Stigma in Sickle Cell Disease Scale Development: A Pilot Study in Adults and Family/Caregivers in the U.S. and Nigeria

Thursday, 25 July 2013: 1:15 PM

Linda D. Wagner, EdD, MSN, RN
Department of Nursing, Central Connecticut State University, New Britain, CT
Robin Leger, RN, BSN, MS, PhD, CCRP
Department of Nursing, Salem State University, Salem,, MA
Victoria Odesina, DNP, APRN, CCRP, PHCNS-BC
University of Connecticut Health Center, Farmington, CT

Learning Objective 1: The learner will be able to describe the background and significant history of stigma faced by people living with sickle cell disease and their families.

Learning Objective 2: The learner will be able to identify methods of developing and piloting Stigma Scales for adults and family/caregivers, including elements of cultural sensitivity.

Purpose: Individuals with chronic genetic conditions experience  personal and family stigma throughout their lives. Sitgma associated with genetically inherited conditions is noted to negatively impact health-related quality of life and community participation. Stigma in sickle cell disease (SCD) was appraised via pilot study for instrument development, testing for face validity and preliminary psychometrics.

Methods: Community Based Participatory Research methods were used to select 42 participants for survey and feedback.  The authors adapted the likert type stigma scale from the epilepsy literature, developing two surveys, one for the individual and one for caregiver/family member.

Results: Participants suggested minor editing. A Chronbach’s alpha reliability coefficient to evaluate internal consistency of the 40 item Stigma in SCD Scalewas determined: alpha = 0.858.  A possible total score is 120. The mean = 40.6, SD = 20.9 range = 4-86.  Nigerians report higher stigma (r = .60, p < .01).  Correlations on the main variables and item analyses were conducted. Adults from both countries “fear that their significant others will reject them” (r = .44, p < .01) and those from the US note that “service providers do not believe that people with SCD have disabilities” (r = .57, p < .01). A factor analysis with scree plot indicated that the scale was multidimensional with 4 interpretable factors: 1) societal impact regarding the disease and isolation; 2) personal feelings of shame, rejection, and/or guilt; 3) treatment when in pain and concerns for the future; and 4) sense of burden and needing assistance. 

Conclusion: The pilot demonstrated the tool was useful for the target populations. This pilot study begins to describe and highlight the challenges that adults living with SCD and their caregivers face in their communities, from health care providers and system of care, employment and/or in dealing with psychosocial issues of chronic illness.