Accepting transitions: African Americans discuss end of life.

BACKGROUND: African Americans typically underuse hospice care; this study explores their end of life attitudes. METHODS: An iterative focus group strategy generated qualitative data using 4 baseline groups and 1 confirmatory focus group recruited from predominantly African American churches. Each group consisted of 8 to 14 adults. Investigators analyzed data for dominant themes, representatives from baseline groups returned to discuss the results. RESULTS: A total of 43 African Americans (male: 8 [18.6]; female: 35 [81.4]) participated in initial discussions, with 10 returning for follow-up. The prevailing theme was transitions; with life to death dominating discourse; other themes included curative to palliative care and acceptance of death as inevitable. RECOMMENDATION: Among African Americans, outreach efforts may be strengthened by reframing the dying process as the product of many transitions and reaching out to faith-based communities.

Barriers to hospice use and palliative care services use by African American adults.

UNLABELLED: This study explored the reasons for low levels of hospice participation by African Americans. METHODS: Data about attitudes toward dying and death, advanced directives, and barriers to using hospice services were collected from 314 adults attending 11 diversely populated churches in North Carolina. RESULTS: Almost all participants indicated (91%) willingness to use hospice, particularly if the hospice team were diverse (77%). Most are without a living will (72%) or health care power of attorney (81%); approximately half (54%) have shared final care wishes. DISCUSSION: Despite evidence of a willingness to use hospice, African Americans were unlikely to complete advanced directives or share final care wishes. However, many were more likely to use hospice if the care team were diverse suggesting the importance of culture.

A longitudinal investigation of coping strategies and quality of life among younger women with breast cancer.

It is generally assumed that coping strategies impact quality of life (QOL). It is plausible that QOL determines use of coping strategies. This research examines coping strategies over time and the reciprocal relationship between coping strategies and QOL among younger women with breast cancer. Women with breast cancer (N = 267; mean age = 43 years) completed surveys within 6 months of diagnosis and 6 weeks and 6 months later. Surveys included questions on coping strategies, QOL, medical factors, and sociodemographics. Positive cognitive restructuring was the most frequently used strategy. Over time, use of seeking social support, spirituality, and wishful thinking declined, while detachment increased. Prior QOL predicted three subsequent coping strategies (seeking social support, keeping feelings to self, wishful thinking). Coping strategies were minimally related to subsequent QOL. Coping strategies and QOL are dynamic processes. QOL may predict coping strategies equally or more than vice versa.

Measuring disability in older adults: the International Classification System of Functioning, Disability and Health (ICF) framework.

BACKGROUND: Despite the importance of disability to geriatric medicine, no large scale study has validated the activity and participation domains of the International Classification System of Functioning, Disability, and Health (ICF) in older adults. The current project was designed to conduct such as analysis, and then to examine the psychometric properties of a measure that is based on this conceptual structure. METHODS: This was an archival analysis of older adults (n = 1388) who had participated in studies within our Claude D Pepper Older Americans Independence Center. Assessments included demographics and chronic disease status, a 23-item Pepper Assessment Tool for Disability (PAT-D) and 6-min walk performance. RESULTS: Analysis of the PAT-D produced a three-factor structure that was consistent across several datasets: activities of daily living disability, mobility disability and instrumental activities of daily living disability. The first two factors are activities in the ICF framework, whereas the final factor falls into the participation domain. All factors had acceptable internal consistency reliability (>0.70) and test-retest (>0.70) reliability coefficients. Fast walkers self-reported better function on the PAT-D scales than slow walkers: effect sizes ranged from moderate to large (0.41-0.95); individuals with cardiovascular disease had poorer scores on all scales than those free of cardiovascular disease. In an 18-month randomized clinical trial, individuals who received a lifestyle intervention for weight loss had greater improvements in their mobility disability scores than those in a control condition. CONCLUSION: The ICF is a useful model for conceptualizing disability in aging research, and the PAT-D has acceptable psychometric properties as a measure for use in clinical research.

Restorative yoga for women with ovarian or breast cancer: findings from a pilot study.

Yoga has demonstrated benefit in healthy individuals and those with various health conditions. There are, however, few systematic studies to support the development of yoga interventions for cancer patients. Restorative yoga (RY) is a gentle type of yoga that has been described as "active relaxation." The specific aims of this pilot study were to determine the feasibility of implementing an RY intervention as a supportive therapy for women diagnosed with ovarian or breast cancer and to measure changes in self-reported fatigue, psychological distress and well-being, and quality of life. Fifty-one women with ovarian (n = 37) or breast cancer (n = 14) with a mean age of 58.9 years enrolled in this study; the majority (61%) were actively undergoing cancer treatment at the time of enrollment. All study participants participated in 10 weekly 75-minute RY classes that combined physical postures, breathing, and deep relaxation. Study participants completed questionnaires at baseline, immediately postintervention, and 2 months postintervention. Significant improvements were seen for depression, negative affect, state anxiety, mental health, and overall quality of life. Fatigue decreased between baseline and postintervention follow-up. Health-related quality of life improved between baseline and the 2-month follow-up. Qualitative feedback from participants was predominantly positive; relaxation and shared group experience were two common themes.

Younger women's perceptions of coping with breast cancer.

Numerous studies have demonstrated an association between coping strategies and better quality of life after breast cancer. Because younger women consistently show greater psychological morbidity than older women after breast cancer diagnosis, there is great interest in the coping strategies of younger women. The present cross-sectional study used quantitative and qualitative methods to examine coping strategies used by 201 women who were aged 50 years or younger at diagnosis and were 6 months to 3.5 years postdiagnosis. Quantitative results from a modified version of the Ways of Coping scale revealed that the most frequently used coping strategies were positive cognitive restructuring, wishful thinking, and making changes. Qualitative analyses based on open-ended questioning of how women best coped with different stressful aspects of their diagnosis showed that women reported finding different strategies useful depending on the stressor. For example, social support was helpful in dealing with anger or depression, whereas positive cognitive restructuring was more helpful for concerns about the future. Analyses also confirmed that most coping strategies cited in commonly administered coping scales were used frequently by these women. However, several coping strategies not generally measured were also deemed valuable, including engaging in physical activity, using medications, and resting. These findings suggest that clinicians should identify patients' particular stressors and help with coping techniques targeting particular concerns.

Research partnership with underserved African-American communities to improve the health of older persons with disability: a pilot qualitative study.

BACKGROUND AND AIMS: Underserved ethnic minorities are often under-represented in clinical investigations, often in the context of poor relationships between academic institutions and their minority communities. The aim of this study was to investigate an African-American community's perceptions about the barriers that hinder participation in research studies and, more broadly, on the status of institution/community relationships. METHODS: We conducted a pilot qualitative study, based on semi- structured interviews of leaders of African-American communities in Winston-Salem, North Carolina. Relevant themes were abstracted from the interviews by a standardized iterative process. RESULTS: Interviewees identified barriers to participation of African- Americans in research, and suggested that existing barriers may be overcome with an innovative model of a community/institution relationship, which would include open communication and cooperation, mutually beneficial programs, holistic approaches to health and disease, participatory and balanced partnerships with communities, and the establishment of multiethnic advisory boards. CONCLUSIONS: This study suggests strategies that public health researchers should consider to establish effective institution/community relationships, in order to enhance participation of underserved ethnic minorities in research studies, and to improve the health status of their most disabled and demanding seniors.

Women's satisfaction with their on-going primary health care services: a consideration of visit-specific and period assessments.

OBJECTIVE: To compare and contrast patient ratings of satisfaction with primary care on the day of visit versus over the last 12 months. DATA SOURCES/STUDY SETTING: Survey data were collected from female participants at primary care centers affiliated with the University of Michigan, University of Pittsburgh, and Wake Forest University. STUDY DESIGN: One thousand and twenty-one patients attending a primary care visit with at least one prior visit to the study site were consented on site, enrolled in the study, and surveyed at two time points: pre- and immediately postvisit. DATA COLLECTION: The previsit survey included demographics, self-rated health, visit history (site continuity), and expectations for health care; the postvisit survey focused on patient experiences during the visit, assessment of health care quality using the Primary Care Satisfaction Survey for Women instrument, and global satisfaction with visit and health care over the past 12 months. Expectation discrepancy scores were constructed from the linked expectation-experience ratings. Path analysis and indices of model fit were used to investigate the strength of theoretical links among the variables in an analytic model considering both day-of-visit and past-year ratings with global measures of patient satisfaction as the dependent variables. PRINCIPAL FINDINGS: General health, site continuity and fulfillment of patient expectations for care were linked to global ratings of satisfaction through effects on communication, care coordination, and office staff and administration. Importantly, past-year ratings were mediated largely by care coordination and continuity; day-of-visit ratings were mediated by communication. CONCLUSION: Ratings of health care quality for a specific visit appear to be conceptually distinct from ratings of care over the past 12 months, and thus are not interchangeable.

Attitudes of African American and low socioeconomic status white women toward medical research.

Minority and low socioeconomic status women are under-represented in clinical research due to logistical, informational, attitudinal, and sociocultural barriers. The primary objective of this study was to explore factors associated with research participation among African American and low socioeconomic status White women using the Theory of Planned Behavior. A secondary goal was to assess differences in barriers to research participation by age and race. A combination of qualitative (focus groups) and quantitative (trust scale) methodologies was employed. Ten focus groups were held, organized by age and race. Content analysis revealed three predominant themes: fear, distrust, and hope. Older women had higher trust; there was no difference in trust by race. The results suggest that women have conflicting feelings about research that cross ethnic lines and should be addressed by researchers. Effective strategies for overcoming barriers and increasing representation are those that establish ongoing relationships with relevant communities.

A qualitative exploration of the cancer experience among long-term survivors: comparisons by cancer type, ethnicity, gender, and age.

BACKGROUND: To elucidate meanings ascribed to the cancer experience by long-term survivors. METHODS: Semi-structured interviews were conducted with 58 cancer survivors (>15 years post-diagnosis). Respondents described how cancer affected their quality of life (QOL) generally and in 17 domains. Systematic content analyses were conducted to extract themes relating to meanings assigned to the cancer experience. Themes were analyzed by cancer type, gender, and age and confirmed using quantitative assessments of self-rated health and QOL. RESULTS: Four themes were identified: Personal Growth, That's Life. Relinquishing Control, and Resentment. Women more frequently acknowledged Personal Growth, and men more often indicated minimal impact on their lives (That's Life). Older survivors were disproportionately classified as That's Life and younger survivors as Personal Growth. No differences were observed by cancer type or ethnicity. Those who saw cancer as personal growth had the highest QOL, while those who resented cancer had the lowest QOL. CONCLUSIONS: Most long-term survivors retrospectively report that cancer either positively influenced their lives or had little long-term impact. Those who express Resentment report that pain, physical deformities, and social isolation significantly reduced their QOL. This qualitative study highlights how cancer survivors incorporate the cancer experience within their overall lives.

Cancer screening among Native Americans in eastern North Carolina.

The purpose of the study is to explore cancer screening predictors and practices among Lumbee Indians in eastern North Carolina. Interviewers from the community conducted phone interviews with 333 men and 456 women aged 40 and older randomly selected from the Lumbee Tribal roll as part of the Lumbee Diabetes and Health Survey. The survey has sections on demographic information and health conditions, family history of chronic conditions, and health behaviors. This paper reports on cancer screening behaviors. Rates of ever being screened for breast, cervical, prostate and colon cancer were relatively high compared with overall national rates. Predictors included younger age, better health, more education, and lifestyle factors such as engaging in regular physical activity and not smoking. Future research should focus on developing culturally appropriate campaigns to increase the frequency of cancer screening to conform to guidelines, and educational programs and interventions to reach Lumbee Indians most at risk for not being screened.

Smoking and incidence of diabetes among U.S. adults: findings from the Insulin Resistance Atherosclerosis Study.

OBJECTIVE: The objective of this study was to determine the association between smoking and incident diabetes among U.S. adults. RESEARCH DESIGN AND METHODS: The Insulin Resistance Atherosclerosis Study (IRAS) was a prospective study of the associations of insulin sensitivity and cardiovascular risk factors. We examined the relationship between smoking status categories (never, former, and current) and incident 5-year type 2 diabetes among 906 participants free of diabetes at baseline. We also considered the effect of pack-year categories (never, former <20 pack-years, former > or = 20 pack-years, current <20 pack-years, and current > or = 20 pack-years) upon diabetes incidence. RESULTS: Of current smokers, 96 (25%) developed diabetes at 5 years, compared with 60 (14%) never smokers. After multivariable adjustment, current smokers exhibited increased incidence of diabetes compared with never smokers (odds ratio [OR] 2.66, P = 0.001). Similar results were found among current smokers with > or = 20 pack-years with normal glucose tolerance (5.66, P = 0.001). CONCLUSIONS: Smoking shares a robust association with incident diabetes, supporting the current Surgeon General's warnings against cigarette smoking.

Challenges and innovations in enhancing adherence.

Adherence is a complex phenomenon involving interactions among the individual, the environment and the community. In an adherence workshop, a small group of investigators discussed their experiences with challenges and innovations regarding adherence gleaned from clinical research. This article summarizes the information and outcomes of that meeting. Guided by theoretical frameworks for understanding and promoting adherence, challenges in the areas of measurement, community-based research, and interventions were explored and innovations for meeting these challenges suggested. The article concludes with recommendations for enhancing the adherence agenda: (1) adherence research must have a well-defined conceptual and theoretical basis; (2) individual perceptions and social context of behavior must be incorporated; (3) research must be undertaken as a collaborative process involving participants and the community. Looking ahead, it is clear that if we hope to develop a new and integrated model of adherence, we must continue to advance theory through theory testing, with particular attention given to mediators and diverse samples. Moreover, an interdisciplinary agenda is necessary to set the stage for bringing together researchers from various disciplines and backgrounds with both participants and community representatives.