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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.
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Disabled Persons , Ovarian Neoplasms , Carcinoma, Ovarian Epithelial/therapy , Employment/psychology , Female , Humans , Middle Aged , Ovarian Neoplasms/therapy , Qualitative Research , Workplace/psychologyABSTRACT
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/psychologyABSTRACT
BACKGROUND: Surgery is essential for gastrointestinal (GI) cancer treatment. Many patients lack access to surgical care that optimizes outcomes. Scarce availability and/or low accessibility of appropriate resources may be the reason for this, especially in economically disadvantaged areas. This study aimed to investigate providers' and survivors' perspectives on barriers and facilitators to the availability and accessibility of surgical care. METHODS: Semistructured interviews informed by surgical disparities and access-to-care conceptual frameworks with purposively selected GI cancer providers and survivors in Alabama and Mississippi were conducted. Survivors were within 3 years of diagnosis of stage I to III esophageal, pancreatic, or colorectal cancer. Transcripts were analyzed using inductive thematic and content analysis techniques. Intercoder agreement was reached at 90 %. RESULTS: The 27 providers included surgeons (n = 11), medical oncologists (n = 2), radiation oncologists (n = 2), a primary care physician (n = 1), nurses (n = 8), and patient navigators (n = 3). This study included 36 survivors with ages ranging from 44 to 87 years. Of the 36 survivors, 21 (58.3 %) were male, and 11 (30.6 %) identified as Black. Responses were grouped into 3 broad categories: (i) transportation/geographic location, (ii) specialized care/testing, and (iii) patient-/provider-related factors. The barriers included lack and cost of transportation, reluctance to travel because of uneasiness with urban centers, low availability of specialized care, overburdened referral centers, provider-related referral biases, and low health literacy. Facilitators included availability of charitable aid, centralizing multidisciplinary care, and efficient appointment scheduling. CONCLUSION: In the Deep South, barriers and facilitators to the availability and accessibility of GI surgical cancer care were identified at the health system, provider, and patient levels, especially for rural residents. Our data suggest targets for improving the use of surgery in GI cancer care.
Subject(s)
Cancer Survivors , Gastrointestinal Neoplasms , Health Services Accessibility , Humans , Health Services Accessibility/statistics & numerical data , Male , Middle Aged , Female , Aged , Cancer Survivors/psychology , Cancer Survivors/statistics & numerical data , Adult , Aged, 80 and over , Alabama , Gastrointestinal Neoplasms/surgery , Gastrointestinal Neoplasms/psychology , Attitude of Health Personnel , Mississippi , Healthcare Disparities/statistics & numerical data , Surgeons/psychology , Surgeons/statistics & numerical data , Pancreatic Neoplasms/surgery , Patient Navigation/organization & administration , Physicians, Primary Care/psychology , Physicians, Primary Care/statistics & numerical dataABSTRACT
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 , MaleABSTRACT
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.
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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 (nâ¯=â¯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.