Preparing Heart and Mind Following Prenatal Diagnosis of Complex Congenital Heart Defect

Abstract

Drawing on attachment and caregiving theory and the concept of motivation, the purpose of this descriptive study was to examine parents’ retrospective accounts of their prenatal experiences after receiving the diagnosis of a fetal heart defect. These parents constituted a subgroup of participants in a larger longitudinal study of parenting an infant with a complex congenital heart defect. Data were derived from 14 semistructured interviews with 13 mothers and 3 fathers in the home or hospital setting. A directed content analysis yielded a central category of preparing heart and mind for infant caregiving. Preparing heart and mind is a preliminary caregiving goal within the caregiving system that generates intentions and expectations indicative of specific caregiving motivations to relate to the baby, handle circumstances practically, and manage infant medical care. A theoretical model illustrates the prenatal process these parents engaged in to provide care to their infants with life-threatening medical conditions.

Keywords

families,caregiving hope infants,high-risk motivation parenting pregnancy

Get full access to this article

View all access options for this article.

References

Amendolia

(2010). Hope and parents of the critically ill newborn: A concept analysis. Advances in Neonatal Care, 10(3), 140-144. doi:10.1097/ANC.0b013e3181dee83b

Baumeister

R. F.

Vohs

K. D.

DeWall

C. N.

Zhang

(2007). How emotion shapes behavior: Feedback, anticipation, and reflection, rather than direct causation. Personality and Social Psychology Review, 11(2), 167-203. doi:10.1177/1088868307301033

Bowlby

(1982). Attachment and loss: Vol. 1. Attachment. New York: Basic Books.

Bowlby

(1988). A secure base: Parent-child attachment and healthy human development. New York: Basic Books.

Draper

(2003). Men’s passage to fatherhood: An analysis of the contemporary relevance of transition theory. Nursing Inquiry, 10(1), 66-77. doi:10.1046/j.1440-1800.2003.00157.x

Fedderly

(2008). Severity of medical illness associated with a cardiac defect through the first year. Unpublished instrument. Herma Heart Center, Children’s Hospital of Wisconsin and the Medical College of Wisconsin, Milwaukee, WI.

Feudtner

(2009). The breadth of hopes. New England Journal of Medicine, 361(24), 2306-2307. doi:10.1056/NEJMp0906516

George

Solomon

(1999). The development of caregiving: A comparison of attachment theory and psychoanalytic approaches to mothering. Psychoanalytic Inquiry, 19(4), 618-646. doi:10.1080/07351699909534268

George

Solomon

(2008). The caregiving system: The behavioral systems approach to parenting. In Cassidy

Shaver

(Eds.), Handbook of attachment (2nd ed., pp. 833-856). New York: Guilford Press.

10.

Ghanayem

N. S.

Hoffman

G. M.

Mussatto

K. A.

Cava

J. R.

Frommelt

P. C.

Rudd

N. A.

. . . Tweddell

J. S.

(2003). Home surveillance program prevents interstage mortality after the Norwood procedure. Journal of Thoracic and Cardiovascular Surgery, 126(5), 1367-1377. doi:10.1016/S0022

11.

Heard

Lake

(1997). The challenge of attachment for caregiving. New York: Routledge.

12.

Henshaw

E. J.

Flynn

H. A.

Himle

J. A.

O’Mahen

H. A.

Forman

Fedock

(2011). Patient preferences for clinician interactional style in treatment of perinatal depression. Qualitative Health Research, 21, 936-951. doi:10.1177/1049732311403499

13.

Hsieh

H. F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277-1288. doi:10.1177/1049732305276687

14.

Lloyd-Jones

Adams

Carnethon

De Simone

Ferguson

T. B.

Flegal

. . . Greenlund

(2009). Heart disease and stroke statistics—2009 update: A report from the American Heart Association statistics committee and stroke statistics subcommittee. Circulation, 119(3), e21. doi:10.1161/CIRCULATIONAHA.108.191259

15.

Maxwell

J. A.

(1992). Understanding and validity in qualitative research. Harvard Educational Review, 62(3), 279-300. Retrieved from http://www.metapress.com.ezproxy.library.wisc.edu/content/8323320856251826/fulltext.pdf

16.

Maxwell

J. A.

(2002). Understanding and validity in qualitative research. In Huberman

A. M.

Miles

M. B.

(Eds.), The qualitative researcher’s companion (pp. 37-64). Thousand Oaks, CA: Sage.

17.

Mercer

R. T.

(2004). Becoming a mother versus maternal role attainment. Journal of Nursing Scholarship, 36(3), 226-232. doi:10.1111/j.1547-5069.2004.04042.x

18.

Miles

M. B.

Huberman

A. M.

(1994). Qualitative data analysis: An expanded sourcebook. Thousand Oaks, CA: Sage.

19.

Patton

M. Q.

(1990). Qualitative evaluation and research methods (2nd ed.). Newbury Park, CA: Sage.

20.

Patton

M. Q.

(2002). Qualitative research and evaluation methods. Thousand Oaks, CA: Sage.

21.

Pridham

Harrison

Krolikowski

Bathum

M. E.

Ayres

Winters

(2010). Internal working models of parenting motivations of parents of infants with a congenital heart defect. Advances in Nursing Science, 33(4), E1-E16. doi:10.1097/ANS.0b013e3181fc016e

22.

Raina

O’Donnell

Schwellnus

Rosenbaum

King

Brehaut

. . . Wood

(2004). Caregiving process and caregiver burden: Conceptual models to guide research and practice. BMC Pediatrics, 4(1). Retrieved from http://www.biomedcentral.com/1471-2431/4/1

23.

Rempel

G. R.

Cender

L. M.

Lynam

M. J.

Sandor

G. G.

Farquharson

(2004). Parents’ perspectives on decision making after antenatal diagnosis of congenital heart disease. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 33(1), 64-70. doi:10.1177/0884217503261092

24.

Rosamond

Flegal

Furie

Greenlund

Haase

. . . Kissela

(2008). Heart disease and stroke statistics—2008 update: A report from the American Heart Association statistics committee and stroke statistics subcommittee. Circulation, 117(4), e25. doi:10.1161/CIRCULATIONAHA.107.187998

25.

Rubin

(1976). Maternal tasks in pregnancy. Journal of Advanced Nursing, 1(5), 367-376. doi:10.1111/j.1365-2648.1976.tb00921.x

26.

Rubin

(1984). Maternal identity and the maternal experience. New York: Springer.

27.

Tweddell

J. S.

Hoffman

G. M.

Mussatto

K. A.

Fedderly

R. T.

Berger

Jaquiss

R. D.

. . . Litwin

S. B.

(2002). Improved survival of patients undergoing palliation of hypoplastic left heart syndrome: Lessons learned from 115 consecutive patients. Circulation, 106(12 Suppl. 1), I82-I89. doi:10.1161/01.cir.0000032878.55215.bd

28.

United States Census Bureau. (2010). State and county quick facts. Retrieved from http://quickfacts.census.gov/qfd/states/55000.html

29.

United States Census Bureau, Housing and Household Economic Statistics Division, Fertility & Family Statistics Branch. (2010). America’s families and living arrangements, Table C9: Children by presence and type of parent(s), race, and Hispanic origin: 2010. Retrieved from http://www.census.gov/population/www/socdemo/hh-fam/cps2010.html