Language to Support Dignity for Children With Advanced Cancer and Their Families

Author:

Humphrey Carolyn12,Mehler Shoshana2,O’Bryan Sarra2,Silverstein Allison3,Mali Nidhi2,Baker Justin N.4,Mack Jennifer W.56,Kaye Erica C.2

Affiliation:

1. aDepartment of Psychology, University of Mississippi, Oxford, Mississippi

2. bDepartment of Oncology, St Jude Children’s Research Hospital, Memphis, Tennessee

3. cDepartment of Pediatrics, University of Colorado School of Medicine, Aurora, Colorado

4. dDepartment of Pediatrics, Stanford Medicine Children’s Health Center, Palo Alto, California

5. eDepartment of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts

6. fDepartment of Pediatrics, Boston Children’s Hospital, Boston, Massachusetts

Abstract

BACKGROUND AND OBJECTIVES Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child’s death. Using a hybrid deductive–inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of “bad news” encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model (“Lend an EAR”) to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.

Publisher

American Academy of Pediatrics (AAP)

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