Illness self-management among adults living with ANCA small vessel vasculitis

Abstract

This dissertation examines illness self-management among adults living with ANCA-associated small vessel vasculitis (ANCA-SVV). Manuscript #1 describes the development and evaluation of the Vasculitis Self-Management Scale (VSMS), a self-report measure of self-management among adults with ANCA-SVV. Manuscript #2 characterizes patients' attitudes and beliefs, including perceived barriers and facilitators, about ANCA-SVV self-management, and examines their relationship to self-management. Manuscript #3 explores spousal accommodative behavior as a supportive process that facilitates self-management. Specifically, it tests whether patients' perceptions of general and/or illness-specific spouse support mediate the relationship between spousal accommodative behavior and patients' self-management. The VSMS was administered via mail questionnaire, along with measures of socio-demographics, clinical factors, psychosocial factors, and self-management attitudes and beliefs. The sample for manuscripts #1 and #2 consisted of 205 patients, while the sample for manuscripts #3 included 159 married patients. The final VSMS assessed eight domains: medication adherence, health services adherence, infection avoidance adherence, diet adherence, exercise adherence, symptom monitoring adherence, appropriate adjusting of activities in response to fatigue or symptoms, and prompt reporting of new symptoms or side effects to a health professional. Analyses demonstrated good evidence of internal consistency and test-retest reliability, and mixed evidence of construct validity. With few exceptions, patients' perceived difficulty and number of perceived barriers were negatively associated with self-management, while greater perceived importance predicted higher levels of self-management. Some specific barriers, but not facilitators, were negatively associated with self-management. Spousal constructive accommodation was positively associated with general, but not illness-specific, support. General support was positively associated with medication adherence, health services adherence, and appropriate adjusting of activities in response to fatigue and symptoms. Spouse retaliation was negatively associated with illness-specific, but not general, support. Illness-specific support was positively associated with medication adherence, infection avoidance adherence, and appropriate adjusting of activities in response to fatigue and symptoms. Formal tests of the indirect effects of spousal accommodative behavior on self-management via spouse support approached but did not reach statistical significance. Findings suggest that the VSMS is a promising method for assessing illness self-management in adults living with ANCA-SVV. Potential avenues for future intervention efforts with this population are considered

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