An Exploration of Depression in African American Adults with Sickle Cell Disease: Symptoms, Coping Strategies and the Potential Benefits of Religiosity

Depressive symptoms in adults with Sickle Cell Disease (SCD) often go unrecognized and untreated. SCD is one of the most common inherited hemoglobin disorders in the United States, affecting 1 in 365 African Americans. Individuals with SCD and co-morbid Depression lead to high hospitalization rates and healthcare utilization. The objective of this study is to explore depressive symptoms and preferred coping strategies among African American Adults with SCD. Furthermore, the aim is to explore the acceptability of religiosity among those who self-identify as religious. Interviews were conducted with 30 African American adults, recruited during their hematology appointment at the Center for Blood Disorders- Sickle Cell Clinic in Augusta, Georgia. Qualitative content analysis was used to systematically summarize and interpret the data. The following themes: Implications of SCD, Physical Coping Mechanisms, Psychological Coping Mechanisms, Types of Negative Emotional Responses, Beliefs about Religion and Types of Social Support, emerged from the data. Findings will inform providers of coping strategies to recommend, conjointly with recommending resources for mental health services referrals. Knowledge of other coping strategies being used or incorporating religiosity will improve the likelihood of the patient addressing their depressive symptoms through a method that is already being used to cope with the physical symptoms experienced in SCD. Information will also be useful to those that serve as a bridge between the patient and the provider: caregivers, family members, community-based organizations, religious leaders, and those within social circles of African Americans with SCD

Leveraging Technology to Address Patient-Centered Outcomes in Sickle Cell Disease

Work published by Georgia Southern University Press

The Hearts and Hands Clinic’s: Community Response Project for Oral Health

Hearts and Hands Clinic is a community clinic aimed at promoting healthy living and health education by providing free primary health services for citizens of Bulloch County, who are medically uninsured and have an income at or below 200% of the federal poverty guideline. As the clinic needed to secure funding to expand its oral health services, students, faculty, and community partner completed a service-learning project as part of the doctoral course on public health funding and grants. Specifically, students developed a grant application for the DentaQuest requesting resources for hiring one hygienist; increasing the number of beneficiaries receiving dental care by 100%, and conducting 40 weekly oral health education sessions at the clinic. The primary lesson learned from this project was how to prepare a strong application and how to use applied learning for social change

Evaluating the Effectiveness of Self-management Tools for Individuals With Sickle Cell Disease

Presentation given at the Sickle Cell Disease Association of America Annual Conference

Depression in African American Adults with Sickle Cell Disease: Exploration of Symptoms, Coping Strategies and the Potential Benefits of Religiosity

Presentation given at the American Public Health Association (APHA) Annual Conference. Background: Sickle cell disease (SCD) affects 1 in 365 African Americans. Adults with SCD face many challenges of living with a chronic condition that necessitates lifelong medical management that may predispose them to the risk of depressive symptoms. Comorbid depression is associated with worse increased hospitalization rates and high healthcare utilization. In addition there is a shortage of mental health professionals, especially in rural communities to meet the needs of individuals with comorbid depression. Adults with SCD often use religiosity to cope with the physical symptoms. Religiosity may be a non-medical strategy to facilitate coping with depressive symptoms in SCD. This study describes depressive symptoms and explores acceptability of religiosity as a coping strategy among adults with SCD. Description: Thirty in-depth interviews, along with a demographic questionnaires, were conducted with adults with SCD residing in rural communities. Participants were recruited during a hematology appointment at one of the three Sickle Cell Clinics affiliated with Augusta University Medical Center. Results are currently being analyzed using MAXQDA. Lessons Learned: Results from the present study will inform providers of culturally-sensitive recommendations to benefit patients experiencing low to moderate levels of depression (Patient Health Questionnaire-8 score of less than 10). Findings will also be useful to community-based organizations and caregivers who serve as a bridge between the patient and the providers. Recommendations/Implications: The results of this study will be an addition to the literature, informing providers who work with African Americans with SCD of coping strategies to recommend, conjointly with recommending resources for mental health services referrals. Knowledge of other coping strategies for patients in which counseling and medication are not viable options could potentially increase the number of African Americans who are able to manage depressive symptoms

Sickle Cell Disease and Self-Management Tools

Presentation given at the American Public Health Association (APHA) Annual Conference. Individuals with sickle cell disease (SCD) are living longer healthier lives. Advances in technology allow development of novel methods to deliver interventions using internet-based programs, including ability to track pain. Studies have determined the usability of technology-based interventions to monitor and manage SCD symptoms. Mobile technology provides an opportunity for individuals with SCD to increase access to health and disease management. Additionally, electronic health technology represents a more patient-centered, cost effective method to improve measurement of health outcomes, engage in behavioral interventions and facilitate provider-patient communication between individuals with SCD and their care team. Continual development of these technologies presents a unique opportunity to combine the strengths of each to create a patient-friendly and easily accessible SCD management platform. A systematic literature review investigated the strengths of applications using mobile and eHealth technology to identify the best elements that can be used to develop an effective application for smartphones. Articles included studies on SCD and self-management tools using technology for individuals with SCD of all ages. Eight studies were identified and organized by technology type. Self-management tools included features such as pain recording, mood tracking, visual calendars, familial support, a diary, confidential communication with physician/care team, sleep pattern tracking, health care usage tracking, and text message reminders. Based on qualitative feedback within the articles, an effective app should incorporate: pictures, peer support, pain trackers, individualized plans, communication with providers, and information transmission to a cloud system. Future studies should incorporate older adults with SCD and should extend application use to android phones

Technology Access and Preferences for Smartphone Application Content Among Adults With Sickle Cell Disease and Their Caregivers

Presentation given at the American Public Health Association (APHA) Annual Conference. Objective: Sickle cell disease (SCD) affects over 100,000 individuals in the United States, with many from underserved communities with limited access to disease management resources. This study determined access to technology resources and preferences for self-care management and social support in adults with SCD and their caregivers residing in urban and rural communities. Methods: Community Health Workers led community listening sessions (n=4) with adults with SCD and caregivers (n=43) in two urban and two rural communities throughout Tennessee. Participants were asked questions on: (1) methods of finding information about SCD self-care; (2) satisfaction with current methods for finding SCD management information; (3) support for SCD management; 4) important features for development of a smartphone application (app) SCD; and (5) areas of benefit for using a smartphone app for SCD self-care. Content analysis identified emerging themes. Results: Five themes emerged: (1) desired information; (2) types of support for SCD self-care; (3) recommendations for disseminating information to the sickle cell community; (4) barriers and facilitators to using an app; and (5) desirable features for a SCD mobile app. Most participants prefer to receive regular emails from a credible source. Participants expressed a range of comfort levels with using a mobile app but were open to an app for SCD self-care and social support. Conclusions: We learned more about how to reduce information access barriers by offering a technology platform based on patient and caregiver preferences. Findings can be used to develop a patient-centered, user-friendly smartphone application to facilitate disease self-management among individuals with SCD and their caregiver residing in rural communities

Sickle Cell Disease and Self- Management Tools

Presentation given at the American Public Health Association (APHA) Annual Conference. Objective: Sickle cell disease (SCD) affects over 100,000 individuals in the United States, with many from underserved communities with limited access to disease management resources. This study determined access to technology resources and preferences for self-care management and social support in adults with SCD and their caregivers residing in urban and rural communities. Methods: Community Health Workers led community listening sessions (n=4) with adults with SCD and caregivers (n=43) in two urban and two rural communities throughout Tennessee. Participants were asked questions on: (1) methods of finding information about SCD self-care; (2) satisfaction with current methods for finding SCD management information; (3) support for SCD management; 4) important features for development of a smartphone application (app) SCD; and (5) areas of benefit for using a smartphone app for SCD self-care. Content analysis identified emerging themes. Results: Five themes emerged: (1) desired information; (2) types of support for SCD self-care; (3) recommendations for disseminating information to the sickle cell community; (4) barriers and facilitators to using an app; and (5) desirable features for a SCD mobile app. Most participants prefer to receive regular emails from a credible source. Participants expressed a range of comfort levels with using a mobile app but were open to an app for SCD self-care and social support. Conclusions: We learned more about how to reduce information access barriers by offering a technology platform based on patient and caregiver preferences. Findings can be used to develop a patient-centered, user-friendly smartphone application to facilitate disease self-management among individuals with SCD and their caregiver residing in rural communities

Community Health Ambassadors: a Novel Strategy for Engaging Patients With Sickle Cell Disease

Presentation given at the American Public Health Association (APHA) Annual Conference. Growing interest in clinical research translation to enhance patient outcomes has generated opportunities to include patients in decisions regarding their care. Hence, increased attention is focused on engaging patients in each phase of the research continuum. Incorporating patient-engagement into research that focuses on patients with rare diseases who also live in rural communities has the potential to expand healthcare reach where access to care and access to these populations are a challenge. We partnered with the Sickle Cell Foundation of Tennessee to implement Community Health Workers (CHWs) to systematically engage patients with sickle cell disease in the TN-Sickle Cell Disease Network, a patient network to increase patient outcomes education. CHWs received training on guidelines and procedures, sickle cell education, and research protocol training. Once trained, CHWs were assigned to urban and rural communities throughout Tennessee and tasked with recruiting patients with sickle cell disease and their caregivers to participate as patient-partners. Core training in research procedures, combined with extended participatory training, led to effective preparation of laypersons who served as conduits between researchers, a community organization, and patient partners. The CHWs successfully engaged 150 patients with sickle cell disease and 35 executive community members as partners. They also obtained pertinent feedback, including areas of burden associated with disease management, from patient-partners and effectively conveyed these findings to research partners. This method of patient-engagement can be used to develop a scalable process model for replication and implementation in other states