Self-Described Identity, Pain, and Self Efficacy: A Mixed Methods Study in Adults with Sickle Cell Disease (SCD)
Authors: Nkanta Mimi , Subedi Keshab , Wright Charmaine , Jenkins Carolyn , Lanzkron Sophie , Guarino Stephanie H. 
Published: December 2024

Background:

Sickle cell disease (SCD) is a genetic blood disorder that affects thousands of individuals in the United States and millions of people worldwide, with a significant impact on their quality of life. The primary complication associated with SCD is Vaso-occlusive crises, which can lead to severe pain and other debilitating symptoms. These crises are often unpredictable and can result in frequent hospital admissions, decreased functional ability, and increased depressive symptoms in affected individuals (Smith et al., 2021).

Research has shown that individuals with SCD who experience more frequent pain crises also tend to have poor self-efficacy, which is the belief in one's ability to manage their health effectively (Al Raqaishi et al., 2022). Low self-efficacy has been linked to poorer health outcomes and quality of life in SCD patients. One factor that can significantly impact self-efficacy in individuals with SCD is stigma. Stigma refers to the negative attitudes and beliefs held by society towards individuals with certain health conditions, such as SCD. Studies have suggested that stigma can lead to delays in seeking medical care, lower self-efficacy, and ultimately poorer quality of life in individuals with SCD (Jones et al., 2019). Addressing self-efficacy and stigma in individuals with SCD is crucial for improving their quality of life and overall health outcomes. By promoting self-efficacy and reducing stigma, healthcare providers can better support individuals with SCD in managing their condition and achieving better outcomes.

This mixed method study explores the relationship between pain, self-care behaviors, stigma, and self-efficacy in adult patients with SCD. This study also explores patients' understanding of acute vs. chronic pain in SCD.

Methods: Seventeen adult participants with SCD were recruited from the Center for Special Health Care Needs at ChristianaCare Wilmington, DE during a routine clinic visit. After informed consent was obtained, participants were interviewed by the program operations coordinator via phone, using a standardized semi-structured interview script. Themes of the interview questions included experiences with acute and chronic pain, perception of the connection between physical and mental health, if any and perceived ability to control SCD symptoms. Interviews were recorded and stored securely. Six surveys; Demographics, Sickle Cell Self Efficacy scale, Measures of Sickle Cell Stigma, Multidimensional Inventory of Black Identity (MIBI), Sickle Cell Self-care Behaviors, and Interpersonal Processes of Care (IPC) were completed via a secure REDCap link. Survey responses were analyzed, and descriptive statistics were performed. Interviews were transcribed using Microsoft Word transcription tool and reviewed for accuracy. Analysis was done using the Rapid and Rigorous qualitative Data Analysis (RADAR) technique; two coders were involved in the process to assure intercoder reliability.

Results: 16 participants completed both the surveys and the interview (8 male, 8 female) with a variety of SCD genotypes (43.8% Hgb SS; 37.5% Hgb SC; 12.5% Hgb SB0 thal; 6.3% other) After analysis with RADAR, six themes and twenty-eight codes were developed. Representative quotes from informant interviews were identified for each theme and code. Themes included 1) Experiences with acute and/or chronic pain; 2) Stigma/discrimination; 3) Mental/emotional; 4) Treatments; 5) Racial and SCD Identity; and 6) Healthcare Clinicians. Survey responses were tabulated, and statistics will be performed to determine relationships between relevant metrics including self-efficacy, Black identity, and self-care behaviors.

Conclusions: Review of the themes and codes identified in the interviews revealed that most participants experience both acute and chronic pain. Participants endorsed a direct connection between their physical and mental well-being. Most participants do not universally report encountering experiences of racism, stigma, or discrimination. Most participants identified as Black or African American with a unifying view that having an identity is important but not allowing SCD to define them.