source: The Journal of Pain

year: 2017

authors: E. Wakefield, C. Jenerette, J. Santanelli, W. Zempsky

Stigma research is limited among youth with sickle cell disease (SCD). There is support for health-related stigma among adults with SCD. Part of the challenge of stigma research in youth with SCD is the limited availability of assessment tools to evaluate this construct. The purpose of the current study is to evaluate face validity among youth with SCD of the Sickle Cell Disease Health Related Stigma Scale (SCD-HRSS), which has been validated among young adults with SCD. Feedback from adolescents and young adults with SCD will inform modifications to the SCD-HRSS for youth. The SCD-HRSS is a 30-item questionnaire evaluating perception of stigma among the three existing domains: general public, physicians and family members. An additional 10 items were included to develop a nurse domain. 12 youth with SCD (M = 18.77, SD = 2.27) were recruited from both inpatient and outpatient settings. The participants were asked to rate each of the 40 SCD-HRSS items on a 5-point Likert scale regarding level of importance to their illness experience. Our findings suggest that 90.05% of items demonstrate consistent face validity, with four items identified as having inconsistent importance across two subscales: family (N =3) and nurses (N = 1). Of note, there were no problematic items identified within the general public and physician subscales. Overall, SCD-HRSS demonstrates face validity for a majority of items. The ability to understand the role of stigma for youth with SCD is dependent on the ability to reliably and accurately measure stigma. Face validity is the first step in the validation process. Future research implications include the further establishment of psychometric properties for the SCD-HRSS.

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