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Perinatal palliative care: Parent perceptions of caring in interactions surrounding counseling for risk of delivering an extremely premature infant

Published online by Cambridge University Press:  04 November 2013

Karen Kavanaugh ,
Cecelia I. Roscigno ,
Kristen M. Swanson ,
Teresa A. Savage ,
Robert E. Kimura  and
Sarah J. Kilpatrick
Karen Kavanaugh*
Affiliation:
Wayne State University College of Nursing and Children's Hospital of Michigan, Detroit, Michigan
Cecelia I. Roscigno
Affiliation:
University of North Carolina, Chapel Hill, North Carolina
Kristen M. Swanson
Affiliation:
University of North Carolina, Chapel Hill, North Carolina
Teresa A. Savage
Affiliation:
University of Illinois at Chicago, Chicago, Illinois
Robert E. Kimura
Affiliation:
Department of Pediatrics, Rush University Medical Center, Chicago, Illinois
Sarah J. Kilpatrick
Affiliation:
Cedars-Sinai Medical Center, Los Angeles, California
*
Address correspondence and reprint requests to: Karen Kavanaugh, Elizabeth Schotanus Professor of Pediatric Nursing, Wayne State University College of Nursing and Children's Hospital of Michigan, Family, Community, and Mental Health, 5557 Cass Avenue, Detroit, Michigan 48202. E-mail: karen.kavanaugh@wayne.edu
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Abstract

Objective:

When infants are at risk of being born at a very premature gestation (22–25 weeks), parents face important life-support decisions because of the high mortality for such infants. Concurrently, providers are challenged with providing parents a supportive environment within which to make these decisions. Practice guidelines for medical care of these infants and the principles of perinatal palliative care for families can be resources for providers, but there is limited research to bridge these medical and humanistic approaches to infant and family care. The purpose of this article is to describe how parents at risk of delivering their infant prior to 26 weeks gestation interpreted the quality of their interpersonal interactions with healthcare providers.

Methods:

Directed content analysis was employed to perform secondary analysis of data from 54 parents (40 mothers and 14 fathers) from the previously coded theme “Quality of Interactions.” These categorized data described parents' encounters, expectations, and experiences of interactions that occurred prenatally with care providers. For this analysis, Swanson's theory of caring was selected to guide analysis and to delineate parents' descriptions of caring and uncaring interactions.

Results:

Parents' expectations for caring included: (a) respecting parents and believing in their capacity to make the best decisions for their family (maintaining belief); (b) understanding parents' experiences and their continued need to protect their infant (knowing); (c) physically and emotionally engaging with the parents (being with); (d) providing unbiased information describing all possibilities (enabling); and (e) helping parents navigate the system and creating a therapeutic environment for them in which to make decisions (doing for).

Significance of Results:

Understanding parents' prenatal caring expectations through Swanson's theory gives deeper insights, aligning their expectations with the palliative care movement.

Keywords

CaringExtremely premature infantsAntenatal counseling
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 145 - 155
Copyright
Copyright © Cambridge University Press 2013 

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References

REFERENCES

Adams, J.A., Bailey, D.E., Anderson, R.A., et al. (2011). Nursing roles and strategies in end-of-life decision making in acute care: A systematic review of the literature. Nursing Research and Practice, 2011. doi: 10.1155/2011/527834. Epub October 2.CrossRefGoogle ScholarPubMed
American Academy of Pediatrics, Committee on Hospital Care and Institute for Patient- and Family-Centered Care (2012). Patient- and family-centered care and the pediatrician's role. Pediatrics, 129, 394–404.CrossRefGoogle Scholar
Armentrout, D. (2009). Living with grief following removal of infant life support: Parents' perspectives. Critical Care Nursing Clinics of North America, 21, 253–265.Google Scholar
Balaguer, A., Martin-Ancel, A., Ortigoza-Escobar, D., et al. (2012). The model of palliative care in the perinatal setting: A review of the literature. BMC Pediatrics, 12, 25.CrossRefGoogle ScholarPubMed
Bastek, T.K., Richardson, D.K., Zupancic, J.A.F., et al. (2005). Prenatal consultation practices at the border of viability: A regional survey. Pediatrics, 116, 407–413.CrossRefGoogle ScholarPubMed
Batton, D.G., Committee on Fetus and Newborn (2009). Clinical report — Antenatal counseling regarding resuscitation at an extremely low gestation. Pediatrics, 124, 422–427.CrossRefGoogle Scholar
Boss, R.D. (2010). Palliative care for extremely premature infants and their families. Developmental Disabilities Research Reviews, 16, 296–301.Google Scholar
Boss, R.D., Hutton, N., Sulpar, L.J., et al. (2008). Values parents apply to decision-making regarding delivery room resuscitation for high-risk newborns. Pediatrics, 122, 583–589.Google Scholar
Boss, R.D., Hutton, N., Donohue, P.K., et al. (2009). Neonatologist training to guide family decision making for critically ill infants. Archives of Pediatrics & Adolescent Medicine, 163, 783–788.CrossRefGoogle ScholarPubMed
Boss, R., Kavanaugh, K. & Kobler, K. (2011). Perinatal and neonatal palliative care. In Interdisciplinary Textbook of Pediatric Palliative Care, 1st ed.Wolfe, J., et al. (eds.), pp. 387–401. Philadelphia: Elsevier.CrossRefGoogle Scholar
Botti, S., Orfali, K. & Iyengar, S.S. (2009). Tragic choices: Autonomy and emotional responses to medical decisions. Journal of Consumer Research, 36, 337–352.CrossRefGoogle Scholar
Branchett, K. & Stretton, J. (2012). Neonatal palliative and end of life care: What parents want from professionals. Journal of Neonatal Nursing, 18, 40–44.Google Scholar
Brinchmann, B.S., Førde, R. & Nortvedt, P. (2002). What matters to the parents? A qualitative study of parents' experiences with life-and-death decisions concerning their premature infants. Nursing Ethics, 9, 388–404.CrossRefGoogle Scholar
Brosig, C.L, Pierucci, R.L., Kupst, M.J., et al. (2007). Infant end-of-life care: The parents' perspective. Journal of Perinatology, 27, 510–516.CrossRefGoogle ScholarPubMed
Chiswick, M. (2008). Infants of borderline viability: Ethical and clinical considerations. Seminars in Fetal & Neonatal Medicine, 13, 8–15.CrossRefGoogle ScholarPubMed
Curtis, J.R., Ciechanowski, P.S., Downey, L., et al. (2012). Development and evaluation of an interprofessional communication intervention to improve family outcomes in the ICU. Contemporary Clinical Trials, 33, 1245–1254.Google Scholar
Estes, R.J. (2007). Advancing quality of life in a turbulent world. New York: Springer.Google Scholar
Faguy, K. (2012). Emotional intelligence in health care. Radiologic Technology, 83, 237–253.Google Scholar
Feudtner, C. (2007). Collaborative communication in pediatric palliative care: A foundation for problem-solving and decision making. Pediatric Clinics of North America, 54, 583–607.Google Scholar
Feudtner, C., Carroll, K.W., Hexem, K.R., et al. (2010). Parental hopeful patterns of thinking, emotions, and pediatric palliative care decision making. A prospective cohort study. Archives of Pediatrics & Adolescent Medicine, 164, 831–839.Google Scholar
Goggin, M. (2012). Parents perceptions of withdrawal of life support treatment to newborn infants. Early Human Development, 88, 79–82.CrossRefGoogle ScholarPubMed
Griswold, K.J. & Fanaroff, J.M. (2010). An evidence-based overview of prenatal consultation with a focus on infants born at the limits of viability. Pediatrics, 125, E931–E937.Google Scholar
Grobman, W.A., Kavanaugh, K., Moro, T., et al. (2010). Providing advice to parents for women at acutely high risk of periviable delivery. Obstetrics and Gynecology, 115, 904–909.CrossRefGoogle ScholarPubMed
Haward, M.E., Kirshenbaum, N.W. & Campbell, D.E. (2011). Care at the edge of viability: Medical and ethical issues. Clinics in Perinatology, 38, 471–492.Google Scholar
Hinds, P.S., Vogel, R.J. & Clarke-Steffen, L. (1997). The possibilities and pitfalls of doing a secondary analysis of a qualitative data set. Qualitative Health Research, 7, 408–424.CrossRefGoogle Scholar
Hoeldtke, N.J. & Calhoun, B.C. (2001). Perinatal hospice. American Journal of Obstetrics and Gynecology, 185, 525–529.CrossRefGoogle ScholarPubMed
Hsieh, H.F. & Shannon, S.E. (2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15, 1277–1288.CrossRefGoogle ScholarPubMed
Janvier, A., Nadeau, S., Deschênes, M., et al. (2007). Moral distress in the neonatal intensive care unit: Caregiver's experience. Journal of Perinatology, 27, 203–208.CrossRefGoogle ScholarPubMed
Janvier, A., Lorenz, J.M. & Lantos, J.D. (2012). Antenatal counseling for parents facing an extremely preterm birth: Limitations of the medical evidence. Acta Pediatrica, 101, 800–804.CrossRefGoogle ScholarPubMed
Kain, V.J. (2007). Moral distress and providing care to dying babies in neonatal nursing. International Journal of Palliative Nursing, 13, 243–248.Google Scholar
Kavanaugh, K., Moro, T. & Savage, T. (2010). How nurses assist parents regarding life support decisions for extremely premature infants. Journal of Obstetric, Gynecologic, and Neonatal Nursing, 39, 147–158.Google Scholar
Keenan, H.T., Doron, M.W. & Seyda, B.A. (2005). Comparison of mothers' and counselors' perceptions of predelivery counseling for extremely premature infants. Pediatrics, 116, 104–111.CrossRefGoogle ScholarPubMed
Lather, P. (1986). Issues of validity in openly ideological research: Between a rock and a soft place. Interchange, 17, 63–84.CrossRefGoogle Scholar
Leape, L.L., Shore, M.F., Dienstag, J.L., et al. (2012). Perspective: A culture of respect, part 1: The nature and causes of disrespectful behavior by physicians. Academic Medicine, 87(7), 845–852.Google Scholar
Leuthner, S.R. (2004). Fetal palliative care. Clinics in Perinatology, 31, 649–665.Google Scholar
Lincoln, Y.S. & Guba, E.G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage.CrossRefGoogle Scholar
Mack, J.W. & Wolfe, J. (2006). Early integration of pediatric palliative care: For some children, palliative care starts at diagnosis. Current Opinion in Pediatrics, 18, 10–14.CrossRefGoogle ScholarPubMed
Moro, T., Kavanaugh, K., Savage, T., et al. (2011). Parent decision making for life support for extremely premature infants: From the prenatal through end-of-life period. Journal of Perinatal & Neonatal Nursing, 25, 52–60.CrossRefGoogle ScholarPubMed
Morse, J.M. & Field, P.A. (1995). Qualitative research methods for health professionals, 2nd ed.Thousand Oaks, CA: Sage.Google Scholar
Munson, D. & Leuthner, S.R. (2007). Palliative care for the family carrying a fetus with a life-limiting diagnosis. Pediatric Clinics of North America, 54, 787–798.Google Scholar
O'Connor, A.M., Tugwell, P., Wells, G.A., et al. (1998). A decision aid for women considering hormone therapy after menopause: Decision support framework and evaluation. Patient Education and Counseling, 33, 267–279.CrossRefGoogle ScholarPubMed
Payot, A., Gendron, S., Lefebvre, F., et al. (2007). Deciding to resuscitate extremely premature babies: How do parents and neonatologists engage in the decision? Social Science & Medicine, 64, 1487–1500.Google Scholar
Rider, E.A. (2011). Advanced communication strategies for relationship-centered care. Pediatric Annals, 40, 447–453.Google Scholar
Roscigno, C.I., Savage, T.A., Kavanaugh, K., et al. (2012). Divergent views of hope influencing communications between parents and hospital providers. Qualitative Health Research, 22, 1232–1246.CrossRefGoogle ScholarPubMed
Sandelowski, M. (2011). When a cigar is not just a cigar: Alternative takes on data and data analysis. Research in Nursing & Health, 34, 342–352.Google Scholar
Stoll, B.J., Hansen, N.I., Bell, E.F., et al. (2010). Neonatal outcomes of extremely preterm infants from the NICHD Neonatal Research Network. Pediatrics, 126, 443–456.Google Scholar
Sumner, E., Kavanaugh, K. & Moro, T. (2006). Extending palliative care into pregnancy and the immediate newborn period: State of the practice of perinatal palliative care. Journal of Perinatal & Neonatal Nursing, 20(1), 113–116.Google Scholar
Swanson, K.M. (1991). Empirical development of a middle-range theory of caring. Nursing Research, 40, 161–166.Google Scholar
Swanson, K.M. (1993). Nursing as informed caring for the well-being of others. IMAGE: Journal of Nursing Scholarship, 25, 352–357.Google Scholar
Swanson, K.M. & Wojnar, D.M. (2004). Optimal healing environments in nursing. Journal of Alternative and Complementary Medicine, 10(Suppl. 1), S43–S48.Google Scholar
Szabo, V. & Strang, V.R. (1997). Secondary analysis of qualitative data. Advances in Nursing Science, 20, 66–74.Google Scholar
Thorne, S. (1994). Secondary analysis in qualitative research: Issues and implications. In Critical issues in qualitative research methods. Morse, J.M. (ed.), pp. 263–279. Thousand Oaks, CA: Sage.Google Scholar
Tomlinson, M.W., Kaempf, J.W., Ferguson, L.A., et al. (2010). Caring for the pregnant woman presenting at periviable gestation: Acknowledging the ambiguity and uncertainty. American Journal of Obstetrics and Gynecology, 202, 529.E1–E6.Google Scholar
Widger, K.A. & Wilkins, K. (2004). What are the key components of quality perinatal and pediatric end-of-life care? A literature review. Journal of Palliative Care, 20, 105–112.Google Scholar
Wilkinson, A.R., Ahluwalia, J., Cole, A., et al. (2009). Management of babies born extremely preterm at less than 26 weeks of gestation: A framework for clinical practice at the time of birth. Archives of Diseases in Childhood, Fetal and Neonatal Edition, 94, F2–F5.Google Scholar
Williams, C., Munson, D., Zupancic, J., et al. (2008). Supporting bereaved parents: Practical steps in providing compassionate perinatal and neonatal end-of-life care: A North American perspective. Seminars in Fetal & Neonatal Medicine, 13, 335–340.CrossRefGoogle ScholarPubMed
Wool, C. (2013). State of the science on perinatal palliative care. Journal of ObstetricGynecologic, and Neonatal Nursing, 42, 372–382.Google Scholar
Youngblut, J.M. & Brooten, D. (2012). Perinatal and pediatric issues in palliative and end-of-life care from the 2011 Summit on the Science of Compassion. Nursing Outlook, 60, 343–350.CrossRefGoogle ScholarPubMed