Managing One's Symptoms: A Qualitative Study of Low-Income African Americans With Advanced Cancer.

BACKGROUND: African Americans endure disproportionately high advanced cancer rates and also are disproportionately represented in the lower socioeconomic strata. These individuals work to manage symptoms in order to function and have a satisfactory quality of life. OBJECTIVE: The purpose of this study was to discover what low-income African American adults with advanced cancer do on a day-to-day basis to relieve and manage symptoms. This study viewed the individuals as experts and asked them not what they are told to do, but rather what they actually do. METHODS: A purposive sample of 27 individuals participated in semistructured interviews conducted by 2 research interviewers. This qualitative descriptive approach used content analysis to develop themes to describe symptom self-management. RESULTS: Participants described 2 approaches: making continual adjustments and finding stability through spirituality. In seeking comfort from the distress of their symptoms, they were constantly altering their activities and fine-tuning strategies. They adjusted medical regimens and changed the speed and selection of daily activities, including comfort measures and diet modifications. In contrast, their spirituality was a consistent presence in their lives that provided balance to their unstable symptom experience. CONCLUSIONS: This study illustrates that people with advanced cancer actively engage in multiple complex self-management strategies in response to symptoms. IMPLICATIONS FOR PRACTICE: As providers assess how individuals manage their symptoms, they must find ways to support those efforts. Providers then will recognize the challenges faced by advanced cancer patients in obtaining the best quality of life while managing multiple symptoms, activities, and family responsibilities.

A dyadic model of living with epilepsy based on the perspectives of adults with epilepsy and their support persons.

Epilepsy is a chronic condition that significantly affects the lives of individuals with epilepsy and their support persons, though few studies have examined the experiences of both. To examine these experiences and explore the interpersonal relationships between dyad members, we conducted in-depth interviews with 22 persons with epilepsy and 16 support persons. Data analysis was guided by a grounded theory perspective. We developed a model that shows how epilepsy impacts the lives of both persons with epilepsy and their support persons and how the experiences of persons with epilepsy and supporters influence one another. The core model elements were seizure and treatment factors, relationship characteristics, self-management, seizure control, support provided, illness intrusiveness, and quality of life. Persons with epilepsy moved through the model in five trajectories depending on seizure control, relationship type, and gender. Support providers followed four trajectories based on seizure control, perception of burden, and support for themselves. Persons with epilepsy and their primary support providers have varied experiences in how epilepsy affects their lives. This model could serve as a basis for future research and intervention efforts focused on ways to reduce illness intrusiveness and improve quality of life for persons with epilepsy and their supporters.

Perspectives of adults with epilepsy and their support persons on self-management support.

Social support is an important mechanism for improving self-management, although little is known about its role in epilepsy self-management. We examined the type of support provided to people with epilepsy and its influence on self-management. We conducted in-depth interviews with 22 people with epilepsy and 16 support persons, representing 14 pairs and 10 unpaired individuals. We analyzed the data using principles of grounded theory. Supporters, who were mainly parents and spouses, aided people with epilepsy in every dimension of self-management. Support for self-management occurred along a continuum from person with epilepsy-led management to support person-led management. Where the pairs fell on the continuum depended on developmental stage, relationship type, and relationship dynamics. Seizure control shaped individuals' experiences with self-management and support within each group. The self-management continuum provides a new aspect that can be integrated into existing models of self- and family management.

A mixed methods analysis of support for self-management behaviors: perspectives of people with epilepsy and their support providers.

Social support is associated with improved self-management for people with chronic conditions, such as epilepsy; however, little is known about the perceived ease or difficulty of receiving and providing support for epilepsy self-management. We examined patterns of epilepsy self-management support from the perspectives of both people with epilepsy and their support persons. Fifty-three people with epilepsy and 48 support persons completed a survey on epilepsy self-management support. Of these individuals, 22 people with epilepsy and 16 support persons completed an in-depth interview. Rasch measurement models were used to evaluate the degree of difficulty of receiving or providing support often for nine self-management tasks. We analyzed model-data fit, person and item location along the support latent variable and differential person and item functioning. Qualitative methods were used to provide context and insight into the quantitative results. The results demonstrated good model-data fit. Help with seizures was the easiest type of support to receive or provide more often, followed by rides to a doctor's appointments and help avoiding seizure triggers. The most difficult types of support to receive or provide more often were reminders, particularly for taking and refilling medications. While most participants' responses fit the model, responses of several individuals misfit the model. Person misfit generally occurred because the scale items did not adequately capture some individuals' behaviors. These results could be useful in designing interventions that use support as a means of improving self-management. Additionally, the results provide information to improve or expand current measures of support for epilepsy self-management to better assess the experiences of people with epilepsy and their support persons.

The meaning and use of spirituality among African American women living with HIV/AIDS.

The purpose of this qualitative study was to explore the meaning and use of spirituality among African American (AA), predominantly Christian women with HIV. A nonrandom sample of 20 AA women from a large infectious disease clinic in Metro-Atlanta participated in the study. The study used focus groups and individual interviews to interview women about their lived spiritual experience. Content analysis and NUDIST software were used to analyze transcripts. The findings revealed the spiritual views and practices of AA women with HIV. The following themes (and subthemes) emerged: Spirituality is a process/journey or connection (connection to God, higher power, or spirit and HIV brought me closer to God), spiritual expression (religion/church attendance, prayer, helping others, having faith), and spiritual benefits (health/healing, spiritual support, inner peace/strength/ability to keep going, and here for a reason or purpose/a second chance). Findings highlight the importance of spirituality in health and well-being among AA women with HIV/AIDS.

Social support for self-management behaviors among people with epilepsy: a content analysis of the WebEase program.

Social support is an important component in managing epilepsy; however little is known about support provided to people with epilepsy. This study examined whom people with epilepsy identify as supportive, and how those individuals support people with epilepsy's self-management efforts. Data come from the WebEase project, an effective online epilepsy self-management program. People with epilepsy who participated in the pilot (n=35) and efficacy trials (n=118) were included. A content analysis was conducted on responses to open-ended questions related to support. The majority of participants provided information about their supporters. The number of support providers ranged from 0 to 6, with about 12% indicating no support. Parents and significant others were most commonly listed as supporters. Support providers mainly offer emotional and instrumental support, reminders and aid for taking medication, and support for self-management strategies. These results could be useful for interventions aimed at bolstering support in order to improve self-management.

Results of a research study evaluating WebEase, an online epilepsy self-management program.

WebEase (Epilepsy Awareness, Support, and Education) is an online epilepsy self-management program to assist people with taking medication, managing stress, and improving sleep quality. The primary study aims were to determine if those who participated in WebEase demonstrated improvements in medication adherence, perceived stress, and sleep quality. Participants were randomized to a treatment (T) or waitlist control (WCL) group (n=148). At follow-up, participants in the T group reported higher levels of medication adherence than those in the WLC group. Analyses were also conducted comparing those who had completed WebEase modules with those who had not. Those who had completed at least some modules within the WebEase program reported higher levels of self-efficacy and a trend toward significance was observed for the group×time interactions for medication adherence, perceived stress, self-management, and knowledge. The results highlight the usefulness of online tools to support self-management among people with epilepsy.

Spiritual Well-Being and Health-Related Quality of Life Among African-American Women with HIV/AIDS.

Many HIV-positive women regard spirituality as an important part of their lives and spirituality may have positive impact on their health-related quality of life (HRQOL). Particularly among African American women with HIV, spirituality may serve as a cultural and psychological resource. This descriptive, crosssectional study examined associations between spiritual well-being (SWB) and its components, existential well-being (EWB) and religious well-being (RWB), and dimensions of HRQOL among a non-random sample of 118 African American HIV-positive women. A secondary analysis of data from two similar, NIH-funded studies: The Get Busy Living (GBL) Project and the KHARMA Project, was conducted. Baseline data on women from both studies were combined into one database and statistical analyses, including descriptive, correlation and hierarchical regression analyses, were conducted. Existential well-being was significantly positively (ß =.74; p=.014) associated with the physical composite of HRQOL and accounted for a significant amount of unique variance (10.0%) beyond that explained by socio-demographic variables, religious well-being (RWB), HIV medication adherence, CD4 cell count and percentage, HIV viral load, and depressive symptoms. EWB was also significantly positively (ß =.57; p=.024) associated with the mental health composite of HRQOL. Depressive symptomatology was also significantly inversely (ß =.40; p=.004) associated with mental HRQOL. EWB accounted for a significant amount of additional variance (6.3%) beyond that explained by other variables. Spirituality is an important factor in the lives and quality of life of African American women and women living with HIV/AIDS. Further research is needed to examine relationships between spirituality and HRQOL among HIV-positive African American women.

Updated research priorities for neuroscience nursing.

In 2007, the Neuroscience Nursing Foundation (NNF) convened a research panel to update NNF's research priorities used to guide funding. The research panel identified leaders in neuroscience nursing and conducted a review of neuroscience nursing research literature and an American Association of Neuroscience Nurses membership survey on research priorities. A workgroup of leaders in neuroscience nursing was then convened to draft and set priorities on the basis of the review of the literature and the membership survey. The updated priorities were submitted to the NNF Board of Trustees for approval. The revised document reviews the mission of NNF and outlines six strategies and five program areas (including specific subareas) that represent priorities for NNF research funding. The purpose of the updated priority document is to provide guidelines for the systematic development of knowledge in neuroscience nursing through the encouragement of selected neuroscience nursing research activities.

Adherence, sexual risk, and viral load in HIV-infected women prescribed antiretroviral therapy.

Abstract The purpose of this study was to determine if there was a connection between adherence to antiretroviral therapy (ART) and use of risk reduction behaviors (RRB) in HIV-infected women who were prescribed antiretroviral therapy. The sample consisted of 193 predominately African American women with an average age of 44 who had been on ARV for approximately 9 years and had low annual incomes. All women were participating in a behavioral clinical trial focused on these dual outcomes. Using a risk index developed for this study, we examined the relationship of a composite of risk behaviors to electronically measured and self-reported adherence over the approximately 13-month study period. Women were categorized based on levels of adherence and risky behaviors, and we sought to determine if these classifications were associated with clinical outcomes of HIV viral load and CD4 counts. High levels of adherence were correlated with low risk behaviors (abstinence, consistent use of condoms, etc.). Those classified as high adherence and low-risk behavior (HALR) as well as those classified as high adherence and high-risk behavior (HAHR) had lower mean viral loads and higher CD4 counts than those in the other categories. Women in the low adherence and high-risk category (LAHR) had detectable viral loads and the lowest CD4 counts and are at higher risk for transmitting HIV to partners and unborn children. Our findings underscore the importance of addressing adherence to both ART and RRB in HIV clinical settings to improve clinical outcomes and reduce HIV transmission.

Use of complementary and alternative medicine among men with prostate cancer in a rural setting.

UNLABELLED: The purpose of this study was to examine the prevalence and predictors of complementary and alternative medicine (CAM) use among rural patients with localized prostate cancer. The study also examined the participants' disclosure of CAM use to their physicians. Baseline and 6-month follow-up data were taken from a study examining the factors that influence treatment choice and quality of life among men diagnosed with and being treated for localized prostate cancer residing in rural southwest Georgia (N = 321). A total of 291 participants were interviewed at baseline and 6-month follow-up. FINDINGS: At baseline, 26.4% reported ever using CAM. Among them, dietary supplements were the most commonly used (75%), and 56% of patients did not disclose their CAM use to their physicians. At 6-month follow-up, 11% of the study sample reported using CAM since starting treatment (half of these were new users). The proportions of CAM users who reported taking dietary supplements after treatment were significantly lower than the corresponding proportions before treatment. CAM use after treatment was more common among those who selected surgery and watchful waiting. While 44% of the sample disclosed using CAM to their doctors before treatment, 61% after treatment began (P = 0.05). We found that CAM use after cancer treatment in this population was markedly less common than in nationally reported data for cancer patients. In line with national patterns, younger and more educated rural patients were significantly more likely to have ever used CAM and to use it after treatment.

The effect of race and rural residence on prostate cancer treatment choice among men in Georgia.

OBJECTIVE: To analyze differences for prostate cancer by race and in rural areas. METHODS: We studied 516 men younger than 75 years old with incident prostate cancer during 2005-08 in 33 counties in Southwest Georgia (SWGA), a rural area of 700,000 (40% African American). Treatment data were abstracted from medical records, and interviews conducted with 314 men. We also compared treatments in SWGA vs. Atlanta in 2005. RESULTS: External radiation plus brachytherapy was the most common treatment in SWGA (31%), followed by external radiation alone (27%), and surgery (18%). Patients in SWGA had higher odds of external radiation vs. surgery than men in Atlanta (OR 2.66, 95% CI 1.85-3.81). African Americans had higher odds of choosing treatment other than surgery, compared with whites (OR 2.04, 95% CI 1.57-2.63), more so in SWGA (OR 3.51, 95% CI 1.92-6.41) than Atlanta (OR 1.76, 95% CI 1.32-2.35) (P = .05). Poor communication with their physician was reported by 13% of men in SWGA, more among African Americans than whites (OR 3.95, 95% CI 1.52-10.30), and more among those who had no treatment vs. some treatment (OR 5.77, 95% CI 1.88-11.46). CONCLUSIONS: In both rural and urban Georgia, white men with prostate cancer had surgery more frequently than African Americans, although data suggest this may be caused more by income differences than race. Rural patients as opposed to urban patients were more likely to receive external radiation and less likely to receive brachytherapy alone or surgery. Poor communication with a physician, particularly prevalent among African Americans, was associated with choosing no treatment in SWGA.

Group motivational interviewing to promote adherence to antiretroviral medications and risk reduction behaviors in HIV infected women.

We present the results of a clinical trial that tested the efficacy of using motivational interviewing (MI) in a group format to promote adherence to antiretroviral medications and risk reduction behaviors (RRB) in 203 predominately African American HIV infected women. It was compared to a group health promotion program. Participants were followed for 9 months. Adherence was measured by MEMS(®); and RRB by self-report. Controlling for recruitment site and years on ART, no significant group by time effects were observed. Attendance (≥7/8 sessions) modified the effects. Higher MI attendees had better adherence at all follow-ups, a borderline significant group by time effect (p = 0.1) for % Doses Taken on Schedule, a significantly larger proportion who reported abstinence at 2 weeks, 6, and 9 months, and always used protection during sex at 6 and 9 months. Though not conclusive, the findings offer some support for using MI in a group format to promote adherence and some risk reduction behaviors when adequate attendance is maintained.

Differences in treatment-based beliefs and coping between African American and white men with prostate cancer.

The purpose of the study was to explore racial differences related to treatment-based beliefs (trust in physician, physician bias, access to care, and self-efficacy) and coping (religious coping and social support). The study was conducted in a 33-county area located in southwest Georgia (SWGA). Men living in SWGA and newly diagnosed with prostate cancer were invited to participate in the study. Men were also required to be 75 years of age or younger at the beginning of the study and free of dementia. In collaboration with the Georgia Cancer Registry, potentially eligible participants were identified through pathology reports. Participants completed three interviews during a 12-month period post-diagnosis. The 320 participants in this analysis ranged in age from 44 to 75 years with a mean age of 63 years, and 42% were African American. After controlling for confounders, African American participants were more likely to report physician bias, financial problems with access to care, and use of religious coping strategies. These results, based on a largely rural patient population, support those of other studies noting differences in perception of care, access to care, and coping strategies between African American and white men with prostate cancer.

Distance delivery of mindfulness-based cognitive therapy for depression: project UPLIFT.

This study evaluated the efficacy of a newly developed, home-based depression intervention for people with epilepsy. Based on mindfulness-based cognitive therapy (MBCT), the eight-session, weekly intervention was designed for group delivery via the Internet or telephone. Forty participants were randomly assigned to intervention or waitlist. Depressive symptoms and other outcomes were measured at baseline, after intervening in the intervention group (~8 weeks), and after intervening in the waitlist group (~16 weeks). Depressive symptoms decreased significantly more in the intervention group than the waitlist group; Internet and telephone did not differ. This effect persisted over the 8 weeks when those waitlisted received the intervention. Knowledge/skills increased significantly more in the intervention than the waitlist group. All other changes, though not significant, were in the expected direction. Findings indicate that distance delivery of group MBCT can be effective in reducing symptoms of depression in people with epilepsy. Directions for future research are proposed.

The prevention research centers' managing epilepsy well network.

The Managing Epilepsy Well (MEW) Network was created in 2007 by the Centers for Disease Control and Prevention's (CDC) Prevention Research Centers and Epilepsy Program to promote epilepsy self-management research and to improve the quality of life for people with epilepsy. MEW Network membership comprises four collaborating centers (Emory University, University of Texas Health Science Center at Houston, University of Michigan, and University of Washington), representatives from CDC, affiliate members, and community stakeholders. This article describes the MEW Network's background, mission statement, research agenda, and structure. Exploratory and intervention studies conducted by individual collaborating centers are described, as are Network collaborative projects, including a multisite depression prevention intervention and the development of a standard measure of epilepsy self-management. Communication strategies and examples of research translation programs are discussed. The conclusion outlines the Network's role in the future development and dissemination of evidence-based epilepsy self-management programs.

An examination of the psychometric properties of the Antiretroviral General Adherence Scale (AGAS) in two samples of HIV-infected individuals.

This article reports on the development and psychometric properties of the Antiretroviral General Adherence Scale (AGAS) in two National Institutes of Health-funded projects: the Get Busy Living Project, a behavioral clinical trial to promote consistent use of antiretroviral therapy, and the KHARMA (Keeping Healthy and Active with Risk Reduction and Medication Adherence) Project, which addressed issues of adherence and risk reduction behavior in women. AGAS assesses the ease and ability of participants to take antiretroviral therapy according to a health care provider's recommendations. Data were analyzed from completed baseline assessments of the two studies. The AGAS was internally consistent in both samples. Content, construct, and criterion validity were established using factor analysis and correlations of total AGAS scores with two measures of adherence: electronic drug monitoring and an Adult AIDS Clinical Trials Group adherence scale. Viral load, CD4 cell counts, and depression scores were also examined. Reliability and validity of the AGAS were supported in both samples.

Attitudes about mental illness and its treatment: validation of a generic scale for public health surveillance of mental illness associated stigma.

The purpose of this study was to test a brief instrument to monitor the U.S. public's attitudes about mental illness. A SAMHSA and CDC-led panel reached consensus through an iterative process to identify generic, multidimensional measures to test using a representative sample of 5,251 adults. Exploratory factor analysis revealed two subscales (Negative Stereotypes [alpha = 0.66]; Recovery and Outcomes [alpha = 0.69]). Confirmatory factor analysis supported the convergent validity of the two subscales. Subscale scores differed by sex, race/ethnicity, and experience with mental illness. Inclusion of these brief subscales on existing population-based surveys can help states and others track attitudes about mental illness.

Spiritual well-being, depressive symptoms, and immune status among women living with HIV/AIDS.

Spirituality is a resource some HIV-positive women use to cope with HIV, and it also may have positive impact on physical health. This cross-sectional study examined associations of spiritual well-being, with depressive symptoms, and CD4 cell count and percentages among a non-random sample of 129 predominantly African-American HIV-positive women. Significant inverse associations were observed between depressive symptoms and spiritual well-being (r = -.55, p = .0001), and its components, existential well-being (r = -.62, p = .0001) and religious well-being (r = -.36, p = .0001). Significant positive associations were observed between existential well-being and CD4 cell count (r = .19, p < .05) and also between spiritual well-being (r = .24, p < .05), religious well-being (r = .21, p < .05), and existential well-being (r = .22, p < .05) and CD4 cell percentages. In this sample of HIV-positive women, spiritual well-being, existential well-being, and religious well-being accounted for a significant amount of variance in depressive symptoms and CD4 cell percentages, above and beyond that explained by demographic variables, HIV medication adherence, and HIV viral load (log). Depressive symptoms were not significantly associated with CD4 cell counts or percentages. A significant relationship was observed between spiritual/religious practices (prayer/meditation and reading spiritual/religious material) and depressive symptoms. Further research is needed to examine relationships between spirituality and mental and physical health among HIV-positive women.

Individual, seizure-related, and psychosocial predictors of depressive symptoms among people with epilepsy over six months.

Depression is the most frequently diagnosed psychiatric disorder among people with epilepsy. A variety of risk factors for depression among people with epilepsy have been identified; however, few studies have examined these risk factors over time. The primary purpose of this study was to explore the relationship between demographic characteristics, seizure-related factors, and psychosocial factors and depressive symptoms over 6 months. Three hundred and nineteen adults with epilepsy completed three surveys at 3-month intervals. Multiple linear regression was used with the baseline variables to predict depressive symptoms at baseline, 3 months, and 6 months. Employment status, social support, and stigma emerged as predictors of depressive symptoms at all three time points. Other factors that predicted depression symptoms in one or two time points were self-management, financial strain, and activity restriction due to seizures. The results indicate that multiple factors influence depressive symptoms among people with epilepsy.