Become your own advocate: advice from women living with scleroderma.
OBJECTIVE
Systemic sclerosis (SSC) affects 300,000 people in the USA and has a significant effect on an individual's functional ability. The purpose of this study was to outline the key components of living with the illness and to identify the information that those who are newly diagnosed would need to initiate a successful course of disease self-management. The results will provide the groundwork for development and testing of a self-paced education program for patients with SSC.


METHODS
Focus groups were conducted with 11 women diagnosed with SSC.


RESULTS
Analysis of the transcripts yielded three themes, Secure Effective Medical Management, Live Your Life, and Learn Everything You Can. The thread Become Your Own Advocate wove these three themes together and illustrated that taking control of SSC is ultimately a function of self-advocacy.


CONCLUSIONS
For patients with SSC, taking control of their illness was a necessary component of maintaining the highest quality of life possible. A positive attitude, a strong support system, a commitment to moving forward with life, and access to high-quality, timely information all provided the participants with the tools to develop and implement a strategy of self-advocacy in disease management.
Mendelson
Cindy
C
College of Nursing, MSC09 5350, University of New Mexico, Albuquerque, NM 87131, USA. cfmendelson@salud.unm.edu
Poole
Janet L
JL
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D017144:Focus Groups; D006801:Humans; D008875:Middle Aged; D010344:Patient Advocacy; D010358:Patient Participation; D010817:Physician-Patient Relations; D011788:Quality of Life; D012595:Scleroderma, Systemic / Q000523:psychology / Q000628:therapy*; D012648:Self Care