Assessing the Cultural Appropriateness of UPLIFT for African Americans With Epilepsy: A Community Engaged Approach

Background: In trials of Project UPLIFT, a distance-delivered, mindfulness-based cognitive therapy intervention, there was improvement in the mental health of people with epilepsy/seizure disorder. In these trials, however, African Americans have been few. Thus, as this program is disseminated, it is desirable to ensure that it is culturally appropriate for minority populations. Methods: To determine the appropriateness of Project UPLIFT for African Americans, we engaged in three main research activities: 1) the formation and involvement of an epilepsy community advisory board; 2) qualitative interviews with healthcare providers who serve this community; and 3) focus groups with African American adults living with epilepsy or seizure disorder and main support persons of African American adults living with epilepsy or seizure disorder. Results: The epilepsy community advisory board provided recommendations for the most appropriate language to use when engaging and recruiting the target population. Healthcare providers indicated that psychosocial concerns of African American persons living with epilepsy seemed to be different from those among patients of other racial groups. They indicated that Project UPLIFT might be useful for this group. Focus groups revealed experiences of living with and supporting someone with epilepsy and provided favorable feedback on the UPLIFT intervention. Conclusions: Formative feedback indicates that Project UPLIFT may be useful for African Americans with epilepsy. These data will be used to guide a forthcoming randomized, controlled trial to assess the acceptability and feasibility of the intervention with this group

Assessing the Cultural Appropriateness of UPLIFT for African Americans With Epilepsy: A Community Engaged Approach

Background: In trials of Project UPLIFT, a distance-delivered, mindfulness-based cognitive therapy intervention, there was improvement in the mental health of people with epilepsy/seizure disorder. In these trials, however, African Americans have been few. Thus, as this program is disseminated, it is desirable to ensure that it is culturally appropriate for minority populations. Methods: To determine the appropriateness of Project UPLIFT for African Americans, we engaged in three main research activities: 1) the formation and involvement of an epilepsy community advisory board; 2) qualitative interviews with healthcare providers who serve this community; and 3) focus groups with African American adults living with epilepsy or seizure disorder and main support persons of African American adults living with epilepsy or seizure disorder. Results: The epilepsy community advisory board provided recommendations for the most appropriate language to use when engaging and recruiting the target population. Healthcare providers indicated that psychosocial concerns of African American persons living with epilepsy seemed to be different from those among patients of other racial groups. They indicated that Project UPLIFT might be useful for this group. Focus groups revealed experiences of living with and supporting someone with epilepsy and provided favorable feedback on the UPLIFT intervention. Conclusions: Formative feedback indicates that Project UPLIFT may be useful for African Americans with epilepsy. These data will be used to guide a forthcoming randomized, controlled trial to assess the acceptability and feasibility of the intervention with this group

\u27One-stop shop\u27: Lung cancer patients\u27 and caregivers\u27 perceptions of multidisciplinary care in a community healthcare setting

Background: Multidisciplinary care is rarely practiced in community healthcare settings where the majority of patients receive lung cancer care in the US. We sought direct input from patients and their informal caregivers on their experience of lung cancer care delivery. Methods: We conducted focus groups of patient and caregiver dyads. Patients had received care for lung cancer in or out of a multidisciplinary thoracic oncology clinic coordinated by a nurse navigator. Focus groups were audiotaped, transcribed, and analyzed using Creswell\u27s 7-step process. Recurring overlapping themes were developed using constant comparative methods within the Grounded Theory framework. Results: A total of 46 participants were interviewed in focus groups of 5 patient-caregiver dyads. Overlapping themes were a perception that multidisciplinary care improved physician collaboration, patientphysician communication, and patient convenience, while reducing redundancy in testing. Improved coordination decreased confusion, stress, and anxiety. Negative experience of serial care included poor communication among physicians, insensitive communication about illness, delays in diagnosis and treatment, misdiagnosis, and mistreatment. Physician-to-physician communication and patient education were suggested areas for improvement in the multidisciplinary model. Conclusions: Multidisciplinary care was perceived as more patient-centered, effective, safe, and efficient than standard serial care. It was also believed to improve the timeliness of care and equitable access to high quality care. Additional studies to compare these perspectives to those of other key stakeholders, including clinicians, hospital administrators and representatives of third party payers, will facilitate better understanding of the role of multidisciplinary care programs in lung cancer care delivery