Dissertations (Open Access)

Date of Award

Spring 5-5-2023

Degree Name

Doctor of Philosophy in Nursing (PhD)


Geraldine Wood, Ph.D

Second Advisor

Cathy L. Rozmus, PhD

Third Advisor

Vahid Afshar-Kharghan, M.D.


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.


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

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Nursing Commons