Adapting an Early Palliative Care Intervention to Family Caregivers of Persons With Advanced Cancer in the Rural Deep South: A Qualitative Formative Evaluation.

CONTEXT: There is a scarcity of early palliative care interventions to support family caregivers of persons with advanced cancer living in the rural Southern U.S. OBJECTIVE: The objective of this study was to adapt the content, format, and delivery of a six session, palliative care, telehealth intervention with monthly follow-up for rural family caregivers to enhance their own self-care and caregiving skills. METHODS: Qualitative formative evaluation consisting of one-on-one, semistructured interviews with rural-dwelling persons with metastatic cancer (n = 18), their primary family caregiver (n = 20), and lay patient navigators (n = 26) were conducted to elicit feedback on a family caregiver intervention outline based on published evidence-based interventions. Transcribed interviews were analyzed using a thematic analysis approach. Coinvestigators reviewed and refined preliminary themes. RESULTS: Participants recommended that intervention topical content be flexible and has an adaptable format based on continuous needs assessment. Sessions should be 20 minutes long at minimum, and additional sessions should be offered if requested. Faith and spirituality is essential to address but should not be an overarching intervention theme. Content needs to be communicated in simple language. Intervention delivery via telephone is acceptable, but face-to-face contact is desired to establish relationships. Other Internet-based technologies (e.g., video-conferencing) could be helpful, but many rural dwellers may not be technology savvy or have Internet access. Most lay navigators believed they could lead the intervention with additional training, protocols for professional referral, and supervision by specialty-trained palliative care clinicians. CONCLUSIONS: A potentially scalable palliative care intervention is being adapted for family caregivers of rural-dwelling persons with advanced cancer and will undergo piloting in a small-scale randomized controlled trial.

Patient Navigation As a Model to Increase Participation of African Americans in Cancer Clinical Trials.

PURPOSE: Less than 10% of patients enrolled in clinical trials are minorities. The patient navigation model has been used to improve access to medical care but has not been evaluated as a tool to increase the participation of minorities in clinical trials. The Increasing Minority Participation in Clinical Trials project used patient navigators (PNs) to enhance the recruitment of African Americans for and their retention in therapeutic cancer clinical trials in a National Cancer Institute-designated comprehensive cancer center. METHODS: Lay individuals were hired and trained to serve as PNs for clinical trials. African American patients potentially eligible for clinical trials were identified through chart review or referrals by clinic nurses, physicians, and social workers. PNs provided two levels of services: education about clinical trials and tailored support for patients who enrolled in clinical trials. RESULTS: Between 2007 and 2014, 424 African American patients with cancer were referred to the Increasing Minority Participation in Clinical Trials project. Of those eligible for a clinical trial (N = 378), 304 (80.4%) enrolled in a trial and 272 (72%) consented to receive patient navigation support. Of those receiving patient navigation support, 74.5% completed the trial, compared with 37.5% of those not receiving patient navigation support. The difference in retention rates between the two groups was statistically significant (P < .001). Participation of African Americans in therapeutic cancer clinical trials increased from 9% to 16%. CONCLUSION: Patient navigation for clinical trials successfully retained African Americans in therapeutic trials compared with non-patient navigation trial participation. The model holds promise as a strategy to reduce disparities in cancer clinical trial participation. Future studies should evaluate it with racial/ethnic minorities across cancer centers.

Dealing with the financial burden of cancer: perspectives of older breast cancer survivors.

PURPOSE: Financial burden among cancer survivors is often overlooked in survivorship care planning. Cancer survivors with limited incomes may be particularly affected. Yet, little data are available to address financial issues among them. Eliciting the survivors' perspectives on how to deal with this financial burden is a first crucial step to identifying the means to provide this supportive care. METHODS: In this pilot study, three nominal group technique (NGT) sessions were conducted with a convenience sample of 23 older breast cancer survivors (age 52 to 83) recruited from a county safety net hospital and a Comprehensive Cancer Center. One single NGT question was posed in these sessions, namely "What could help women deal with the financial burden that cancer brings to them and their families?" Survivors responded in an iterative fashion and then ranked the most relevant responses. RESULTS: The most relevant responses addressed the (1) need for affordable insurance; (2) need to have prompt information on treatment costs patients will face, insurance coverage, and agencies or programs that provide needed products and services; and (3) need to access social workers, navigators, support groups, or others knowledgeable about available resources. Survivors also suggested that physicians become aware of cancer costs and financial issues faced by patients and consider costs in their treatment plans. CONCLUSIONS: Older survivors face financial challenges for which there are few available resources. They suggested several avenues to address cancer-related financial issues that may be considered in developing supportive interventions.

Spiritually based intervention to increase colorectal cancer screening among African Americans: screening and theory-based outcomes from a randomized trial.

Colorectal cancer screening has clear benefits in terms of mortality reduction; however, it is still underutilized and especially among medically underserved populations, including African Americans, who also suffer a disproportionate colorectal cancer burden. This study consisted of a theory-driven (health belief model) spiritually based intervention aimed at increasing screening among African Americans through a community health advisor-led educational series in 16 churches. Using a randomized design, churches were assigned to receive either the spiritually based intervention or a nonspiritual comparison, which was the same in every way except that it did not contain spiritual/religious content and themes. Trained and certified peer community health advisors in each church led a series of two group educational sessions on colorectal cancer and screening. Study enrollees completed a baseline, 1-month, and 12-month follow-up survey at their churches. The interventions had significant pre-post impact on awareness of all four screening modalities, and self-report receipt of fecal occult blood test, flexible sigmoidoscopy, and colonoscopy. There were no significant study group differences in study outcomes, with the exception of fecal occult blood test utilization, whereas those in the nonspiritual intervention reported significantly greater pre-post change. Both of these community-engaged, theory-driven, culturally relevant approaches to increasing colorectal cancer awareness and screening appeared to have an impact on study outcomes. Although adding spiritual/religious themes to the intervention was appealing to the audience, it may not result in increased intervention efficacy.

Spiritually based intervention to increase colorectal cancer awareness among african americans: intermediate outcomes from a randomized trial.

Colorectal cancer screening, while effective for reducing mortality, remains underutilized particularly among underserved populations such as African Americans. The present study evaluated a spiritually based approach to increasing Health Belief Model-based pre-screening outcomes in a Community Health Advisor-led intervention conducted in African American churches. Sixteen urban churches were randomized to receive either the spiritually based intervention or a nonspiritual comparison of the same structure and core colorectal cancer content. Trained Community Health Advisors led a series of two educational sessions on colorectal cancer early detection. The educational sessions were delivered over a 1-month period. Participants (N = 316) completed a baseline survey at enrollment and a follow-up survey one month after the first session. Both interventions resulted in significant pre/post increases in knowledge, perceived benefits of screening, and decreases in perceived barriers to screening. Among women, the spiritually based intervention resulted in significantly greater increases in perceived benefits of screening relative to the nonspiritual comparison. This finding was marginal in the sample as a whole. In addition, perceived benefits to screening were associated with behavioral intention for screening. It is concluded that in this population, the spiritually based was generally as effective as the nonspiritual (secular) communication.

Tailoring cancer education and support programs for low-income, primarily African American cancer survivors.

PURPOSE/OBJECTIVES: to identify the information and stress-management topics of most interest to low-income, predominantly African American cancer survivors. RESEARCH APPROACH: descriptive, cross sectional. SETTING: outpatient oncology clinic in a public hospital in Birmingham, Alabama. PARTICIPANTS: 25 patients with cancer; 12 were men, 22 were African Americans, and 16 had a 12th-grade education or less. METHODOLOGIC APPROACH: patients ranked potential topics to be included in an educational curriculum. MAIN RESEARCH VARIABLES: quantitative rankings of information and stress-management priorities. FINDINGS: learning about cancer, understanding cancer treatments, relieving cancer pain, and keeping well in mind and body were the most highly ranked topics among those offered within the American Cancer Society's I Can Cope curriculum, which also included supportive topics such as mobilizing social support. The preferred stress-management topics were humor therapy, music therapy, meditation, and relaxation; lower-ranked topics included pet therapy and art as therapy. CONCLUSIONS: cancer survivors appear most interested in topics specific to their illness and treatment versus supportive topics. Stress management also received high rankings. INTERPRETATION: nurses have a key role in providing patient education and support. Tailoring education programs may better target specific needs and improve the quality of cancer care of underserved patients.