Care Transitions in Childhood Cancer Survivorship: Providers' Perspectives.

PURPOSE: Most adolescent and young adult (AYA)-aged childhood cancer survivors develop physical and/or psychosocial sequelae; however, many do not receive long-term follow-up (LTF) critical for screening, prevention, and treatment of late effects. To develop a health services research agenda to optimize care models, we conducted qualitative research with LTF providers examining existing models, and successes and challenges in maintaining survivors' connections to care across their transition to adulthood. METHODS: We interviewed 20 LTF experts (MDs, RNs, social workers, education specialists, psychologists) from 10 Children's Oncology Group-affiliated institutions, and analyzed data using grounded theory and content analysis techniques. RESULTS: Participants described the complexity of survivors' healthcare transitions. Survivors had pressing educational needs in multiple domains, and imparting the need for prevention was challenging. Multidisciplinary LTF teams focused on prevention and self-management. Care and decisions about transfer were individualized based on survivors' health risks, developmental issues, and family contexts. An interplay of provider and institutional factors, some of which were potentially modifiable, also influenced how transitions were managed. Interviewees rarely collaborated with community primary care providers to comanage patients. Communication systems and collective norms about sharing care limited comanagement capacity. Interviewees described staffing practices, policies, and informal initiatives they found reduced attrition. CONCLUSIONS: Results suggest that survivors will benefit from care models that better connect patients, survivorship experts, and community providers for uninterrupted LTF across transitions. We propose research priorities, framing attrition from LTF as a public health concern, transition as the central challenge in LTF, and transition readiness as a multilevel concept.

Upending the social ecological model to guide health promotion efforts toward policy and environmental change.

Efforts to change policies and the environments in which people live, work, and play have gained increasing attention over the past several decades. Yet health promotion frameworks that illustrate the complex processes that produce health-enhancing structural changes are limited. Building on the experiences of health educators, community activists, and community-based researchers described in this supplement and elsewhere, as well as several political, social, and behavioral science theories, we propose a new framework to organize our thinking about producing policy, environmental, and other structural changes. We build on the social ecological model, a framework widely employed in public health research and practice, by turning it inside out, placing health-related and other social policies and environments at the center, and conceptualizing the ways in which individuals, their social networks, and organized groups produce a community context that fosters healthy policy and environmental development. We conclude by describing how health promotion practitioners and researchers can foster structural change by (1) conveying the health and social relevance of policy and environmental change initiatives, (2) building partnerships to support them, and (3) promoting more equitable distributions of the resources necessary for people to meet their daily needs, control their lives, and freely participate in the public sphere.

Structural approaches to health promotion: what do we need to know about policy and environmental change?

Although the public health literature has increasingly called on practitioners to implement changes to social, environmental, and political structures as a means of improving population health, recent research suggests that articles evaluating organization, community, or policy changes are more limited than those focused on programs with individuals or their social networks. Even when these approaches appear promising, we do not fully understand whether they will benefit all population groups or can be successful in the absence of accompanying individually oriented programs. The role of this broad category of approaches, including both policy and environmental changes, in decreasing health disparities is also unclear, often benefiting some communities more than others. Finally, the political nature of policy and environmental change, including the impact on personal autonomy, raises questions about the appropriate role for public health professionals in advancing specific policies and practices that alter the conditions in which people live. This article addresses these issues and ends with a series of questions about the effectiveness and ethical implementation of what we have termed "structural initiatives."

Social ecological approaches to individuals and their contexts: twenty years of health education & behavior health promotion interventions.

Social ecological models that describe the interactive characteristics of individuals and environments that underlie health outcomes have long been recommended to guide public health practice. The extent to which such recommendations have been applied in health promotion interventions, however, is unclear. The authors developed a coding system to identify the ecological levels that health promotion programs target and then applied this system to 157 intervention articles from the past 20 years of Health Education & Behavior. Overall, articles were more likely to describe interventions focused on individual and interpersonal characteristics, rather than institutional, community, or policy factors. Interventions that focused on certain topics (nutrition and physical activity) or occurred in particular settings (schools) more successfully adopted a social ecological approach. Health education theory, research, and training may need to be enhanced to better foster successful efforts to modify social and political environments to improve health.

Perceived everyday racism, residential segregation, and HIV testing among patients at a sexually transmitted disease clinic.

OBJECTIVES: More than one quarter of HIV-infected people are undiagnosed and therefore unaware of their HIV-positive status. Blacks are disproportionately infected. Although perceived racism influences their attitudes toward HIV prevention, how racism influences their behaviors is unknown. We sought to determine whether perceiving everyday racism and racial segregation influence Black HIV testing behavior. METHODS: This was a clinic-based, multilevel study in a North Carolina city. Eligibility was limited to Blacks (N = 373) seeking sexually transmitted disease diagnosis or screening. We collected survey data, block group characteristics, and lab-confirmed HIV testing behavior. We estimated associations using logistic regression with generalized estimating equations. RESULTS: More than 90% of the sample perceived racism, which was associated with higher odds of HIV testing (odds ratio = 1.64; 95% confidence interval = 1.07, 2.52), after control for residential segregation, and other covariates. Neither patient satisfaction nor mechanisms for coping with stress explained the association. CONCLUSIONS: Perceiving everyday racism is not inherently detrimental. Perceived racism may improve odds of early detection of HIV infection in this high-risk population. How segregation influences HIV testing behavior warrants further research.

Discrimination, distrust, and racial/ethnic disparities in antiretroviral therapy adherence among a national sample of HIV-infected patients.

OBJECTIVE: Although discriminatory health care experiences and health care provider distrust have been shown to be associated with health care disparities, little is known about their contribution to racial/ethnic disparities in antiretroviral therapy adherence. We therefore sought to assess the extent to which discriminatory health care experiences and health care provider distrust influence treatment-related attitudes, beliefs, and self-reported adherence in a national sample of HIV-infected patients. STUDY DESIGN: This secondary analysis used data from the HIV Cost and Services Utilization Study. We used structural equation modeling to identify pathways from minority status to adherence through discrimination, distrust, and treatment-related attitudes and beliefs. PARTICIPANTS: The sample was the 1886 participants who completed the baseline and 2 follow-up interviews and were prescribed antiretroviral therapy at the second follow-up interview (54% white, 28% black, 14% Hispanic, and 3% others). RESULTS: Minorities were less likely to report perfect adherence than whites (40% vs. 50%, P < or = 0.001). Over one third (40%) of all participants reporting ever having discriminatory health care experiences since having HIV, and 24% did not completely or almost completely trust their health care providers. The effect of minority status on adherence persisted in the full model. More discrimination predicted greater distrust, weaker treatment benefit beliefs, and, in turn, poorer adherence. Distrust affected adherence by increasing treatment-related psychological distress and weakening treatment benefit beliefs. CONCLUSIONS: The relationship between minority status and adherence was not fully explained by patient-level factors. Future studies should consider conceptualizing minority status as a contextual factor rather than predictor.

Applying health education theory to patient safety programs: three case studies.

Program planning for patient safety is challenging because intervention-oriented surveillance data are not yet widely available to those working in this nascent field. Even so, health educators are uniquely positioned to contribute to patient safety intervention efforts because their theoretical training provides them with a guide for designing and implementing prevention programs. This article demonstrates the utility of applying health education concepts from three prominent patient safety campaigns, including the concepts of risk perception, community participation, and social marketing. The application of these theoretical concepts to patient safety programs suggests that health educators possess a knowledge base and skill set highly relevant to patient safety and that their perspective should be increasingly brought to bear on the design and evaluation of interventions that aim to protect patients from preventable medical error.

Women's experiences with violence: a national study.

BACKGROUND: Violence against women (VAW) is widespread and linked to negative public health and social outcomes. Research on VAW, however, has largely been limited to convenience samples and on variable definitions of violence, hindering our ability to fully characterize this important problem nationally and among subgroups of women. METHODS: Using a population-based national sample of noninstitutionalized women ages > or =18 (n = 1,800), we conducted a telephone survey on women's experiences with 6 types of violence, including being followed and repeatedly contacted, as well as physical and sexual assault by intimate partners and others. We calculated adult lifetime and prior year prevalence of violent experiences, examined bivariate differences in experiences among groups of women, and employed logistic regression to model the odds of adult lifetime and prior year victimization. RESULTS: Sixty percent of the respondents experienced at least 1 form of violence since age 18; 10% reported violence in the previous year. Adult lifetime and prior-year prevalence varied widely by types of violence, and by respondents' sociodemographic characteristics. Women under age 55, those receiving public assistance, and lesbian/bisexual women were at higher risk of experiencing violence in their adult lifetimes. Women age 18-24 had increased risks of victimization in the previous year. CONCLUSIONS: To accurately reflect the chronic nature of partner violence, point estimates should be supplemented with adult lifetime estimates of victimization, including stalking behaviors. Ensuring adequate numbers of women from diverse backgrounds and developing measures that more completely assess the patterns and consequences of women's experiences with violence are important next steps.

Effective interdisciplinary training: lessons from the University of North Carolina's student health action coalition.

PURPOSE: To identify essential elements of effective interdisciplinary training through an evaluation of the University of North Carolina's Student Health Action Coalition (SHAC), an interdisciplinary service learning program for health science students. METHOD: In 2004, 516 SHAC volunteers were asked to complete a 52-item, online questionnaire. Responses were tallied by volunteer role, and four of the resulting "divisions" (counseling, medical care, interpretation, and community outreach) were analyzed using qualitative and quantitative rating schemas. The four divisions were compared on volunteers' perception of two concepts: (1) the level of interdisciplinary training achieved and (2) the potential for working together, or "community capacity." RESULTS: A total of 283 students accessed the online questionnaire, and 281 provided consent and filled out some portion of the questionnaire, an overall response rate of 54%. A total of 159 of the 281 respondents (57%) reported volunteering most often for one of the four divisions of interest. The respondents in each volunteer division reported a level of interdisciplinary training similar to that division's level of community capacity. The division responsible for counseling services indicated the least interdisciplinary training, earning 4 points on an 8-point rating schema. This group also reported low levels of participation, group skills, information sharing, shared values, sense of community, and social networks. The community outreach division reported the highest level of interdisciplinary training, receiving 8 out of 8 points. They also had high levels of participation, group skills, information sharing, networking, and sense of community. CONCLUSIONS: Effective interdisciplinary training goes hand in hand with five elements identified from the community capacity literature: participation, training in group skills, information sharing, networking, and critical reflection. Program planners and evaluators should pay particular attention to the social environment so as not to reinforce professional stereotypes that interdisciplinary programs are meant to dispel.

Community coalition project directors: what makes them effective leaders?

OBJECTIVE: Effective leaders, both voluntary and paid, facilitate successful coalitions. The attributes that characterize effective project directors, however, are unclear. Our aim was to identify characteristics of effective project directors leading community coalitions. METHODS: The study examined 13 project directors who led eight community-based coalitions established to combat substance abuse. We inductively identified common characteristics and leadership effectiveness of the project directors by abstracting data from detailed ethnographic studies of these coalitions. We assessed the validity of leadership effectiveness by comparing data abstracted from ethnographic studies with two independent ratings. We then employed a cross-case comparison strategy for analyzing patterns among the common characteristics identified and leadership effectiveness. Six characteristics emerged among the project directors studied: status with community (insider vs outsider); shared leadership; bridge building skills; substance abuse expertise; vision; and management style. RESULTS AND CONCLUSIONS: Shared leadership, bridge building skills, and insider status were consistently related to leadership effectiveness. Less support was found for substance abuse expertise or vision. When hiring project directors, coalition leaders may consider assessing whether candidates are "insiders" within the community and demonstrate shared leadership and bridge building skills.

Motivational interviewing to support antiretroviral therapy adherence: the role of quality counseling.

OBJECTIVE: Although research linking motivational interviewing (MI) to behavior change exists, few studies report on MI's quality or explore how it may influence effectiveness. We studied MI quality and adherence to antiretroviral therapy (ART) in the context of a randomized, controlled trial. METHODS: We used a structured instrument to code MI sessions and then correlated ART adherence (measured by electronic bottle cap monitor and pill count data at study exit) with specific counseling behaviors and the proportion of interactions that achieved quality benchmarks. RESULTS: The sample (n = 47) was predominantly male (79%), minority (90%), had a mean age of 40, and averaged 79% adherence at exit. On three of five benchmarks, most MI sessions achieved the targeted quality level: 100% achieved them for MI-consistent statements; 85% for complex reflections; 63% for reflections to questions ratio; 44% for global therapist rating; 19% for using open-ended questions. ART adherence was positively associated with the ratio of reflections to questions (r = .39, p = .02), affirming statements (r = .38, p = .02), and negatively associated with closed-ended questions (r = -.33, p = .04). DISCUSSION: Good quality MI can be conducted within the structure of a controlled trial but was generally not associated with ART adherence. CONCLUSION: Documenting treatment fidelity is critical to judging the efficacy of MI-based interventions. PRACTICE IMPLICATIONS: Regular feedback and close monitoring are needed to maintain MI quality.

Baseline predictors of initiation vs. maintenance of regular mammography use among rural women.

BACKGROUND: Predictors of regular mammography screening over many years have not often been examined prospectively. We used data from baseline (1993-1994), first (1996-1997), and second follow-up (2000) interviews with 336 White and 314 African-American rural women in the North Carolina Breast Cancer Screening Program to evaluate baseline factors predictive of regular mammography use over 7 years. METHODS: We defined regular mammography use as a recent mammogram (past 2 years) at all three interviews. Using binomial and logistic regression models adjusted for age, we examined factors associated with initiation (for women without prior regular use) and maintenance (for women with prior regular use) of mammography. RESULTS: Younger age and White race were predictive of initiation of regular mammography use. Physician recommendation was the strongest predictor of both initiation and maintenance of regular mammography use. Positive mammography attitudes and fewer personal barriers were strongly associated with initiation but not with maintenance. CONCLUSIONS: Increased contact with providers and greater support for screening mammograms by providers could have an important impact on rural women initiating and maintaining regular mammography screening. Special efforts are needed to prompt rural African-American women and those over age 65 to initiate screening, since once they start they are likely to continue.

Relation between intervention exposures, changes in attitudes, and mammography use in the North Carolina Breast Cancer Screening Program.

OBJECTIVE: Many past interventions have been based on the assumption that improving attitudes about mammography can increase mammography use. We studied changes in breast cancer and mammography attitudes over time in mediating the effect of intervention exposures on mammography use in the North Carolina Breast Cancer Screening Program. Data came from interviews with a cohort of 331 black women who said they had heard of mammography at baseline interview. METHODS: We created scores and score changes for mammography (7 items) and breast cancer (11 items) attitudes at baseline (1993-1994) and follow-up interviews (1996-1997). We modeled intervention exposures, attitude changes, and mammography use in linear risk and logistic regression. Intervention exposures were defined for mammography discussion with a project lay health advisor ("LHA advice"), mammography discussion with anyone besides a doctor or nurse, and project awareness. RESULTS: Positive change in mammography attitudes was associated with intervention exposures and mammography use and appeared to account for a large percentage (34-98%) of the effect of mammography discussion variables on increased mammography use. Greatest effect of attitude improvement was found for women without a recent mammogram at baseline and with the least positive baseline attitude scores. CONCLUSION: Using cohort data enabled us to examine the role of attitude change over time on mammography use. Breast cancer screening programs should target women with the most negative mammography attitudes and the least mammography use to start with and concentrate their messages on improving attitudes specific to mammography rather than improving attitudes about breast cancer risk.

Explaining variation in gun control policy advocacy tactics among local organizations.

The goal of this study was to determine how well four organizational characteristics (structure, resources, motivation, or political capacity) explained local organizations' use of a variety of advocacy tactics aimed at promoting state gun control laws. In 1998, 679 local organizations were identified as potentially active on state gun control issues; a questionnaire was mailed to each group's leader. Seventy-nine percent (n = 538) responded to the survey, with 81% (n = 207) of eligible organizations completing questionnaires. The four organizational characteristics explained approximately half the variation in local groups' use of a wide range of advocacy tactics. Organizations with stronger motivation to address the gun control issue and greater political capacity engaged in more diverse gun control advocacy tactics; the authors found organizational structure and resources unlikely to be related. Leaders of advocacy organizations should consider ways to encourage members' motivations on the issue while fostering greater capacity for political action.

How consistently do women report lifetime mammograms at successive interviews?

BACKGROUND: Little data exist on the reliability of self-reported regular mammography use measures. We used data from two successive interviews of 892 women aged 50 to 74 years without a history of abnormal mammograms to investigate how consistently women report their lifetime number of mammograms. METHODS: We added an estimated number of mammograms obtained between interviews to the baseline report to create a revised baseline report for comparison with the follow-up report. We then examined the correlation in paired reports, the level of agreement between paired reports, and factors associated with consistent reporting. RESULTS: Spearman rank correlation between paired reports was 0.73. Agreement between paired reports dropped with increasing lifetime number of mammograms. After adjustment for mammography use, women's characteristics did not appear to be strongly associated with consistent reporting. CONCLUSIONS: Self-reported lifetime number of mammograms is a reasonably consistent measure for younger women or women with less mammography experience, but it is less reliable for women with long mammography histories. In these women, it may be useful to distinguish those who obtain regular screening from those who do not. Assessing reliability as well as validity for other measures of regular mammography use will allow additional measures to be identified.