The adaptation and validation of a stigma measure for individuals with multiple sclerosis

Abstract

Purpose: Stigma negatively impacts quality of life for individuals with multiple sclerosis. Availability of instruments to assess levels of stigma are crucial for monitoring and targeted intervention. The study aims to adapt the Reece Stigma Scale for use with this specific population and examine its reliability and validity.

Methods: The scale was administered the 137 participants included in a larger study on identity and multiple sclerosis. Validity was evaluated utilizing the Downing model, as well as assessing potentially related constructs, including adherence, depression, anxiety, quality of life, self-efficacy, and post-traumatic growth.

Results: Principal component analysis revealed a one factor solution with excellent internal consistency. Additional construct support offered evidence that higher levels of stigma are related to lower adherence and self-management efficacy, higher levels of anxiety and depressive symptoms, as well as more dissatisfaction with quality of life.

Conclusions: This study provides preliminary support for an adapted version of the Reece Stigma Scale, specific to the multiple sclerosis population. The validation data suggests strong psychometric properties. Our findings underscore the clinical importance of measuring and addressing stigma among these patients, with the potential to improve medical (i.e., adherence), psychological (i.e., depression and anxiety), and quality of life outcomes.

Implications for rehabilitation

• Understanding stigma-related experiences is crucial to enhance psychosocial factors related to multiple sclerosis.

• Stigma-related experiences also impact disease treatment outcomes for individuals with multiple sclerosis.

• The Reece Stigma Scale is a valid and reliable measure of felt stigma created for use in HIV populations. This study adapted and validated the use of the scale among individuals with multiple sclerosis.

• Clinicians and researchers working within the rehabilitation and treatment area of multiple sclerosis may benefit from using the adapted Reece Stigma Scale to measure and address stigma experiences.

Keywords:

• Multiple sclerosis
• stigma
• assessment
• quality of life
• validation

Acknowledgements

The authors would like to thank Lauren Penwell Waines, PhD, and Abby Valvano, PhD, for their contributions to the development of the larger project from which this study is based.

Disclosure statement

The authors report no declarations of interest.