Ellen Lopez

Current unmet needs of cancer survivors: Analysis of open-ended responses to the American Cancer Society Study of Cancer Survivors II

Cancer survivors may continue to experience psychosocial and physical needs related to their cancer experience for many years after treatment. The specification of these needs across cancer types and by survivor characteristics may lead to better prevention approaches and clinical responses. Mixed methods were used to examine responses to an open‐ended question about current unmet needs from a survey of 2‐, 5‐, and 10‐year cancer survivors.

Screening Mammography: A Cross-Sectional Study to Compare Characteristics of Women Aged 40 and Older From the Deep South Who Are Current, Overdue, and Never Screeners

PURPOSE We sought to identify unique barriers and facilitators to breast cancer screening participation among women aged 40 and older from Mississippi who were categorized as current, overdue, and never screeners. METHODS Cross-sectional data from a 2003 population-based survey with 987 women aged 40 and older were analyzed. Chi-square analysis and multinomial logistic regression examined how factors organized under the guidance of the Model of Health Services Utilization were associated with mammography screening status. RESULTS Nearly one in four women was overdue or had never had a mammogram. Enabling factors, including poor access to care (no annual checkups, no health insurance) and to health information, lack of social support for screening, and competing needs, were significantly associated with being both overdue and never screeners. Pertaining to factors unique to each screening group, women were more likely to be overdue when they had no usual source of health care and believed that treatment was worse than the disease. In turn, women were more likely to be never screeners when they were African American, lacked a provider recommendation for screening, and held the fatalistic view that not much could be done to prevent breast cancer. CONCLUSION Similar and unique factors impact utilization of mammography screening services among women. Those factors could inform efforts to increase screening rates.

Traditional living and cultural ways as protective factors against suicide: perceptions of Alaska Native university students

Introduction Native peoples living in Alaska have one of the highest rates of suicide in the world. This represents a significant health disparity for indigenous populations living in Alaska. This research was part of a larger study that explored qualitatively the perceptions of Alaska Native university students from rural communities regarding suicide. This analysis explored the resilience that arose from participants’ experiences of traditional ways, including subsistence activities. Previous research has indicated the importance of traditional ways in preventing suicide and strengthening communities. Method Semi-structured interviews were conducted with 25 university students who had migrated to Fairbanks, Alaska, from rural Alaskan communities. An interview protocol was developed in collaboration with cultural and community advisors. Interviews were audio-recorded and transcribed. Participants were asked specific questions concerning the strengthening of traditional practices towards the prevention of suicide. Transcripts were analysed using the techniques of grounded theory. Findings Participants identified several resilience factors against suicide, including traditional practices and subsistence activities, meaningful community involvement and an active lifestyle. Traditional practices and subsistence activities were perceived to create the context for important relationships, promote healthy living to prevent suicide, contrast with current challenges and transmit important cultural values. Participants considered the strengthening of these traditional ways as important in suicide prevention efforts. However, subsistence and traditional practices were viewed as a diminishing aspect of daily living in rural Alaska. Conclusions Many college students from rural Alaska have been affected by suicide but are strong enough to cope with such tragic events. Subsistence living and traditional practices were perceived as important social and cultural processes with meaningful lifelong benefits for participants. Future research should continue to explore the ways in which traditional practices can contribute towards suicide prevention, as well as the far-reaching benefits of subsistence living.

Forging a new legacy of trust in research with Alaska Native college students using CBPR

Objectives. Disparities in the rates of matriculation and graduation are of concern to Alaska Native (AN) students and the universities committed to their academic success. Efforts to reduce attrition require a keen understanding of the factors that impact quality of life (QOL) at college. Yet, a long-standing legacy of mistrust towards research poses challenges to conducting inquiry among AN students. We introduced a partnership between the University of Alaska Fairbanks Rural Student Services (RSS) and the Center for Alaska Native Health Research (CANHR) within which we conducted the “What makes life good?” study aimed towards developing a QOL measure for AN students. Equally important was building a legacy of research trust among AN partners. Study design. We describe Phase I of a 2-phase study that employed a sequential mixed methods approach. Discussed are facilitators, challenges and lessons learned while striving to adhere to the principles of community-based participatory research (CBPR). Methods. Phase I included formative focus groups and QOL measurement development. The research involved the interplay among activities that were co-developed with the goal of enhancing trust and research capacity. Emphasis was placed on ensuring that data collection and analyses were student driven. Conclusions. All partners resided at the same university. However, trust and collaboration could not be assumed. Working within a collaborative framework, our partnership achieved the aim of developing a culturally informed QOL measure, while also creating an empowering experience for all partners who became co-investigators in a process that might normally be regarded with mistrust.

''What makes life good?'' Developing a culturally grounded quality of life measure for Alaska Native college students

Background Alaska Native (AN) college students experience higher attrition rates than their non-Native peers. Understanding the factors that contribute to quality of life (“what makes life good”) for AN students will help inform supportive programs that are congruent with their culture and college life experiences. Objectives Co-develop a conceptual model and a measure of quality of life (QOL) that reflects the experiences of AN college students. Methods Six focus groups were conducted with 26 AN college students. Within a community–academic partnership, interactive data collection activities, co-analysis workgroup sessions and an interactive findings forum ensured a participant-driven research process. Findings Students identified and operationally defined eight QOL domains (values, culture and traditions, spirituality, relationships, basic needs, health, learning and leisure). The metaphor of a tree visually illustrates how the domains values, culture and traditions and spirituality form the roots to the other domains that appear to branch out as students navigate the dual worldviews of Native and Western ways of living. Conclusions The eight QOL domains and their items identified during focus groups were integrated into a visual model and an objective QOL measure. The hope is to provide a useful tool for developing and evaluating university-based programs and services aimed toward promoting a positive QOL and academic success for AN students.

A Process Evaluation of the Alaska Native Colorectal Cancer Family Outreach Program

This article presents the results of a process evaluation of the Alaska Native (AN) Colorectal Cancer (CRC) Family Outreach Program, which encourages CRC screening among AN first-degree relatives (i.e., parents, siblings, adult children; hereafter referred to as relatives) of CRC patients. Among AN people incidence and death rates from CRC are the highest of any ethnic/racial group in the United States. Relatives of CRC patients are at increased risk; however, CRC can be prevented and detected early through screening. The evaluation included key informant interviews (August to November 2012) with AN and non-AN stakeholders and program document review. Five key process evaluation components were identified: program formation, evolution, outreach responses, strengths, and barriers and challenges. Key themes included an incremental approach that led to a fully formed program and the need for dedicated, culturally competent patient navigation. Challenges included differing relatives’ responses to screening outreach, health system data access and coordination, and the program impact of reliance on grant funding. This program evaluation indicated a need for more research into motivating patient screening behaviors, electronic medical records systems quality improvement projects, improved data-sharing protocols, and program sustainability planning to continue the dedicated efforts to promote screening in this increased risk population.