Nancy E. Schoenberg

Knowledge and information about ADHD: Evidence of cultural differences among African-American and white parents

Attention deficit hyperactivity disorder (ADHD) is considered the most common child psychiatric disorder in the United States of America. Despite the high prevalence (estimated at 3-5%), little is known about the level and source of knowledge about ADHD among those affected by the disease, and about cultural and ethnic variations in knowledge levels and information sources. This represents a serious deficit, because health behavior, including demand for health services, is thought to be strongly influenced by knowledge or beliefs held by individuals and their networks. Furthermore, recent research suggested minority children may be less likely to receive services for ADHD. To examine possible differences in ADHD knowledge and information source, a sample of 486 African-American and white parents of children at high risk for ADHD were surveyed by telephone and subsequently participated in face-to-face interviews addressing their explanatory models of ADHD. Results revealed significant ethnic differences in knowledge and sources of information about ADHD. Fewer African-American parents than white parents indicated that they had ever heard of ADHD (69% compared to 95%, P < 0.001), or that they knew some or a lot about it (36% compared to 70%, P < 0.001) African-American parents were more likely to attribute ADHD to excessive sugar in the diet than whites (59% compared to 30.0%, P < 0.001). Finally, even though the physician was listed as the most preferred information source for both groups, only 17.5% of African-American parents reported they had received information about ADHD from the physician compared to 29% of whites (P < 0.01). African American parents reported less use of and less preference for written informational materials (newspapers, journals, library) than white parents. We conclude that substantially more research should be undertaken to examine the relationship between ethnicity and ADHD knowledge, to inform culturally appropriate education campaigns and to improve access to services for this important treatable child mental health condition.

Barriers to Non–Insulin Dependent Diabetes Mellitus (NIDDM) Self-Care Practices among Older Women

Objectives: Noninsulin dependent diabetes mellitus (NIDDM) constitutes a significant threat to the health and well-being of older women. Appropriate self-care, the cornerstone of glycemic control, is reported to be modest. We aimed to investigate barriers to recommended self-care for NIDDM. Methods:A total of 51 African American and Whitewomen age 65 and older, completed the Diabetes Self-Care Barriers Assessment Scale for Older Adults, ethnomedical protocol, and other instruments during in-depth interviews. Results:African American women were more likely than their White counterparts to indicate financial, pain, and visual barriers to self-care. Both African American and White women expressed a reluctance to check blood sugar and to exercise; however, most indicated that they regularly followed medication recommendations and visited their physician. Discussion:This study extends our knowledge of the existence of self-care barriers by providing a qualitative, in-depth perspective detailing how these barriers often prevent optimal self-care behaviors and, conceivably, successful glycemic control.

Human papillomavirus vaccine: knowledge and attitudes in two Appalachian Kentucky counties

ObjectiveA vaccine against common high-risk types of human papillomavirus (HPV) associated with cervical cancer risk was recently approved. We assessed women’s acceptance of HPV vaccination for themselves and for adolescent girls, in an Appalachian population with cervical cancer incidence and mortality rates among the highest in the United States.MethodsWe conducted a population-based, random-digit telephone survey of over 600 adult women residing in two Appalachian Kentucky counties. The analysis focused on questions of HPV vaccine acceptance, and their relationship to several factors.ResultsThe majority of women indicated an interest in HPV vaccination for themselves (85.2%), but they were less accepting of a vaccine being administrated to girls of ages 10–15 (67.6%). Women who were younger, lower-income and smokers were more likely to support vaccination.ConclusionsAlthough a relatively high percentage of women found the HPV vaccination acceptable for their own use, there was less enthusiasm for supporting vaccination to girls. This finding is of concern since the vaccine is being recommended for adolescent girls and young women, prior to sexual initiation. Educational campaigns will be needed for a successful vaccine implementation.

An Internet-based abstinence reinforcement smoking cessation intervention in rural smokers

The implementation of cigarette smoking abstinence reinforcement programs may be hindered by the time intensive burden placed on patients and treatment providers. The use of remote monitoring and reinforcement of smoking abstinence may enhance the accessibility and acceptability of this intervention, particularly in rural areas where transportation can be unreliable and treatment providers distant. This study determined the effectiveness of an Internet-based abstinence reinforcement intervention in initiating and maintaining smoking abstinence in rural smokers. Sixty-eight smokers were enrolled to evaluate the efficacy of an Internet-based smoking cessation program. During the 6-week intervention period, all participants were asked to record 2 videos of breath carbon monoxide (CO) samples daily. Participants also typed the value of their CO readings into web-based software that provided feedback and reinforcement based on their smoking status. Participants (n=35) in the Abstinence Contingent (AC) group received monetary incentives contingent on recent smoking abstinence (i.e., CO of 4 parts per million or below). Participants (n=33) in the Yoked Control (YC) group received monetary incentives independent of smoking status. Participants in the AC group were significantly more likely than the YC group to post negative CO samples on the study website (OR=4.56; 95% CI=2.18-9.52). Participants assigned to AC were also significantly more likely to achieve some level of continuous abstinence over the 6-week intervention compared to those assigned to YC. These results demonstrate the feasibility and short-term efficacy of delivering reinforcement for smoking abstinence over the Internet to rural populations.

“It’s a toss up between my hearing, my heart, and my hip”: Prioritizing and Accommodating Multiple Morbidities by Vulnerable Older Adults

Nearly three quarters of older adults have multiple morbidities (MM). This study investigated which morbidities older adults prioritize, why, and how they accommodate these conditions, focusing on elders with two or more chronic conditions and low socioeconomic status. Methods. In-depth interviews were conducted with 41 older adults (most being African American women from the southeastern U.S., with two or more chronic illnesses). Results. Many participants reported worrying most about their heart disease, diabetes, and disability/mobility problems, and about their synergistic effects. Many worried that MMs might tip them into a downward spiral. Participants spent the most time and money on arthritis and diabetes. Few received help; when they did, relatives assisted with arthritis/mobility, diabetes, and effects of stroke. Discussion. Enhanced formal care coordination, increased use of technological innovations, and understanding elders’ priorities are necessary to improve self-care/management and quality of life.

Disparities in Underserved White Populations: The Case of Cancer-Related Disparities in Appalachia

There are meaningful cancer-related disparities in the Appalachian region of the U.S. To address these disparities, the Appalachia Community Cancer Network (ACCN), a collaboration of investigators and community partners in five states (Kentucky, Ohio, Pennsylvania, Virginia, and West Virginia), is involved in increasing cancer education and awareness, conducting community-based participatory research (CBPR), and creating mentorship and training opportunities. The primary objective of this paper is to describe cancer-related disparities in the Appalachian region of the U.S. as an example of the disparities experienced by underserved, predominantly white, rural populations, and to describe ACCN activities designed to intervene regarding these disparities. An ACCN overview/history and the diverse activities of ACCN-participating states are presented in an effort to suggest potential useful strategies for working to reduce health-related disparities in underserved white populations. Strengths that have emerged from the ACCN approach (e.g., innovative collaborations, long-standing established networks) and remaining challenges (e.g., difficulties with continually changing communities, scarce resources) are described. Important recommendations that have emerged from the ACCN are also presented, including the value of allowing communities to lead CBPR efforts. Characteristics of the community-based work of the ACCN provide a framework for reducing health-related disparities in Appalachia and in other underserved white and rural populations.

Culture: The missing link in health research

Culture is essential for humans to exist. Yet surprisingly little attention has been paid to identifying how culture works or developing standards to guide the application of this concept in health research. This paper describes a multidisciplinary effort to find consensus on essential elements of a definition of culture to guide researchers in studying how cultural processes influence health and health behaviors. We first highlight the lack of progress made in the health sciences to explain differences between population groups, and then identify 10 key barriers in research impeding progress in more effectively and rapidly realizing equity in health outcomes. Second, we highlight the primarily mono-cultural lens through which health behavior is currently conceptualized, third, we present a consensus definition of culture as an integrating framework, and last, we provide guidelines to more effectively operationalize the concept of culture for health research. We hope this effort will be useful to researchers, reviewers, and funders alike.

Striving for Control: Cognitive, Self-Care, and Faith Strategies Employed by Vulnerable Black and White Older Adults with Multiple Chronic Conditions

The average older adult reaches age 65 with at least two chronic, co-occurring illnesses, or multiple morbidities (MM). We currently lack critical information about the specific strategies older adults use to attempt to control these MM. To increase our understanding of how older adults attempt to manage these MM and retain control of their health, in-depth interviews were conducted with 41 Black and White middle aged and older men and women with MM. We were particularly interested in representing the experience of those groups more vulnerable to adverse health outcomes due to greater disease prevalence and low income. During in-depth interviews, we asked open-ended questions on life and health history and open-ended and semi-structured questions about self-care for multiple morbidities. Participants expressed a strong desire to remain in control of their health; to do so they employed a wide range of strategies including cognitive structuring techniques (being health vigilant, normalizing, resignation/relinquishing control, and social comparison), self-care activities (emphasizing diet, exercise, medication taking, modifying existing activities, going to the doctor), and faith orientations (prayer as a constructive support strategy, gaining strength from God, church as a central part of life). With the exception of faith orientations, there were no race/ethnicity differences in the strategies participants use. Future studies should expand on this knowledge by exploring the contextual, cultural, and psychological backdrop and characteristics that shape the use of these coping strategies.

Community strategies to address cancer disparities in Appalachian Kentucky.

Central Appalachian residents suffer disproportionate health disparities, including an all-cancer mortality rate 17% higher than the general population. During 10 focus groups and 19 key informant interviews, 91 Appalachian residents identified cancer screening challenges and strategies. Challenges included (1) inadequate awareness of screening need, (2) insufficient access to screening, and (3) lack of privacy. Strategies included (1) witnessing/storytelling, (2) capitalizing on family history, (3) improving publicity about screening resources, (4) relying on lay health advisors, and (5) bundling preventive services. These insights shaped our community-based participatory research intervention and offered strategies to others working in Appalachia, rural locales, and other traditionally underserved communities.

Appalachian Residents' Experiences With and Management of Multiple Morbidity

Approximately three fourths of middle-aged and older adults have at least two simultaneously occurring chronic conditions (“multiple morbidity,” or MM), a trend expected to increase dramatically throughout the world. Rural residents, who tend to have fewer personal and health resources, are more likely to experience MM. To improve our understanding of the ways in which vulnerable, rural residents in the United States experience and manage MM, we interviewed 20 rural Appalachian residents with MM. We identified the following themes: (a) MM has multifaceted challenges and is viewed as more than the sum of its parts; (b) numerous challenges exist to optimal MM self-management, particularly in a rural, underresourced context; however, (c) participants described strategic methods of managing MM, including prioritizing certain conditions and management strategies and drawing heavily on assistance from informal and formal sources.