Voices of Adults Living with Sickle Cell Disease Pain
Barnes, Donelle M.
Opollo, Jakki G.
McCarthy, Ann Marie
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The purpose of this qualitative study was to describe the lived experiences of adults with sickle cell disease-related pain. Using a qualitative, phenomenological approach, a purposive sample of 13 African-American adults living with Sickle Cell Disease (SCD) was recruited from a national SCD support group. Participants were asked to describe living with SCD-related pain and their experiences with pain management. Four themes emerged from the data: (1) description of the pain experience, (2) pain scales do not work, (3) managing pain, and (4) managing relationships. Persons living with SCD need comprehensive pain assessment from Health-Care Providers [HCPs], who recognize the impact of pain on their patients’ lives. The findings support further research aimed at the assessment and management of SCD-related pain. HCPs are strategically positioned to improve health outcomes for those with SCD pain by listening to patients’ unique stories and accurately assessing and effectively intervening to promote pain relief for patients living with SCD-related pain.