Hostname: page-component-586b7cd67f-rdxmf Total loading time: 0 Render date: 2024-11-20T15:38:39.990Z Has data issue: false hasContentIssue false
  • English
  • Français

The clinical, operational, and financial worlds of neonatal palliative care: A focused ethnography

Published online by Cambridge University Press:  29 October 2013

Jackie Williams-Reade ,
Angela L. Lamson ,
Sharon M. Knight ,
Mark B. White ,
Sharon M. Ballard  and
Priti P. Desai
Jackie Williams-Reade*
Affiliation:
Loma Linda University, Loma Linda, California
Angela L. Lamson
Affiliation:
East Carolina University, Greenville, North Carolina
Sharon M. Knight
Affiliation:
East Carolina University, Greenville, North Carolina
Mark B. White
Affiliation:
East Carolina University, Greenville, North Carolina
Sharon M. Ballard
Affiliation:
East Carolina University, Greenville, North Carolina
Priti P. Desai
Affiliation:
East Carolina University, Greenville, North Carolina
*
Address correspondence and reprint requests to: Jackie Williams-Reade, Director of Medical Family Therapy, Loma Linda University, 11065 Campus Street, Loma Linda, California 92350. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective:

Due to multiple issues, integrated interdisciplinary palliative care teams in a neonatal intensive care unit (NICU) may be difficult to access, sometimes fail to be implemented, or provide inconsistent or poorly coordinated care. When implementing an effective institution-specific neonatal palliative care program, it is critical to include stakeholders from the clinical, operational, and financial worlds of healthcare. In this study, researchers sought to gain a multidisciplinary perspective into issues that may impact the implementation of a formal neonatal palliative care program at a tertiary regional academic medical center.

Method:

In this focused ethnography, the primary researcher conducted semistructured interviews that explored the perspectives of healthcare administrators, finance officers, and clinicians about neonatal palliative care. The perspectives of 39 study participants informed the identification of institutional, financial, and clinical issues that impact the implementation of neonatal palliative care services at the medical center and the planning process for a formal palliative care program on behalf of neonates and their families.

Results:

Healthcare professionals described experiences that influenced their views on neonatal palliative care. Key themes included: (a) uniqueness of neonatal palliative care, (b) communication and conflict among providers, (c) policy and protocol discrepancies, and (d) lack of administrative support.

Significance of results:

The present study highlighted several areas that are challenging in the provision of neonatal palliative care. Our findings underscored the importance of recognizing and procuring resources needed simultaneously from the clinical, operational, and financial worlds in order to implement and sustain a successful neonatal palliative care program.

Keywords

NeonatalPalliative careQualitative researchAdministration
Type
Original Articles
Information
Palliative & Supportive Care , Volume 13 , Issue 2 , April 2015 , pp. 179 - 186
Copyright
Copyright © Cambridge University Press 2013 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Ambalavanan, N., Carlo, W.A., Bobashev, G., et al. (2005). Predication of death for extremely low birth weight neonates. Pediatrics, 116, 1367–1373.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 Paediatrics, 12, 1–7.Google Scholar
Burns, J.P., Mitchell, C., Griffith, J.L., et al. (2001). End-of-life care in the pediatric intensive care unit: Attitudes and practices of pediatric critical care physicians and nurses. Critical Care Medicine, 29, 658–664.Google Scholar
Carter, B. (2004). Providing palliative care for newborns. Pediatric Annals, 33, 770–777.Google Scholar
Carter, B. & Levetown, M. (2004). Palliative care for infants, children and adolescents. Baltimore: Johns Hopkins University Press.Google Scholar
Catlin, A. & Carter, B. (2002). State of the art: Creation of a neonatal end-of-life palliative care protocol. Journal of Perinatology, 22, 184–195.Google Scholar
Claxton-Oldfield, S., Claxton-Oldfield, J. & Rishchynski, G. (2004). Understanding of the term “palliative care”: A Canadian survey. The American Journal of Hospice & Palliative Medicine, 21, 105–110.CrossRefGoogle ScholarPubMed
Cote-Arsenault, D. & Denney-Koelschm, E. (2011). “My baby is a person”: Parents' experiences with life-threatening fetal diagnosis. Journal of Palliative Medicine, 14, 1302–1308.Google Scholar
d'Apolito, K.C. (2006). State of the science: Procedural pain management in the neonate. Journal of Perinatal & Neonatal Nursing, 20, 56–61.Google Scholar
Gilmer, M.J. (2002). Pediatric palliative care: A family-centered model for critical care. Critical Care Nursing Clinics of North America, 14, 207–214.Google Scholar
Institute of Medicine, Committee on Palliative and End-of-Life Care for Children and Their Families (IOM) ( 2003). When children die: Improving palliative and end-of-life care for children and their families. Washington, DC: National Academy Press.Google Scholar
Kain, V.J. (2006). In the NICU: What barriers do neonatal nurses face? Neonatal Network, 25, 387–392.Google Scholar
Kain, V., Gardner, G. & Yates, P. (2009). Neonatal palliative care attitude scale: Development of an instrument to measure the barriers to and facilitators of palliative care in neonatal nursing. Pediatrics, 123, 207–213.Google Scholar
Knoblauch, H. (2005). Focused ethnography. Forum: Qualitative Social Research, 6(3), Article No. 44. Retrieved from http://www.qualitative-research.net/index.php/fqs/article/view/20.Google Scholar
Kobler, K. & Limbo, R. (2011). Making a case: Creating a perinatal palliative care service using a perinatal bereavement program model. Journal of Perinatal & Neonatal Nursing, 25, 32–41.Google Scholar
Liben, S., Papadatou, D. & Wolfe, J. (2008). Pediatric palliative care: Challenges and emerging ideas. Lancet, 371, 852–864.Google Scholar
Mancini, A., Kelly, P. & Bluebond-Langner, M. (2013). Training neonatal staff for the future in neonatal palliative care. Seminars in Fetal and Neonatal Medicine, 18, 111–115.Google Scholar
Manfredi, P.L., Morrison, R.S., Morris, J., et al. (2000). Palliative care consultations: How do they impact the care of hospitalized patients? Journal of Pain and Symptom Management, 20, 166–173.Google Scholar
Meghani, S.H. (2004). A concept analysis of palliative care in the United States. Journal of Advanced Nursing, 46, 152–161.Google Scholar
Miles, M.B. & Huberman, A.M. (1994). Qualitative data analysis: An expanded sourcebook, 3rd ed.Thousand Oaks, CA: Sage.Google Scholar
Moro, T., Kavanaugh, K., Okuno-Jones, S., et al. (2006). Neonatal End-of-Life Care: A Review of the Research Literature. Journal of Perinatal & Neonatal Nursing, 20, 262–273.Google Scholar
Morse, J.M. & Richards, L. (2002). Readme first for a user's guide to qualitative methods. Thousand Oaks, CA: Sage.Google Scholar
Morstad Boldt, A., Yusuf, F. & Himelstein, B.P. (2006). Perceptions of the term palliative care. Journal of Palliative Medicine, 9, 1128–1136.Google Scholar
Muraskas, J. & Parsi, K.P. (2008). The cost of saving the tiniest lives: NICUs versus prevention. Virtual Mentor, 10, 655–658.Google Scholar
NVivo 8 (2008). NVivo Qualitative Data Analysis (Version 8) [Computer software]. Melbourne: QSR International.Google Scholar
Pastrana, T., Jünger, S., Ostgathe, C., et al. (2008). A matter of definition: Key elements identified in a discourse analysis of definitions of palliative care. Journal of Palliative Medicine, 22, 222–232.Google Scholar
Peek, C.J. (2008). Planning care in the clinical, operational, and financial worlds. In Collaborative medicine case studies: Evidence in practice. Kessler, R. & Stafford, D. (eds.), pp. 25–38. New York: Springer.Google Scholar
Romesberg, T. (2004). Understanding grief: A component of neonatal palliative care. Journal of Hospice and Palliative Nursing, 6, 161–170.CrossRefGoogle Scholar
Sumner, E., Kavanaugh, K. & Moro, T. (2006). Extending palliative care into pregnancy and the immediate neonatal period: State of the practice of perinatal palliative care. Journal of Perinatal & Neonatal Nursing, 20, 113–116.Google Scholar
Tolle, S., Tilden, V., Rosenfeld, A. & Hickman, S. (2000). Family reports of barriers to optimal care of the dying. Nursing Research, 49, 310–317.Google Scholar
van Zuuren, F.J. & van Manen, E. (2006). Moral dilemmas in neonatology as experienced by health care practitioners: A qualitative approach. Medicine, Health Care, and Philosophy, 9, 339–347.Google Scholar
Widger, K. & Picot, C. (2008). Parents' perceptions of the quality of pediatric and perinatal end-of-life care. Pediatric Nursing, 34, 53–58.Google Scholar
Wright, V., Prasun, M.A. & Hilgenberg, C. (2011). Why is end-of-life care so sporadic: A quantitative look at the barriers to and facilitators of providing end-of-life care in the neonatal intensive care unit. Advances in Neonatal Care, 11, 29–36.Google Scholar