Abigail Wilpers PhD WHNPBC Mert Ozan Bahtiyar MD David Stitelman MD Janene Batten MLS Roberto X Calix MD Victoria Chase MD BS Nicholas Yung MD Nathan Maassel MD Gina Novick PhD CNM FACNM ID: 933020
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Slide2The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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Slide3The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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Slide4The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
4
Howell &
Adzick
, 1999
Slide5The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
5
Sandelowski
& Jones, 1996
Slide6The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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To synthesize the qualitative literature on parental experiences in fetal care centers to reflect events that happened across the continuum of care and to better understand parents’ positive and negative experiences with care delivery.
OBJECTIVE
Slide7The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
7
ACOG & AAP, 2011; Moise, 2014
RESEARCH TEAM
Principal investigator
– Abigail
Wilpers
, PhD, WHNP-BC
Maternal-Fetal Medicine
Mert Ozan Bahtiyar, MD. Associate Professor of Obstetrics, Gynecology, and Reproductive Sciences;
Medical Director, The Fetal Care Center
Roberto Calix, MD. Maternal-Fetal Medicine Fellow
Victoria Chase, MD, BS. Maternal-Fetal Medicine Fellow
Pediatric Surgery
David Stitelman, MD. Assistant Professor of Surgery (Pediatrics); Assistant Professor of Surgery (Pediatrics) and Obstetrics, Gynecology & Reproductive Sciences;
Surgical Director, The Fetal Care Center
Nicholas Yung, MD. Surgical Resident
Nathan
Maassel
, MD. Surgical Resident
Nursing and methods experts
Janene Batten, MLS. Nursing Librarian; Department of Research and Educational Services, Yale University
Gina Novick, PhD, CNM, FACNM. Associate Professor at Yale School of Nursing in the Midwifery and Women’s Health Nurse Practitioner Specialty
Slide8The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
8
Paterson, Thorne, et al., 2001
STUDY DESIGN
Metasynthesis: deconstruct, integrate, and transform
New concepts, clinical direction, policy development
Metasynthesis approach: meta-study
Slide9The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
9
SYSTEMATIC REVIEW
May 2019, repeated June 2020
Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) and Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ).
Databases: MEDLINE, Embase, Cochrane, CINAHL, Web of Science, ProQuest
Eligibility criteria
English in peer-reviewed journal or
Proquest
Full text
Qualitative component
Parent’s experiences of tertiary, coordinated multidisciplinary prenatal diagnosis and care
At least one obstetric and pediatric specialist working together
Slide10The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
10
STUDY SELECTION
Covidence
Review by two researchers
Joanna Briggs Institute Critical Appraisal Checklist for Qualitative Research
Slide11The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
11
DATA ANALYSIS: META-METHOD AND THEORY SNAPSHOT
Slide12The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
12
DATA ANALYSIS: META-DATA ANALYSIS
Interpretive description
(Thorne S, Kirkham SR, MacDonald-
Emes
, 1997)
Slide13The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
13
FINDINGS: SAMPLE CHARACTERISTICS
13 studies from 2004-2020 (69% in the last 5 years)
11 different multidisciplinary practices across North America and Europe
Combined 217 participants
71% (n=153) expectant mothers
28% (n=61) expectant fathers
1% (n=3) other support persons
Limited sociodemographic data – e.g., race and/or ethnicity reported in only 6 studies, mostly white
Slide14The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
14
FINDINGS: PATIENT JOURNEY MAP
Slide15The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
15
Gaining understanding and feeling understood
Realizing agency and control
Finding hope and meaning
FINDINGS: THEMES ASSOCIATED WITH A POSITIVE CARE EXPERIENCE
Slide16The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
16
THEME 1: GAINING UNDERSTANDING AND FEELING UNDERSTOOD
Parents sought to gain understanding of
Fetal condition
Possible causes (most importantly – was it something they did or didn’t do?!)
Options
Prognosis (especially quality of life)
Next steps
Parents wanted to feel understood as
People who have been through a journey (“know our story”)
Parents trying to make compassionate decisions for their child (even if pregnancy termination)
People with unique values, beliefs, and informational preferences
Slide17The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
17
FINDINGS: PATIENT JOURNEY MAP
Slide18The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
18
FINDINGS: PATIENT JOURNEY MAP
“The most important thing I learned was that I wasn’t doing something wrong . . . these things happen.”
15
Slide19The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
19
THEME 1: GAINING UNDERSTANDING AND FEELING UNDERSTOOD
Slide20The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
20
THEME 2: REALIZING AGENCY AND CONTROL
Parents felt
Uncertainty (e.g., unconfirmed diagnoses, changing prognoses, experimental treatments)
Helpless
Powerless
“Not able to do my job” (as a parent) “hardest part”
Parents wanted to feel
Like “good parents” who could make good decisions for their child
Power over the things they could control
FIRST ACT AS A PARENT
Slide21The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
21
FINDINGS: PATIENT JOURNEY MAP
“ ‘I know we are not you, and I know you can’t tell us what to do, but if it was your daughter'. . . I tried. I asked about 20 different ways with different wording, trying to get [the doctor] to say something.”
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Slide22The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
22
FINDINGS: PATIENT JOURNEY MAP
“[I know] there’s not much I can be doing to fix anything, but what can I be doing to give her the best chances to be growing the right way? That became my mission....”
17
Slide23The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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FINDINGS: PATIENT JOURNEY MAP
“I was worried… but I got them under control about that.
‘Cause
they were giving it to him as they were reducing [his gastroschisis] but the mama bear kicked in so now they are giving it to him before, so it has time to get in his system and they give him a little bit afterwards”
21
Slide24The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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THEME 3: FINDING HOPE AND MEANING
Hope
Not the same as optimism
Essential to surviving the experience
Possible even with a life-limiting diagnosis
Easily misunderstood
Meaning
Spiritual process for some
Related to peace and acceptance
Human connections
Paying it forward - helping other families
“Every minute is a miracle.”
17
“I understand why doctors don’t want to get people too optimistic or create unrealistic expectations, but I think you can create realistic expectations, put all of the possibilities out on the line, and still be able to comfort someone in saying, ‘You know we’re here and we’re going to manage this case with the expectation of the best outcome possible.’ “
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Slide25The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
25
FINDINGS: PATIENT JOURNEY MAP
“The fact that she had a good heart said
that she would live, at least until birth, so that we could donate the heart.”
17
Slide26The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
26
FINDINGS: PATIENT JOURNEY MAP
“We feel privileged to be a part of a study like this . . . being able to be a part of something that will help somebody down the road makes us feel really good . . .
To help [HCPs] to know how your patients feel about the care that they get and the information that you’re giving them is really, really helpful.”
21
Slide27The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
27
LIMITATIONS
Lack of detailed description of healthcare setting
Poor reporting of participant characteristics (e.g., race, ethnicity)
Lack of representation
Slide28The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
28
IMPLICATIONS
Recommendations to enhance care
Detection experience
: relationships with referring providers educate and smooth transition (send fetal care center info packet)
Waiting period
: Fetal care nurse coordinator call
Fetal Care Center
: communication training and support
Slide29Slide30The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
30
IMPLICATIONS
Recommendations to enhance
Detection experience
: relationships with referring providers educate and smooth transition (send Fetal Care Center info packet)
Waiting period
: Fetal care nurse coordinator call
Fetal Care Center
: communication training and support
Future research
Mixed methods
Detailed descriptions of care model
Report comprehensive participant characteristics – diverse sample
Patient satisfaction and quality indicators
Slide31The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
31
CONCLUSIONS
Foundation for improving care and better meeting needs
A positive experience of care is possible (even if outcomes are not positive) and can assist parents to
Cope with grief
Manage expectations
Engage in care
Detailed ways in which health care delivery can facilitate or obstruct positive care experience
Slide32The Parental Journey of Fetal Care: a Systematic Review and Metasynthesis
Abigail Wilpers, PhD, WHNP-BC; Mert Ozan Bahtiyar, MD; David Stitelman, MD; Janene Batten, MLS; Roberto X. Calix, MD; Victoria Chase, MD, BS; Nicholas Yung, MD; Nathan Maassel, MD; Gina Novick, PhD, CNM, FACNM
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THANK YOU!
MFH Postdoctoral mentors
Uma Reddy, MD, MPH
Katie Donohue, DNP, MSHA, RN, CNML
Gina Novick, PhD, CNM, FACNM
YNHH Fetal Care Center Directors
Mert
Ozan
Bahtiyar
, MD
David
Stitelman
, MD
Contributions from
Krista
Mehlhaff
, MD