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 and researchers must use substantive qualitative inquiry to understand the pain from the individual's 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 approach to understanding chronic pain from the individual's perspective and subsequently positively impacting care delivery. All nurses in the academy-educators, clinicians and researches 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.