Using Lived Experiences of Adults to Understand Chronic Pain: Sickle Cell Disease, an Exemplar
Abstract
Healthcare provision pertaining to painful, chronic conditions can best be optimized by developing positive healthcare
provider [HCP]-patient relationships that minimize fragmented care. Nurses, with their holistic, humanistic approach
provide a multidimensional focus that fosters individualized and effective outcomes for chronic events. The chronic pain
phenotype is subjective, difficult to assess, define and effectively manage. Individuals with one such chronic syndrome,
sickle cell disease (SCD), are living longer with pain that is poorly defined and inadequately managed. In addition to
using quantitative assessment, clinicians ond researchers must use substantive qualitative inquiry to understand the pain
from the individuals perspective, define, and appropriately manage the pain. Combined quantitative and qualitative
inquiry can help clinicians and researchers gain insights into pain experiences. This manuscript summarizes the
importance of including a narrative (qualitative) inquiry, to offer a holistic, comprehensive and humanistic opprooch to
understanding chronic pain from the lndividuals perspective and subsequently positively impacting care delivery. All
nurses in the academy-educators, clinicians and researchers need to include a qualitative approach to care delivery,
investigation and evaluation of the phenomenon pain, and intentionally demonstrate care. The experiences of
individuals with chronic sickle cell disease (SCD) pain are used as an exemplar.