The Experience of Perinatal Loss and Bereavement in

Black AdolescentsKimberly Fenstermacher, PhD, CRNP

Assistant Professor of NursingYork College of Pennsylvania

2012 State of the Science Congress on Nursing Research

Statement of the Problem

•Non-Hispanic Black (African American) women experience perinatal loss at rates higher than other racial and ethnic groups

•Adolescents : •Higher rates of perinatal loss compared

to other women of child-bearing age

•Limited literature

(MacDorman & Kirmeyer, 2009)

NH Black NH White Am Indian Asian/PI Mexican Puerto Rican Cuban Central/S. AM

Total 0

2

4

6

8

10

12

14

16

2006 U.S. IMR according to race and ethnicity

(per 1000 births) (Mathews et al., 2011)

Purpose of the Study

• To build an understanding of the experience of perinatal bereavement in non-Hispanic Black adolescent females after recent perinatal loss.

•Research Questions:• What is the process of perinatal bereavement ? • What are the critical transition points during the

process?• What are the influencing factors?

Methods & Procedure

• Qualitative Study: • Grounded theory methods• Symbolic Interactionism

• Non-Hispanic Black adolescent females with recent perinatal loss recruited from 3 urban hospitals via perinatal bereavement coordinators

• 3 interviews over 12 weeks

• Data collected from May 2010 to June 2011

• Constant comparative analysis

(Corbin & Strauss, 2008)

Results

Participant Demographics N = 8

Mean age 18.9 years (range 18-21 yrs.)

Mean gestation of pregnancy 19.8 weeks

Partnered at the time of the lossAll participants were unmarried

6

Reasons for loss placenta abruption (1); stillbirth (1) miscarriage (2); preterm birth (4)

Theoretical Categories Pre-Bereavement

Context: Life before

pregnancy Reacting to the

pregnancy▪ Accepting▪ Attaching

Living through the loss event Emotional response Physical response

Enduring the loss

Seeking and receiving support

Maintaining relationship

Searching for meaning

Gaining new perspective

Theoretical Categories: Pre-Bereavement Context

Life Before Pregnancy

“Hanging out with my friends”

“Everything was pretty normal”

“I was messing up in school and playing around with my friends”

Theoretical Categories: Pre-Bereavement Context

Reacting to the Pregnancy

Manifestations: Shock; disbelief; ambivalence

“Unexpected but not unwanted”

“I figured I was pregnant. I kind of hesitated. I was in denial for a month and a half…”

Reacting to the PregnancySub-category:

Accepting

Manifestations: Deciding to keep the baby, making pregnancy known to others

“Well, after a while you get used to it and you start to plan for the baby that’s coming.”

Sub-category: Attaching

Manifestations: Bonding after U/S, hearing heartbeat, feeling baby kick

“Once I seen the baby move I changed my whole way of thinking… that’s someone growing inside of you; furthermore, it’s my child.”

Living Through the Loss Event “All that pain for nothing”

Manifestations: Sudden and disrupting; Frightened and uncertain Detailed accounts of the experience

“So when they took her out, they cut the umbilical cord and I asked my boyfriend what the sex of the baby was. He said it was a girl. Then they laid her down and you could see her chest moving up and down and her gasping for air…and the only hard part was to watch her chest move up and down fast and watch her slowly die and her chest just kept going slower and slower.”

Living Through the Loss Event

Sub-category: Emotional Response

Manifestations: Crying, jealousy, sadness, anger

“The pain felt so bad, I was crying so much I couldn’t breathe. ..I’m talking about the pain of losing the baby…the emotional pain.”

Sub-category: Physical Response

Manifestations: Pain, Unanticipated lactation

“My breasts were very engorged and very sore. I can’t express how painful it really was… I was literally in tears.”

Core Category: Enduring the Loss

Manifestations:▫Being strong for others; staying the

course through the ups and downs of the experience

“I’m still in the middle of it. I’ve accepted it and I’m trying to move forward with it, but it’s still so fresh. Yeah it can be a transforming experience. I’m still in the process. That’s the word, it’s a process.”

Seeking and Receiving Support

“After I lost the baby, I was calling people and sending them pictures of him. My friends weren’t there for me at the time I needed them. They don’t answer your phone calls or come to your house. They said they would, but they didn’t come.”

Seeking = Actively looking for support: Support group, friends

Receiving = Passively accepting support : Mothers, Grandmothers

Maintaining Relationship

Manifestations: Looking through the memory box, displaying baby’s photo, saving the baby’s ashes

“Sometimes I just open the memory box and I smell the hat and the comb and the ultrasound. I look at the birth certificate. I just look through it.”

“I went in and got a tattoo. I knew I was pregnant for 21 days. So, after that 21 was my lucky number. I got a 21 with angel wings around it.”

Searching for Meaning

Manifestations: Asking why, coming to terms that God had a reason

“Yeah there was a reason why I wasn’t meant to be a mother at this point in time. God would not give me anything I can’t handle and I truly believe that.”

Gaining New Perspective

Manifestations: Feeling stronger, Seeing themselves as different and changed as a result of the experience

“This whole experience has humbled me in so many ways…No I’m not the same.”

“My outlook on life has changed. Just cherish what you have with your friends and what you have with your family, because you never know.”

Discussion

Theoretical parallels

Perinatal bereavement is a unique interpretive experience:

“It’s hard to know that you lost, but it’s different from losing a family member, cause you lost something that you created. So it hurts a little more to me than losing anyone else.”

(Stroebe et al., 2006; Kavanaugh & Hershberger, 2005)

Implications

• Unique cultural & developmental factors influence experience:• Social media• Lack of support from friends• Mother/Maternal grandmother offer main support

• Re-education of nurses to understand the perinatal bereavement experience of Black adolescents

• Research participation important and valued

“I feel like I got to speak my mind openly without judging. And that matters to us. .. that somebody is listening and somebody understands and somebody cares.”

Implications

Suggested interventions at critical transitions

• Loss event:▫Anticipatory guidance for mother & her partner▫Pain control

• Discharge:▫Memory box & photographs▫Assess support systems & prior losses

• Follow-up:▫Connect to women of similar experience/cultural

background

Strengths, Limitations, & Challenges

• Prospective design

• Trustworthiness :▫Audit trail▫Memos▫Cleaned and verified

transcripts▫Member checking▫ Expert review panel

All participants received bereavement support through the hospital perinatal bereavement program

Time from event to referral

Cell Phones

Strengths Limitations & Challenges

Funding

NIH/NINR Pre-doctoral Fellowship National Research Service Award Grant # F31 NR010816-01A2

Sigma Theta Tau International ▪ Beta Sigma Chapter ; Penn State School

of Nursing

Special Recognition

• Dissertation Committee:▫ Judith Hupcey, EdD (Chair)▫ Mary Beth Clark, EdD▫ Kim Doheny, PhD▫ Carol Weisman, PhD

• Expert Panel:▫ Judith Hupcey, EdD▫ Lisa Kitko, PhD▫ Janet Fogg, PhD

To the Participants for eloquently sharing their stories

To the Perinatal Bereavement Coordinators for their time and dedication to this research

School of Nursing

• Blumer, H. (1969). Symbolic interactionism. Englewood Cliffs, NJ: Prentice-Hall, Inc.

• Bonanno, G. A., & Kaltman, S. (1999). Toward an integrative perspective on bereavement. Psychological Bulletin, 125, 760-776.

• Corbin, J. & Strauss, A. (2008). Basics of qualitative research (3rd ed.). Los Angeles, CA: Sage Publications.

• Kavanaugh K. & Hershberger, P. (2005). Perinatal loss in low-income African American parents. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 34, 595-605.

• MacDorman M.F. & Kirmeyer, S. (2009). Fetal and Perinatal Mortality United States, 2005. National Vital Statistics Report, 57,( 8), 1-20.

• Mathews, T. J., Minino, A. M., Osterman, M. J.K., Strobino, D. M., & Guyer, B. (2011). Annual summary of vital statistics 2008. Pediatrics, 127, 146-157.

• Stroebe, M. S., Folkman, S., Hansson, R. O., & Schut, H. (2006). The prediction of bereavement outcome: Development of an integrative risk factor framework. Social Science and Medicine, 63, 2440-2451. doi:10.1016/j.socscimed.2006.06.012

Selected References

Mementos

Memory Boxes

Baptism Record

Hat & Blanket