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1.
Article in English | MEDLINE | ID: mdl-38641135

ABSTRACT

CONTEXT: Rural older adult Americans receive more intense treatment at end of life. Studies indicate that those who participate in goals of care conversations receive care more concordant with their values. Yet, rates of documented goals of care discussions are lower in rural and Black communities. Although multi-factorial, the role that rural family caregivers (FCGs) play in decision-making for ill loved ones is understudied. OBJECTIVE: This study aimed to explore rural FCGs cultural values, beliefs, and attitudes about serious illness and treatment decision-making and to understand how these factors influence their decision-making around goals of care for their family members. METHODS: This is an embedded qualitative study within a tele-palliative care consult randomized trial that the PEN-3 theoretical model guided. Semi-structured interviews were conducted with FCGs who had completed study participation. Thematic analysis was used to analyze the data. RESULTS: Twelve rural FCGs center their decisions around core values, and the decision-making experience was supported by faith. A model of how the key themes and subthemes interact around the central space of supporting the seriously ill loved to demonstrate the complexity of caregiving when race and rurality intersect is presented. CONCLUSION: This study is a foundational step in understanding how rural FCGs beliefs and values influence decision-making. We recommend incorporating those constructs into the development of culturally responsive decision-support interventions.

2.
J Acquir Immune Defic Syndr ; 94(2S): S99-S107, 2023 10 01.
Article in English | MEDLINE | ID: mdl-37707856

ABSTRACT

BACKGROUND: Using the Asset Bundle Model, we sought to understand the social support assets and needs of underrepresented minority (URM) high school, undergraduate, and graduate students. SETTING: Study participants were or had participated in health sciences pathway programs at Birmingham City Schools and/or the University of Alabama at Birmingham. METHODS: We took a concurrent mixed methods approach to conduct an environmental scan of health science pathway programs in the Birmingham, AL area. Four focus groups were conducted between November 2022 and January 2023, and a 225-item online survey was administered between November 4, 2022, and February 4, 2023. Both tools collected data from high school, undergraduate, and graduate students to examine key components of existing health care pathways programs for URMs and identify barriers and facilitators to successful implementation of such programs. RESULTS: Twenty-two students participated in the focus groups, and 168 individuals responded to the survey. Both focus group participants and interview respondents were primarily URMs (eg, 68.2% and 65.7% identified as Black or African American, respectively). Survey responses and focus group discussions showed that, overall, undergraduate and graduate students programs develop more robust identities as future health care professionals through friendships and institutional supports, expand their networks more broadly through mentorship, and feel more supported by family members in their academic endeavors than high school students. CONCLUSIONS: Health science pathway programs for URMs should facilitate and bolster social supports for students, especially those in high school, to enhance persistence through education and into the workforce.


Subject(s)
HIV Infections , Humans , Alabama , Students , Educational Status , Social Support
3.
Surg Endosc ; 37(8): 6079-6096, 2023 08.
Article in English | MEDLINE | ID: mdl-37129637

ABSTRACT

BACKGROUND: Incisional hernia prevention strategies related to fascial closure technique during laparotomy are well described yet poorly implemented in practice. The factors hindering the surgeon's adoption of evidence-based techniques for fascial closure are poorly understood and characterized. METHODS: Using an exploratory sequential mixed methods design, we first collected 139 responses to a validated quantitative survey based on a Theoretical Domain Framework for adoption of healthcare practices. Mean scores from survey responses were tabulated, and the findings were used to develop an interview guide for subsequent qualitative individual semi-structured phone interviews. Fourteen practicing surgeons were purposively sampled from social media outlets and our institution. The interviews were recorded and transcribed verbatim for coding and thematic analysis using NVivo 12 Plus. Data from the surveys and interviews were integrated using joint displays. RESULTS: Quantitative and qualitative analyses from surveys and semi-structured interviews revealed various themes related to surgeon decision-making related to fascial closure technique. Surgeons cited limitations of prior studies, applicability of findings, anecdotal experiences, and situation-specific environments that influence their decision-making. Peer influence and lack of training also affected surgeons' perspectives on integrating small bite technique into practice. CONCLUSION: Trial design limitations, peer influence, and patient-specific factors impacted surgeon decision-making in the choice of fascial closure technique. Future clinical trials in diverse patient populations may improve surgeons' confidence in implementing technique for fascial closure.


Subject(s)
Abdominal Wound Closure Techniques , Incisional Hernia , Surgeons , Humans , Fascia , Incisional Hernia/prevention & control , Wound Closure Techniques , Clinical Trials as Topic
4.
Surgery ; 174(1): 36-45, 2023 07.
Article in English | MEDLINE | ID: mdl-37088570

ABSTRACT

BACKGROUND: Although specific social determinants of health have been associated with disparities in surgical outcomes, there exists a gap in knowledge regarding the mechanisms of these associations. Gaining perspectives from multiple socioecological levels can help elucidate these mechanisms. Our study aims to identify social determinants of health that act as barriers or facilitators to surgical care among colorectal surgery stakeholders. METHODS: We recruited participants representing 5 socioecological levels: patients (individual); caregivers/surgeons (interpersonal); and leaders in hospitals (organizational), communities (community), and government (policy). Patients participated in focus groups, and the remaining participants underwent individual interviews. Semistructured interview guides were used to explore barriers and facilitators to surgical care at each socioecological level. Transcripts were analyzed by 3 coders in an inductive thematic approach with content analyses. The intercoder agreement was 93%. RESULTS: Six patient focus groups (total n = 18) and 12 key stakeholder interviews were conducted. The mean age of patients was 54.7 years, 66% were Black, and 61% were female. The most common diseases were colorectal cancer (28%), inflammatory bowel disease (28%), and diverticulitis (22%). Key social determinants of health impacting surgical care emerged at each level: individual (clear communication, mental stress), interpersonal (provider communication and trust, COVID-related visitation restrictions), organizational (multiple forms of contact, quality educational materials, scheduling systems, discrimination), community (community and family support and transportation), and policy (charity care, patient advocacy organizations, insurance coverage). CONCLUSION: Key social determinants of health-impacting care among colorectal surgery patients emerged at each socioecological level and may provide targets for interventions to reduce surgical disparities.


Subject(s)
COVID-19 , Colorectal Surgery , Humans , Female , Middle Aged , Male , Qualitative Research , Focus Groups , Health Services Accessibility
5.
J Neurosurg Pediatr ; 31(5): 433-443, 2023 05 01.
Article in English | MEDLINE | ID: mdl-36787132

ABSTRACT

OBJECTIVE: Hydrocephalus is inherently unpredictable. Most parents whose child is diagnosed with hydrocephalus do not anticipate the diagnosis, nor can anyone predict if or when a child's shunt will fail and require emergency surgery. Previous research has shown that children with hydrocephalus and their caregivers experience significant posttraumatic stress symptoms secondary to the diagnosis. This study aims to understand caregiver experiences and needs, identify gaps in resources/support, and determine opportunities to improve care. METHODS: Semistructured interviews were conducted with parent caregivers of children with hydrocephalus to learn about their experiences with the hydrocephalus diagnosis, hospitalizations, surgeries, coping and support, challenges of caring for a child with hydrocephalus, and logistics for a proposed support program. De-identified interviews were audio-recorded, transcribed, and analyzed for themes. RESULTS: Thematic saturation was reached after 17 interviews. Five major themes emerged: 1) coping with the diagnosis, 2) received support, 3) hydrocephalus management, 4) implications for intervention, and 5) psychosocial stressors for caregivers. A top priority was balanced, trustworthy information delivered with compassion and updated throughout the child's life. Caregivers described a variety of coping strategies, but a majority reported a need for support in processing complex emotions and dealing with the uncertainty of their child's hydrocephalus. Most agreed that having a caregiver support network, medical professionals available for referrals and questions, and referrals to support services and therapies would facilitate feeling supported and providing the best care for their children. CONCLUSIONS: Parent caregivers are critical to the health and well-being of children with hydrocephalus, and it is essential to understand their experiences to improve care. Providing well-defined information, psychosocial support, and resources will help to equip parent caregivers to be advocates for their children and to improve both the caregiver and the child's quality of life.


Subject(s)
Caregivers , Hydrocephalus , Child , Humans , Caregivers/psychology , Quality of Life , Parents/psychology , Qualitative Research
6.
Front Rehabil Sci ; 3: 932470, 2022.
Article in English | MEDLINE | ID: mdl-36189049

ABSTRACT

People with neurological and physical disabilities (PWD) experience a myriad of secondary and chronic health conditions, thus, reducing their participation and quality of life. A telehealth exercise program could provide a convenient opportunity for improving health in this population. To describe participants' perceived benefits of a telehealth physical activity program among PWD, we conducted semi-structured interviews with 30 study participants after completing the 24-week program SUPER-HEALTH (Scale-Up Project Evaluating Responsiveness to Home Exercise and Lifestyle TeleHealth). Interview data were recorded, transcribed verbatim, and analyzed using inductive thematic analysis. The mean age of the sample was 51 ± 13 years, the primary disability was Multiple Sclerosis, and there were nine men (30%) and 21 (70%) women. Inductive thematic analysis resulted in four themes that include the following: (1) improved health and function, (2) increased activity participation, (3) improved psychosocial health, and (4) optimized performance and benefits. These preliminary findings provided support for the use of a home exercise program and recommendations to improve it to enhance benefits among PWD.

7.
Gynecol Oncol ; 166(3): 481-486, 2022 09.
Article in English | MEDLINE | ID: mdl-35902296

ABSTRACT

OBJECTIVE: Our objective was to obtain perspectives from ovarian cancer patients on job demands, cancer demands, and workplace or cancer resources and strategies to manage the cancer-work interface using the cancer-work management conceptual framework. METHODS: We recruited ovarian cancer patients receiving systemic therapy who screened positive for financial distress using Comprehensive Score for Financial Toxicity <26. Interviews were conducted with participants about their costs of care, including employment concerns. Interviews were recorded, transcribed verbatim, and analyzed by three researchers using an inductive thematic analysis. RESULTS: Of 22 participants, the average age was 57 years old, 36% were Black, 68% had income <$40,000, 41% had public insurance, and 68% were being treated for recurrent disease. Job demands included decreased productivity, inability to return to work, and worry about losing a job or employer-based health insurance coverage. Cancer demands included physical and cognitive limitations due to cancer treatment and reliance on caregivers, especially for transportation. Workplace resources/strategies including having a supportive employer, modifying job responsibilities, and utilizing family medical leave. Cancer care resources/strategies included planning appointments ahead of time and utilizing resources, such as disability. CONCLUSIONS: Cancer care teams should consider screening patients for employment concerns; streamline care to minimize the side effects, time, and transportation demands of treatment on patients and caregivers; maximize utilization of available resources; and proactively communicate with employers to accommodate patients and caregivers who want or need to work.


Subject(s)
Disabled Persons , Ovarian Neoplasms , Carcinoma, Ovarian Epithelial/therapy , Employment/psychology , Female , Humans , Middle Aged , Ovarian Neoplasms/therapy , Qualitative Research , Workplace/psychology
8.
Am J Surg ; 223(2): 303-311, 2022 Feb.
Article in English | MEDLINE | ID: mdl-34119329

ABSTRACT

BACKGROUND: Racial/ethnic disparities in outcomes exist for patients with inflammatory bowel disease (IBD) undergoing surgery. The underlying mechanism(s) remain unclear and patient perspectives are needed. We therefore aimed to characterize the surgical experience for Black and White IBD patients using qualitative methods. METHODS: Patients with IBD who had undergone surgery were recruited to same-race qualitative interviews. Semi-structured interviews explored barriers and facilitators to a positive or negative surgical experience. Transcripts were analyzed with NVivo 12 software. RESULTS: Six focus groups were conducted that included 10 Black and 17 White IBD participants. The mean age was 44.8 years (SD 13.2), 52% were male and 65% had Crohn's disease. Four themes emerged that most defined the surgical experience: the impact of the IBD diagnosis, the quality of provided information, disease management and the surgery itself. Within these themes, barriers to a positive surgical experience included inadequate personal knowledge of IBD, ineffective written and verbal communication, lack of a support system and complications after surgery. Both groups reported that information was provided inconsistently which led to unclear expectations of surgical outcomes. CONCLUSIONS: Black and White patients with IBD have varied surgical experiences but all stressed the importance of accurate, trustworthy and understandable health information. These findings highlight the value of providing health literacy-sensitive care in surgery.


Subject(s)
Crohn Disease , Health Literacy , Inflammatory Bowel Diseases , Adult , Chronic Disease , Ethnicity , Focus Groups , Humans , Inflammatory Bowel Diseases/surgery , Male
9.
JMIR Cancer ; 7(4): e26226, 2021 10 06.
Article in English | MEDLINE | ID: mdl-34612832

ABSTRACT

BACKGROUND: With the increasing number of older cancer survivors, it is imperative to optimize the reach of interventions that promote healthy lifestyles. Web-based delivery holds promise for increasing the reach of such interventions with the rapid increase in internet use among older adults. However, few studies have explored the views of middle-aged and older cancer survivors on this approach and potential variations in these views by gender or rural and urban residence. OBJECTIVE: The aim of this study was to explore the views of middle-aged and older cancer survivors regarding the features of web-based healthy lifestyle programs to inform the development of a web-based diet and exercise intervention. METHODS: Using a qualitative descriptive approach, we conducted 10 focus groups with 57 cancer survivors recruited from hospital cancer registries in 1 southeastern US state. Data were analyzed using inductive thematic and content analyses with NVivo (version 12.5, QSR International). RESULTS: A total of 29 male and 28 female urban and rural dwelling Black and White survivors, with a mean age of 65 (SD 8.27) years, shared their views about a web-based healthy lifestyle program for cancer survivors. Five themes emerged related to program content, design, delivery, participation, technology training, and receiving feedback. Cancer survivors felt that web-based healthy lifestyle programs for cancer survivors must deliver credible, high-quality, and individually tailored information, as recommended by health care professionals or content experts. Urban survivors were more concerned about information reliability, whereas women were more likely to trust physicians' recommendations. Male and rural survivors wanted information to be tailored to the cancer type and age group. Privacy, usability, interaction frequency, and session length were important factors for engaging cancer survivors with a web-based program. Female and rural participants liked the interactive nature and visual appeal of the e-learning sessions. Learning from experts, an attractive design, flexible schedule, and opportunity to interact with other cancer survivors in Facebook closed groups emerged as factors promoting program participation. Low computer literacy, lack of experience with web program features, and concerns about Facebook group privacy were important concerns influencing cancer survivors' potential participation. Participants noted the importance of technology training, preferring individualized help to standardized computer classes. More rural cancer survivors acknowledged the need to learn how to use computers. The receipt of regular feedback about progress was noted as encouragement toward goal achievement, whereas women were particularly interested in receiving immediate feedback to stay motivated. CONCLUSIONS: Important considerations for designing web-based healthy lifestyle interventions for middle-aged and older cancer survivors include program quality, participants' privacy, ease of use, attractive design, and the prominent role of health care providers and content experts. Cancer survivors' preferences based on gender and residence should be considered to promote program participation.

10.
J Health Care Poor Underserved ; 32(2): 931-947, 2021.
Article in English | MEDLINE | ID: mdl-34120985

ABSTRACT

INTRODUCTION: Haitian women in Massachusetts have high rates of cesarean section and low rates of vaginal birth after cesarean, despite evidence suggesting that many are eligible to attempt vaginal birth after a previous cesarean. This qualitative study explored the cultural impact of previous surgical birth for Haitian women to inform the development of a patient-centered decision support program. METHODS: Key stakeholders included Haitian women with previous cesarean and their obstetric care providers. Haitian women participated in focus groups; care providers participated in focus groups and in-depth interviewing. RESULTS: Four prominent themes emerged surrounding childbirth decision-making: the importance of Haitian culture and beliefs; need for more information on birthing options; influence of family/friends; and pain as a considerable factor. CONCLUSION: We hypothesize that group counseling tailored to meet cultural values and needs of Haitian women may support all stakeholders as they work towards sharing decisions about birth after cesarean.


Subject(s)
Cesarean Section, Repeat , Cesarean Section , Decision Making , Female , Haiti , Health Personnel , Humans , Pregnancy
11.
Am J Surg ; 222(2): 272-280, 2021 08.
Article in English | MEDLINE | ID: mdl-33514451

ABSTRACT

BACKGROUND: Critical perspectives on the informed consent process for inguinal hernia surgery are lacking. METHODS: We conducted focus group interviews of patients who have undergone inguinal hernia surgery and nurses/medical assistants. Individual phone interviews were also conducted with surgeons sampled from the International Hernia Collaboration. Interviews were transcribed for coding and qualitative thematic analysis performed using NVivo 12 Plus. Themes were compiled to develop a decision aid. RESULTS: Sixteen patients, 6 support staff members, and 12 surgeons participated. Multiple themes were identified. Patients, nurses, and medical assistants identified barriers to asking questions in the current clinic setup, patient stress, and time constraints, while surgeons identified strategies to implement decision aids. All participants agreed that decision aids improve the informed consent process. CONCLUSION: Key stakeholders identified barriers to the informed consent process and provided input on necessary components of a decision aid. Opportunities exist to address these barriers and improve the consent process.


Subject(s)
Attitude of Health Personnel , Decision Support Techniques , Hernia, Inguinal/surgery , Herniorrhaphy , Informed Consent , Patient Preference , Adult , Aged , Decision Making , Female , Focus Groups , Hernia, Inguinal/psychology , Humans , Male , Middle Aged , Nursing Staff, Hospital , Qualitative Research , Students, Medical
12.
J Perinat Educ ; 30(3): 135-144, 2021 Jul 01.
Article in English | MEDLINE | ID: mdl-35311197

ABSTRACT

This study used focus groups to assess the feasibility and acceptability of adapting an Embodied Conversational Agent (ECA) to support decision-making about mode of birth after previous cesarean. Twelve women with previous cesareans, and eight prenatal providers at an academic, tertiary-care medical center, viewed a prototype ECA and were asked to share feedback on the potential role in helping women prepare for decision-making. Both groups felt that although it was somewhat "robot-like," the ECA could provide easy access to information for patients and could augment the visit with providers. Future work is needed to improve ECA visual appeal and clarify the role and timing for utilization of decision aids using ECA technology to enhance the shared decision-making process.

13.
J Surg Res ; 250: 12-22, 2020 06.
Article in English | MEDLINE | ID: mdl-32014697

ABSTRACT

INTRODUCTION: Racial/ethnic disparities in surgical outcomes exist. Enhanced recovery programs (ERPs) have reduced some racial/ethnic disparities, but it remains unclear if disparities in experiences are also reduced. The purpose of this study was to use qualitative methods to better understand the surgical experience for African-American and Caucasian patients in the setting of an ERP. METHODS: Using purposeful sampling at a minority-serving institution, we recruited African-American and Caucasian patients who had undergone colorectal surgery under an ERP to six focus groups. Participants identified barriers and facilitators to a positive, or negative, surgical experience. Audio recordings were transcribed and analyzed using an indicative thematic approach with NVivo 10 software (QSR International). RESULTS: Forty-three patients (15 African-Americans and 28 Caucasians) participated in six focus groups. Six themes were identified by patients to be important in surgery: 1) knowledge about colorectal surgery, 2) obtaining information, 3) quality of information, 4) setting expectations about surgery, 5) following preoperative and postoperative instructions, and 6) confidence in surgery outcomes. For both racial/ethnic groups, patients felt that more information could have been provided, information should be given at their level of understanding, and trust in the physician made them feel confident in a positive outcome. African-American patients described experiences of having incorrect or no expectations on surgical outcomes, being provided inconsistent information, and feeling misled. African-Americans also described following instructions from family members and valued the importance of diet and exercise in recovery. CONCLUSIONS: African-American and Caucasian surgical patients have varied surgical experiences even under an ERP. All patients, however, valued the ability to obtain, process, and understand health information during the surgical process. These elements define "health literacy" and suggest the importance of providing health literacy-sensitive care in surgery.


Subject(s)
Enhanced Recovery After Surgery , Health Knowledge, Attitudes, Practice/ethnology , Healthcare Disparities/ethnology , Postoperative Complications/rehabilitation , Adult , Black or African American/psychology , Colon/surgery , Female , Focus Groups , Health Literacy , Humans , Male , Middle Aged , Patient Education as Topic , Patient Satisfaction/ethnology , Qualitative Research , Rectum/surgery , Social Class , White People/psychology
14.
Transplantation ; 104(4): 788-794, 2020 04.
Article in English | MEDLINE | ID: mdl-31356581

ABSTRACT

BACKGROUND: The goal of this study was to increase organ donor registrations at the Department of Motorized Vehicles (DMV) via utilization of a sustainable, low-cost, African American-centric organ donation educational video. Results from previous studies provided a framework to generate a 10-minute video that featured registered organ donors, deceased donor families, and transplant recipients. METHODS: The video was presented via an interrupted time series design (repeating on 2 mo, off 2 mo) on televisions placed in 6 regional DMVs. During the 12-month study, 162 387 patrons visited the DMVs. RESULTS: Increases in organ donor registration were consistently observed in each DMV while the video was on compared with off (mean = +2.3% [range +1.98% to +3.35%]; P < 0.0001). Multivariable analysis demonstrated that females (odds ratio [OR], 1.29; 95% confidence interval [CI], 1.26-1.31), younger age (OR, 0.982/y; 95% CI, 0.982-0.983), and the video intervention (OR, 1.09; 95% CI, 1.07-1.12) were significantly associated with increased registration; while compared with Caucasian race, African American race was not (OR, 0.22; 95% CI, 0.22-0.23). There was no video-dependent effect on registration between Caucasians and African Americans (P = 0.62). Exit interviews demonstrated only 16% of patrons could identify the key message in the video (becoming a registered organ donor). CONCLUSIONS: An educational video promoting organ donation resulted in increased organ donor registration at the DMV. The intervention was equally effective in African Americans and Caucasians. Future efforts should focus upon target-specific messaging and patron consumption of the educational video.


Subject(s)
Automobile Driving , Health Education/methods , Health Knowledge, Attitudes, Practice , Television , Tissue Donors/psychology , Tissue Donors/supply & distribution , United States Government Agencies , Video Recording , Adult , Black or African American/psychology , Age Factors , Aged , Aged, 80 and over , Alabama , Attitude to Death , Female , Health Knowledge, Attitudes, Practice/ethnology , Humans , Interrupted Time Series Analysis , Male , Middle Aged , Motivation , Sex Factors , Time Factors , United States , White People/psychology , Young Adult
15.
Ann Intern Med ; 170(9_Suppl): S54-S61, 2019 05 07.
Article in English | MEDLINE | ID: mdl-31060056

ABSTRACT

Background: Despite recommendations to discuss the cost of care (CoC) with patients with cancer, little formal guidance is available on how to conduct these sensitive conversations in ways that are acceptable to both patients and providers. Objective: To explore the perspectives of patients and medical and nonmedical cancer center staff on CoC conversations. Design: In individual interviews, participants were asked to discuss the content of, timing of, and ideal person to hold CoC conversations. Interviews were transcribed verbatim. Content was analyzed to identify emerging essential elements. Setting: Division of Preventive Medicine, University of Alabama at Birmingham. Participants: 42 women aged 60 to 79 years with a history of breast cancer and 20 cancer center staff (6 physicians, 4 nurses, 5 patient navigators, 3 social workers, and 2 billing specialists). Results: Both patients and providers identified reassurance and action as essential elements of CoC conversations. Participants expressed the importance of reassurance that recommended medical care would not be affected by affordability challenges. Action was intended as discussions on ways to help patients cover treatment-related costs, such as discussion of payment plans or linkage to financial resources. Optimal timing for CoC conversations was felt to be after an initial consult visit but before treatment started. The person to hold these conversations should be compassionate, helpful, and knowledgeable of the patient's specific situation (for example, treatment plan, insurance coverage) and of the resources available to attain the patient's goals of care. Limitation: Interviews were limited to older breast cancer survivors and staff at 1 institution. Conclusion: Conversations about CoC extend beyond discussing costs and must be sensitive to the vulnerability experienced by patients. These findings can guide training of personnel involved in CoC conversations. Primary Funding Source: Robert Wood Johnson Foundation.


Subject(s)
Breast Neoplasms/economics , Cancer Care Facilities/economics , Cancer Care Facilities/organization & administration , Communication , Health Expenditures , Physician-Patient Relations , Aged , Allied Health Personnel , Cancer Survivors , Cost of Illness , Female , Humans , Interviews as Topic , Medical Staff, Hospital , Middle Aged , Qualitative Research , United States
16.
Prog Transplant ; 29(2): 164-172, 2019 06.
Article in English | MEDLINE | ID: mdl-30845889

ABSTRACT

INTRODUCTION: Studies demonstrate that family notification is much less frequent in African Americans than in Caucasians. Familial notification of one's decision to become a registered organ donor (ROD) is important to ensure adherence to the decedent's donation decision and to disseminate prodonation attitudes. The purpose of this study was to explore the experiences of familial notification among recent African American RODs and to identify intervention strategies to overcome potential barriers to the notification process. METHODS/APPROACH: The study used a qualitative focus group approach. An inductive thematic analysis identified common categories and themes in the recorded and transcribed discussions. FINDINGS: The focus groups consisted of 50 African American participants who had recently visited Alabama Department of Motorized Vehicles and made the voluntary decision (yes or no) about becoming an organ donor. Three major themes describing the African American experiences with notifying their family members about their decision to become a ROD emerged. These themes were as follows: motivation for the notification, notification conversation, and promoting familial notification. Specific discussions centered upon the importance of and barriers to familial notification, information, and strategies needed for successful notification. Strategies identified were use of media and social networks to provide enhanced knowledge on the notification process and the importance of health-care, community-provided knowledge about the donation process. DISCUSSION: Findings from this study provide a framework for future interventions designed to assist African American RODs in notifying family members of their status.


Subject(s)
Decision Making , Family , Health Knowledge, Attitudes, Practice , Motor Vehicles/legislation & jurisprudence , Tissue Donors/psychology , Black or African American , Aged , Aged, 80 and over , Alabama , Female , Focus Groups , Humans , Male , Middle Aged , Surveys and Questionnaires , Tissue and Organ Procurement , Young Adult
17.
J Racial Ethn Health Disparities ; 6(4): 707-718, 2019 08.
Article in English | MEDLINE | ID: mdl-30747331

ABSTRACT

Using a concurrent mixed methods design, we investigated how knowledge, attitudes, values, and beliefs among women with osteoporosis can explain racial disparities in bone health. We recruited African American and White women ≥ 65 years of age with osteoporosis to participate in focus groups. We quantitatively compared scores of the "Osteoporosis & You" knowledge scale and each domain (internal, powerful others, and chance) of the Multidimensional Health Locus of Control scale by race using t tests. We qualitatively explored potential racial differences in attitudes, values, and beliefs in the domains: (1) osteoporosis and bone health concerns, (2) knowledge about osteoporosis, (3) utilization of medical services for osteoporosis, (4) facilitators of osteoporosis prevention activities, and (5) barriers to osteoporosis prevention activities. A total of 48 women (White: 36; African American: 12) enrolled in the study. White women had a mean (SD) of 7.8 (0.92), whereas African American women score a 6.6 (2.6) (p = 0.044) out of 10 on the Osteoporosis & You Scale. The powerful others domain was significantly higher among African American for both general and bone health [General Health - African American: 26.7 (5.9) vs. White: 22.3 (3.8); p = 0.01]. Qualitative thematic analysis revealed differences by race in knowledge, types of physical activity, coping with comorbidities, physician trust, religion, and patient activation. Using both quantitative and qualitative methods, our study identified racial differences in knowledge, attitudes, and beliefs in women with osteoporosis that could result in racial disparities in bone health, indicating the need to improve education and awareness about osteoporosis in African American women.


Subject(s)
Black or African American/psychology , Health Knowledge, Attitudes, Practice/ethnology , Health Services/statistics & numerical data , Health Status Disparities , Osteoporosis/ethnology , Adaptation, Psychological , Aged , Aged, 80 and over , Comorbidity , Exercise , Female , Focus Groups , Humans , Osteoporosis/prevention & control , Patient Participation , Socioeconomic Factors , Trust , White People
18.
J Nutr Educ Behav ; 51(5): 598-607, 2019 05.
Article in English | MEDLINE | ID: mdl-30579893

ABSTRACT

OBJECTIVE: Late-night eating during pregnancy is associated with greater risk for gestational diabetes. The purposes of this study were to describe reasons why women engage in late-night eating and to understand perceptions about changing this behavior. DESIGN: Focus groups using a semi-structured interview script. SETTING: Urban university-affiliated obstetric clinic. PARTICIPANTS: Low-income black women (n = 18) with overweight/obesity at entry to prenatal care. PHENOMENON OF INTEREST: Late-night eating. ANALYSIS: Exhaustive approach coding responses to specific questions. RESULTS: Individual and interpersonal contributors to late-night eating included hunger, altered sleep patterns, fetal movement, and the influence of others. Food choices were largely driven by taste and convenience. Some women reported that they could alter nightly eating patterns, whereas others would consider changing only if late-night eating were associated with a severe illness or disability for the child. CONCLUSIONS AND IMPLICATIONS: There was considerable heterogeneity among the participants of this study regarding reasons for late-night eating during pregnancy and attitudes toward changing this behavior. Although the themes identified from this study cannot be generalized, they may be useful to inform future studies. Future research might develop strategies to overcome individual and social factors that contribute to late-night eating during pregnancy.


Subject(s)
Black or African American/psychology , Diabetes, Gestational/prevention & control , Feeding Behavior/psychology , Food Preferences/psychology , Hunger , Adult , Black or African American/statistics & numerical data , Female , Focus Groups , Humans , Interviews as Topic , Poverty , Pregnancy , Qualitative Research , Urban Population , Young Adult
19.
Clin Transplant ; 32(10): e13402, 2018 10.
Article in English | MEDLINE | ID: mdl-30179271

ABSTRACT

African American (AA) organ donation registration rates fall short of national objectives. The goal of the present study was to utilize data acquired from a quantitative telephone survey to provide information for a future Department of Motorized Vehicles (DMV) intervention to increase AA organ donor registration at the DMV. AAs (n = 20 177) that had visited an Alabama DMV office within a 3-month period were recruited via direct mailing to participate in a quantitative phone survey. Data from 155 respondents that participated in the survey were analyzed. Of those respondents deciding to become a registered organ donor (ROD; n = 122), one-third made that decision at the time of visiting the DMV. Of those who chose not to become a ROD (n = 33), one-third made the decision during the DMV visit. Almost 85% of all participants wanted to learn more about organ donation while waiting at the DMV, preferably via TV messaging (digital signage), with the messaging delivered from organ donors, transplant recipients, and healthcare experts. Altruism, accurate organ donation information, and encouragement from family and friends were the most important educational topics to support AAs becoming a ROD. These data provide a platform to inform future interventions designed to increase AAs becoming a ROD at the DMV.


Subject(s)
Black or African American/psychology , Decision Making , Health Knowledge, Attitudes, Practice/ethnology , Licensure/statistics & numerical data , Organ Transplantation , Tissue Donors/psychology , Adult , Female , Humans , Male , Motivation
20.
Arthritis Care Res (Hoboken) ; 69(11): 1724-1732, 2017 11.
Article in English | MEDLINE | ID: mdl-28118526

ABSTRACT

OBJECTIVE: To explore gout self-management and associated challenges and solutions in African Americans. METHODS: We conducted semistructured interviews with 35 African American veterans with gout, who received health care at Birmingham or Philadelphia Veterans Affairs (VA) medical centers, had filled urate-lowering therapy (ULT; most commonly allopurinol) for at least 6 months, and had a ULT medication possession ratio ≥80%. The interview protocol was constructed to explore key concepts related to gout self-management, including initial diagnosis of gout, beginning medical care for gout, the course of the gout, ULT medication adherence, dietary strategies, comorbidity and side effects, and social support. RESULTS: Thirty-five African American male veterans with gout who had ≥80% ULT adherence (most commonly, allopurinol) were interviewed at Birmingham (n = 18) or Philadelphia (n = 17) VA medical centers. Mean age was 65 years, mean body mass index was 31.9 kg/m2 , 97% had hypertension, 23% had coronary artery disease, and 31% had renal failure. The main themes motivating African American veterans to better gout self-management were fear of pain, adherence to medications, self-discipline, lifestyle changes, information gathering, and developing a positive outlook. Birmingham participants more frequently revealed skipping gout medications. More Philadelphia participants discussed lifestyle/diet changes to prevent gout flares, indicated limiting social activities that involved drinking, and sought more information about gout self-management from health care providers and internet sources. CONCLUSION: Identified themes, including cultural differences by site, led to the development of a patient-centered intervention to improve gout self-management in African American men with gout.


Subject(s)
Black or African American/ethnology , Disease Management , Gout/ethnology , Gout/therapy , Self Care/methods , Veterans , Black or African American/psychology , Aged , Gout/psychology , Gout Suppressants/therapeutic use , Humans , Male , Middle Aged , Self Care/psychology , Veterans/psychology
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