Dissertations & Theses (Open Access)

Date of Award

Spring 5-5-2023

Degree Name

Doctor of Philosophy in Nursing (PhD)

Advisor(s)

Geraldine Wood, Ph.D

Second Advisor

Cathy L. Rozmus, PhD

Third Advisor

Vahid Afshar-Kharghan, M.D.

Abstract

Background: Shared decision making (SDM) is a model of care with a potential to guide disease self-care management and promote optimal health outcomes in adolescents and young adults (AYA) with sickle cell disease (SCD).

Aims: To identify the perceived involvement of AYA with SCD in the SDM process and examine its association with self-care management and health outcomes.

Methods: Data were collected from a major sickle cell center. Using a cross-sectional design, participants completed surveys and data were analyzed with descriptive statistics, analysis of variance, multiple linear regression, and correlational statistics.

Results: Participants (N=25) were on average age 22.72 (SD = 0.46) and 56% (N=14) female. Scores on the Perceived Involvement in Care Scale (PICS) were moderately positive, indicating an inclination toward agreement. Perceived Involvement in SDM showed significant positive moderate associations with self-care ability: Overall PICS (r = .515**, p = .008); Information Sharing between Patient and Provider (r = .433*, p = .031); and Patient Involvement in Medical Decision Making (r = .407*, p = .0.44). Perceived Involvement in SDM indicated non-significant negative moderate associations with Pain (r = -.0.423, p = .040) and Social Functioning (r = -.0.382, p = .065). Perceived Involvement in SDM indicated a non-significant negative weak association with Physical Functioning (r = -.211, p =.322). A Multiple linear regression was used to test if self-care ability and Pain significantly predicted SDM. The overall regression was statistically significant, adjusted (R2 = [.433], F (2, 21= [9.787], p = [<.001b]. ASA significantly predicted [PICS] (β = [.551], p = [.002] and Pain predicted PICS (β = [-.410], p = [.016].

Conclusion: The modified version of the Transformation Model of Communication and Health Outcomes is partially useful in explaining the role of SDM in self-care management and health outcomes. Study findings underscore the significance of SDM during the clinical encounters of AYA with SCD.

Keywords

Shared Decision Making, Sickle Cell Disease, Adolescents, Young Adults, Self-Care Management, Health Outcomes

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Nursing Commons

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