Understanding Factors Associated With Intention To Go To Your Doctor To Ask For Sickle Cell Trait Screening Among African Americans Within Middle Reproductive Age

Thesis (Ph.D.) - Indiana University, Public Health, 2015Background: Current guidelines recommend that African Americans (AA) know their sickle cell trait status to inform their reproductive decisions. Two studies based on the Reasoned Action Approach (RAA) and the Extended Parallel Process Model were conducted with AA between 18 and 35 to understand their intention to get screened to determine their status. The aim of the main study was to identify factors underlying intention to go to their doctor to ask for sickle cell screening in the next 12 months. The aim of the secondary study was to identify how exposure to a brochure with information about sickle cell trait screening might influence knowledge and beliefs. Methods: Data were collected during March through May 2015 from community sites and via referral to Qualtrics from 300 AA residing in three cities in Indiana. After participants answered eligibility and knowledge questions, they were randomly exposed to one of two brochures. The control brochure had two boxes of information on sickle cell trait susceptibility, severity, and screening; the intervention brochure was identical to the control brochure with the recommended response (e.g., “Go to your doctor to ask for sickle cell trait screening.”) inserted between the two boxes. Then the participants completed a 45-item questionnaire. Results: In the main study sequential regression was used to predict intention. Adding the three RAA constructs of perceived behavioral control (β = .579, p<.001), attitude (β = .354, p<.001), and perceived norm (β = .177, p<.001) significantly increased the adjusted R2 from .173 to .639 (F=34.136, df, 16, 283 p<.001) over the model with four demographic variables and three knowledge and belief variables. In the secondary study, the multivariate t-test comparing those exposed to the control brochure to those exposed to the intervention brochure with the recommended response revealed no significant multivariate effects. However, a paired sample t-test comparing knowledge and beliefs before and after the brochures revealed that exposure to the brochure improved knowledge and beliefs about sickle cell trait screening. Conclusion: RAA was demonstrated to be a useful behavioral theory to understand factors underlying this genetic screening decision. Implications for interventions and research were discussed

Adapting Medical Guidelines to Be Patient-centered Using a Patient-driven Process for Individuals With Sickle Cell Disease and Their Caregivers

Background: Evidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease. Methods: From May–December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n = 64) and community listening sessions (n = 43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful. Results: In community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers. Conclusions: Individuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers

Best-Practice Strategies for Engaging Community Stakeholders and Patients as Partners in Research

Community engagement and Community-Engaged Research are viewed as the cornerstones to improving health and reducing health disparities in underserved and underrepresented communities. This approach to research facilitates collaboration between community stakeholders and researchers and provides an opportunity for community stakeholders to participate in research decision-making and implementation. Establishing partnerships through community-engagement also provides a unique opportunity to increase trust in research among community stakeholders representing underserved populations. The ability to establish strong partnerships between community stakeholders and academic researchers produces better information and strategies about how to improve health. Yet, transition from traditional research models wherein the academic partner dictates the direction of a project to an approach where academic and community partners are viewed as equals, can be a challenge. Subsequently, there is an impetus to educate researchers who are new to conducting community-engaged research on effective strategies for engaging community stakeholders. Researchers with limited understanding of and experience with effective methods of engaging communities will benefit from an interactive learning activity where there is an opportunity to learn about successful strategies for engaging community stakeholders and an opportunity to collectively think through steps of implementing these strategies in their respective academic environments. The objectives of this learning lab are to: 1) provide researchers and community partners with strategies for engaging community stakeholders as research partners; 2) provide a forum for discussions on challenges and facilitators for successfully partnering with community stakeholders; 3) discuss strategies for implementing and sustaining partnerships for conducting community-engaged research. Examples of strategies to be discussed are: 1) making active efforts to learn about the participants and their context; 2) establishing lines of communication; 3) building community capacity; 4) establishing community advisory committees; and 5) creating an iterative process when deciding upon research goals and grounded research question(s)

Community Health Ambassadors: A Novel Strategy for Engaging Patients with Sickle Cell Disease

This presentation was given during the Sickle Cell Disease Association of America Annual National Convention

Moving Beyond Tradition: Concerns about Child Well-Being Outweigh the Notions of Trust and Race in Parental Decision-Making of Child Participation in Clinical Trials

This presentation was given during the American Public Health Association Annual Meeting

Leveraging Partnerships

This presentation was given during the Sickle Cell Disease Association of America Annual National Convention

“I Really Don’t Have No Understanding About It”: An Insider Perspective from Patients with Sickle Cell Trait

This presentation was given during the Sickle Cell Disease Association of America Annual National Convention

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Objectives/Specific Aims: Despite the high prevalence of individuals diagnosed with sickle cell disease (SCD) in Tennessee, comprehensive care and education for patients with SCD is not as widely available as healthcare services for individuals managing other chronic illnesses. We aimed to engage SCD stakeholders in patient-centered outcomes research (PCOR) as a mechanism for advancing care and translational research for this rare disease population. Methods/Study Population: Through a partnership with the Sickle Cell Foundation of Tennessee, we implemented Community Health Ambassadors to systematically engage patient partners with SCD and their caregivers, aged 18–50 from rural and urban communities throughout Tennessee, in PCOR to establish a sustainable infrastructure, focused on connecting the SCD community through a service providing community-based organization to offer (1) information on how to connect with other families; and be informed about SCD community activities, or educational offerings; (2) training in basic research principals; and (3) opportunities to contribute to PCOR, including feedback on effective and practical ways for providing input on research efforts through patient centered input, comparing urban and rural area preferences. Community ambassadors utilized health fairs, clinic days at various hospitals and community centers, and social media to spread awareness of the project, in addition to boosting the recruitment process. Results/Anticipated Results: A statewide SCD network was developed to offer social support and increase access to education, medical care, and engagement in research activities. Findings include: recruitment of 150 patients and 35 executive committee members (local physicians, community leaders, adults with SCD and parents of children with SCD). Discussion/Significance of Impact: Most rural and urban families affected by SCD have no systematic way to engage in, or lend their expertise to, PCOR. A statewide network of patient partners, community stakeholders, researchers, and medical professionals will ultimately increase the standard of care for patients, and provide valuable insight for SCD research. The opportunity to create the underpinnings for coordinated patient-centered education for patients with SCD and their caregivers holds promise for developing a scalable PCOR process model for replication and implementation in other states and emulate this model with other rare disease populations

Parental Knowledge and Perceptions on Prevention of Sudden Unexpected Infant Death and Infant Care

(1) Background: The study’s purpose was to explore the knowledge, perceptions, and confidence of mothers about infant care to reduce the risk of sudden unexpected infant death. (2) Methods: A purposeful sampling method was used to recruit 15 first-time mothers from Georgia with infants under 1 year of age. The researchers utilized the Socio-ecological model to report the results. Participants also provided recommendations on how to improve infant care and reduce the risk of SUID. (3) Results: The confidence level of infant care among most participants was low but increased over time. Mothers’ knowledge level about the prevention of SUID was high, but poor emotional health could hurt their parental abilities. Most participants recognized medical providers as the main source of reliable information. However, a lack of emotional and physical support was reported by mothers. (4) Conclusions: Results suggested that a more holistic approach to infant care is needed. The healthcare system and communities should provide more physical, social, and mental support to first-time mothers, a consolidated approach to care before and after birth, and easy access to services at all stages of the process to reduce the risk of SUID