Foreword xi
Preface xv
Introduction xvii
Part I: Basic Conc epts of Pati ent- and
Family-Centered Care 1
1. Designing Family-Centered Care 3
Partnering in Family-Centered Newborn Care 4
System- and Provider-Centered Approaches
to Health Care 15
Family-Focused Approach to Health Care 17
Changing the Organizational Culture to Support
Family-Centered Care 18
Key Points 23
References 24
2. Creating the Family-Centered Environment 25
Environmental Considerations 26
The Language of Partnership 31
The "Visitation" Policy 32
How Families Can Improve Systems of Care 38
Family Advisors' Role in Enhancing the Family-Centered
Environment 41
Key Points 43
References 44
viii Contents
Part II: Appl ying Conc epts in Mat ernity Care 45
3. Supporting the Mother and Family With
a High-Risk Pregnancy 47
Antenatal Counseling of the High-Risk Mother 47
Support of Mothers During High-Risk Pregnancy
Hospitalization 50
Preparation for Possible NICU Admission 52
Key Points 53
References 54
4. The Birth Plan 55
Partnering With Families Through a Birth Plan 55
Strategies for Supporting and Improving the Birth Plan 56
When a Birth Plan Must be Abandoned 59
Key Points 63
References 63
5. Supporting the Infant, Mother, and Family in the
Birthing Room and Beyond 65
Keeping the Family Together in the Birthing Room 66
Supporting Partnerships in Emergency Situations 71
Mother-Baby Care 72
Key Points 76
References 76
6. Supporting the Mother and Family During
Admission, Procedures, and Resuscitation in the NICU 79
Welcoming Parents During NICU Admission 79
Welcoming Parents During Procedures 85
Welcoming Parents During Resuscitation 88
Key Points 90
References 91
Part III: Appl ying Conc epts in the NICU
Environment 93
7. Supporting the Role of the Mother and
Family in the NICU 95
Defining and Supporting the Family's Role in the NICU 95
Challenges to the Family's Role in Care 97
Contents ix
The Nurses' Role as Coach 107
Supporting Nursing Staff to Empower the Family in
the Baby's Care 108
Key Points 111
References 111
8. Welcoming Parents During Interdisciplinary
Rounds and Nurse Hand-Offs 113
Challenges to Welcoming Parents During Rounds or
Nurse Hand-Offs 114
Benefits of Family-Centered Rounds and Hand-Offs 118
Parents as Educators 119
Staff Education and Support 121
Key Points 122
References 122
9. Planning for the Journey Home 125
Physical Examinations as a Partnership Opportunity 126
Making the Transition From the NICU to Home 127
From Discharge Planning to Partnership in Care 128
Monthly Care Meetings 134
Key Points 135
Reference 135
10. Family Support 137
Virtual Connections 137
In-Person Connections 138
Key Points 139
References 140
Part IV: Family-Centered Care du ring
Chall enging Situati ons 141
11. Communicating With and Supporting Parents in
Palliative Care, Withdrawal of Support, and Bereavement 143
Antenatal Planning for Palliative Care 143
Strategies for Communicating Bad News to Parents 145
Supporting Families During and After the Baby's Death 146
Key Points 150
References 150
x Contents
12. Challenging Situations 153
Parents Who Never Come 156
Parents Who Are "Overinvolved" 159
Angry Parents 160
Parents in Denial 162
Parents Who Overstimulate the Baby 163
Mothers With Substance Abuse 165
Key Points 167
References 167
13. Resources and Tools to Advance Patient- and Family-
Centered Care 169
Websites 170
Index 171