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Parent Perspectives of Receiving Early Information About Palliative and End-of-Life Care Options From Their Child’s Pediatric Providers

Hendricks-Ferguson, Verna L., PhD, RN, CHPPN, FPCN, FAAN; Haase, Joan E., PhD, RN, FAAN

doi: 10.1097/NCC.0000000000000589
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Background Parents of children diagnosed with cancer may experience decision regret about cancer treatment decisions and dissatisfaction with the perceived clarity in information received from their child’s providers.

Objective The aim of this study was to describe parental perspectives about receiving an early palliative care and end-of-life (PC/EOL) communication intervention titled “Communication Plan: Early through End of Life Intervention” (COMPLETE) from an interprofessional team of physician and registered nurse providers.

Methods Ten parents participated in semistructured interviews after receiving the COMPLETE intervention. The COMPLETE intervention included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations. Sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child’s providers.

Results Results included 2 theme categories: (1) COMPLETE nurtures realistic hope and meaningful dialogue by parents connecting with healthcare providers as a dyad, and (2) benefits of COMPLETE helped parents to make informed decisions. In addition, there were offered suggestions to improve COMPLETE.

Conclusion The COMPLETE intervention provided a unique mechanism to foster early discussions about PC/EOL options between parents and an interprofessional team during the first 6 months of the child’s cancer treatment. Future study is needed using a randomized clinical control-group design to evaluate COMPLETE with a large sample of parents.

Implications for Practice Findings provide promising evidence of parents’ preference and receptivity to receive early information about PC/EOL care options for a child with a brain tumor with a poor prognosis. The COMPLETE intervention provided a mechanism to help encourage parental consideration of realistic hoped-for goals for their child’s condition and care.

Author Affiliations: Saint Louis University School of Nursing (Dr Hendricks-Ferguson), Missouri; and Indiana University School of Nursing (Dr Haase), Indianapolis.

The authors disclose receipt of financial support for the research, authorship, and/or publication of this article. This research was funded by an exploratory/development grant, awarded under the American Recovery Act of 2009 at the National Institutes of Health and National Institute of Nursing Research (R21NRO11071-O1A1) to Dr Hendricks-Ferguson (2009–2012). Dr Hendricks-Ferguson also wishes to acknowledge that this grant was prepared during the last year of her 3-year postdoctoral fellowship sponsored by the NINR T32 (NR07066) Training in Behavioral Nursing Grant at Indiana University School of Nursing, under the mentorship of Dr Haase.

The content is the sole responsibility of the authors and does not represent official views of the National Institutes of Health.

The authors have no conflicts of interest to disclose.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site (www.cancernursingonline.com).

Correspondence: Verna L. Hendricks-Ferguson, PhD, RN, CHPPN, FPCN, FAAN, Saint Louis University School of Nursing, 3525 Caroline St, St Louis, MO 63104 (verna.ferguson@slu.edu).

Accepted for publication November 7, 2017.

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