Thematic Analysis of Interprofessional Provider Perceptions of Pediatric Death

Stephanie Kukora; Patricia Keefer; Kenneth Pituch; Janice Firn

doi:10.1016/j.pedn.2019.05.002

Thematic Analysis of Interprofessional Provider Perceptions of Pediatric Death

J Pediatr Nurs. 2019 Jul-Aug:47:92-99. doi: 10.1016/j.pedn.2019.05.002. Epub 2019 May 10.

Authors

Stephanie Kukora¹, Patricia Keefer², Kenneth Pituch³, Janice Firn⁴

Affiliations

¹ University of Michigan Division of Neonatal-Perinatal Medicine, Department of Pediatrics, Ann Arbor, United States of America; Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, United States of America. Electronic address: skukora@med.umich.edu.
² Division of Geriatric and Palliative Medicine, Department of Internal Medicine, University of Michigan, Ann Arbor, MI, United States of America; Stepping Stones Pediatric Palliative Care Program, University of Michigan Department of Pediatrics, Ann Arbor, MI, United States of America.
³ Stepping Stones Pediatric Palliative Care Program, University of Michigan Department of Pediatrics, Ann Arbor, MI, United States of America.
⁴ Center for Bioethics and Social Sciences in Medicine, University of Michigan, Ann Arbor, MI, United States of America; Department of Learning Health Sciences, Division of Professional Education, University of Michigan Medical School, Ann Arbor, MI, United States of America.

PMID: 31082685
DOI: 10.1016/j.pedn.2019.05.002

Abstract

Purpose: Though provider and patient perceptions of death are characterized in the adult population literature, there is limited information related to providers' perceptions in pediatric and neonatal patients. The purpose of this study was to better understand how interprofessional care team members perceive and experience neonatal and pediatric end-of-life situations.

Design and methods: This survey questionnaire was administered to interprofessional providers following their participation in an institutional workshop, as part of an ongoing institutional effort to improve end-of-life experiences for patients/family and providers. Interprofessional care providers completed an electronic survey consisting of closed-ended and one open-ended question to elicit their perceptions of their participation in end of life care for a recent neonatal/pediatric patient in the period before the child's death.

Results: The qualitative analysis of 306 free-text responses commenting on the deaths of 138 patients, contained within 880 completed mixed-method surveys, is described. Thematic analysis of the free text discovered three primary themes from the data: favorable aspects of the death experience, unfavorable aspects of the experience, and combined favorable and unfavorable aspects. Four subthemes contributed to the themes; namely, language, parental presence, trust/rapport in provider relationships and inclusion in decision-making, communication, and culture.

Conclusions: Multiple factors contribute to how interprofessional care providers perceive end-of-life care experiences for neonatal/pediatric patients. The same death may be perceived differently by different providers.

Practice implications: Understanding favorable and unfavorable aspects of providing end-of-life care will support strategies to provide resources, education and support to facilitate coping and resiliency in care providers.

Keywords: Neonatal end-of-life; Palliative care; Parent presence; Pediatric end-of-life; Perceptions of death.

MeSH terms

Attitude of Health Personnel*
Attitude to Death*
Humans
Pediatric Nursing*
Pediatricians / psychology*
Surveys and Questionnaires
Terminal Care / psychology*