Tracy Schroepfer

Patterns of Informal Support from Family and Church Members among African Americans

This article investigates sociodemographic and family and church factors as correlates of support from family and church members among a representative sample of African Americans. Overall patterns of family and church support indicate that slightly more than half of respondents receive assistance from both family and church networks, one quarter receive assistance from family only, and roughly equal percentages (9%) receive help from either church members only or do not receive help from either group. Multinomial logistic regression analysis was used to examine sociodemo graphic (i.e., age, marital status, gender, region, education, income, and urbanicity) and family and church factors (i.e., family closeness, family contact, parental status, and church participation) as predictors of specific patterns and sources of support. The findings indicated significant age, gender, and marital and parental status differences in patterns of support from family and church. Perceptions of family closeness, degree of interaction with family, and overall levels of participation in church activities were associated with distinctive patterns of assistance.

Cancer Information Sources Used by Patients to Inform and Influence Treatment Decisions

Previous research has indicated that treatment staff often underestimate the informational needs of cancer patients. In this study, the authors determined the total number of information sources obtained and used to influence treatment decisions, and the clinical and demographic factors associated with the use of specific sources of information in cancer patients. Participants were identified by the statewide cancer registry and diagnosed in 2004 with breast, colorectal, lung, or prostate cancer. A self-administered mailed questionnaire elicited cancer treatments, demographics, and information sources used to make treatment decisions. Of those surveyed, 1,784 (66%) participated and responded to all questions regarding information use. Over 69% of study participants reported obtaining information from a source other than the treatment staff. Significant predictors of using additional information sources included younger age, higher income, higher education, complementary and alternative medicine (CAM) use, and reporting shared decision making (all p values <.01). Participants with a college degree were more likely to use the Internet (OR 3.7; 95% CI 1.5–9.0) and scientific research reports (OR 3.3; 95% CI 1.6–6.9) to influence treatment decisions compared with those without a high school degree. Support group use to influence treatment decisions was not associated with socioeconomic variables but did vary by cancer type and CAM use. The sources of information study participants obtained and used to influence treatment decisions varied strongly by socioeconomic and demographic variables. These findings provide a deeper understanding of the information needs of cancer patients and have implications for dissemination strategies that can minimize disparities in access to cancer information.

An International Consensus Definition of the Wish to Hasten Death and Its Related Factors

Background The desire for hastened death or wish to hasten death (WTHD) that is experienced by some patients with advanced illness is a complex phenomenon for which no widely accepted definition exists. This lack of a common conceptualization hinders understanding and cooperation between clinicians and researchers. The aim of this study was to develop an internationally agreed definition of the WTHD. Methods Following an exhaustive literature review, a modified nominal group process and an international, modified Delphi process were carried out. The nominal group served to produce a preliminary definition that was then subjected to a Delphi process in which 24 experts from 19 institutions from Europe, Canada and the USA participated. Delphi responses and comments were analysed using a pre-established strategy. Findings All 24 experts completed the three rounds of the Delphi process, and all the proposed statements achieved at least 79% agreement. Key concepts in the final definition include the WTHD as a reaction to suffering, the fact that such a wish is not always expressed spontaneously, and the need to distinguish the WTHD from the acceptance of impending death or from a wish to die naturally, although preferably soon. The proposed definition also makes reference to possible factors related to the WTHD. Conclusions This international consensus definition of the WTHD should make it easier for clinicians and researchers to share their knowledge. This would foster an improved understanding of the phenomenon and help in developing strategies for early therapeutic intervention.

Race/Ethnicity and Marital Status in IADL Caregiver Networks

Racial/ethnic variations in instrumental activities of daily living (IADL) caregiver network composition were examined in a nationally representative sample of elders, using task specificity and hierarchical compensatory theoretical perspectives. Logistic regressions tested network differences among White, Black, and Mexican American elders (n = 531 married, n = 800 unmarried). Findings concerning racial/ethnic differences were partially dependent on marital status, differentiation of spouses from other informal helpers among married elders, and which racial/ethnic groups were compared. Networks including formal caregivers did not differentiate married or unmarried Black from White elders but were more common among unmarried Mexican American elders than for comparable White and Black elders. Married Black elders with solely informal networks were more likely than comparable White elders to have informal helpers other than the spouse. Racial/ethnic similarities and differences in caregiver networks are discussed relative to their sociocultural context, including marital status, elder’s and spouse’s health, and financial resources

Seeking to Bridge Two Cultures: The Wisconsin Hmong Cancer Experience

Compared to white non-Hispanics, Hmong report higher incidence rates of certain cancers and present at an advanced stage. Using a community-based participatory research approach, Hmong leaders partnered with academic researchers to assess the Wisconsin Hmong population’s readiness to address cancer. Using the Colorado Tri-Ethnic Center’s Community Readiness Assessment, face-to-face interviews were conducted with eight Hmong leaders. The stage of readiness to address cancer was “Vague Awareness”. Six thematic areas provided insight into this stage and recommendations for effective intervention. Results emphasize the need for a bridge between Hmong and mainstream communities to provide basic, culturally appropriate education on the US healthcare system and cancer.

Does Gender Moderate Factors Associated With Whether Spouses Are the Sole Providers of IADL Care to Their Partners

The authors explored whether gender moderated the influence of other factors on solo spousal caregiving. The subsample (n = 452) from the Asset and Health Dynamics Among the Oldest Old study included elderly care recipients (CRs) receiving assistance with instrumental activities of daily living (IADLs) and their spouses. Logistic regression was used to model the likelihood of solo spousal IADL care. Gender moderation was tested by product terms between CRs’ gender and measures of partners’ health, potential helpers, and sociodemographic characteristics. As numbers of CRs’ IADLs and couples’ proximate daughters increased, wives less often received care solely from their husbands, but husbands’ receipt of care from their wives was unaffected. Age differences between spouses and CRs affected solo spousal caregiving to wives and husbands in opposite ways. Regardless of gender, CRs’ numbers of limitations in activities of daily living and spouses with limitations in IADLs or activities of daily living reduced the likelihood of solo spouse care. Identifying circumstances influencing solo spouse caregiving differently among couples with frail wives and husbands facilitates gender-sensitive services.

When Do Couples Expand Their ADL Caregiver Network Beyond the Marital Dyad

Abstract Composition of caregiver networks (spouse only vs. others) for assistance with personal care limitations (ADLs) was examined in the AHEAD nationally representative sample of 215 elderly couples, using logistic regression. Findings showed network expansion beyond the spouse was influenced by a poor fit between solo spousal caregivers and caregiving tasks: Expanded networks were more likely when help recipients had numerous health problems (p< .01) and ADL limitations (p= .063), and when spouses had any ADL limitations (p< .01). Expanded networks were also likely when couples included the wife as help recipient (p< .05), were Black (p= .075), and were in lengthy marriages (p< .05). Implications for theory, research, and family policy and practice are discussed.

Terminally Ill African American Elders’ Access to and Use of Hospice Care

The underuse of hospice care by terminally ill African American elders suggests they are suffering when hospice care could offer quality end of life care. Guided by the Behavioral Model for Vulnerable Populations, this study sought understanding of structural barriers faced when seeking access to hospice care and reasons for using it when access is possible. Data was collected through interviews with 28 African American hospice patients. Themes from directed content analysis provide insights into strategies used to overcome access barriers posed by income, health insurance and administrative procedure, as well as the role religion, family, information and health beliefs played in using it. Distributing educational materials and addressing spiritual/religious concerns in choosing hospice care are key in promoting African Americans’ use of hospice care.

The Prevalence of Older Couples With ADL Limitations and Factors Associated With ADL Help Receipt

Using the Andersen-Newman model, we investigated the prevalence of activities of daily living (ADLs) limitations in married couples, and couple characteristics associated with ADL help-receipt. In this sample of 3,235 couples age 65+ in the 2004 Health and Retirement Study, 74.3%, 22.1%, and 3.6% were couples in which neither partner, one partner, or both partners had limitations, respectively. Logistic regression results indicate that help-receipt was associated with certain health needs in the couple, but not with their predisposing characteristics or enabling resources. Social workers could target couples most in need of assistance by assessing both partners’ health problems.

Community Readiness Assessment: The Scoring Process Revisited

The Community Readiness Model is an innovative and widely embraced approach to determining a communitys stage of readiness to address a particular community issue and match that stage with an appropriate intervention. The current study used this approach in five communities experiencing cancer health disparities. In each community, leaders were interviewed and their qualitative data scored to determine the communitys stage of readiness. Two methods of triangulation, investigator and interdisciplinary, were used to increase the scoring processs rigor. In order to gain a deeper understanding of the consensus portion of the scoring process, these meetings were content analyzed. The results have important implications for scoring team composition, provide insight into consensus reaching strategies, and offer recommendations for addressing potential challenges.