Original Research: Can a Palliative Care Lay Health Advisor-Nurse Partnership Improve Health Equity for Latinos with Cancer?

PURPOSE: A palliative care infrastructure is lacking for Latinos with life-threatening illness, especially in rural regions of the United States. The purpose of this study was to develop and evaluate a community-based palliative care lay health advisor (LHA) intervention for rural-dwelling Latino adults with cancer. METHODS: An exploratory mixed-methods participatory action research design was carried out by an interprofessional research team that included community and academic members. Fifteen Latino community leaders completed a 10-hour palliative care training program and then served as palliative care LHAs. Although 45 Latinos with cancer initially agreed to participate, four withdrew or died and six were not reachable by the LHAs, for a final total of 35 patient participants.The trained palliative care LHAs delivered information on home symptom management and advance care planning to assigned participants. Palliative care nurses led the training and were available to the LHAs for consultation throughout the study. The LHAs made an average of three telephone calls to each participant. The Edmonton Symptom Assessment System-Revised (ESAS-r) and the four-item Advance Care Planning Engagement Survey (ACPES-4) were administered pre- and postintervention to determine the intervention's effectiveness. Encounter forms were transcribed, coded, and analyzed using case comparison. RESULTS: The major finding was that significant improvements were shown for all four items of the ACPES-4 among both the LHAs (posttraining) and the participants (postintervention). Information on advance care planning was shared with 74.3% of the 35 participants. Participants showed clinical improvement in physical symptom scores and clinical deterioration in emotional symptom scores following the intervention, although these changes did not reach statistical significance. The advisors noted that participants were anxious about how to explain cancer to children, the uncertainty of their prognosis, and medical expenses. This sample was younger than those of other cancer studies; 51.4% were under age 50 and 73.1% had at least one child in the home. CONCLUSIONS: A community-based palliative care LHA-nurse partnership was shown to be a feasible way to engage in conversations and deliver information about advance care planning to rural-dwelling Latino adults with cancer. The positive results led to the regional cancer center's decision to select "cultural care" as its 2022 goal for maintaining its accreditation with the Commission on Cancer.

Four Kinds of Hard: An Understanding of Cancer and Death among Latino Community Leaders.

Early integration of palliative care after a diagnosis of cancer improves outcomes, yet such care for Latino populations is lacking in rural regions of the United States. We used a participatory action research design with Latino community leaders from emerging immigrant communities in North Carolina to explore sociocultural perspectives on cancer and death. Thematic analysis was conceptualized as Four Kinds of Hard represented by four themes: Receiving an Eviction Notice, Getting in the Good Book, Talking is (Sometimes) Taboo, and Seeing Their Pain Makes us Suffer. These themes captured fears of deportation, coping with cancer through faithfulness, ambivalence about advance care planning, and a desire to spare families from suffering. Findings suggest strategies to improve conversations about end-of-life wishes when facing advanced illness and death. This study demonstrates the importance of training Latino community leaders to improve palliative care and bridge service gaps for Latino families living in emerging rural communities.

Responding to health and social needs of aging Latinos in new-growth communities: a qualitative study.

BACKGROUND: The development of new-growth communities of Latino immigrants in southern states has challenged the traditional health and social service infrastructure. An interprofessional team of service providers, Latino leaders, and university faculty partnered to establish linkages with the Latino community and providers serving aging adults and to explore the health and social needs of aging Latinos residing in a rural region. METHODS: A qualitative descriptive study was conducted through a community-university partnership, the Aging Latino Research Team (ALRT). Data were generated from nine focus groups and 15 key informant interviews with Latino and non-Latino community members and service providers in rural, eastern North Carolina (ENC). RESULTS: Thematic analysis was used to identify common patterns and form recommendations for future research and programs. Themes common to Latino participants were: "We are put off to one side"; "If I can't work, I can't survive"; and "Without documents, you are no one." Themes common to non-Latino participants were: "Older Latinos are not well served"; "Older Latinos are invisible"; "Older Latinos are undocumented and afraid"; and "Older Latinos are wandering the highway". CONCLUSION: A major finding of this research was the extent to which discrepancies in perceptions between Latino participants and non-Latino participants exist. These discrepancies revealed ethnic stereotyping and cultural insensitivity as major barriers in access to care.

Differences in breast self-examination techniques between Caucasian and African American elderly women.

BACKGROUND: The efficacy of breast self-examination (BSE) is controversial, recommendations to women are mixed, and reported differences by race in BSE are contrary to what is expected. We attribute this, in part, to measurement error in studies assessing the effectiveness of BSE. We assess differences by race in self-reported BSE while controlling selected sociodemographic indicators, BSE training, embarrassment, and perceived competence. METHODS: Data are from personal interviews with 1011 women ages 50 and older, with approximately equal numbers of African Americans and Caucasians reporting that they examine their own breasts. RESULTS: African American women are more likely than Caucasians to report examining their breasts visually, whereas Caucasian women are more likely than African Americans to report tactile examination of breast tissue, consistent with recommended BSE procedure. CONCLUSIONS: BSE measures must be multidimensional to detect differences by race to guide interventions promoting self-detection of breast lumps, early presentation, and mortality reduction.

Impacting cultural attitudes in African-American women to decrease breast cancer mortality.

BACKGROUND: Over the past decade breast cancer mortality has decreased 1% or 2% per year in white women, but not in African-American women. The resulting "mortality gap" is a serious national problem, and it must be a high priority to understand the reasons for it and develop solutions. METHODS: The literature is reviewed to elucidate reasons for the mortality gap and the current status of possible solutions to the problem. In addition, new results of large population-based surveys in North Carolina are presented that may shed light on the problem. RESULTS: The most important reason for the mortality gap is that African-American women tend to be diagnosed with more advanced stage breast cancer than white women. This is due both to lower utilization of screening mammography and to delayed presentation for women with palpable lumps. This is related both to socioeconomic factors that influence access to medical care and to cultural factors that tend to discourage women from seeking care early for breast problems. CONCLUSIONS: Understanding the cultural beliefs that influence patient behavior will greatly aid physicians in caring for their African-American patients, and ultimately may help reduce the racial gap in breast cancer mortality.

Beliefs about and responses to childhood ear infections: a study of parents in eastern North Carolina.

Middle ear infection, also known as otitis media (OM), is a major public health problem among American children. Although clinical and epidemiological aspects of OM have been intensely studied, cultural factors that may be contributing to the problem of OM have received less attention. This article presents findings from an ethnographic study exploring beliefs about OM and responses to the illness among parents from eastern North Carolina. In-depth interviews were conducted with a convenience sample of nine mothers in order to learn more about parents' explanatory models of OM, the source of their beliefs, and how they respond to the illness. A survey instrument based on their statements was then constructed and administered to a convenience sample of 79 parents. The survey consisted of belief statements about OM, as well as questions pertaining to sources of beliefs, the home management of the disease, and the effects of the illness on families. A cultural consensus analysis of responses to belief statements indicates that parents shared a common model of OM. Beliefs about risks, symptoms, and causes of OM were similar to the current biomedical model of the illness, but their divergent beliefs about the diagnosis, prognosis and treatment of OM could lead to unnecessary use of health care services. Clinicians, family, and friends were reported to be important sources of information about OM. Parents also reported using similar home management strategies and care seeking behaviors to minimize the impact of the illness on their children and families. While these findings need to be replicated in studies with larger, more representative samples, this study suggest that ethnographic approaches may provide new insights into the cultural dimension of the problem of OM.

Increasing use of mammography among older, rural African American women: results from a community trial.

OBJECTIVES: A community trial was undertaken to evaluate the effectiveness of the North Carolina Breast Cancer Screening Program, a lay health advisor network intervention intended to increase screening among rural African American women 50 years and older. METHODS: A stratified random sample of 801 African American women completed baseline (1993-1994) and follow-up (1996-1997) surveys. The primary outcome was self-reported mammography use in the previous 2 years. RESULTS: The intervention was associated with an overall 6 percentage point increase (95% confidence interval [CI] = -1, 14) in community-wide mammography use. Low-income women in intervention counties showed an 11 percentage point increase (95% CI = 2, 21) in use above that exhibited by low-income women in comparison counties. Adjustment for potentially confounding characteristics did not change the results. CONCLUSIONS: A lay health advisor intervention appears to be an effective public health approach to increasing use of screening mammography among low-income, rural populations.

Religious beliefs and breast cancer screening.

BACKGROUND: The mechanisms underlying a reported tendency for women who hold strong religious beliefs to seek medical help at more advanced stages of breast cancer are unknown. This study investigates further the effect of religious beliefs with other variables on breast cancer screening and the intended presentation of a self-discovered breast lump. METHODS: The study included 682 eastern North Carolina women aged 40 and over who were interviewed in their homes about religious and other beliefs about breast cancer, screening, and intended actions with a self-discovered breast lump. RESULTS: Principal components factor analysis results suggested that a majority of women believe that God works through doctors to cure breast cancer. We labeled this dimension "religious intervention with treatment." A minority believed that medical treatment was unnecessary because only God could cure breast cancer. We labeled this dimension "religious intervention in place of treatment." The first dimension correlated with self-reported mammography but not clinical breast examination or women's intention to delay presentation of a self-discovered breast lump. The second dimension, significantly more common in African American women who were less educated and older, correlated strongly with the intention to delay presentation of a self-discovered breast lump. CONCLUSIONS: Belief in "religious intervention in place of treatment" may help to explain why African American women delay presentation of palpable breast lumps, contributing to advanced-stage cancer diagnosis. We suggest that clinicians and clergy work together within the context of religious beliefs to enhance early detection and survival from breast cancer.