Peggye Dilworth-Anderson

The cultural influence of values, norms, meanings, and perceptions in understanding dementia in ethnic minorities.

Issues of ethnicity and culture, as they relate to Alzheimer disease and related disorders, continue to be under-studied. This article highlights the limited findings regarding ways in which culture can influence caregiving to older persons suffering from dementia across different ethnic groups in the United States. Particular attention is given to how cultural values, norms, and beliefs shape the meanings different ethnic groups assign to dementia. Findings show that family caregiving processes and help seeking are influenced by the meanings family members assign. However, more research is needed in this area. Also, researchers and practitioners could benefit Alzheimer sufferers and their caregivers by incorporating cultural and social information about diverse groups into their future models of research and practice.

Factors Associated With Decisions to Undergo Surgery Among Patients With Newly Diagnosed Early-Stage Lung Cancer

CONTEXT Lung cancer is the leading cause of cancer death in the United States. Surgical resection for stage I or II non-small cell cancer remains the only reliable treatment for cure. Patients who do not undergo surgery have a median survival of less than 1 year. Despite the survival disadvantage, many patients with early-stage disease do not receive surgical care and rates are even lower for black patients. OBJECTIVES To identify potentially modifiable factors regarding surgery in patients newly diagnosed with early-stage lung cancer and to explore why blacks undergo surgery less often than whites. DESIGN, SETTING, AND PATIENTS Prospective cohort study with patients identified by pulmonary, oncology, thoracic surgery, and generalist practices in 5 communities through study referral or computerized tomography review protocol. A total of 437 patients with biopsy-proven or probable early-stage lung cancer were enrolled between December 2005 and December 2008. Before establishment of treatment plans, patients were administered a survey including questions about trust, patient-physician communication, attitudes toward cancer, and functional status. Information about comorbid illnesses was obtained through chart audits. MAIN OUTCOME MEASURE Lung cancer surgery within 4 months of diagnosis. RESULTS A total of 386 patients met full eligibility criteria for lung resection surgery. The median age was 66 years (range, 26-90 years) and 29% of patients were black. The surgical rate was 66% for white patients (n = 179/273) compared with 55% for black patients (n = 62/113; P = .05). Negative perceptions of patient-physician communication manifested by a 5-point decrement on a 25-point communication scale (odds ratio [OR], 0.42; 95% confidence interval [CI], 0.32-0.74) and negative perception of 1-year prognosis postsurgery (OR, 0.27; 95% CI, 0.14-0.50; absolute risk, 34%) were associated with decisions against surgery. Surgical rates for blacks were particularly low when they had 2 or more comorbid illnesses (13% vs 62% for <2 comorbidities; OR, 0.04 [95% CI, 0.01-0.25]; absolute risk, 49%) and when blacks lacked a regular source of care (42% with no regular care vs 57% with regular care; OR, 0.20 [95% CI, 0.10-0.43]; absolute risk, 15%). CONCLUSIONS A decision not to undergo surgery by patients with newly diagnosed lung cancer was independently associated with perceptions of communication and prognosis, older age, multiple comorbidities, and black race. Interventions to optimize surgery should consider these factors.

Reframing Theories for Understanding Race, Ethnicity, and Families

The purpose of this chapter is to discuss what conceptual perspectives and theoretical frameworks explain and predict family phenomena among ethnic minority families. Three major discussions provide the basis to our examination: (1) restructuring assumptions and values to reflect ethnic reality; (2) creating new ways of thinking about ethnic minority families to enhance culturally relevant conceptual frameworks on the family; and (3) reframing existing theoretical perspectives and ideologies to explain and predict family phenomena among these families. Central to each of these discussions is the importance of cultural distinctiveness as it relates to the family.

Social Support in Its Cultural Context

Understanding social support within a cultural context requires knowledge of the culture in which support is given and received. This chapter focuses on cultural factors that shape giving and receiving social support among African-American, Hispanic-American, Asian-American, and Native American families. Although these groups are a part of American society, they also function within distinct cultural boundaries that define and provide them with an identity that is uniquely different from the identity of those who are not a part of their group’s culture. Findings suggest that their history, social position, minority group status, and entrance into American society have played major roles in shaping their cultural definition and identity.

Diagnosis and assessment of Alzheimer's disease in diverse populations

A think tank, “Diagnosis and Assessment of Alzheimer’s Disease in Diverse Populations,” was convened by the Social, Behavioral and Diversity Research Workgroup (see Appendix) of the Alzheimer’s Association in 2007 in Chicago, Illinois. Thirty researchers and clinicians from various disciplines and backgrounds attended the think tank meeting. The goal of the think tank was to discuss how Alzheimer’s disease (AD) affects various communities differently and how its diagnosis and treatment present challenges specific to certain population groups. Other goals of the think tank included identifying ways of collaborating with diverse populations to develop better diagnostic and assessment tools and presenting new findings to inform diagnosing and assessing dementia across racial, ethnic, economic, and social groups. Presentations included topics related to diagnosis and assessment in diverse populations, factors affecting measurement issues in assessment and diagnosis, implications of the clinical assessment in diverse populations, and the role of functional magnetic resonance imaging (fMRI) and behavior in AD assessment and diagnosis. Additional information was presented on the development of the National Institutes of Health initiative called the NIH Toolbox for Assessment of Neurological and Behavioral Function. This think tank is one of several planned activities held by the Social, Behavioral and Diversity Research Workgroup of the Alzheimer’s Association. The goal of the Workgroup is to address and help reduce health disparities in the diagnosis, assessment, treatment, and care of those with AD in diverse populations. The mission is to also expand research that addresses AD in diverse populations.

Caregiver role strain: the contribution of multiple roles and available resources in African-American women.

While the roles of spouse, parent, and employee are normative for middle-aged adults, strain associated with each role may increase when the role of caregiver is added. The objectives of the present study were to determine: (1) what is the relationship between the caregivers other roles (marital, parental, employee), specific combinations of these roles, and role strain; and (2) what is the relationship between available resources (economic, social, and personal) and role strain? The study participants were 148 African-American females who provided care to elderly family members. A model using multiple linear regression was analyzed. Caregivers with higher depressive symptomatology were more strained. However, neither additional multiple roles, nor a combination of roles were significantly related to role strain. African-American caregivers experienced a wide range of caregiver role strain. It would be a disservice to African-American caregivers to operate under the assumption that they provide care with little emotional cost. Continued within group analyses are needed to understand differential outcomes of these caregivers.

The contexts of experiencing emotional distress among family caregivers to elderly African Americans

Using a contextual approach, this study examined predictors of emotional distress among 187 African American caregivers to dependent elders. The results show that almost 20% of the caregivers were emotionally distressed which is indicated by having a t-score of 63 or more on two of the nine sub-scales of the Brief Symptom Inventory (BSI) or by having a t-score of 63 or more on the Global Severity Index (a global measure of the BSI) (Derogatis & Spencer, 1982). The results also show that caregivers who were distressed received less social support, were in poor physical health, and experienced more caregiving role strain than caregivers who were not distressed.

Recruitment and retention strategies for longitudinal African American caregiving research: the Family Caregiving Project.

Objectives: This article provides a detailed discussion, guided by a culturally competent approach, on recruitment and retention strategies used to study caregiving to older dependent elders in African American families. Methods: The study (lasting from 1995 through 2000) included collecting three waves of data, 9 months apart, among 202 caregiving units (containing a maximum of three caregivers per unit). Results: Four key strategies were identified as useful in recruiting and retaining the sample: (a) assigning the same interviewers to communicate with and interview study participants for each wave of data collection, (b) ensuring that all interviewers are knowledgeable of possible family dynamics and social issues within the African American community (e.g., access to health care, income and education issues, and discrimination), (c) providing a mechanism by way of a toll-free number for all participants to contact the project staff at the participant’s convenience, and (d) allowing flexibility in scheduling and rescheduling interviews at the participant’s convenience. Discussion: Researchers need to acquire knowledge and develop skills that will foster culturally competent approaches when studying diverse cultural groups, which involves incorporating the beliefs, values, and attitudes of a cultural group in every phase of the research project, from conceptualization to interpretation of findings. Additionally, a genuine interest in, knowledge of, and respect for the population are necessary to help improve participant involvement in longitudinal research among African American caregivers.

Impact of Caring for Grandchildren on the Health of Grandparents in Taiwan

OBJECTIVES To understand how caring for grandchildren affects the physical and mental health of grandparents in Taiwan. METHOD Grandparents aged 50 and older from 4 waves of the Taiwan Longitudinal Study on Aging (1993-2003, n = 3,711) were divided into 7 categories based on living arrangement and caregiving history. Generalized estimation equations controlling for sociodemographic characteristics and disease status were used to estimate the relationship between caregiving and 4 outcomes: self-rated physical health, mobility limitation, life satisfaction, and depressive symptoms. RESULTS Compared with noncaregivers, long-term multigenerational caregivers were more likely to report better self-rated health, higher life satisfaction, and fewer depressive symptoms. We found some evidence of reduced mobility limitations for both skipped-generation and nonresidential caregivers relative to noncaregivers. The associations in self-rated health and depressive symptoms were more pronounced in long-term caregivers than among those who recently started caregiving. DISCUSSION Improvements in self-rated health and mobility associated with caregiving support our hypothesis that caring for grandchildren can be beneficial for grandparents in Taiwan, especially for long-term multigenerational caregivers. Comparing Taiwanese grandparents across different types of caregiving shows that the associations of grandparent caregiving with health vary by living arrangement and duration. However, these findings may not be causal because caregiving and health outcomes were observed simultaneously in our data.

Spirituality and Healthy Lifestyle Behaviors: Stress Counter-balancing Effects on the Well-being of Older Adults

The goal of this study was to examine stress-ameliorating effects of religiosity, spirituality, and healthy lifestyle behaviors on the stressful relationship of chronic illness and the subjective physical well-being of 221 older adults. We also investigated whether the intervening variables functioned as coping behaviors and orientations or as adaptations in late life. Guided by the stress paradigm, path analysis was used to assess these relationships in a stress suppressor model and a distress deterrent model. No suppressor effects were found; however a number of distress deterrent relationships were detected. Spirituality, physical activities, and healthy diet all contributed to higher subjective physical well-being, as counter-balancing effects, in the distress deterrent model. The findings have implications for future research on the role of spirituality, religiosity and lifestyle behaviors on the well-being of chronically ill older adults. Findings also support the need for studying different dimensions of religiosity and spirituality in an effort to understand coping versus adaptation in behaviors and orientations.