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Parent and Adolescent Factors Related to Adherence and Health Outcomes in Sickle Cell Disease

Smith, Aimee West
http://orcid.org/0000-0003-1148-455X
http://rave.ohiolink.edu/etdc/view?acc_num=kent1469208674

Abstract Details

2016, PHD, Kent State University, College of Arts and Sciences / Department of Psychological Sciences.
Sickle Cell Disease (SCD) is a genetic, lifelong condition and the symptoms of SCD include pain crises, acute chest syndrome, increased risk of infection, decreased red blood cells, and stroke. Due to the chronic and difficult to manage nature of SCD, non-adherence is a problem and results in greater rates of hospitalization, infection, pain crises, acute chest syndrome, and an increased risk for early death. Disease management in adolescents with chronic illnesses is more complex than for young children or adults. As they are developing, adolescents become more independent, and responsibility for adherence tasks begins to fall more to the adolescent than their parent. Previous research has revealed that many factors contribute to adherence in SCD, and the best model for studying adherence in this population can be informed by models of adherence in diabetes and the Health Belief Model. Research supports the importance of including adolescent psychosocial functioning, parental stress, and parental perceived barriers when examining contributions to adherence in adolescence. The goal of the proposed study is to evaluate the contributions of adolescent psychosocial functioning, parental stress, and parental perceived barriers to adherence in adolescents with SCD. Overall, findings did not support hypotheses, but important relationships were revealed for this understudied population. The main findings from this study relate to adherence in youth with SCD and fall into three main areas: adolescent anxiety, responsibility for adherence, and healthcare barriers. Adolescents high in anxiety self-reported higher mean levels of adherence than non-anxious adolescents, indicating anxiety may be a protective factor for adherence. In this sample, parents took the majority of responsibility for a range of adherence tasks; however, there were some important tasks for which no one took clear responsibility. Responsibility also varied by mother level of education and insurance type. Barriers to healthcare in this sample were low overall and indicated two areas for improvement (pragmatic resources and reminders). The current study extends the literature by examining the impact of the adolescent’s psychosocial functioning on adherence, which has not been examined in adolescents with SCD. Additionally, this study is unique in examining both parent and adolescent factors related to adherence. Results from this study provide practical contributions to the literature by identifying specific targets for improving adherence, including discussing responsibility for adherence and removing specific barriers. Despite limitations to the current study, the findings suggest clinical implications and future directions for research. Clinical implications include identifying risk factors (lower SES families), promoting protective factors (some levels of anxiety), and working in multidisciplinary teams. Future research should examine other aspects contributing to adherence, the health outcomes related to adherence, and interventions to improve adherence in adolescents with SCD utilizing multisite research to increase sample sizes.
Beth Wildman, Ph.D. (Advisor)
Josefina Grau, Ph.D. (Committee Member)
John Updegraff, Ph.D. (Committee Member)
Prasad Bodas, M.D. (Committee Member)
Mark A. James, Ph.D. (Committee Member)
80 p.
Clinical Psychology
sickle cell disease; pediatric; adolescent; adherence; responsibility for adherence; parenting stress; perceived healthcare barriers; psychosocial functioning, adolescent anxiety

Recommended Citations

Citations

  • Smith, A. W. (2016). Parent and Adolescent Factors Related to Adherence and Health Outcomes in Sickle Cell Disease [Doctoral dissertation, Kent State University]. OhioLINK Electronic Theses and Dissertations Center. http://rave.ohiolink.edu/etdc/view?acc_num=kent1469208674

    APA Style (7th edition)

  • Smith, Aimee. Parent and Adolescent Factors Related to Adherence and Health Outcomes in Sickle Cell Disease. 2016. Kent State University, Doctoral dissertation. OhioLINK Electronic Theses and Dissertations Center, http://rave.ohiolink.edu/etdc/view?acc_num=kent1469208674.

    MLA Style (8th edition)

  • Smith, Aimee. "Parent and Adolescent Factors Related to Adherence and Health Outcomes in Sickle Cell Disease." Doctoral dissertation, Kent State University, 2016. http://rave.ohiolink.edu/etdc/view?acc_num=kent1469208674

    Chicago Manual of Style (17th edition)

kent1469208674
844
© 2016, all rights reserved.
This open access ETD is published by Kent State University and OhioLINK.