you gave birth, were you ever cared for in the same ward as mothers who had their baby with

them?

Number Percentage

1 Yes, and this bothered me

2 Yes, but I did not mind

3 No, I stayed in a separate room/area

Total specific responses

4 I was discharged from hospital

Missing responses

Answered by all

2812

2362

3482

8656

298

282

32%

27%

41%

100%

0%

0%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 63

B5 After the birth, did a member of staff come to talk

to you about your baby’s condition and treatment?

Number Percentage

1 Yes

2 No

Total specific responses

3 Don't know / Can't remember

Missing responses

6561

1861

8422

643

78%

22%

100%

171

Answered by all

B6 How long did you wait before a member of staff came to talk to you about your baby’s condition and

treatment?

Number Percentage

1 Less than one hour

2 More than one hour but less than two

3 More than two hours but less than four

4 Four hours or more

Total specific responses

3145

1101

593

59%

20%

11%

547

5386

10%

100%

5 Don't know / Can't remember

Missing responses

1136

78

Answered by those who spoke to a member of staff after the birth

Copyright 2011 Picker Institute Europe. All rights reserved. Page 64

B7 After your baby was admitted to the neonatal unit, were you able to see your baby as soon as you

wanted?

Number Percentage

1 Yes, staff took me

2 Yes, family took me

3 No

Total specific responses

4 No, but this was not possible due to medical reasons

Missing responses

4672

1594

767

7033

1898

66%

23%

11%

100%

305

Answered by all

B8 After your baby was admitted to the neonatal unit, was your partner or companion able to see your baby

as soon as they wanted?

Number Percentage

1 Yes

2 No

Total specific responses

3 No, but this was not possible for medical reasons

4 No partner/companion was involved

Missing responses

Answered by all

8137

404

8541

462

130

103

95%

5%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 65

B9 After you gave birth, was a partner or family

member allowed to stay with you overnight?

Number Percentage

1 Yes

2 No

Total specific responses

3 This was not wanted or needed

Missing responses

1352

5951

7303

1742

19%

81%

100%

191

Answered by all

B10 When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s

condition as soon as you wanted?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, I would have liked to have spoken to somebody earlier

Total specific responses

Missing responses

Answered by all

5947

2485

690

9122

114

65%

27%

8%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 66

B11 When your partner or companion first visited the unit, were they able to speak to a doctor or nurse

about your baby’s condition as soon as they wanted?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, but they would have liked to have spoken to somebody earlier

Total specific responses

4 No partner/companion was involved

Missing responses

5910

2451

595

8956

150

66%

27%

7%

100%

130

Answered by all

B12 When you first visited your baby, were you given enough information about the neonatal unit

(such as rules, procedures and facilities for

parents?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 Can't remember

Missing responses

Answered by all

5053

2383

1379

8815

310

111

57%

27%

16%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 67

B13 When you first visited your baby, was the purpose of the machines, monitors and alarms used

in the neonatal unit clearly explained to you?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 Don't know / Can't remember

Missing responses

4725

2581

1459

8765

276

195

Answered by all

B14 When you first visited the unit, were infection control practices explained to you, such as hand

washing and procedures for visitors?

Number Percentage

54%

29%

17%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 Don't know / Can't remember

Missing responses

Answered by all

6626

1316

1013

8955

173

108

74%

15%

11%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 68

Being transferred to another unit

C1 Was your baby ever transferred (moved) to a

neonatal unit at a different hospital?

Number Percentage

1 Yes

2 No, s/he stayed in the same hospital

Total specific responses

Missing responses

1131

7993

9124

112

13%

87%

100%

Answered by all

C2 Were you and your baby ever cared for in

separate hospitals?

Number Percentage

1 Yes

2 No

Total specific responses

Missing responses

373

753

1126

11

33%

67%

100%

Answered by those whose baby was transferred to a different unit

C3 How many different hospitals did your baby stay

in?

Number Percentage

1 Two

2 Three

3 Four or more

Total specific responses

969

122

23

1114

87%

11%

2%

100%

Missing responses 20

Answered by those whose baby was transferred to a different unit

Copyright 2011 Picker Institute Europe. All rights reserved. Page 69

C4 Did staff clearly explain to you why your baby was

being transferred to a different hospital?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 An explanation was not needed

Missing responses

894

147

24

1065

61

14

Answered by those whose baby was transferred to a different unit

C5 Did you feel you were given enough warning by

staff that your baby was going to be transferred?

Number Percentage

84%

14%

2%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

607

236

181

1024

4 No, but the transfer(s) was an emergency

Missing responses

93

21

Answered by those whose baby was transferred to a different unit

59%

23%

18%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 70

C6 In your opinion, were staff in the new unit fully

aware of the care your baby had received so far?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 Don't know / Can't remember

Missing responses

727

277

70

1074

55

13

Answered by those whose baby was transferred to a different unit

C7 Were you given enough information about the hospital/unit where your baby was being transferred

(such as location and facilities)?

Number Percentage

69%

25%

6%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

662

316

102

1080

4 This information was not needed

Missing responses

50

11

Answered by those whose baby was transferred to a different unit

62%

29%

9%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 71

Staff on the neonatal unit

D1 When you visited the unit, did the staff caring for

your baby introduce themselves to you?

Number Percentage

1 Yes, all of the staff introduced themselves

2 Some of the staff introduced themselves

3 Very few or none of the staff introduced themselves

Total specific responses

4 Don't know / Can't remember

Missing responses

5099

3310

607

9016

100

56%

37%

7%

100%

120

Answered by all

D2 Were you told which nurse was responsible for your baby’s care each day s/he was in the neonatal

unit?

Number Percentage

1 Yes

2 No

Total specific responses

Missing responses

Answered by all

7826

1276

9102

134

86%

14%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 72

D3 Did staff keep you up to date with your baby’s

condition and progress?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 I had no worries or concerns

Missing responses

Answered by all

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

7188

1651

287

9126

110

79%

Answered by all

D4 Were you able to talk to staff on the unit about

your worries and concerns?

Number Percentage

18%

3%

100%

6857

1895

268

9020

104

112

76%

21%

3%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 73

D5 Were you able to speak to a doctor about your

baby as much as you wanted?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No

Total specific responses

4 I did not want or need to speak to a doctor

Missing responses

3133

4034

1657

8824

305

36%

107

Answered by all

D6 Were the nurses on the unit sensitive to your

emotions and feelings?

Number Percentage

46%

19%

100%

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

Answered by all

6656

2060

397

9113

123

73%

23%

4%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 74

D7 Were the doctors on the unit sensitive to your

emotions and feelings?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 I had no contact with doctors on the unit

Missing responses

5312

2594

508

8414

701

63%

31%

6%

100%

121

Answered by all

D8 In your opinion, was important information about your baby passed on from one member of staff to

another?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No, information was not passed on

Total specific responses

Missing responses

Answered by all

6419

2169

484

9072

164

71%

24%

5%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 75

D9 Did staff give you conflicting information about

your baby's condition or care?

Number Percentage

1 Yes, often

2 Yes, sometimes

3 No, not at all

Total specific responses

Missing responses

1623

2392

5028

9043

193

18%

26%

56%

100%

Answered by all

D10 As far as you know, did staff wash or clean their

hands before touching your baby?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No

Total specific responses

4 Don't know / Can't remember

Missing responses

7732

525

74

8331

805

93%

6%

1%

100%

100

Answered by all

D11 Did staff refer to your baby by his/her first name?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No

Total specific responses

4 My baby did not have a name

Missing responses

Answered by all

7251

980

302

8533

577

126

85%

11%

3%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 76

D12 Overall, did staff treat you with respect and

courtesy?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

7823

1133

159

9115

121

86%

12%

2%

100%

Answered by all

D13 Overall, did you have confidence and trust in the

staff caring for your baby?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

Answered by all

7796

1105

206

9107

129

86%

12%

2%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 77

Your involvement in your baby’s care

E1 Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy

changing and feeding?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, I was not involved as much as I wanted

Total specific responses

4 No, my baby was too ill

Missing responses

7387

1254

457

9098

61

77

81%

14%

5%

100%

Answered by all

E2 Was your partner or companion involved as much as they wanted in the day-to-day care of your baby,

such as nappy changing and feeding?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, they were not involved as much as they wanted to be

Total specific responses

4 No, my baby was too ill

5 I do not/did not have a partner

Missing responses

Answered by all

6788

1588

500

8876

70

210

80

77%

18%

6%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 78

E3 Were you encouraged to touch, hold and comfort

your baby?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

7047

1667

448

9162

74

Answered by all

E4 Did you have as much ‘kangaroo care’ (skin- to-

skin contact) with your baby as you wanted?

Number Percentage

77%

19%

5%

100%

1 Yes, definitely

2 Yes, to some extent

3 No, not as much kangaroo care as wanted

5 I did not know about kangaroo care

Total specific responses

4 No, but this was not possible for medical reasons

Missing responses

4011

1690

1515

837

8053

1041

50%

21%

19%

11%

100%

142

Answered by all

E5 Did the doctors and nurses include you in

discussions about your baby’s care and treatment?

Number Percentage

1 Yes, always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

Answered by all

4996

3250

919

9165

71

55%

36%

10%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 79

E6 Were you told about any changes in your baby’s

condition or care?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No, I was not told about changes

Total specific responses

4 Not sure / Can't remember

Missing responses

6997

1727

327

9051

115

70

78%

19%

4%

100%

Answered by all

E7 When a ward round was taking place, were you allowed to be present when your baby was being

discussed?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No, I was not allowed to be there

Total specific responses

4 Not sure / Don't know

Missing responses

Answered by all

4953

1390

1505

7848

1260

128

63%

18%

19%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 80

E8 Did staff arrange your baby’s care (such as weighing, bathing) to fit in with your usual visiting

times?

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

Answered by all

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

4899

2106

1842

8847

389

55%

24%

21%

100%

Answered by all

E9 Overall, did staff help you feel confident in caring

for your baby?

Number Percentage

6992

1758

370

9120

116

77%

19%

4%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 81

E10 If you wanted to express breast milk for your baby, were you given the support you needed from

neonatal staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to express milk

5 I could not express milk

Missing responses

5390

1223

482

7095

1567

377

197

Answered by all

E11 Were you given the equipment you needed,

such as a breast pump and sterilisation equipment?

Number Percentage

76%

17%

7%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

5982

611

495

7088

Missing responses 42

Answered by those who could express breast milk

85%

8%

7%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 82

E12 Were you given enough privacy for expressing

milk for your baby?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, and it bothered me

4 No, but I did not mind

Total specific responses

Missing responses

5344

1133

304

171

6952

171

Answered by those who could express breast milk

E13 Were there facilities on the neonatal unit for the

storage of breast milk?

Number Percentage

77%

16%

4%

3%

100%

1 Yes

2 No

Total specific responses

3 Don't know / Can't remember

Missing responses

Answered by all

6998

74

7072

1247

393

99%

1%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 83

E14 If you wanted to breastfeed your baby were you

given enough support to do this from neonatal staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to breastfeed my baby

5 My baby was unable to breastfeed for medical reasons

Missing responses

5095

1282

511

6888

1207

383

261

Answered by those who could express breast milk

E15 Were you given enough privacy for breast

feeding your baby?

Number Percentage

74%

19%

8%

100%

1 Yes, definitely

2 Yes, to some extent

3 No, and it bothered me

4 No, but I did not mind

Total specific responses

Missing responses

4540

1507

431

329

6807

109

Answered by those who could breast feed their baby

67%

22%

6%

5%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 84

E16 If you bottle fed your baby (formula milk) were you given enough support to do this from neonatal

staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to bottle feed my baby

5 My baby was unable to bottle feed for medical reasons

Missing responses

Answered by all

4028

1105

282

5415

2199

269

1353

74%

20%

5%

100%

Environment and facilities

F1 Were you given enough privacy when discussing

your baby’s care on the neonatal unit with staff?

Number Percentage

5703 63% 1 Yes, always or nearly always

2 Yes, to some extent

3 No

4 No, but I did not mind

Total specific responses

Missing responses

Answered by all

2128

650

641

9122

114

23%

7%

7%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 85

F2. Thinking about the environment of the unit which, if any, of the following could have

been improved?

Number

% (Base:

Respondents)

% (Base:

Responses)

F2_1 Noise levels 1053 12% 10%

F2_2 Light levels

F2_3 Temperature

F2_4 Cleanliness

F2_5 Baby's comfort (eg baby nests, gel pads)

827

1378

418

713

9%

15%

5%

8%

8%

13%

4%

7%

F2_6 Other

F2_7 No improvements were needed

708

5497

Total

1 Missing responses

8759

477

Answered by all

F3 Was there enough space for you to sit alongside

your baby’s cot in the unit?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No, never

Total specific responses

Missing responses

Answered by all

5944

2833

308

9085

151

66%

31%

3%

100%

8%

63%

120%

7%

52%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 86

F4 In your opinion, was there adequate security on

the neonatal unit?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

6995

1759

373

9127

109

77%

19%

4%

100%

Answered by all

F5 If you (and/or your partner or companion) wanted to stay overnight to be close to your baby, did the

hospital offer you accommodation?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 I did not want/need to stay overnight

Missing responses

3102

1181

2743

7026

1835

44%

375

Answered by all

F6 Were you able to visit your baby on the unit as

much as you wanted to?

Number Percentage

17%

39%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not visit my baby

Missing responses

Answered by all

8050

742

215

9007

66

163

89%

8%

2%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 87

F7. If you were not able to visit your baby as much as you wanted, what was the

reason(s) for this?

F7_1 My baby was at a different hospital

Number

18

% (Base:

Respondents)

2%

% (Base:

Responses)

1%

F7_2 I was not well enough to visit my baby

F7_3 The unit was a long way from home

F7_4 I needed to care for my other children

F7_5 It was expensive to travel to the unit

300

95

189

72

39%

12%

25%

9%

30%

10%

19%

7%

33%

100%

F7_6 Other 347 43%

Total

1 Missing responses

786

189

130%

Answered by those who were not able to visit their baby as much as they wanted

F8 If you had your other children with you when visiting the unit, was there somewhere they could

play?

Number Percentage

2 Yes, there was a supervised play room/area

3 Yes, there was an unsupervised play room/area

4 No, there was nowhere for them to play

5 Children were not allowed to visit the unit

Total specific responses

1 I do not have any other children

Missing responses

Answered by all

322

1816

1201

376

3715

4723

798

9%

49%

32%

10%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 88

F9 Were you able to contact the unit by telephone

whenever you needed to?

1 Yes, always or nearly always

2 Yes, sometimes

3 No, never

Total specific responses

4 I did not contact the unit by telephone

Missing responses

Answered by all

Number Percentage

6083 92%

396

144

6623

2328

285

6%

2%

100%

Information and support for parents

G1Were you given enough written information to help you understand your baby’s condition and

treatment?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, I was not given enough written information

4 I did not get any written information

Total specific responses

5 I did not want or need any written information

Missing responses

Answered by all

3299

1742

967

2264

8272

820

144

40%

22%

12%

27%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 89

G2 If you needed help understanding written or spoken English, was information given in a language

you could understand?

Number Percentage

1 Yes

2 No

Total specific responses

3 I do not need help understanding English

Missing responses

714

197

911

7993

332

Answered by all

G3 When you asked questions about your baby’s condition and treatment, did you get answers you

could understand?

Number Percentage

78%

22%

100%

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 I did not ask any questions

Missing responses

Answered by all

6639

2222

259

9120

53

63

73%

25%

3%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 90

G4 Did a member of staff explain the purpose of any

tests your baby had in a way you could understand?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 My baby did not have any tests

Missing responses

7159

1657

242

9058

105

79%

18%

3%

100%

73

Answered by all

G5 If your baby had any surgery, did a member of staff explain the operation and its outcome in a way

you could understand?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 My baby did not have any surgery

Missing responses

Answered by all

562

98

68

728

8220

288

77%

14%

9%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 91

G6 Did you read your baby’s medical notes (not just the nursing notes) while they were in the neonatal

unit?

Number Percentage

1 Yes

2 No, but I wanted to read them

3 No, but I did not want to read them

4 I did not know about or see the medical notes

Total specific responses

Missing responses

4005

1809

757

2519

44%

20%

8%

27%

9090

146

100%

Answered by all

G7 Were you offered emotional support or

counselling services?

Number Percentage

1 Yes

2 No, but I would have liked to have been offered this

3 I did not need any emotional support or counselling

Total specific responses

Missing responses

Answered by all

1653

2295

5128

9076

160

18%

25%

56%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 92

G8 Were you given information about any help you could get with travelling expenses, parking costs or

food vouchers?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want/need this information

Missing responses

1845

1656

3919

7420

1684

25%

22%

53%

100%

132

Answered by all

G9 Did staff give you any information about parent

support groups, such as Bliss or other local groups?

Number Percentage

1 Yes, staff gave me this information

2 No, but this information was available in the unit (e.g. a leaflet in the parents’ room)

3 No, I did not get this information

Total specific responses

4 Don’t know / Can’t remember

Missing responses

Answered by all

2524

2748

2697

7969

1118

149

32%

35%

34%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 93

Discharge from the neonatal unit

H1 In total, how long did your baby stay in neonatal

care (include all the hospitals they stayed in)?

Number Percentage

1 Up to one week

2 More than 1 week but less than 4 weeks

3 More than 4 weeks but less than 8 weeks

4 More than 8 weeks but less than 12 weeks

5 More than 12 weeks

Total specific responses

Missing responses

4291

3252

918

372

47%

36%

10%

4%

252

9085

151

3%

100%

Answered by all

H2 In your opinion, was your baby’s stay in neonatal

care?

Number Percentage

1 Shorter than was needed

2 About right

3 Longer than was needed

Total specific responses

Missing responses

Answered by all

446

7901

779

9126

110

5%

86%

9%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 94

H3 When your baby was discharged from the

neonatal unit, where did they go next?

Number Percentage

1 A hospital maternity ward

2 Another ward in the hospital

3 Home

4 Somewhere else

Total specific responses

Missing responses

2634

358

6090

76

9158

78

29%

4%

67%

1%

100%

Answered by all

H4 Were you offered accommodation overnight at the

hospital before your baby came home?

Number Percentage

1 Yes

2 No, but I would have liked it

3 No, but I did not want or need it

Total specific responses

Missing responses

4827

238

970

80%

4%

16%

6035

87

100%

Answered by all

H5 Did you feel prepared for your baby’s discharge

from neonatal care?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

Answered by all

6816

1986

356

9158

78

75%

22%

4%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 95

H6 Did your baby need any special equipment when

s/he was discharged from the unit?

Number Percentage

1 Yes

2 No

Total specific responses

Missing responses

860

8310

9170

66

Answered by all

H7 Were you given enough information and guidance on using the equipment when your baby

left the neonatal unit?

Number Percentage

9%

91%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

677

139

47

863

8

Answered by those whose baby needed special equipment when they were discharged home

H8 Were you given enough information on what to expect in terms of your baby’s progress and

recovery?

Number Percentage

78%

17%

5%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

Answered by all

4912

2854

1334

9100

136

54%

32%

15%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 96

H9. After your baby arrived home, did you have contact with neonatal staff?

H9_1 Yes, by telephone

Number

2055

% (Base:

Respondents)

23%

% (Base:

Responses)

19%

1659 18% 15% H9_2 Yes, staff from the unit visited me at home

H9_3 Yes, my baby had a follow up hospital appointment

2711 30% 24%

H9_4 No, but I would have liked contact with neonatal staff

H9_5 No, I did not want/need contact with neonatal staff

969

3798

11%

41%

9%

34%

Total

1 Missing responses

9156

80

122% 100%

Answered by all

H10. After your baby arrived home, which of the following health professionals did you

see?

Number

% (Base:

Respondents)

% (Base:

Responses)

H10_1 Health visitor 8813 96% 43%

H10_2 Midwife

H10_3 Neonatal nurse

H10_4 GP

H10_5 Other professional

H10_6 None

Total

1 Missing responses

Answered by all

6704

1588

2811

769

48

9192

44

73%

17%

31%

9%

1%

225%

32%

8%

14%

4%

0%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 97

H11 If you saw a health visitor, did s/he have enough information about the development of babies who

had received neonatal care?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not see a health visitor

Missing responses

3444

3072

2340

8856

133

0

Answered by those who had seen a health professional

H12 Overall, after your baby arrived home, did you

get enough support from health professionals?

Number Percentage

39%

35%

26%

100%

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

5324

2880

888

9092

0

Answered by those who had seen a health professional

58%

32%

10%

100%

Care in another hospital

J1 Did your baby stay in a neonatal unit in more than

one hospital?

Number Percentage

1 Yes

2 No

Total specific responses

Missing responses

Answered by all

1126

7798

8924

312

13%

87%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 98

J2 Did your baby spend most of its time in the neonatal unit s/he was discharged from (ie the last

unit they stayed in)?

Number Percentage

1 Yes, my baby spent most time in the unit s/he was discharged from

2 No, my baby spent most of its time in another unit

3 My baby stayed the same amount of time in two or more different units

Total specific responses

Missing responses

701

289

123

63%

26%

11%

1113

24

100%

Answered by those whose baby stayed in more than one neonatal unit

J4 Did staff keep you up to date with your baby’s

condition and progress?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

267

48

6

321

3

85%

14%

2%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 99

J5 Were you able to speak to a doctor about your

baby as much as you wanted?

Number Percentage

1 Yes, always or nearly always

2 Yes, to some extent

3 No

Total specific responses

4 I did not want or need to speak to a doctor

Missing responses

189

85

40

314

4

61%

28%

12%

100%

4

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J6 Were the nurses on the unit sensitive to your

emotions and feelings?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

240

74

9

323

4

74%

24%

3%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 100

J7 Were the doctors on the unit sensitive to your

emotions and feelings?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

4 I had no contact with doctors on the unit

Missing responses

221

74

14

309

12

72%

25%

4%

100%

5

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J8 Overall, did staff treat you with respect and

courtesy?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

276

35

10

321

5

86%

11%

2%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 101

J9 Overall, did staff help you feel confident in caring

for your baby?

Number Percentage

1 Yes, always or nearly always

2 Yes, sometimes

3 No

Total specific responses

Missing responses

276

36

9

321

4

86%

12%

3%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J10 Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy

changing and feeding?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, I was not involved as much as I wanted

Total specific responses

4 No, my baby was too ill

Missing responses

233

56

17

306

14

6

77%

18%

5%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 102

J11 Did you have as much kangaroo care (skin to

skin contact) with your baby as you wanted?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No, not as much kangaroo care as wanted

5 I did not know about kangaroo care

Total specific responses

4 No, but this was not possible for medical reasons

Missing responses

132

52

43

23

250

68

54%

20%

16%

10%

100%

8

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J12 Overall, did staff help you feel confident in

caring for your baby?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

252

64

6

322

77%

21%

2%

100%

Missing responses 6

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 103

J13 If you wanted to express breast milk for your baby, were you given the support you needed from

neonatal staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to express milk

5 I could not express milk

Missing responses

224

42

18

284

26

79%

16%

6%

100%

14

5

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J14 If you wanted to breastfeed your baby were you

given enough support to do this from neonatal staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to breastfeed my baby

152

41

21

214

39

70%

19%

12%

100%

5 My baby was unable to breastfeed for medical reasons

Missing responses

66

8

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 104

J15 If you bottle fed your baby (formula milk) were you given enough support to do this from neonatal

staff?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

4 I did not want to bottle feed my baby

5 My baby was unable to bottle feed for medical reasons

Missing responses

111

37

10

158

73

65

73%

21%

6%

100%

28

Answered by those whose baby stayed in another unit for most of its time in neonatal care

J16 Were you offered emotional support or

counselling?

Number Percentage

1 Yes

2 No, but I would have liked to have been offered this

3 I did not need any emotional support or counselling

Total specific responses

Missing responses

119

102

98

319

10

40%

32%

29%

100%

Answered by those whose baby stayed in another unit for most of its time in neonatal care

Copyright 2011 Picker Institute Europe. All rights reserved. Page 105

You and your baby

K1 Did you give birth to a single baby, twins or more

in your most recent pregnancy?

Number Percentage

1 A single baby

2 Twins

3 Triplets, quads or more

Total specific responses

Missing responses

8416

914

29

9359

83

Answered by all

K2 Roughly how many weeks pregnant were you

when your baby was born?

Number Percentage

90%

10%

0%

100%

69 1% 1 Before I was 25 weeks pregnant

2 When I was 25 to 29 weeks pregnant

3 When I was 30 to 32 weeks pregnant

4 When I was 33 to 37 weeks pregnant

5 When I was 38 weeks pregnant or more

Total specific responses

Missing responses

Answered by all

643

1130

3772

3719

9333

109

7%

12%

40%

40%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 106

K3 How much did your baby weigh at birth?

Number Percentage

1 Less than 1000g (1kg / 2lb

3oz)

2 1000g to 1500g (1kg to

1.5.kg / 2lb 3oz to 3lb 5oz)

3 1500g to 2500g (1.5kg to

2.5kg / 3lb 5oz to 5lb 8oz)

4 More than 2500g (2.5kg /

5lb 8oz)

Total specific responses

Missing responses

372

879

3099

4952

4%

9%

33%

53%

9302

140

100%

Answered by all

K4 How many babies have you given birth to before

this pregnancy?

Number Percentage

1 None

2 1-2

3 3 or more

Total specific responses

Missing responses

5365

3412

610

9387

55

Answered by all

K5 Have you previously had a baby admitted to a

neonatal unit?

Number Percentage

57%

36%

6%

100%

1 Yes

2 No

Total specific responses

Missing responses

963

3061

4024

18

24%

76%

100%

Answered by those who had previously given birth to a baby

Copyright 2011 Picker Institute Europe. All rights reserved. Page 107

K6 Who filled in this questionnaire?

Number Percentage

1 The baby’s mother

2 The baby’s father

3 Parents together

4 The baby’s guardian(s)

Total specific responses

Missing responses

7604

308

1342

11

9265

177

Answered by all

K7 To which of these ethnic groups would you say

you belong?

Number Percentage

82%

3%

14%

0%

100%

1 White

2 Mixed

3 Asian or Asian British

4 Black or Black British

5 Chinese or Other Ethnic

Group

Total specific responses

999 Missing

7906

151

793

354

235

9439

3

100%

Answered by all

K8 Do you have a long-standing physical or mental

health problem or disability?

Number Percentage

84%

2%

8%

4%

2%

1 Yes

2 No

3 I'd rather not say

Total specific responses

Missing responses

Answered by all

486

8791

108

9385

57

5%

94%

1%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 108

K9 Does this problem or disability affect your day-

to-day activities?

Number Percentage

1 Yes, definitely

2 Yes, to some extent

3 No

Total specific responses

Missing responses

125

190

167

482

8

Answered by those who have a long-standing physical or mental health problem or disability

Mother's age group from response or sample if

missing

Number Percentage

26%

39%

35%

100%

1 16-27

2 28-31

3 32-35

4 36 and over

Total specific responses

Missingdata

Answered by all

2141

2153

2319

2732

9345

97

23%

23%

25%

29%

100%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 109

Appendix 6: Results by different groups of respondents

Mean scores

It was important to examine the extent to which parents’ experiences of neonatal care were influenced by their demographic characteristics, the ‘health status’ of their baby, and the type of unit that their baby was discharged from. To undertake this analysis, question response options were scored using a scale of 0 to 100. A response option that was assigned a score of 100 reflects the most positive parent experience, while a score of

0 indicates the worst experience. An overall score was calculated for each respondent by taking a mean of the scores to each rated question. Higher mean scores indicated a more positive parent experience.

This analysis showed that older parents tend to report more positive experiences than younger respondents, as do parents of babies born at a later gestational age (and/or babies of greater birth weight and/or babies that had shorter stay in neonatal care). For the unit-level comparison of results (i.e. unit-level benchmark reporting), the data was standardised by the age of respondents and by the gestational age of their baby at birth.

This was to ensure that no unit appeared better or worse than another because of its respondent profile allowing a more accurate comparison of results.

Demographic characteristics

Maternal age

An analysis of variance (table 1) showed that the overall mean score was significantly higher for those mothers in the older age groups, suggesting that older respondents tend to report more positive experiences of neonatal services than younger respondents

(f=2.2, df=4, p=0.62). This finding corresponds with the results of an analysis based on the national surveys of patients, which showed that older patients generally gave higher scores (i.e. answer more favourably about their experience) than younger patients (ref).

Table 1 Mean scores by maternal age group

Aged 16-27 years

N

2141

Mean score

74

Standard deviation

16.33

Aged 28-31years

Aged 32-35 years

2153

77

78

14.63

14.21

2319

Aged 36 years and over 79 14.22

Total

2732

9345

77 14.93

(f=46.2, df=3, p>0.001)

95% Confidence interval for mean

Lower bound

Upper bound

73.19 74.58

76.21

77.41

77.44

78.56

78.11

76.67

79.18

77.27

Copyright 2011 Picker Institute Europe. All rights reserved. Page 110

Ethnic group

Although there were some differences in the overall mean score by the respondent’s ethnic group, these were not statistically significant at the 0.001 level (table 2), implying that ethnicity does not have a strong influence on how parents’ report their experiences of neonatal care. Due to small numbers of respondents for some ethnic groups, the data were also analysed by combining all non-white ethnic groups and comparing the overall mean score for this group to the mean score for white respondents (table 3). There was not a significant difference between the two groups with the overall mean score being 77 for both.

Table 2 Mean scores by respondent ethnic group

White

N

7906

Mean score

77

Standard deviation

14.97

95% Confidence interval for mean

Lower bound

76.68

Upper bound

77.34

Mixed 73 16.15 70.72 75.92

151

Black or Black British 76 14.85 75.29 77.36

793

Asian or Asian British 78 13.28 76.72 79.49

354

Chinese or other ethnic group

Total

235

78 14.00 76.49 80.09

9439

77 14.91 76.66 77.26

(f=3.6, df=4, p=0.006)

Table 3 Mean scores by white and non-white ethnic groups

White

N

7906

Mean score

77

Standard deviation

14.97

95% Confidence interval for mean

Lower bound

76.68

Upper bound

77.34

Non-white 77 14.56 76.01 77.47

1533

Total 77 14.91 76.66 77.26

9439

(f=0.4, df=1, p=0.526)

Baby’s health status

Questions K2– ‘Roughly how many weeks pregnant were you when your baby was born?’,

K3 ‘How much did your baby weight at birth?’ and H1 ‘In total, how long did your baby stay in neonatal care?’ can be used as proxies for the baby’s health status as it could be assumed that those babies born at any earlier gestational age, and/or those babies born of lower weight and/or babies that stayed in neonatal care for a longer period of time had more complex health needs requiring a greater level of neonatal care.

Table 4 shows the overall mean score was higher for parents of babies who were born at any earlier gestation (78), than those parents of babies born at 38 weeks or more (76).

This difference in the overall mean rating was significant (f=39.7, df=1, p<0.001). The overall mean score was also significantly higher for those parents of babies born with a lower birth weight (Table 5) and for those parents of babies who had a longer length of stay in neonatal care (Table 6). These findings suggest that parents of babies with

Copyright 2011 Picker Institute Europe. All rights reserved. Page 111

greater or more complex health needs report a more positive experience of neonatal care overall.

Table 4 Mean scores by baby’s gestational age at birth

37 weeks or less

N

5614

Mean score

78

Standard deviation

14.15

95% Confidence interval for mean

Lower bound

Upper bound

77.42 78.16

38 weeks or more 76 15.84 75.30 76.32

3719

Total 77 14.88 76.70 77.30

9333

(f=39.7, df=1, p>0.001)

Table 5 Mean scores by baby’s weight at birth

Less than 1000g

N

372

Mean score

80

Standard deviation

95% Confidence interval for mean

Lower bound

Upper bound

13.39 79.05 81.78

1000g to 1500g

879

79 13.04 77.96 79.68

1500g to 2500g

3099

78 14.00 77.50 78.49

More than 2500g

Total

4952

76 15.76 75.25 76.13

9302

77 14.92 76.64 77.25

(f=28.4, df=3, p>0.001)

Table 6 Mean scores by baby’s length of stay in the neonatal unit

Up to 1 week

N

4395

Mean score

75

Standard deviation

16.10

95% Confidence interval for mean

Lower bound

74.88

Upper bound

75.84

More than 1 week 79 13.51 78.13 78.89

4874

Total 77 14.88 76.71 77.32

9269

(f=104.8, df=1, p>0.001)

Type of neonatal unit

The overall mean score was compared between the three different types of neonatal unit:

Special Care Baby Units, Local Neonatal Units and Neonatal Intensive Care Units (Table 7).

This analysis showed that the overall mean score did not differ significantly suggesting that the unit type does not have a strong influence on parents’ reported experiences of the neonatal care and treatment their baby received.

Table 7 Mean scores by the type of neonatal unit

N

Mean score

Standard deviation

95% Confidence interval for mean

Lower bound

Upper bound

77 14.77 76.75 77.95

Special Care Baby Unit 2327

Copyright 2011 Picker Institute Europe. All rights reserved. Page 112

Local Neonatal Unit

Neonatal Intensive Care

Unit

Total

(f=1.1, df=2, p=0.337)

4241

2874

9442

77

77

77

14.85

15.13

14.92

76.40

76.25

76.66

77.30

77.36

77.26

Survey questions by groups of respondents

Table 8 shows the percentage of parents that responded to each response option for each survey question, broken down by the baby’s gestation, the baby’s birth weight and their length of time in neonatal care. Table 9 shows the results broken down by the type of unit that a baby was discharged from, parental age and ethnicity. Pearson’s chi-square tests were used to determine if any differences in the proportions of respondents by these sub groups were statistically significant. However, further analysis is required to unpick this data in detail.

Copyright 2011 Picker Institute Europe. All rights reserved. Page 113

Table 8: A breakdown of results by different groups of respondents (Baby characteristics)

*The Chi-square statistic is significant at the 0.05 level

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

A1 Before your baby was born, did you know that they might need care in a neonatal unit?

1 Yes

2 No

A2 Before your baby was born, were you given the chance to visit the neonatal unit?

A3 Before your baby was born, did a member of staff from the neonatal unit talk to you about what to expect after the birth?

1 Yes

2 No, but I did not mind

3 No, but I would have liked this

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes

B2 After the birth, were you able to touch your baby before s/he was taken to the neonatal unit?

B3 Were you given a photograph of your baby?

2 No

1 Yes

2 No, but I would have liked this

37 weeks or less

46.4%

53.6%

38 weeks or more

11.2%

88.8%

Chi-

Square df Sig.

1262 1 .000*

Less than

1000g to

1500g to

More than

1000g 1500g 2500g 2500g

59.4% 56.5% 46.5% 17.1%

40.6% 43.5% 53.5% 82.9%

Chi-

Square df Sig.

1163 3 .000*

Up to 1 week

More than 1 week

18.6% 44.9%

Chi-

Square df Sig.

727 1 .000*

81.4% 55.1%

41.6%

36.8%

21.6%

36.8%

21.6%

41.6%

80.5%

19.5%

52.8%

22.2%

32.3%

46.4%

21.2%

26.8%

17.7%

55.5%

92.3%

7.7%

35.7%

24.5%

Copyright 2011 Picker Institute Europe. All rights reserved.

16

26

212

283

2 .000*

1 .000*

2 .000*

47.8%

31.8%

50.0%

30.7%

41.6% 31.0%

35.9% 47.3%

20.4% 19.3% 22.5% 21.8%

2 .000*

62.3% 44.7% 34.7% 23.4%

15.9% 28.2% 20.5% 19.1%

21.7% 27.1% 44.8% 57.5%

35.3% 55.1% 84.3% 92.0%

64.7% 44.9% 15.7% 8.0%

69.7% 62.8% 51.6% 37.7%

14.6% 19.7% 23.0% 24.4%

Page 114

57

189

905

380

6

6 .000*

23.7% 39.8%

17.9% 22.1%

58.4% 38.1%

93.1% 77.3%

3 .000*

6

.000*

.000*

31.2% 43.7%

48.6% 34.3%

20.3% 22.0%

6.9% 22.7%

34.5% 56.4%

25.0% 21.3%

50

99

381

474

2

2

1

2

.000*

.000*

.000*

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

37 weeks or less

25.0%

38 weeks or more

39.7%

Chi-

Square df Sig.

B4 After you gave birth, were you ever cared for in the same ward as mothers who had their baby with them?

3 No, but I took a photograph myself

1 Yes, and this bothered me

2 Yes, but I did not mind

3 No, I stayed in a separate room/area

1 Yes

B5 After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

B6 How long did you wait before a member of staff came to talk to you about your baby’s condition and treatment?

2 No

1 Less than one hour

2 More than one hour but less than two

3 More than two hours but less than four

4 Four hours or more

33.4%

24.9%

41.7%

75.6%

24.4%

58.5%

21.2%

10.5%

9.7%

31.2%

31.1%

37.7%

81.6%

18.4%

58.2%

19.4%

11.7%

10.7%

Copyright 2011 Picker Institute Europe. All rights reserved.

40

43

5

2

3

.000*

1 .000*

16.9%

Less than

1000g

33.1%

15.3%

51.6%

78.4%

53.3%

22.9%

13.3%

1000g to

1500g

34.8%

18.5%

46.7%

73.5%

49.7%

24.4%

10.5% 14.2%

11.8%

1500g to

2500g

More than

2500g

15.7% 17.5% 25.4% 37.8%

32.3% 32.5%

27.1% 30.0%

40.6% 37.5%

74.5% 80.8%

21.6% 26.5% 25.5% 19.2%

60.9% 58.4%

20.6% 19.4%

9.6% 11.6%

8.9% 10.5%

Page 115

Chi-

Square df Sig.

84

50

29

6

3

9

.000*

.000

*

.001*

Up to 1 week

More than 1 week

40.5% 22.3%

Chi-

Square df Sig.

29.4% 35.4%

33.0% 21.8%

37.6% 42.7%

81.3% 75.1%

18.7% 24.9%

60.9% 55.6%

19.5% 21.4%

10.4% 11.9%

9.2% 11.0%

139

48

16

2

1

3

.000*

.000*

.001*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

37 weeks or less

63.2%

38 weeks or more

71.2%

Chi-

Square df Sig.

B7 After your baby was admitted to the neonatal unit, were you able to see your baby as soon as you wanted?

1 Yes, staff took me

2 Yes, family took me

3 No

1 Yes

B8 After your baby was admitted to the neonatal unit, was your partner or companion able to see your baby as soon as they wanted?

B9 After you gave birth, was a partner or family member allowed to stay with you overnight?

B10 When you first visited the unit, were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

2 No

1 Yes

2 No

1 Yes, definitely

2 Yes, to some extent

3 No, I would have liked to have spoken to somebody earlier

25.0%

11.8%

95.5%

4.5%

18.1%

81.9%

67.5%

25.6%

6.9%

19.3%

9.5%

95.0%

5.0%

19.1%

80.9%

61.5%

29.8%

8.7%

Copyright 2011 Picker Institute Europe. All rights reserved.

50

1

1

36

2

1

1

2

.000*

0.25

0.28

.000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

60.4% 56.6% 64.1% 69.6%

25.7% 27.4% 24.8% 20.5%

13.9%

95.5%

4.5%

34.7%

65.3%

75.1%

20.8%

4.1%

16.0%

93.8%

6.2%

23.8%

76.2%

71.7%

22.9%

5.5%

11.1% 9.9%

95.9% 95.1%

4.1% 4.9%

15.2% 18.1%

84.8% 81.9%

66.9% 61.8%

26.0% 29.5%

7.1% 8.7%

Page 116

Chi-

Square df Sig.

56

6

87

64

6

3

3

6

.000*

0.10

.000*

.000*

Up to 1 week

More than 1 week

70.2% 62.6%

Chi-

Square df Sig.

20.3% 25.2%

9.6% 12.1%

95.3% 95.3%

4.7%

16.6% 19.9%

83.4% 80.1%

62.6% 67.1%

28.6% 26.3%

8.8%

4.7%

6.6%

45

0

13

26

2

1

1

2

.000*

0.95

.000*

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

B11 When your partner or companion first visited the unit, were they able to speak to a doctor or nurse about your baby’s condition as soon as they wanted?

1 Yes, definitely

2 Yes, to some extent

3 No, but they would have liked to have spoken to somebody earlier

37 weeks or less

68.6%

25.4%

6.0%

38 weeks or more

61.9%

30.4%

7.7%

B12 When you first visited your baby, were you given enough information about the neonatal unit?

B13 When you first visited your baby, was the purpose of the machines, monitors and alarms used in the neonatal unit clearly explained to you?

B14 When you first visited the unit, were infection control practices explained to you, such as hand washing and procedures for visitors?

C1 Was your baby ever transferred (moved) to a neonatal unit at a different hospital?

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes

59.1%

26.6%

14.3%

56.1%

28.7%

15.1%

78.1%

13.3%

8.6%

16.2%

54.4%

28.1%

17.5%

50.4%

30.5%

19.0%

68.0%

16.7%

15.3%

6.5%

2 No, s/he stayed in the same hospital

83.8% 93.5%

C2 Were you and your baby ever cared for in separate hospitals?

1 Yes

2 No

31.3%

68.7%

39.8%

60.2%

Copyright 2011 Picker Institute Europe. All rights reserved.

Chi-

Square df Sig.

44

24

34

132

191

6

2

2

2

2

1

1

.000*

.000*

.000*

.000*

.000*

0.01

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

73.2% 72.1% 68.4% 62.7%

23.2% 22.9% 25.9% 29.5%

Chi-

Square df Sig.

3.6% 5.0% 5.7% 7.9%

71.8% 63.7% 57.8% 54.3%

20.9% 26.0% 26.9% 28.3%

7.3% 10.2% 15.4% 17.4%

60.9% 56.9% 56.4% 50.9%

29.2% 30.8% 27.7% 30.4%

9.9% 12.3% 15.9% 18.7%

89.9% 83.6% 77.8% 68.5%

7.9% 12.2% 13.0% 16.9%

2.2% 4.1% 9.1% 14.6%

53.3% 31.9% 10.9% 6.6%

46.7% 68.1% 89.1% 93.4%

31.3% 30.2% 31.3% 39.0%

68.7% 69.8% 68.7% 61.0%

Page 117

59

76

53

211

1033

7

6

6

6

6

3

3

.000*

.000*

.000*

.000*

.000*

0.08

More

Up to 1 week than 1 week

63.0% 68.5%

29.3% 25.8%

Chi-

Square df Sig.

7.7%

54.9% 59.3%

27.9% 26.6%

17.2% 14.1%

51.3% 56.1%

29.3% 29.6%

19.4% 14.3%

67.1% 80.3%

17.6% 12.1%

15.3%

5.6%

7.5%

2.4% 21.4%

97.6% 78.6%

41.1% 32.5%

58.9% 67.5%

35

23

44

220

763

3

2

2

2

2

1

1

.000*

.000*

.000*

.000*

.000*

0.07

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

C3 How many different hospitals did your baby stay in?

C4 Did staff clearly explain to you why your baby was being transferred to a different hospital?

C5 Did you feel you were given enough warning by staff that your baby was going to be transferred?

C6 In your opinion, were staff in the new unit fully aware of the care your baby had received so far?

C7 Were you given enough information about the hospital/unit where your baby was being transferred (such as location and facilities)?

1 Two

2 Three

3 Four or more

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

37 weeks or less

85.8%

11.7%

2.5%

84.4%

13.3%

38 weeks or more

91.8%

7.8%

.4%

82.8%

15.0%

Chi-

Square df Sig.

7 2 0.03

0 2 0.80

2.3%

57.7%

23.7%

2.1%

65.5%

21.6%

5 2 0.09

18.7%

65.9%

27.3%

12.9%

74.8%

19.6%

7 2 0.03

6.8%

61.7%

28.1%

5.7%

59.2%

34.3%

5 2 0.07

10.2% 6.4%

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

73.0% 85.5% 90.9% 93.0%

18.9% 12.7%

8.2% 1.8%

8.8%

.3%

6.4%

.6%

87.0% 83.9% 83.2% 84.1%

10.8% 13.4% 15.1% 14.0%

Chi-

Square df Sig.

68 6 .000*

3 6 0.86

More

Up to 1 week than 1 week

95.7% 86.2%

4.3% 11.5%

.0% 2.3%

83.5% 84.2%

13.4% 13.7%

Chi-

Square df Sig.

7 2 0.03

0 2 0.79

2.2% 2.7% 1.6% 1.9%

56.8% 58.8% 57.1% 64.7%

24.3% 23.1% 23.2% 21.9%

3.1% 2.0%

69.2% 58.6%

19.8% 23.6%

6 6 0.45 4 2 0.11

18.9% 18.1% 19.7% 13.4%

58.7% 64.3% 65.9% 77.2%

31.7% 28.1% 28.0% 17.9%

11.0% 17.8%

68.1% 67.7%

25.5% 25.6%

22 6 .001* 0 2 0.99

9.5% 7.6% 6.1% 4.9%

55.6% 64.7% 62.0% 60.2%

34.2% 25.7% 26.8% 33.0%

6.4% 6.7%

65.3% 60.8%

28.4% 29.7%

10 6 0.13 1 2 0.53

10.2% 9.7% 11.2% 6.8% 6.3% 9.5%

Copyright 2011 Picker Institute Europe. All rights reserved. Page 118

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

D1 When you visited the unit, did the staff caring for your baby introduce themselves to you?

1 Yes, all of the staff introduced themselves

2 Some of the staff introduced themselves

3 Very few or none of the staff introduced themselves

1 Yes

D2 Were you told which nurse was responsible for your baby’s care each day s/he was in the neonatal unit?

2 No

D3 Did staff keep you up to date with your baby’s condition and progress?

D4 Were you able to talk to staff on the unit about your worries and concerns?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

37 weeks or less

58.9%

38 weeks or more

53.2%

Chi-

Square df Sig.

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

64.7% 64.3% 59.3% 52.6%

Chi-

Square df Sig.

More

Up to 1 week than 1 week

50.5% 62.0%

Chi-

Square df Sig.

35.5%

5.7%

88.2%

11.8%

80.8%

16.8%

2.4%

77.7%

19.9%

2.4%

38.5%

8.3%

82.5%

17.5%

75.7%

20.0%

4.3%

73.5%

22.6%

3.9%

41

58

44

28

2

1

.000*

.000*

2 .000*

2 .000*

31.0%

4.4%

92.7%

7.3%

81.0%

31.6%

4.1%

92.9%

7.1%

83.1%

35.6% 38.8%

5.1% 8.5%

87.9% 82.9%

12.1% 17.1%

81.3% 76.1%

17.1% 15.7% 16.2% 19.9%

1.9% 1.1% 2.5% 4.0%

76.3% 75.9% 79.3% 73.6%

22.3% 22.5% 18.8% 22.2%

1.4% 1.6% 1.9% 4.1%

93

96

56

59

6 .000*

3 .000*

40.2% 33.7%

9.3% 4.4%

81.3% 90.4%

18.7% 9.6%

74.9% 82.5%

6 .000*

20.6% 15.8%

4.5% 1.8%

73.2% 78.6%

6 .000*

22.8% 19.5%

4.0% 2.0%

160

157

102

54

2

1

2

2

.000*

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 119

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

D5 Were you able to speak to a doctor about your baby as much as you wanted?

D6 Were the nurses on the unit sensitive to your emotions and feelings?

D7 Were the doctors on the unit sensitive to your emotions and feelings?

D8 In your opinion, was important information about your baby passed on from one member of staff to another?

D9 Did staff give you conflicting information about your baby's condition or care?

1 Yes, always or nearly always

2 Yes, to some extent

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No, information was not passed on

1 Yes, often

2 Yes, sometimes

3 No, not at all

37 weeks or less

36.6%

38 weeks or more

33.6%

Chi-

Square df Sig.

45.8%

17.6%

72.9%

23.0%

4.1%

62.8%

31.4%

5.8%

71.3%

24.1%

4.6%

18.9%

28.1%

53.1%

45.6%

20.8%

73.3%

22.0%

4.8%

63.3%

30.2%

6.5%

69.8%

23.7%

6.5%

16.5%

24.0%

59.5%

17

3

3

15

37

2

2

2

2

2

.000*

0.20

0.28

.000*

.000*

Less than

1000g

10.9%

71.0%

25.5% 26.3% 21.7% 22.4%

3.5% 2.9% 4.4% 4.8%

66.5% 61.4% 62.9% 63.0%

28.8% 33.9% 31.6% 30.2%

4.7% 4.7% 5.5% 6.8%

67.9% 68.8% 72.6% 70.0%

5.8%

1000g to

1500g

11.7%

70.8%

4.4%

1500g to

2500g

4.1%

More than

2500g

49.7% 42.9% 34.3% 33.1%

39.3% 45.4% 46.6% 46.0%

19.1% 20.9%

73.9% 72.9%

26.3% 26.8% 23.3% 23.7%

6.3%

26.4% 19.9% 18.5% 16.2%

32.4% 33.3% 26.7% 24.6%

41.2% 46.8% 54.8% 59.2%

Chi-

Square df Sig.

92

16

15

27

88

6

6

6

6

6

.000*

0.02

0.02

.000*

.000*

More

Up to 1 week than 1 week

32.1% 38.1%

Chi-

Square df Sig.

45.1% 46.6%

22.8% 15.3%

73.0% 73.2%

22.1% 23.0%

5.0%

6.9%

6.6%

3.8%

62.7% 63.3%

30.4% 31.5%

5.2%

69.9% 71.8%

23.5% 24.0%

4.1%

15.8% 19.5%

22.9% 29.6%

61.2% 50.9%

88

8

11

28

98

2

2

2

2

2

.000*

0.01

.005*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 120

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

37 weeks or less

93.4%

38 weeks or more

92.0%

Chi-

Square df Sig.

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

88.4% 93.4% 94.0% 92.3%

Chi-

Square df Sig.

More

Up to 1 week than 1 week

92.2% 93.3%

Chi-

Square df Sig.

D10 As far as you know, did staff wash or clean their hands before touching your baby?

D11 Did staff refer to your baby by his/her first name?

D12 Overall, did staff treat you with respect and courtesy?

D13 Overall, did you have confidence and trust in the staff caring for your baby?

E1 Were you involved as much as you wanted in the day-today care of your baby, such as nappy changing and feeding?

1 Yes, always or nearly always

2 Yes, to some extent

3 No

1 Yes, always or nearly always

2 Yes, to some extent

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, definitely

2 Yes, to some extent

3 No, I was not involved as much as I wanted

6.0%

.6%

87.4%

10.0%

2.6%

86.0%

12.5%

1.6%

85.6%

12.2%

2.2%

82.9%

12.6%

4.5%

6.6%

1.3%

81.1%

13.9%

5.0%

85.6%

12.5%

2.0%

85.7%

11.9%

2.4%

78.6%

15.6%

5.8%

Copyright 2011 Picker Institute Europe. All rights reserved.

14

70

2

1

27

2

2

2

.001*

.000*

0.34

2 0.72

2 .000*

10.2%

1.4%

88.6%

8.9%

2.5%

86.1%

2.5%

6.3%

.2%

88.0%

9.4%

2.6%

85.7%

3.1%

5.3%

.7%

87.5% 82.5%

9.9% 13.1%

2.6%

4.2%

6.6%

1.1%

4.4%

86.3% 85.4%

11.4% 13.5% 12.2% 12.5%

2.5% .8% 1.5% 2.0%

78.7% 82.0% 87.0% 85.9%

18.3% 16.3% 11.0% 11.6%

3.0% 1.7% 2.0% 2.5%

85.1% 87.3% 84.0% 77.9%

12.4% 9.6% 11.8% 16.0%

6.2%

Page 121

24

48

10

36

79

6

6

6

.001*

.000*

0.13

6.6%

1.3%

6.1%

.6%

80.9% 88.7%

14.1%

5.1%

9.2%

2.1%

85.3% 86.3%

12.7% 12.2%

2.0% 1.5%

86.5% 84.8%

6 .000*

11.0% 13.1%

2.5% 2.0%

77.0% 85.0%

16.0% 11.8%

6 .000*

7.0% 3.2%

10

114

4

11

113

2

2

2

2

2

.005*

.000*

0.16

.003*

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

E2 Was your partner or companion involved as much as they wanted in the day-today care of your baby, such as nappy changing and feeding?

E3 Were you encouraged to touch, hold and comfort your baby?

E4 Did you have as much

‘kangaroo care’ (skin- to-skin contact) with your baby as you wanted?

E5 Did the doctors and nurses include you in discussions about your baby’s care and treatment?

1 Yes, definitely

2 Yes, to some extent

3 No, they were not involved as much as they wanted to be

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No, not as much kangaroo care as wanted

5 I did not know about kangaroo care

1 Yes, always

2 Yes, sometimes

3 No

37 weeks or less

78.6%

16.5%

38 weeks or more

73.3%

19.9%

Chi-

Square df Sig.

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

78.4% 82.6% 79.5% 73.2%

16.4% 14.3% 15.9% 20.0%

Chi-

Square df Sig.

More

Up to 1 week than 1 week

71.5% 80.9%

20.9% 15.2%

Chi-

Square df Sig.

4.9%

77.0%

18.3%

4.7%

49.3%

21.3%

19.2%

10.1%

54.7%

36.1%

9.3%

6.8%

76.7%

18.1%

5.2%

50.5%

20.6%

18.1%

10.8%

54.1%

34.7%

11.2%

36

1

3

10

2

2

3

2

.000*

0.56

0.39

.007*

5.2%

81.8% 81.6% 76.9% 75.5%

15.7% 15.8% 18.5% 18.8%

2.4%

3.1%

2.6%

4.6% 6.9%

4.6% 5.8%

61.7% 53.0% 47.5% 49.4%

21.0%

15.5%

1.8%

60.5% 53.5% 55.0% 53.4%

33.2% 37.8% 35.8% 35.3%

6.2%

22.8%

18.0%

6.1%

8.7%

21.2% 20.9%

19.9% 18.5%

11.3% 11.3%

9.1% 11.3%

67

32

63

23

6

6

9

6

.000*

.000*

.000*

.001*

7.6%

76.3% 77.3%

17.8% 18.8%

5.9% 3.9%

50.3% 48.8%

20.2% 22.1%

18.5% 19.2%

11.0%

3.9%

9.9%

53.5% 55.1%

34.6% 36.4%

11.9% 8.5%

122

21

7

29

2

2

3

2

.000*

.000*

0.08

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 122

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

E6 Were you told about any changes in your baby’s condition or care?

E7 When a ward round was taking place, were you allowed to be present when your baby was being discussed?

E8 Did staff arrange your baby’s care (such as weighing, bathing) to fit in with your usual visiting times?

E9 Overall, did staff help you feel confident in caring for your baby?

E10 If you wanted to express breast milk for your baby, were you given the support you needed from neonatal staff?

1 Yes, always or nearly always

2 Yes, to some extent

3 No, I was not told about changes

1 Yes, always or nearly always

2 Yes, to some extent

3 No, I was not allowed to be there

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

37 weeks or less

78.3%

38 weeks or more

75.7%

Chi-

Square df Sig.

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

78.8% 78.1% 79.7% 75.2%

Chi-

Square df Sig.

More

Up to 1 week than 1 week

75.1% 79.3%

Chi-

Square df Sig.

18.8%

3.0%

64.0%

17.5%

18.4%

57.4%

24.9%

17.8%

78.5%

18.1%

3.4%

78.3%

16.7%

5.0%

19.7%

4.5%

61.4%

18.2%

20.4%

52.4%

21.9%

25.7%

73.9%

21.0%

5.1%

72.2%

18.1%

9.7%

18

6

81

30

64

2

2

.000*

0.05

19.6%

1.6%

64.2%

16.6%

19.2%

19.5%

2.4%

63.1%

19.9%

17.1%

17.7% 20.2%

2.6% 4.6%

64.9% 61.6%

16.9% 18.0%

18.2% 20.4%

59.2% 58.1% 58.1% 53.0%

2 .000*

26.5% 28.5% 24.8% 21.9%

14.3% 13.4% 17.2% 25.2%

82.1% 79.7% 78.8% 74.2%

16.0% 18.6% 17.6% 20.8%

2 .000*

2 .000*

1.9% 1.7% 3.6% 5.0%

80.9% 80.3% 79.5% 72.1%

16.7% 16.1% 15.4% 18.7%

2.4% 3.7% 5.1% 9.1%

41

13

120

48

84

6

6

.000*

0.05

20.2% 18.2%

4.7% 2.5%

61.0% 64.4%

18.5% 17.4%

20.5% 18.2%

51.7% 58.8%

6 .000*

21.9% 25.5%

26.5% 15.8%

73.8% 79.2%

20.7% 18.1%

6 .000*

6 .000*

5.5% 2.7%

70.2% 80.6%

19.1% 15.6%

10.7% 3.8%

39

10

155

61

160

2

2

2

2

2

.000*

.006*

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 123

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

E11 Were you given the equipment you needed, such as a breast pump and sterilisation equipment?

E12 Were you given enough privacy for expressing milk for your baby?

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No, and it bothered me

4 No, but I did not mind

1 Yes

E13 Were there facilities on the neonatal unit for the storage of breast milk?

2 No

37 weeks or less

87.8%

7.8%

4.3%

76.7%

16.8%

4.1%

2.4%

99.4%

.6%

38 weeks or more

78.7%

9.9%

11.4%

77.0%

15.6%

4.9%

2.5%

98.2%

1.8%

E14 If you wanted to breastfeed your baby were you given enough support to do this from neonatal staff?

E15 Were you given enough privacy for breast feeding your baby?

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No, and it bothered me

4 No, but I did not mind

74.8%

18.2%

7.0%

67.4%

22.6%

6.2%

3.8%

72.8%

19.2%

8.0%

65.7%

21.4%

6.5%

6.3%

Copyright 2011 Picker Institute Europe. All rights reserved.

Chi-

Square df Sig.

145

4

20

4

25

2 .000*

3

1

2

3

0.26

.000*

0.15

.000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

89.8% 89.5% 87.8% 80.3%

7.5% 7.5% 8.1% 9.4%

Chi-

Square df Sig.

132 6 .000*

More

Up to 1 week than 1 week

77.1% 90.1%

10.4% 7.3%

Chi-

Square df Sig.

297 2 .000*

2.7% 3.0% 4.1% 10.3%

73.9% 77.6% 76.9% 76.7%

20.1% 16.6% 16.4% 16.0%

12.4% 2.7%

75.1% 78.1%

16.8% 16.0%

4.6%

1.5%

4.0%

1.8%

4.3%

2.4%

4.6%

2.7%

99.4% 99.5% 99.4% 98.6%

.6%

7.1%

7.2%

3.0%

.5%

6.9%

5.7%

3.1%

.6%

6.4%

5.9%

3.4%

1.4%

71.4% 75.1% 76.0% 72.6%

21.4% 18.0% 17.7% 19.1%

8.3%

63.5% 68.1% 68.6% 65.5%

26.2% 23.1% 22.1% 21.7%

6.6%

6.3%

Page 124

7

13

13

38

9

3

6

9

0.60

.005*

0.05

.000*

5.2%

2.9%

98.1% 99.6%

1.9% .4%

71.5% 76.2%

19.1% 18.1%

9.4% 5.7%

64.1% 68.8%

21.8% 22.3%

7.0%

7.0%

3.8%

2.1%

5.8%

3.1%

15

38

38

63

3

1

2

3

.002*

.000*

.000*

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

E16 If you bottle fed your baby

(formula milk) were you given enough support to do this from neonatal staff?

F1 Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

F3 Was there enough space for you to sit alongside your baby’s cot in the unit?

F4 In your opinion, was there adequate security on the neonatal unit?

F5 If you (and/or your partner or companion) wanted to stay overnight to be close to your baby, did the hospital offer you accommodation?

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, always or nearly always

2 Yes, to some extent

3 No

4 No, but I did not mind

1 Yes, always or nearly always

2 Yes, sometimes

3 No, never

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

37 weeks or less

75.3%

20.1%

4.6%

61.6%

24.4%

7.2%

6.8%

63.7%

32.9%

3.3%

77.0%

18.6%

4.4%

40.7%

18.9%

40.4%

38 weeks or more

72.9%

20.6%

Chi-

Square df Sig.

10 2 .008*

6.5%

64.0%

21.7%

6.9%

7.4%

68.0%

28.6%

3.4%

75.8%

20.5%

3.8%

49.3%

13.6%

37.1%

Copyright 2011 Picker Institute Europe. All rights reserved.

10

20

6

61

3

2

2

2

0.02

.000*

0.05

.000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

76.5% 73.9% 77.0% 72.2%

20.6% 22.7% 18.4% 21.3%

Chi-

Square df Sig.

26 6 .000*

More

Up to 1 week than 1 week

71.3% 76.8%

21.4% 19.5%

Chi-

Square df Sig.

38 2 .000*

2.8% 3.4% 4.7% 6.5%

65.8% 58.4% 60.7% 63.9%

7.3% 3.8%

62.8% 62.2%

23.6% 27.5% 24.4% 21.9%

5.7%

4.9%

9.0%

5.0%

7.3%

7.6%

6.8%

7.3%

60.8% 59.4% 64.6% 67.4%

36.5% 37.1% 32.2% 29.0%

2.7% 3.6% 3.2% 3.5%

75.3% 73.9% 77.7% 76.4%

18.2% 22.0% 18.1% 19.8%

6.5% 4.1% 4.3% 3.8%

36.2% 35.0% 40.9% 48.4%

24.7% 22.7% 18.8% 14.0%

39.1% 42.3% 40.2% 37.6%

Page 125

34

32

14

89

9

6

6

6

.000*

.000*

0.03

.000*

22.4% 24.2%

7.0%

7.8%

7.2%

6.4%

68.0% 63.1%

28.2% 33.9%

3.8% 3.0%

75.5% 77.6%

20.2% 18.5%

4.3% 3.9%

47.8% 41.2%

11.9% 20.8%

40.3% 38.0%

10

36

6

103

3

2

2

2

0.02

.000*

0.06

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

F6 Were you able to visit your baby on the unit as much as you wanted to?

F8 If you had your other children with you when visiting the unit, was there somewhere they could play?

F9 Were you able to contact the unit by telephone whenever you needed to?

1 Yes, definitely

2 Yes, to some extent

3 No

2 Yes, there was a supervised play room/area

3 Yes, there was an unsupervised play room/area

4 No, there was nowhere for them to play

5 Children were not allowed to visit the unit

1 Yes, always or nearly always

2 Yes, sometimes

3 No, never

37 weeks or less

90.3%

7.5%

38 weeks or more

88.0%

9.2%

Chi-

Square df Sig.

11 2 .003*

2.2%

9.1%

2.7%

7.7%

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

92.1% 92.4% 90.6% 87.8%

6.5% 6.2% 7.3% 9.4%

Chi-

Square df Sig.

29 6 .000*

More

Up to 1 week than 1 week

87.1% 91.5%

10.0% 6.7%

Chi-

Square df Sig.

47 2 .000*

1.4% 1.5% 2.1% 2.8%

12.1% 11.1% 10.1% 6.6%

2.9% 1.9%

6.4% 10.4%

51.3%

30.7%

8.9%

93.9%

4.8%

1.3%

44.7%

35.3%

12.3%

87.5%

8.5%

4.0%

24

89

3

2

.000*

.000*

59.1%

20.1%

8.7%

95.0%

4.7%

.3%

55.1%

26.9%

6.9%

95.0%

4.2%

.8%

51.5% 45.5%

30.6% 35.6%

7.8% 12.3%

93.9% 88.7%

4.9%

1.2%

7.7%

3.6%

68

82

9

6

.000*

.000*

40.3% 55.7%

39.0% 27.1%

14.2%

86.1% 94.8%

9.1%

4.9%

6.8%

4.5%

.7%

152

187

3

2

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 126

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

G1 Were you given enough written information to help you understand your baby’s condition and treatment?

1 Yes, definitely

2 Yes, to some extent

3 No, I was not given enough written information

4 I did not get any written information

1 Yes

G2 If you needed help understanding written or spoken English, was information given in a language you could understand?

G3 When you asked questions about your baby’s condition and treatment, did you get answers you could understand?

G4 Did a member of staff explain the purpose of any tests your baby had in a way you could understand?

G5 If your baby had any surgery, did a member of staff explain the operation and its outcome in a way you could understand?

2 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

37 weeks or less

45.6%

22.7%

38 weeks or more

30.3%

18.6%

Chi-

Square df Sig.

10.2%

21.5%

81.3%

18.7%

74.8%

23.2%

2.0%

80.8%

17.1%

2.0%

78.5%

12.8%

8.7%

14.2%

37.0%

73.4%

26.6%

69.5%

26.4%

4.1%

76.2%

20.2%

3.6%

74.4%

15.0%

10.6%

333

8

50

38

2

3

1

2

2

2

.000*

.005*

.000*

.000*

0.45

Less than

1000g

51.5% 50.2% 47.1% 31.5%

27.0%

8.5%

13.0%

85.2%

14.8% 17.5% 18.7% 24.8%

71.5%

25.7% 27.0% 21.7% 25.8%

2.7% 1.8% 1.8% 3.7%

76.6% 76.5% 82.3% 77.4%

21.7% 21.7% 15.7% 19.2%

1.6% 1.7% 2.0% 3.4%

80.9% 76.2% 78.1% 75.3%

13.9%

5.2%

1000g to

1500g

23.7%

10.7%

15.4%

82.5%

71.2%

12.3%

11.5%

1500g to

2500g

23.1% 19.0%

10.3% 13.1%

19.4% 36.4%

81.3% 75.2%

76.4% 70.5%

11.5% 15.3%

10.4%

More than

2500g

9.5%

Chi-

Square df Sig.

451

7

52

47

5

9

3

6

6

6

.000*

0.08

.000*

.000*

0.58

More

Up to 1 week than 1 week

31.4% 46.7%

18.1% 23.8%

Chi-

Square df Sig.

12.9% 10.7%

37.7% 18.8%

75.9% 80.4%

24.1% 19.6%

71.4% 73.9%

24.8% 24.1%

3.8% 2.0%

77.2% 80.6%

19.1% 17.6%

3.7% 1.8%

66.1% 81.0%

17.5% 12.2%

16.4% 6.8%

431

3

28

37

21

3

1

2

2

2

.000*

0.11

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 127

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

G6 Did you read your baby’s medical notes (not just the nursing notes) while they were in the neonatal unit?

1 Yes

2 No, but I wanted to read them

3 No, but I did not want to read them

4 I did not know about or see the medical notes

37 weeks or less

48.3%

19.9%

8.0%

23.7%

38 weeks or more

37.6%

19.8%

8.8%

33.8%

G7 Were you offered emotional support or counselling services?

1 Yes

2 No, but I would have liked to have been offered this

19.7%

25.6%

15.8%

24.8%

3 I did not need any emotional support or counselling

1 Yes, definitely

54.6% 59.4%

G8 Were you given information about any help you could get with travelling expenses, parking costs or food vouchers?

G9 Did staff give you any information about parent

2 Yes, to some extent

3 No

1 Yes, staff gave me this

26.9%

24.4%

48.8%

37.9%

21.0%

18.6%

60.5%

21.0%

Copyright 2011 Picker Institute Europe. All rights reserved.

Chi-

Square df Sig.

140

29

95

397

3

2

2

2

.000*

.000*

.000*

.000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

48.0% 52.1% 50.6% 38.1%

32.2%

7.4%

23.7%

8.0%

17.7% 19.8%

7.7% 8.8%

12.5% 16.3% 24.0% 33.2%

39.1% 24.4% 18.0% 15.2%

27.9% 29.1% 25.0% 24.7%

33.1% 46.5% 57.0% 60.0%

40.5% 30.6% 25.6% 21.3%

24.8% 27.0% 24.6% 19.4%

34.7% 42.4% 49.8% 59.2%

54.3% 44.9% 38.9% 21.7%

Page 128

Chi-

Square df Sig.

267

199

164

601

9

6

6

6

.000*

.000*

.000*

.000*

More

Up to 1 week than 1 week

37.3% 50.1%

18.3% 21.6%

Chi-

Square df Sig.

9.6% 7.2%

34.9% 21.2%

13.3% 22.5%

22.0% 28.4%

64.7% 49.1%

19.8% 28.4%

17.6% 25.5%

62.6% 46.2%

19.7% 41.0%

269

241

197

724

3

2

2

2

.000*

.000*

.000*

.000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

support groups, such as Bliss or other local groups?

information

H1 In total, how long did your baby stay in neonatal care

(include all the hospitals they stayed in)?

H2 In your opinion, was your baby’s stay in neonatal care…

2 No, but this information was available in the unit (e.g. a leaflet in the parents’ room)

3 No, I did not get this information

1 Up to one week

2 More than 1 week but less than

4 weeks

3 More than 4 weeks but less than 8 weeks

4 More than 8 weeks but less than 12 weeks

5 More than 12 weeks

1 Shorter than was needed

2 About right

3 Longer than was needed

37 weeks or less

38 weeks or more

Chi-

Square df Sig.

35.6%

26.5%

27.0%

46.2%

15.6%

6.6%

4.5%

6.1%

86.6%

7.4%

32.6%

46.4%

78.6%

19.8%

1.5%

.1%

.1%

3.1%

86.6%

10.4%

2488

65

4

2

.000*

.000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

Chi-

Square df Sig.

Up to 1 week

More than 1 week

Chi-

Square df Sig.

35.9%

9.8%

1.6%

3.5%

12.0%

35.4%

47.4%

3.3%

5.2%

39.4%

15.7%

3.9%

21.3%

46.6%

21.5%

6.8%

9.2%

4.9%

34.2% 33.7%

26.9% 44.6%

25.1% 72.8%

60.4% 25.1%

12.4%

1.4%

.6%

6.1%

1.8%

.2%

.1%

3.3%

91.6% 85.9% 87.3% 85.9%

6.6% 10.8%

8486

134

12 .000*

6 .000*

31.4% 37.0%

48.9% 22.0%

100.0%

.0%

.0%

3.9%

.0%

.0% 68.0%

.0% 19.1%

7.7%

5.3%

5.7%

86.6% 86.5%

9.5% 7.8%

9269

24

4

2

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 129

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

H3 When your baby was discharged from the neonatal unit, where did they go next?

H4 Were you offered accommodation overnight at the hospital before your baby came home?

H5 Did you feel prepared for your baby’s discharge from neonatal care?

1 A hospital maternity ward

2 Another ward in the hospital

3 Home

4 Somewhere else

1 Yes

2 No, but I would have liked it

3 No, but I did not want or need it

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes

H6 Did your baby need any special equipment when s/he was discharged from the unit?

2 No

37 weeks or less

17.6%

38 weeks or more

46.0%

Chi-

Square df Sig.

3.8%

77.8%

.8%

83.5%

3.5%

13.1%

72.3%

23.6%

4.1%

10.8%

89.2%

4.1%

49.0%

.9%

71.0%

5.2%

23.8%

77.7%

18.8%

3.5%

7.1%

92.9%

895

124

34

36

3

2

2

1

.000*

.000*

.000*

.000*

Less than

1000g

2.5%

2.5%

93.2%

1.9%

1.7%

8.7%

1000g to

1500g

2.5%

93.1%

1.3%

2.8%

8.7%

3.5% 3.7%

30.2% 11.1%

1500g to

2500g

4.2%

.6%

3.4%

More than

2500g

3.1% 15.7% 43.8%

4.2%

79.5% 51.2%

.8%

89.6% 88.4% 82.8% 72.7%

5.2%

13.8% 22.1%

70.7% 67.9% 72.5% 77.2%

25.7% 28.4% 23.2% 19.2%

4.3% 3.6%

8.6% 7.9%

69.8% 88.9% 91.4% 92.1%

Chi-

Square df Sig.

1251

150

53

206

9

6

6

3

.000*

.000*

.000*

.000*

More

Up to 1 week than 1 week

54.0% 5.4%

Chi-

Square df Sig.

5.1%

40.1% 90.7%

.8% .9%

68.2% 84.5%

5.0% 3.6%

26.7% 11.9%

77.0% 72.0%

18.7% 24.4%

4.3%

3.0%

3.6%

8.3% 10.3%

91.7% 89.7%

2822

215

45

11

3

2

2

1

.000*

.000*

.000*

.001*

H7 Were you given enough information and guidance on using the equipment when your baby left the neonatal unit?

1 Yes, definitely

2 Yes, to some extent

3 No

81.1%

13.5%

5.4%

71.7%

22.9%

5.4%

Copyright 2011 Picker Institute Europe. All rights reserved.

12 2 .003*

88.5% 86.7% 80.5% 71.9%

10.6% 13.3% 14.6% 19.8%

.9% .0% 4.9% 8.2%

Page 130

27 6 .000*

69.1% 85.2%

22.0% 12.0%

8.9% 2.8%

35 2 .000*

Gestational age at birth

Pearson Chisquare Tests

Baby birth weight (grams)

Pearson Chisquare Tests

Length of stay in neonatal unit

Pearson Chisquare Tests

H8 Were you given enough information on what to expect in terms of your baby’s progress and recovery?

H11 If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

H12 Overall, after your baby arrived home, did you get enough support from health professionals?

J1 Did your baby stay in a neonatal unit in more than one hospital?

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes, definitely

2 Yes, to some extent

3 No

1 Yes

2 No

37 weeks or less

52.2%

33.0%

14.8%

40.4%

34.9%

38 weeks or more

56.6%

28.9%

Chi-

Square df Sig.

20 2 .000*

14.5%

36.6%

34.3%

24 2 .000*

24.7%

58.0%

31.7%

29.1%

59.3%

31.7%

4 2 0.11

10.3%

16.8%

83.2%

9.0%

6.2%

93.8%

220 1 .000*

Less than

1000g

1000g to

1500g

1500g to

2500g

More than

2500g

56.0% 50.1% 52.0% 55.5%

35.0% 35.4% 32.7% 29.6%

Chi-

Square df Sig.

28 6 .000*

More

Up to 1 week than 1 week

56.3% 51.7%

29.1% 33.7%

Chi-

Square df Sig.

24 2 .000*

9.0% 14.4% 15.2% 14.9%

43.4% 38.4% 41.9% 36.4%

32.5% 36.0% 34.7% 34.6%

14.7% 14.7%

37.7% 39.5%

33.6% 35.8%

41 6 .000* 17 2 .000*

24.1% 25.6% 23.4% 29.0%

62.0% 53.4% 59.1% 58.5%

28.4% 35.3% 30.4% 32.3%

28.6% 24.8%

59.4% 57.4%

31.5% 32.1%

18 6 .007* 6 2 0.04

9.6% 11.3% 10.5% 9.1%

53.6% 33.0% 11.2% 6.4%

46.4% 67.0% 88.8% 93.6%

1057 3 .000*

9.1% 10.5%

2.3% 21.8%

97.7% 78.2%

765 1 .000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 131

Table 9: A breakdown of results by different groups of respondents (type of unit and parent demographics)

*The Chi-square statistic is significant at the 0.05 level

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else sample information if

Pearson Chi-square

Tests

response missing

SCBU LNU NICU

Chi-

Square

32.6% 31.3% 33.6%

5

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

2 0.10

33.8% 29.3% 32.7% 33.2% 12

df Sig.

White Non-

White

3 .006* 32.8% 29.6%

Chi-

Square

6

df Sig.

1 0.01

A1 Before your baby was born, did you know that they might need care in a neonatal unit?

1 Yes

2 No 67.4% 68.7% 66.4%

5 2 0.10

66.2% 70.7% 67.3% 66.8% 12 3 .006* 67.2% 70.4%

6 1 0.01

4 0.61

38.3% 39.9% 40.1% 41.0%

4 0.61

38.7% 39.4% 37.6% 38.9%

4 0.61

23.0% 20.7% 22.3% 20.1%

3

3

3

6 0.85 40.2% 38.4%

6 0.85 38.2% 40.5%

6 0.85 21.5% 21.1%

1

1

1

2 0.69

2 0.69

2 0.69

A2 Before your baby was born, were you given the chance to visit the neonatal unit?

1 Yes

2 No, but I did not mind

41.3% 40.1% 38.7%

38.6% 39.0% 38.0%

3 No, but I would have liked this

20.1% 20.9% 23.3%

A3 Before your baby was born, did a member of staff from the

1 Yes, definitely 32.8% 35.5% 37.5%

2 Yes, to some extent 22.9% 21.1% 19.5%

neonatal unit talk to you about what to expect after the birth?

3 No 44.4% 43.5% 43.0%

B2 After the birth, were you able to

1 Yes

touch your baby before s/he was taken to the neonatal unit?

2 No

86.3% 86.6% 83.2%

13.7% 13.4% 16.8%

3

3

3

5

5

5

15

15

B3 Were you given a photograph of your baby?

1 Yes 45.9% 44.1% 49.2%

22

2 No, but I would have liked this

22.1% 25.0% 21.3%

22

3 No, but I took a photograph myself

31.9% 30.9% 29.5%

22

4 0.30

35.6% 35.2% 38.4% 33.4%

4 0.30

22.7% 21.9% 20.2% 19.7%

9

9

4 0.30

41.7% 42.9% 41.3% 46.9% 9

2 .001*

82.6% 85.1% 87.6% 86.4% 20

2 .001*

17.4% 14.9% 12.4% 13.6% 20

4 .000*

47.3% 46.8% 45.4% 44.8% 21

4 .000*

25.2% 23.5% 21.9% 22.6% 21

4 .000*

27.5% 29.7% 32.7% 32.7% 21

6 0.20 34.1% 43.2%

16

6 0.20 21.0% 21.2%

16

6 0.20 44.9% 35.6%

16

3 .000* 86.7% 79.6%

42

3 .000* 13.3% 20.4%

42

6 .002* 47.3% 39.8%

62

6 .002* 21.7% 31.2%

62

6 .002* 31.0% 29.1%

62

2 .000*

2 .000*

2 .000*

1 .000*

1 .000*

2 .000*

2 .000*

2 .000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 132

B4 After you gave birth, were you ever cared for in the same ward as mothers who had their baby with them?

1 Yes, and this bothered me

2 Yes, but I did not mind

3 No, I stayed in a separate room/area

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

35.0% 33.2% 29.4%

33

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 .000*

35.8% 34.5% 31.9% 28.7% 36

df Sig.

White Non-

White

Chi-

Square

6 .000* 33.7% 26.0%

43

df Sig.

2 .000*

28.1% 27.8% 26.3%

36.9% 39.0% 44.3%

33

33

4

4

.000*

.000*

27.3% 25.9% 26.5% 29.4%

36.9% 39.6% 41.6% 41.9%

36

36

6

6

.000*

.000*

26.3% 33.4%

40.0% 40.6%

43

43

2

2

.000*

.000*

B5 After the birth, did a member of staff come to talk to you about your baby’s condition and treatment?

1 Yes

2 No

B6 How long did you wait before a member of staff came to talk to you about your baby’s condition and treatment?

2 More than one hour but less than two

80.1% 77.5% 77.2%

19.9% 22.5% 22.8%

1 Less than one hour 61.6% 58.6% 55.4%

16

19.4% 20.0% 21.7%

7

7

16

3 More than two hours but less than four

9.5% 10.8% 12.8%

16

4 Four hours or more 9.5% 10.5% 10.1%

16

B7 After your baby was admitted to the neonatal unit, were you able to see your baby as soon as you wanted?

1 Yes, staff took me 71.4% 65.2% 64.3%

26

2 Yes, family took me 19.5% 23.6% 23.8%

26

3 No 9.1% 11.2% 11.9%

26

2 0.03

74.7% 77.5% 79.2% 79.8%

2 0.03

25.3% 22.5% 20.8% 20.2%

6 0.01

53.6% 57.4% 61.3% 60.3% 33

19 3 .000* 77.9% 78.9%

19 3 .000* 22.1% 21.1%

9 .000* 58.4% 58.3%

6 0.01

22.0% 21.2% 19.1% 19.6% 33 9 .000* 20.3% 21.2%

1

1

2

2

6 0.01

11.6% 13.0% 10.5% 9.7% 33

6 0.01

12.9% 8.4% 9.1% 10.4% 33

4 .000*

64.6% 65.7% 67.1% 67.7%

4 .000*

23.6% 22.7% 22.2% 22.4%

4 .000*

11.8% 11.6% 10.8% 9.9%

7

7

7

9 .000* 11.3% 10.0%

2

9 .000* 10.0% 10.6%

2

6 0.36 66.4% 66.9%

21

6 0.36 22.1% 25.6%

21

6 0.36 11.6% 7.6%

21

1 0.42

1 0.42

3 0.62

3 0.62

3 0.62

3 0.62

2 .000*

2 .000*

2 .000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 133

B8 After your baby was admitted to the neonatal unit, was your partner or companion able to see your baby as soon as they wanted?

B9 After you gave birth, was a partner or family member allowed to stay with you overnight?

1 Yes

2 No

1 Yes

2 No

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

95.6% 96.0% 93.9%

16

df Sig.

16-27 28-31 32-35 36 and over

2 .000*

93.9% 95.1% 95.4% 96.2%

Chi-

Square

13

df

3

Sig.

White Non-

White

.004* 95.2% 95.7%

Chi-

Square

1

df Sig.

1 0.44

4.4% 4.0% 6.1%

16 2 .000*

6.1% 4.9% 4.6% 3.8%

13 3 .004*

4.8% 4.3%

1 1 0.44

17.8% 17.3% 20.6%

82.2% 82.7% 79.4%

B10 When you first visited the unit,

1 Yes, definitely

were you able to speak to a doctor or nurse about your baby’s condition as soon as you wanted?

2 Yes, to some extent

65.0% 65.5% 64.4%

27.3% 27.0% 27.6%

3 No, I would have liked to have spoken

7.7% 7.5% 7.9% to somebody earlier

10

10

1

1

1

2

2

4

4

4

.006*

.006*

0.90

0.90

0.90

18.3% 18.0% 20.0% 17.8%

81.7% 82.0% 80.0% 82.2%

61.7% 63.8% 67.3% 67.0%

28.6% 28.5% 25.6% 26.6%

9.6% 7.7% 7.0% 6.4%

4

4

31 6

.000* 64.9% 65.5%

31 6

.000* 27.5% 26.4%

31

3

3

6

0.31 18.2% 19.3%

0.31 81.8% 80.7%

.000*

7.6% 8.1%

1

1

1

1

1

1

1

2

2

2

0.40

0.40

0.58

0.58

0.58

B11 When your partner or

1 Yes, definitely 65.8% 66.9% 64.7%

companion first visited the unit, were they able to speak to a doctor or nurse about your baby’s condition as soon as they wanted?

2 Yes, to some extent 27.9% 26.7% 28.1%

3 No, but they would have liked to have

6.3% 6.5% 7.3% spoken to somebody earlier

B12 When you first visited your baby, were you given enough information about the neonatal unit?

1 Yes, definitely

2 Yes, to some extent

3 No

58.2% 57.3% 56.3%

27.3% 27.2% 27.0%

14.5% 15.5% 16.7%

5

5

5

4

4

4

4 0.31

60.7% 64.4% 68.4% 69.2%

4 0.31

30.1% 28.8% 25.5% 25.8%

4 0.31

9.3% 6.8% 6.1% 5.0%

4 0.36

57.7% 56.8% 57.6% 57.0%

4 0.36

25.8% 27.8% 26.4% 27.9%

4 0.36

16.5% 15.4% 16.0% 15.1%

61 6

.000* 66.4% 63.6%

61 6

.000* 27.0% 29.5%

61 6 .000*

6.6% 6.9%

4

4

4

4 6

0.64 56.8% 59.2%

4 6

0.64 27.5% 25.5%

4 6

0.64 15.7% 15.4%

3

3

3

2 0.11

2 0.11

2 0.11

2 0.22

2 0.22

2 0.22

Copyright 2011 Picker Institute Europe. All rights reserved. Page 134

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

B13 When you first visited your baby, was the purpose of the machines, monitors and alarms used in the neonatal unit clearly explained to you?

1 Yes, definitely

2 Yes, to some extent

3 No

56.4% 54.4% 51.3%

29.3% 28.9% 30.0%

14.3% 16.7% 18.8%

21

21

21

B14 When you first visited the unit,

1 Yes, definitely

were infection control practices

2 Yes, to some extent

74.0% 74.0% 74.1%

13.6% 15.3% 14.6%

explained to you, such as hand washing and procedures for visitors?

3 No 12.5% 10.6% 11.3%

7

7

7

19.0% 9.8% 10.6%

127

C1 Was your baby ever transferred

1 Yes

(moved) to a neonatal unit at a different hospital?

2 No, s/he stayed in the same hospital

81.0% 90.2% 89.4%

127

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 .000*

53.1% 52.6% 54.7% 54.9%

15

4 .000*

28.1% 31.2% 28.3% 29.8%

15

df Sig.

White Non-

White

6 0.02

54.4% 51.7%

6 0.02

29.3% 29.3%

Chi-

Square

7

7

4

4

4

4

2

2

.000*

0.12

0.12

0.12

.000*

.000*

18.8% 16.3% 17.0% 15.2%

76.0% 74.1% 72.6% 73.3%

13.6% 14.6% 15.9% 14.7%

10.5% 11.3% 11.5% 12.0%

12.6% 10.9% 13.2% 12.6%

87.4% 89.1% 86.8% 87.4%

15

8

8

8

6

6

6

6

6

6

3

3

0.02

0.21

0.21

0.21

0.14

0.14

16.3% 19.0%

73.2% 78.2%

15.0% 12.8%

11.7% 9.0%

11.7% 15.3%

88.3% 84.7%

7

17

17

17

15

15

df Sig.

2

2

2

2

2

2

1

1

0.03

0.03

0.03

.000*

.000*

.000*

.000*

.000*

C2 Were you and your baby ever cared for in separate hospitals?

C3 How many different hospitals did your baby stay in?

1 Yes

2 No

1 Two

2 Three

32.8% 30.8% 37.5%

67.2% 69.2% 62.5%

86.0% 85.9% 90.0%

11.9% 11.9% 8.0%

3 Four or more 2.1% 2.2% 2.0%

C4 Did staff clearly explain to you why your baby was being transferred to a different hospital?

1 Yes, definitely 80.4% 87.0% 84.7%

2 Yes, to some extent 17.2% 10.9% 12.8%

3 No 2.5% 2.1% 2.4%

C5 Did you feel you were given enough warning by staff that your baby was going to be transferred?

1 Yes, definitely 55.2% 59.6% 64.1%

2 Yes, to some extent 24.6% 24.4% 19.6%

3 No 20.1% 16.1% 16.3%

Copyright 2011 Picker Institute Europe. All rights reserved.

7

7

7

7

4

4

3

3

3

7

7

2 0.16

26.0% 38.8% 32.3% 36.2%

11

2 0.16

74.0% 61.2% 67.7% 63.8%

11

4 0.48

85.1% 85.3% 90.6% 86.2%

6

4 0.48

12.6% 11.7% 8.4% 11.4%

4 0.48

2.3% 3.0% 1.0% 2.4%

4 0.13

79.0% 82.1% 85.9% 86.9%

4 0.13

17.3% 16.1% 12.4% 10.9%

6

6

9

9

4 0.13

3.6% 1.8% 1.8% 2.2%

4 0.16

55.7% 58.1% 57.9% 63.9%

4 0.16

23.4% 22.3% 27.5% 19.0%

9

9

9

4 0.16

20.9% 19.5% 14.7% 17.1%

Page 135

9

3 0.01

29.4% 48.7%

31

3 0.01

70.6% 51.3%

31

6 0.42

87.6% 84.6%

5

6 0.42

10.7% 11.5%

6 0.42

1.7% 4.0%

6 0.16

84.1% 83.1%

6 0.16

13.9% 13.2%

5

5

2

2

6 0.16

2.0% 3.7%

6 0.15

58.6% 61.1%

6 0.15

23.4% 22.3%

2

0

0

6 0.15

18.0% 16.6%

0

1 .000*

1 .000*

2 0.09

2 0.09

2 0.09

2 0.33

2 0.33

2 0.33

2 0.79

2 0.79

2 0.79

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

C6 In your opinion, were staff in

1 Yes, definitely 69.2% 63.4% 70.7%

the new unit fully aware of the care your baby had received so far?

2 Yes, to some extent 23.1% 30.2% 23.3%

7

7

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.12

66.0% 70.0% 66.2% 67.9%

4 0.12

27.0% 23.3% 27.4% 25.2%

1

1

df Sig.

White Non-

White

6 0.96

66.6% 71.2%

6 0.96

26.3% 23.3%

Chi-

Square

2

2

df Sig.

2

2

0.39

0.39

3 No 7.8% 6.4% 5.9%

C7 Were you given enough information about the hospital/unit

1 Yes, definitely 60.3% 61.0% 62.8%

2 Yes, to some extent 29.7% 29.9% 27.9%

where your baby was being transferred (such as location and facilities)?

3 No 10.0% 9.1% 9.3%

7

1

1

1

4 0.12

6.9% 6.7% 6.4% 6.9%

4 0.96

58.4% 61.2% 65.5% 60.1%

4 0.96

30.2% 29.1% 25.6% 31.3%

4 0.96

11.4% 9.7% 8.9% 8.6%

1

4

4

4

6 0.96

7.1% 5.5%

6 0.63

60.2% 65.2%

6 0.63

30.5% 24.7%

6 0.63

9.3% 10.1%

2

3

3

3

2 0.39

2 0.23

2 0.23

2 0.23

D1 When you visited the unit, did the staff caring for your baby introduce themselves to you?

1 Yes, all of the staff introduced themselves

2 Some of the staff introduced themselves

3 Very few or none of the staff introduced themselves

55.7% 55.7% 58.7%

37.3% 37.4% 35.0%

7.0% 6.9% 6.3%

7

7

7

4 0.12

55.4% 55.7% 57.6% 57.4%

10

4 0.12

36.5% 37.7% 36.3% 36.3%

10

4 0.12

8.1% 6.7% 6.1% 6.3%

10

6 0.11

57.0% 54.7%

6 0.11

36.4% 38.1%

6 0.11

6.6% 7.2%

3

3

3

2 0.28

2 0.28

2 0.28

D2 Were you told which nurse was responsible for your baby’s care each day s/he was in the neonatal unit?

1 Yes

2 No

83.9% 86.0% 87.4%

13

16.1% 14.0% 12.6%

13

2 .002*

84.1% 85.8% 86.4% 87.2%

10

2 .002*

15.9% 14.2% 13.6% 12.8%

10

3 0.02

85.9% 86.3%

0

3 0.02

14.1% 13.7%

0

1 0.70

1 0.70

Copyright 2011 Picker Institute Europe. All rights reserved. Page 136

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

78.4% 78.5% 79.4%

3

D3 Did staff keep you up to date with your baby’s condition and progress?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

D4 Were you able to talk to staff on

1 Yes, always or

the unit about your worries and

nearly always

concerns?

2 Yes, sometimes

D5 Were you able to speak to a doctor about your baby as much as you wanted?

18.7% 18.4% 17.3%

2.9% 3.2% 3.3%

75.2% 76.0% 76.4%

21.6% 21.0% 20.8%

3 No

1 Yes, always or nearly always

3.2% 3.0% 2.9%

34.6% 35.2% 36.4%

2 Yes, to some extent 46.4% 45.4% 45.7%

3

3

1

1

1

3

3

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.62

72.8% 79.1% 80.7% 81.6%

70

df Sig.

White Non-

White

6 .000*

78.8% 78.4%

Chi-

Square

1

4

4

4

4

4 0.89

4 0.52

34.5% 34.3% 35.7% 37.0%

27

4

0.62

0.62

0.89

0.89

0.52

22.7% 17.5% 16.6% 16.3%

4.6% 3.4% 2.8% 2.1%

69.4% 75.2% 78.0% 79.9%

26.1% 22.3% 19.5% 17.6%

4.5% 2.5% 2.5% 2.6%

84

44.0% 45.3% 46.4% 46.8%

70

70

84

84

27

6 .000*

18.0% 18.8%

6 .000*

3.2% 2.9%

6

6 .000*

2.8% 3.8%

16

6 .000*

33.8% 43.7%

55

6

.000*

.000*

20.5% 24.2%

46.6% 41.5%

1

1

6 .000*

76.7% 72.0%

16

16

55

df Sig.

2

2

2

2

2

0.67

0.67

.000*

.000*

2 .000*

2 .000*

2

0.67

.000*

D6 Were the nurses on the unit sensitive to your emotions and feelings?

3 No

1 Yes, always or nearly always

2 Yes, sometimes

3 No

19.1% 19.4% 18.0%

73.1% 72.6% 73.5%

3

1

22.6% 22.9% 22.3%

1

4.3% 4.5% 4.2%

1

60.8% 61.9% 66.5%

24

D7 Were the doctors on the unit sensitive to your emotions and feelings?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

31.9% 32.2% 28.3%

24

7.3% 5.9% 5.2%

24

1

D8 In your opinion, was important information about your baby passed on from one member of staff to another?

1 Yes, always or nearly always

2 Yes, sometimes

3 No, information was not passed on

70.5% 71.0% 70.4%

23.8% 23.8% 24.1%

5.7% 5.2%

Copyright 2011 Picker Institute Europe. All rights reserved.

5.5%

1

1

4 0.52

21.5% 20.4% 17.9% 16.1%

27

4 0.89

66.0% 72.8% 74.7% 77.3%

87

4 0.89

27.6% 22.9% 21.5% 19.5%

87

4 0.89

6.4% 4.3% 3.8% 3.2%

87

4 .000*

58.5% 62.6% 64.4% 66.2%

39

4 .000*

33.7% 32.4% 29.4% 28.6%

39

4 .000*

7.8% 5.0% 6.2% 5.2%

39

4 0.92

63.9% 69.6% 72.4% 75.6%

83

4 0.92

29.0% 25.1% 22.3% 20.2%

83

4 0.92

7.1% 5.3% 5.3% 4.2%

83

Page 137

6 .000*

19.6% 14.9%

55 2 .000*

6 .000*

74.4% 65.7% 47.710

2 .000*

6 .000*

21.5% 28.8% 47.710

2 .000*

6 .000*

4.1% 5.5% 47.710

2 .000*

6 .000*

63.2% 61.9%

1 2 0.61

6 .000*

30.7% 32.1%

6 .000*

6.0% 6.0%

1

1

6 .000*

71.4% 66.8%

13

2

2

2

0.61

0.61

.002*

6 .000*

23.3% 26.9%

13

6 .000*

5.2% 6.3%

13

2 .002*

2 .002*

D9 Did staff give you conflicting information about your baby's condition or care?

D10 As far as you know, did staff wash or clean their hands before touching your baby?

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

1 Yes, often

2 Yes, sometimes

SCBU LNU NICU

Chi-

Square

18.5% 17.5% 18.3%

26.8% 25.6% 27.3%

3 No, not at all 54.7% 56.9% 54.4%

1 Yes, always or nearly always

92.6% 92.6% 93.2%

2 Yes, to some extent 6.2% 6.5% 6.1%

5

5

5

3

3

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4

4

4

4

0.26

0.26

0.26

0.53

30.1% 18.7% 14.3% 11.2%

30.6% 25.7% 25.1% 24.8%

39.3% 55.5% 60.5% 64.0%

91.2% 93.2% 92.7% 93.7%

416

416

416

13

df Sig.

White Non-

White

Chi-

Square

6 .000*

16.3% 26.9%

94

6 .000*

27.0% 23.2%

94

6 .000*

56.7% 49.9%

94

6 0.05

93.4% 89.4%

29

4 0.53

7.5% 5.9% 6.4% 5.7%

13 6 0.05

5.8% 9.1%

29

df Sig.

2

2

2

2

2

.000*

.000*

.000*

.000*

.000*

3 No

D11 Did staff refer to your baby by his/her first name?

1 Yes, always or nearly always

1.1% .9% .7%

86.2% 85.0% 83.8%

2 Yes, to some extent 10.7% 11.3% 12.4%

3.1% 3.8% 3.7%

85.0% 85.9% 86.1%

3 No

D12 Overall, did staff treat you with

1 Yes, always or

respect and courtesy?

nearly always

2 Yes, sometimes

3 No

D13 Overall, did you have confidence and trust in the staff caring for your baby?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

13.3% 12.4% 12.0%

1.7% 1.7% 1.9%

85.3% 85.1% 86.4%

12.4% 12.5% 11.5%

2.3% 2.3% 2.1%

Copyright 2011 Picker Institute Europe. All rights reserved.

6

2

2

2

3

3

3

3

6

6

4 0.53

1.3% .9% 1.0% .6%

13

4 0.19

80.3% 84.4% 86.2% 87.9%

61

4 0.19

14.3% 11.8% 11.2% 9.2%

61

4 0.19

5.4% 3.8% 2.6% 2.9%

61

4 0.67

78.3% 86.4% 87.8% 89.4%

136

4 0.67

18.8% 12.0% 10.6% 9.5%

136

4 0.67

2.9% 1.6% 1.7% 1.0%

136

4 0.64

80.4% 86.0% 86.4% 88.4%

67

4 0.64

16.4% 11.7% 11.7% 9.7%

67

4 0.64

3.3% 2.2% 1.9% 1.9%

67

Page 138

6 0.05

.8% 1.5%

29

6 .000*

86.7% 73.8%

158

6 .000*

10.5% 17.8%

158

6 .000*

2.8% 8.4%

158

6 .000*

86.3% 82.8%

17

6 .000*

11.9% 15.7%

17

6 .000*

1.8% 1.5%

17

6 .000*

86.5% 80.6%

37

6 .000*

11.4% 16.0%

37

6 .000*

2.0% 3.4%

37

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

E1 Were you involved as much as you wanted in the day-to-day care of your baby, such as nappy changing and feeding?

1 Yes, definitely

3 No, I was not involved as much as I wanted

SCBU LNU NICU

Chi-

Square

82.4% 81.1% 80.4%

2 Yes, to some extent 12.4% 14.1% 14.4%

5.2% 4.8% 5.2%

6

6

6

E2 Was your partner or companion

1 Yes, definitely

involved as much as they wanted in the day-to-day care of your

2 Yes, to some extent

78.8% 76.4% 74.6%

15.9% 17.9% 19.3%

12

12

baby, such as nappy changing and feeding?

3 No, they were not involved as much as they wanted to be

5.3% 5.7% 6.0%

12

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.21

76.3% 81.7% 83.0% 83.1%

47

4 0.21

17.1% 13.7% 12.2% 12.6%

47

df Sig.

White Non-

White

Chi-

Square

6 .000*

81.0% 82.5%

11

6 .000*

13.7% 14.2%

11

4

4

4

4

0.21

0.02

0.02

0.02

6.6% 4.6% 4.8% 4.3%

68.3% 77.4% 78.8% 79.9%

23.1% 17.0% 16.6% 15.8%

8.6% 5.6% 4.6% 4.3%

47

109

109

109

6

6

6

6

.000*

.000*

.000*

.000*

5.3%

77.2% 72.9%

17.3% 21.0%

5.6%

3.3%

6.1%

11

13

13

13

df Sig.

2

2

2

2

2

2

.005*

.005*

.005*

.002*

.002*

.002*

E3 Were you encouraged to touch, hold and comfort your baby?

1 Yes, definitely 76.5% 76.5% 77.7%

2 Yes, to some extent 18.4% 18.6% 17.7%

E4 Did you have as much

‘kangaroo care’ (skin- to-skin contact) with your baby as you wanted?

2

2

3 No

1 Yes, definitely

5.1% 4.9% 4.7%

50.6% 49.9% 49.0%

2

11

2 Yes, to some extent 20.3% 21.3% 21.2%

11

3 No, not as much kangaroo care as wanted

5 I did not know about kangaroo care

20.0% 17.7% 19.4%

11

9.0% 11.1% 10.4%

11

4 0.81

69.1% 77.3% 78.1% 81.7%

125

4 0.81

22.9% 18.1% 17.9% 14.9%

125

4 0.81

8.0% 4.6% 4.0% 3.4%

125

6 0.08

42.9% 48.5% 52.2% 54.2%

102

6 0.08

19.6% 22.0% 21.0% 21.3%

102

6 0.08

24.7% 18.4% 17.8% 15.5%

102

6 .000*

75.4% 84.7%

63

6 .000*

19.3% 12.4%

63

6 .000*

5.3% 2.9%

63

9 .000*

47.4% 61.4%

114

9 .000*

21.3% 19.9%

114

9 .000*

20.4% 10.7%

114

2 .000*

2 .000*

2 .000*

3 .000*

3 .000*

3 .000*

6 0.08

12.9% 11.1% 9.0% 9.1%

102 9 .000*

10.8% 8.0%

114 3 .000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 139

E5 Did the doctors and nurses include you in discussions about your baby’s care and treatment?

E6 Were you told about any changes in your baby’s condition or care?

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

1 Yes, always

2 Yes, sometimes

SCBU LNU NICU

Chi-

Square

54.5% 54.4% 54.4%

35.9% 35.2% 35.7%

3 No 9.7% 10.4% 9.8%

1 Yes, always or nearly always

78.4% 77.7% 75.4%

2 Yes, to some extent 18.0% 18.8% 20.8%

1

1

1

8

8

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4

4

4

4

0.88

0.88

0.88

0.09

50.7% 55.5% 54.7% 56.5%

38.1% 34.0% 36.5% 33.6%

11.2% 10.5% 8.8% 9.8%

73.2% 76.6% 79.3% 79.2%

24

24

24

37

df Sig.

White Non-

White

6 .001*

53.8% 57.9%

6 .001*

36.0% 33.1%

Chi-

Square

9

9

6 .001*

10.2% 9.0%

6 .000*

77.2% 77.2%

9

1

4 0.09

21.8% 19.6% 18.1% 17.6%

37 6 .000*

19.3% 18.7%

1

df Sig.

2

2

2

2

2

.010*

.010*

.010*

0.55

0.55

3 No, I was not told about changes

3.5% 3.5% 3.8%

8

E7 When a ward round was taking

69.6% 62.2% 59.0%

92

place, were you allowed to be present when your baby was being

2 Yes, to some extent 18.1% 18.0% 17.5%

92

discussed?

1 Yes, always or nearly always

3 No, I was not allowed to be there

E8 Did staff arrange your baby’s

1 Yes, always or

care (such as weighing, bathing) to

nearly always

fit in with your usual visiting times?

2 Yes, sometimes

3 No

12.3% 19.8% 23.5%

59.1% 55.4% 52.4%

21.7% 24.0% 25.0%

92

23

23

E9 Overall, did staff help you feel confident in caring for your baby?

1 Yes, definitely

19.2% 20.6% 22.6%

23

77.0% 76.6% 76.3%

2 Yes, to some extent 18.8% 19.5% 19.5%

1

1

3 No 4.2% 3.9% 4.2%

1

Copyright 2011 Picker Institute Europe. All rights reserved.

4 0.09

4.9% 3.8% 2.6% 3.3%

37

4 .000*

60.5% 64.0% 66.0% 61.7%

16

4 .000*

19.7% 17.0% 16.3% 18.2%

16

4 .000*

19.9% 19.0% 17.7% 20.1%

16

4 .000*

48.4% 55.1% 57.6% 59.1%

71

4 .000*

25.5% 24.6% 22.5% 22.9%

71

4 .000*

26.1% 20.3% 19.9% 18.0%

71

4 0.91

70.8% 76.9% 79.0% 79.0%

66

4 0.91

23.0% 19.3% 18.0% 17.6%

66

4 0.91

6.1% 3.9% 3.0% 3.4%

66

Page 140

6 .000*

3.5% 4.0%

1

6 0.01

65.4% 50.4%

107

6 0.01

16.9% 22.8%

107

6 0.01

17.7% 26.8%

107

6 .000*

56.7% 49.0%

30

6 .000*

23.1% 26.8%

30

6 .000*

20.2% 24.2%

30

6 .000*

76.7% 76.2%

2

6 .000*

19.2% 20.2%

2

6 .000*

4.2% 3.5%

2

2 0.55

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 .000*

2 0.36

2 0.36

2 0.36

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

E10 If you wanted to express breast milk for your baby, were you given the support you needed from neonatal staff?

1 Yes, definitely

3 No

78.2% 75.9% 74.5%

2 Yes, to some extent 15.2% 17.7% 18.0%

10

6.7% 6.4% 7.5%

10

10

E11 Were you given the equipment you needed, such as a breast

1 Yes, definitely 84.8% 84.4% 84.1%

pump and sterilisation equipment?

2 Yes, to some extent 8.2% 8.8% 8.7%

1

1

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.04

72.5% 76.5% 77.3% 76.9%

18

4 0.04

19.1% 16.2% 17.2% 16.6%

18

df Sig.

White Non-

White

Chi-

Square

6 .006*

75.0% 81.0%

22

6 .006*

17.9% 14.0%

22

4

4

4

0.04

0.92

0.92

8.4%

8.6%

7.3%

9.3%

5.5%

7.6%

6.5%

82.3% 83.1% 86.5% 84.8%

9.1%

18

21

21

6

6

6

.006*

.002*

.002*

7.2% 5.0%

84.4% 84.1%

8.7% 8.4%

22

1

1

df Sig.

2

2

2

2

2

.000*

.000*

.000*

0.75

0.75

E12 Were you given enough privacy for expressing milk for your baby?

3 No

1 Yes, definitely

7.0% 6.8% 7.2%

76.9% 76.1% 77.8%

2 Yes, to some extent 15.5% 17.1% 15.9%

1

9

9

4 0.92

9.0% 7.6% 5.9% 6.1%

21

6 0.15

73.1% 77.2% 78.5% 77.8%

22

6 0.15

18.0% 16.9% 15.1% 15.5%

22

6 .002*

6.9% 7.4%

1

9 .008*

75.7% 81.8%

23

9 .008*

17.2% 12.4%

23

2 0.75

3 .000*

3 .000*

3 No, and it bothered me

4 No, but I did not mind

1 Yes

4.8% 4.7% 3.6%

2.8% 2.1% 2.7%

99.2% 98.8% 98.8%

9

9

2

6 0.15

6 0.15

6.0% 3.8% 4.1% 4.0%

22

2.9% 2.1% 2.3% 2.7%

22

2 0.44

98.1% 98.9% 99.1% 99.3%

13

9 .008*

4.6% 3.4%

23

9 .008*

2.5% 2.4%

23

3 .005*

99.3% 97.2%

41

3 .000*

3 .000*

1 .000*

E13 Were there facilities on the neonatal unit for the storage of breast milk?

2 No .8% 1.2% 1.2%

2 2 0.44

1.9% 1.1% .9% .7%

13 3 .005*

.7% 2.8%

41 1 .000*

E14 If you wanted to breastfeed your baby were you given enough support to do this from neonatal staff?

1 Yes, definitely

3 No

75.7% 73.4% 73.3%

2 Yes, to some extent 16.9% 19.0% 19.5%

7.4% 7.6% 7.2%

5

5

5

4 0.27

69.9% 72.2% 75.7% 76.3%

49

4 0.27

18.8% 19.8% 18.3% 17.8%

49

6 .000*

72.8% 79.0%

22

6 .000*

19.3% 15.6%

22

6 .000*

7.9% 5.4%

22

2 .000*

2 .000*

2 .000*

Copyright 2011 Picker Institute Europe. All rights reserved.

4 0.27

11.3% 7.9% 5.9% 5.9%

49

Page 141

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

1 Yes, definitely

2 Yes, to some extent

SCBU LNU NICU

Chi-

Square

67.0% 66.5% 66.7%

21.6% 22.5% 21.8%

2

2

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

6 0.89

64.1% 66.5% 68.0% 67.2%

23

6 0.89

23.3% 22.7% 21.5% 21.3%

23

df Sig.

White Non-

White

Chi-

Square

9 .006*

64.8% 75.0%

50

9 .006*

23.3% 16.8%

50

df Sig.

3

3

.000*

.000*

E15 Were you given enough privacy for breast feeding your baby?

3 No, and it bothered me

4 No, but I did not mind

1 Yes, definitely

6.5%

4.9%

6.4%

4.5%

6.2%

5.3%

2

2

E16 If you bottle fed your baby

(formula milk) were you given enough support to do this from neonatal staff?

2 Yes, to some extent

75.8% 74.1% 73.5%

19.6% 20.6% 20.6%

4

4

3 No 4.6% 5.3% 5.9%

4

F1 Were you given enough privacy when discussing your baby’s care on the neonatal unit with staff?

1 Yes, always or nearly always

64.8% 62.4% 61.0%

20

2 Yes, to some extent 21.3% 24.5% 23.2%

20

6

6

4

4

4

6 .003*

57.9% 63.7% 63.8% 64.2%

70

6

0.89

0.89

0.43

0.43

0.43

.003*

8.1%

4.5%

6.8%

4.0%

5.8%

4.7%

5.5%

6.0%

69.3% 73.6% 75.5% 78.9%

24.5% 21.7% 19.5% 16.2%

6.2% 4.7% 5.0% 4.9%

40

28.6% 22.4% 22.1% 21.0%

23

23

40

40

70

9

9

6

6

6

9 .000*

62.9% 60.8%

12

9

.006*

.006*

.000*

.000*

.000*

.000*

6.7%

5.2%

5.4%

5.0%

3.2%

73.7% 77.3%

20.8% 18.2%

4.5%

22.7% 26.5%

50

50

6

6

6

12

3

3

2

2

2

3

3

.000*

.000*

0.06

0.06

0.06

.006*

.006*

3 No 6.9% 6.9% 7.6%

20

F3 Was there enough space for you to sit alongside your baby’s cot in the unit?

4 No, but I did not mind

1 Yes, always or nearly always

2 Yes, sometimes

7.0% 6.3% 8.2%

69.0% 64.0% 64.7%

20

22

F4 In your opinion, was there adequate security on the neonatal unit?

3 No, never

1 Yes, definitely

27.4% 32.5% 32.3%

22

3.6% 3.5% 3.0%

80.6% 76.2% 73.8%

22

38

2 Yes, to some extent 16.3% 19.2% 22.1%

38

3 No 3.1% 4.6% 4.2%

38

Copyright 2011 Picker Institute Europe. All rights reserved.

6 .003*

8.5% 7.0% 6.5% 6.7%

70

6 .003*

5.0% 6.9% 7.7% 8.2%

70

4 .000*

59.8% 66.0% 66.6% 68.6%

54

4 .000*

35.2% 31.1% 30.6% 28.5%

54

4 .000*

5.0% 2.9% 2.8% 2.9%

54

4 .000*

73.5% 77.8% 77.1% 77.8%

37

4 .000*

20.3% 18.7% 19.6% 18.7%

37

4 .000*

6.2% 3.5% 3.4% 3.5%

37

Page 142

9 .000*

7.2% 6.8%

12

9 .000*

7.2% 5.9%

12

6 .000*

65.1% 67.3%

6 .000*

31.6% 29.1%

6 .000*

3.3% 3.6%

6 .000*

76.6% 76.3%

6 .000*

19.2% 19.9%

6 .000*

4.2% 3.7%

1

4

4

4

1

1

3 .006*

3 .006*

2 0.16

2 0.16

2 0.16

2 0.65

2 0.65

2 0.65

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

46.3% 42.8% 44.1%

6

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.22

39.4% 42.1% 45.8% 48.6%

40

df Sig.

White Non-

White

Chi-

Square

6 .000*

45.3% 37.7%

26

df Sig.

2 .000*

F5 If you (and/or your partner or companion) wanted to stay overnight to be close to your baby,

1 Yes, always or

did the hospital offer you accommodation?

nearly always

2 Yes, sometimes

3 No

16.0% 17.2% 16.8%

37.7% 40.0% 39.1%

6

6

F6 Were you able to visit your baby on the unit as much as you wanted to?

1 Yes, definitely

F8 If you had your other children with you when visiting the unit, was there somewhere they could play?

F9 Were you able to contact the unit by telephone whenever you needed to?

3 No

2 Yes, there was a supervised play room/area

3 Yes, there was an unsupervised play room/area

4 No, there was nowhere for them to play

5 Children were not allowed to visit the unit

1 Yes, always or nearly always

2 Yes, sometimes

3 No, never

90.1% 89.3% 88.8%

2 Yes, to some extent 7.4% 8.4% 8.6%

2.5%

3

3

10.1% 8.2% 8.2%

97

56.8% 49.9% 41.3%

26.9% 33.6% 34.6%

6.3%

93.6% 91.8% 90.2%

4.9%

1.5%

2.3%

8.3% 15.8%

6.0%

2.2%

2.5%

7.1%

2.7%

3

97

97

97

14

14

14

4

4

4

4

4

6

6

6

4

4

4

0.22

0.22

0.52

0.52

0.52

.000*

.000*

.000*

.007*

.007*

.007*

17.8% 16.6% 17.2% 15.6%

42.8% 41.3% 37.0% 35.8%

88.1% 89.6% 90.4% 89.3%

9.3%

2.6% 2.3% 2.1% 2.5%

6 .000*

10.5% 10.8% 7.4% 7.7%

46

40.8% 48.3% 50.4% 51.9%

33.3% 31.7% 33.1% 31.5%

15.4%

89.1% 92.3% 92.7% 92.7%

7.5%

3.5%

8.0%

9.2%

5.8%

1.9%

7.5%

9.1%

5.6%

1.7%

8.2%

8.9%

5.5%

1.8%

40

40

6

6

6

46

46

46

24

24

24

6

6

6

6

6

.000*

.000*

0.37

0.37

0.37

16.7% 16.9%

38.0% 45.4%

89.4% 89.0%

8.1% 8.6%

2.4% 2.4%

26

26

0

0

0

9 .000*

6.8% 18.0%

119

9

9

9

6

6

6

.000*

.000*

.000*

.000*

.000*

.000*

51.5% 35.7%

32.5% 31.2%

9.2% 15.0%

93.0% 85.6%

5.3%

1.7%

9.8%

4.6%

119

119

119

75

75

75

2

2

2

2

2

3

3

3

3

2

2

2

.000*

.000*

0.82

0.82

0.82

.000*

.000*

.000*

.000*

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 143

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

G1 Were you given enough written information to help you understand your baby’s condition and treatment?

1 Yes, definitely

3 No, I was not given enough written information

39.2% 40.3% 39.4%

2 Yes, to some extent 21.3% 20.8% 21.6%

11.6% 12.1% 11.2%

3

3

3

27.8% 26.8% 27.8%

3

4 I did not get any written information

G2 If you needed help

1 Yes

understanding written or spoken

English, was information given in a

2 No

language you could understand?

82.0% 76.1% 78.9%

18.0% 23.9% 21.1%

3

3

G3 When you asked questions about your baby’s condition and treatment, did you get answers you could understand?

1 Yes, always or nearly always

2 Yes, sometimes

3 No

G4 Did a member of staff explain

1 Yes, always or

the purpose of any tests your baby had in a way you could

nearly always

2 Yes, sometimes

understand?

3 No

G5 If your baby had any surgery, did a member of staff explain the

1 Yes, always or nearly always

operation and its outcome in a way you could understand?

2 Yes, sometimes

3 No

71.8% 72.6% 73.3%

25.2% 24.7% 23.7%

3.0% 2.7% 2.9%

79.1% 79.1% 78.6%

18.4% 18.2% 18.6%

2.5% 2.7% 2.8%

1

1

73.8% 71.8% 82.6%

15

12.8% 15.7% 12.1%

13.5% 12.5% 5.3%

2

2

2

1

15

15

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

6 0.83

37.8% 39.3% 39.6% 42.6%

30

6 0.83

21.0% 20.5% 22.0% 20.8%

30

df Sig.

White Non-

White

Chi-

Square

9 .001*

38.8% 44.6%

31

9 .001*

20.9% 22.5%

31

df Sig.

3

3

.000*

.000*

6

6

2

2

4

4

4 0.75

4 0.94

71.1% 77.9% 82.5% 83.2%

141

4

4

4

4

0.83

0.83

0.22

0.22

0.75

0.75

0.94

0.94

.005*

.005*

14.1% 11.8% 11.8%

27.0% 28.5% 26.7% 27.2%

76.2% 78.7% 77.6% 80.9%

23.8% 21.3% 22.4% 19.1%

61.2% 71.6% 76.3% 79.5%

34.2% 25.0% 21.4% 19.0%

4.6% 3.4% 2.3% 1.6%

225

24.1% 19.7% 15.6% 15.1%

4.8% 2.5% 2.0%

9.5%

1.8%

66.8% 78.9% 82.4% 81.0%

17.6% 14.3% 9.2% 12.2%

30

30

2

2

225

225

141

141

20

20

4 .005*

15.6% 6.8% 8.5% 6.8%

20

9

9

3

3

6

6

.001*

.001*

0.64

0.64

.000*

.000*

11.8% 11.2%

28.5% 21.8%

79.6% 76.5%

20.4% 23.5%

72.6% 73.0%

24.5% 24.4%

6 .000*

2.9% 2.6%

6 .000*

79.4% 76.8%

6 .000*

17.9% 20.8%

6 .000*

2.7% 2.5%

6

6

.003*

.003*

11.0% 19.4%

7.7% 14.0%

31

31

1

1

0

0

0

7

7

7

6 .003*

81.3% 66.7%

19

19

19

3

3

1

1

2

2

.000*

.000*

0.26

0.26

0.81

2 0.81

2 0.03

2

2

2

2

2

0.81

0.03

0.03

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 144

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

G6 Did you read your baby’s medical notes (not just the nursing notes) while they were in the

1 Yes

2 No, but I wanted to read them

neonatal unit?

3 No, but I did not want to read them

4 I did not know about or see the medical notes

G7 Were you offered emotional support or counselling services?

1 Yes

43.4% 46.4% 40.9%

18.3% 19.1% 22.5%

8.6% 7.9% 8.6%

29.6% 26.6% 28.0%

32

17.4% 16.4% 21.2%

32

32

32

28

2 No, but I would have liked to have been offered this

25.2% 25.9% 24.4%

28

3 I did not need any emotional support or counselling

57.3% 57.7% 54.3%

28

G8 Were you given information about any help you could get with travelling expenses, parking costs or food vouchers?

1 Yes, definitely

3 No

27.3% 24.9% 22.6%

2 Yes, to some extent 20.4% 23.2% 22.2%

16

52.3% 51.9% 55.2%

16

16

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

6 .000*

49.7% 42.4% 42.0% 42.4%

59

6 .000*

20.6% 20.8% 20.0% 18.8%

59

df Sig.

White Non-

White

Chi-

Square

9 .000*

43.2% 48.1%

34

9 .000*

19.5% 22.4%

34

6

6

4

4

4

4

4

.000*

.000*

.000*

.000*

.000*

.002*

.002*

6.1% 8.2% 9.1% 9.5%

23.7% 28.7% 28.9% 29.3%

16.9% 18.1% 16.9% 20.3%

24.9% 27.4% 26.1% 23.2%

58.1% 54.5% 57.1% 56.5%

21.2% 23.9% 26.2% 27.6%

19.1% 22.7% 23.6% 23.4%

59

59

22

22

22

53

53

4 .002*

59.8% 53.4% 50.3% 49.0%

53

9

9

6

6

6

6

6

6

.000*

.000*

.001*

.001*

.001*

.000*

.000*

.000*

8.7% 6.2%

28.6% 23.4%

17.4% 22.0%

25.1% 26.6%

57.6% 51.4%

25.5% 20.9%

23.1% 18.0%

51.4% 61.1%

34

34

24

24

24

39

39

39

df Sig.

3 .000*

3 .000*

3

3

2

2

2

2

2

2

.000*

.000*

.000*

.000*

.000*

.000*

.000*

.000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 145

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

30.0% 31.8% 32.1%

3

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.55

29.3% 30.2% 32.5% 33.6%

93

df Sig.

White Non-

White

Chi-

Square

6 .000*

31.4% 31.5%

30

df Sig.

2 .000*

G9 Did staff give you any information about parent support groups, such as Bliss or other local groups?

1 Yes, staff gave me this information

2 No, but this information was available in the unit

(e.g. a leaflet in the parents’ room)

35.2% 34.4% 33.6%

3

3 No, I did not get this information

H1 In total, how long did your baby

1 Up to one week

stay in neonatal care (include all the hospitals they stayed in)?

2 More than 1 week but less than 4 weeks

34.7% 33.8% 34.2%

46.9% 48.7% 45.9%

36.7% 35.3% 35.6%

3

39

39

4

4

8

8

0.55

0.55

.000*

.000*

28.7% 33.9% 36.3% 37.5%

42.0% 35.9% 31.2% 28.8%

46.8% 49.2% 47.4% 46.0%

35.5% 34.3% 35.6% 37.2%

93

93

18

18

6

6

12

12

.000*

.000*

0.12

0.12

35.5% 28.5%

33.1% 40.0%

48.5% 41.5%

36.1% 33.8%

30

30

84

84

2

2

4

4

.000*

.000*

.000*

.000*

3 More than 4 weeks but less than 8 weeks

10.6% 9.9% 9.7%

39 8 .000*

10.0% 10.1% 10.9% 9.5%

18 12 0.12

9.1% 14.9%

84 4 .000*

H2 In your opinion, was your baby’s stay in neonatal care…

4 More than 8 weeks but less than 12 weeks

4.0% 3.7% 4.7%

39

5 More than 12 weeks 1.7% 2.4% 4.1%

39

1 Shorter than was needed

2 About right

3 Longer than was needed

3.9% 5.1% 5.4%

11

86.4% 86.9% 86.0%

11

9.6% 8.0% 8.6%

11

Copyright 2011 Picker Institute Europe. All rights reserved.

8 .000*

4.3% 4.1% 3.9% 4.1%

18 12 0.12

3.9% 5.0%

84

8 .000*

3.4% 2.3% 2.2% 3.2%

18 12 0.12

4 0.03

6.1% 5.1% 4.4% 4.2%

44 6 .000*

2.4%

4.1%

4.7%

9.1%

84

71

4

4

0.03

0.03

82.4% 86.7% 88.0% 88.4%

11.5% 8.2% 7.5%

Page 146

7.4%

44

44

6 .000*

87.0% 84.1%

71

6 .000*

8.9% 6.8%

71

4 .000*

4 .000*

2 .000*

2 .000*

2 .000*

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

H3 When your baby was discharged from the neonatal unit, where did they go next?

1 A hospital maternity ward

2 Another ward in the hospital

3 Home

4 Somewhere else

1 Yes

SCBU LNU NICU

Chi-

Square

27.4% 28.8% 30.0%

108

2.3% 3.0% 6.8%

69.5% 67.7% 62.0%

.9% .5% 1.2%

108

82.7% 78.9% 78.1%

108

108

17

H4 Were you offered accommodation overnight at the hospital before your baby came home?

2 No, but I would have liked it

3 No, but I did not want or need it

1 Yes, definitely

2.7% 4.6% 4.5%

17

14.6% 16.5% 17.5%

17

76.2% 74.9% 72.4%

13

H5 Did you feel prepared for your baby’s discharge from neonatal care?

2 Yes, to some extent 20.2% 21.4% 23.0%

13

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

6 .000*

27.0% 30.0% 28.4% 29.3%

12

df Sig.

White Non-

White

Chi-

Square

9 0.24

29.7% 24.4%

22

6

6

6

4 .002*

78.8% 80.8% 78.2% 81.3%

20

4 .002*

5.6% 4.0% 3.9% 2.9%

20

4

4

4

.000*

.000*

.000*

.002*

0.01

0.01

4.1%

1.0%

4.6%

.9%

3.7%

.8%

3.6%

67.8% 64.5% 67.0% 66.5%

.6%

15.6% 15.2% 17.9% 15.8%

76.5% 74.8% 74.6% 72.5%

19.6% 21.4% 22.0% 23.0%

12

12

12

20

13

13

9

9

9

6

6

6

0.24

0.24

0.24

.003*

0.04

0.04

3.7% 5.2%

65.8% 69.3%

.8% 1.1%

15.2% 21.3%

74.6% 73.7%

21.5% 22.2%

22

22

22

6 .003*

81.4% 71.5%

61

6 .003*

3.4% 7.2%

61

61

1

1

df Sig.

3

3

3

3

2

2

2

2

2

.000*

.000*

.000*

.000*

.000*

.000*

.000*

0.73

0.73

3 No

H6 Did your baby need any special equipment when s/he was discharged from the unit?

1 Yes

2 No

3.5% 3.6% 4.6%

13

7.7% 8.4% 11.9%

34

92.3% 91.6% 88.1%

34

4 0.01

3.9% 3.8% 3.3% 4.5%

13

2 .000*

11.1% 8.7% 9.2% 8.7%

10

2 .000*

88.9% 91.3% 90.8% 91.3%

10

6 0.04

3 0.02

3.9% 4.1%

9.1% 10.3%

3 0.02

90.9% 89.7%

1

2

2

2 0.73

1 0.17

1 0.17

H7 Were you given enough information and guidance on using

2 Yes, to some extent 12.1% 16.9% 17.6%

the equipment when your baby left the neonatal unit?

1 Yes, definitely 82.2% 76.9% 78.0%

3 No 5.7% 6.1% 4.4%

4

4

4

Copyright 2011 Picker Institute Europe. All rights reserved.

4 0.43

72.5% 79.3% 80.4% 82.4%

13

4 0.43

22.9% 13.3% 15.0% 12.4%

13

4.7% 7.4% 4.7% 5.2%

13 4 0.43

Page 147

6 0.04

78.9% 76.3%

6 0.04

15.6% 19.2%

6 0.04

5.6% 4.5%

1

1

1

2 0.49

2 0.49

2 0.49

Type of unit baby was discharged from

Pearson Chi-square

Tests

Age group from response or sample age if missing

Pearson Chi-square

Tests

Ethnic group from response data else

Pearson Chi-square

sample information if

Tests

response missing

SCBU LNU NICU

Chi-

Square

H8 Were you given enough information on what to expect in terms of your baby’s progress and recovery?

1 Yes, definitely

3 No

53.5% 53.2% 55.4%

2 Yes, to some extent 30.5% 32.0% 30.9%

16.0% 14.7% 13.6%

8

8

8

H11 If you saw a health visitor, did s/he have enough information about the development of babies who had received neonatal care?

1 Yes, definitely

3 No

1 Yes, definitely

40.3% 38.6% 38.3%

2 Yes, to some extent 33.6% 34.6% 35.3%

26.1% 26.8% 26.4%

3

3

3

60.0% 56.4% 60.2%

14

H12 Overall, after your baby arrived home, did you get enough support from health professionals?

2 Yes, to some extent 30.3% 33.2% 30.8%

14

3 No 9.7% 10.4% 9.0%

14

J1 Did your baby stay in a neonatal

1 Yes

unit in more than one hospital?

2 No

19.3% 10.0% 10.8%

127

80.7% 90.0% 89.2%

127

df Sig.

16-27 28-31 32-35 36 and over

Chi-

Square

4 0.11

51.5% 55.3% 54.3% 54.8%

56

4 0.11

29.0% 30.7% 32.6% 32.6%

56

df Sig.

White Non-

White

Chi-

Square

6 .000*

52.7% 60.5%

31

6 .000*

32.2% 27.1%

31

df Sig.

2

2

.000*

.000*

4 0.11

19.6% 14.0% 13.1% 12.6%

56

4 0.59

42.3% 37.4% 37.6% 38.5%

24

4 0.59

31.3% 35.7% 34.2% 36.7%

24

4 0.59

26.4% 26.9% 28.2% 24.8%

24

4 .008*

56.8% 58.1% 58.3% 60.3%

16

4 .008*

31.6% 31.6% 32.9% 30.8%

16

4 .008*

11.6% 10.3% 8.8% 8.9%

16

2 .000*

12.6% 11.2% 13.8% 12.6%

7

2 .000*

87.4% 88.8% 86.2% 87.4%

7

6 .000*

15.1% 12.4%

31

6 .001*

36.6% 51.0%

121

6 .001*

35.2% 31.2%

121

6 .001*

28.2% 17.7%

121

6 0.01

58.8% 56.9%

3

6 0.01

31.4% 33.6%

3

6 0.01

9.9% 9.5%

3

3 0.08

11.8% 16.2%

21

3 0.08

88.2% 83.8%

21

2 .000*

2 .000*

2 .000*

2 .000*

2 0.22

2 0.22

2 0.22

1 .000*

1 .000*

Copyright 2011 Picker Institute Europe. All rights reserved. Page 148

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