P3B009: Exploration of How Dignity Is Defined and Measured in the Pediatric Population: A Systematic Review

Background: Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy in the context of limited autonomy and evolving developmental stages. While substantial literature focuses on dignity in adult populations, the meaning, purpose, and actualization of dignity in children across age, setting, and health status remains under-explored. To address this gap, we aimed to review existing scholarship to characterize and explore how dignity is defined, conceptualized, measured, and assessed in the pediatric literature.

Methods: Following Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines, we conducted a systematic review of the literature, searching MEDLINE (via PubMed), Embase, the Cumulative Index of Nursing and Allied Health (CINAHL via EBSCO), PsycINFO (via ProQuest), Global Health (via CABI), Social Science Premium Collection (via ProQuest), and Dissertation and Theses (via ProQuest) from inception until August 2022. Eligible articles were published in English, directly involved or focused on children aged 0-18 years, and prioritized dignity as a central theme with a focus on defining, describing, conceptualizing, measuring, or evaluating dignity in some way.

Results: A total of 3306 deduplicated records were identified through database searches, of which 43 met inclusion criteria (Figure 1). From these, 19 (44.2%) were original research, 7 (16.3%) commentaries/editorials, and 7 (16.3%) reviews. Twenty-eight (65.1%) articles were from high-income countries; the three most frequently represented countries were the United Kingdom (11/43, 25.6%), Iran (7/43, 16.3%), and United States (7/43, 16.3%). Thirty-eight (88.4%) articles discussed healthcare, 6 (14.0%) education, and 4 (9.3%) legal. While several papers described mixed populations, pediatrics was the exclusive focus in nearly 90% (38/43) of studies. A sizable minority of papers described discussions around end of life (15/43, 34.9%) or palliative care and hospice (15/43, 34.9%). Most articles (36/43, 83.7%) included a discrete definition or specific conceptualization of dignity; greater than one-third (18/43, 41.8%) included a quantitative or qualitative measurement of dignity, 7 of which were related to dignity therapy. Seventeen (39.5%) articles evoked the concept of dignity related to an ethical argument, 16 (94.1%) of which involved the principle of autonomy. In addition to autonomy, characterization of dignity for children commonly involved themes of communication, privacy, and respect.

Conclusion: Relatively limited scholarship has conceptualized, defined, measured, or assessed dignity in the setting of pediatric populations. Opportunities exist to broaden research beyond qualitative interviews and evaluation of dignity therapy interventions, with the ultimate goal of identifying strategies to enhance and sustain dignity for children during seasons of wellness and illness, alike. Specifically, further work is needed to develop, implement, and test metrics and interventions to measure and bolster dignity for pediatric populations, respectively. The design of dignity-centered care should draw from existing educational, legal, and ethics literature to shape practice and research within pediatric healthcare.