American Indian Cancer Survivors Research Articles

Health Behavior Change Intervention Preferences Expressed by American Indian Cancer Survivors From a Southwest Tribal Community: Semistructured Interview Study.

While many factors, including social determinants of health, affect cancer mortality, one modifiable risk factor that may contribute to cancer disparities is obesity. The prevalence of obesity in the American Indian/Alaska Native population is 48.1% per the Centers for Disease Control and Prevention. The overall cancer mortality for the American Indian/Alaska Native population is 18% higher than the White population as reported by the American Cancer Society. Interventions tailored to American Indian/Alaska Native communities that promote healthy lifestyle behaviors after cancer diagnosis and prior to cancer surgery (prehab) might improve cancer outcomes for this population. The aim of the study is to characterize the lifestyle behaviors of San Carlos Apache cancer survivors and identify preferences for the adaption of a prehab intervention. Semistructured interviews and validated questionnaires were completed with San Carlos Apache cancer survivors (N=4), exploring their viewpoints on healthy lifestyle and cancer risk and preferences for program development. A thematic content analysis was conducted. Participants had an average BMI of 31 kg/m2 and walked 53 minutes daily. The majority of participants reported a high willingness to change eating habits (n=3, 75%). All 4 reported willingness to participate in a diet and exercise program. Important themes and subthemes were identified: (1) cancer is perceived as a serious health condition in the community (N=4, 100%); (2) environmental exposures are perceived as cancer-causing threats (n=3, 75%); (3) healthy diet, exercise, and avoiding harmful substances are perceived as mitigating cancer risk (n=3, 75%); (4) barriers to healthy habits include distance to affordable groceries (n=3, 75%) and lack of transportation (n=2, 50%); (5) there is high interest in a prehab program geared toward patients with cancer (N=4, 100%); and (6) standard monitoring practiced in published prehab programs showed early acceptability with participants (N=4, 100%). Collaboration with tribal partners provided important insight that can help inform the adaptation of a culturally appropriate prehab program for San Carlos Apache patients diagnosed with cancer.

Great Plains American Indians' Perspectives on Patient and Family Needs Throughout the Cancer Journey.

To explore the perspectives on patient and family needs during cancer treatment and survivorship of American Indian (AI) cancer survivors, caregivers, Tribal leaders, and healers. 36 AI cancer survivors from three reservations in the Great Plains region. A community-based participatory research design was employed. Postcolonial Indigenous research techniques of talking circles and semistructured interviews were used to gather qualitative data. Data were analyzed using content analysis to identify themes. The overarching theme of accompaniment was identified. The following themes were intertwined with this theme: (a) the need for home health care, with the subthemes of family support and symptom management; and (b) patient and family education. To provide high-quality cancer care to AI patients in their home communities, oncology clinicians should collaborate with local care providers, relevant organizations, and the Indian Health Service to identify and develop essential services. Future efforts must emphasize culturally responsive interventions in which Tribal community health workers serve as navigators to accompany patients and families during treatment and in survivorship.

A window into pain: American Indian cancer survivors’ drawings

In order to explore the cultural constructs of pain, a series of focus groups were held among adult American Indian (AI) cancer survivors and their caregivers in the Southwest USA. Thirteen focus groups held at four sites (reservation, urban setting, hospital and clinic) elicited information on the barriers to cancer pain management. In response to facilitator questions about cancer pain and existing measurement scales, participants drew pictures to better explain their pain type (i.e., "pounding"), intensity (i.e., "spider web-like"), and other more abstract aspects of their pain episodes. Noting this novel outlet, subsequent groups were prompted for illustrations of pain. A total of 17 drawings were collected from focus group participants. We discuss seven of the drawings that best opened a window into the lived experience of pain, reflected through the eyes of cancer survivors. This study provides evidence that self-expression through color, imagery and written personal accounts provides more accurate depictions of pain for Southwest AI cancer survivors than pain scales alone. It is hypothesized that cultural modes of communication (i.e., storytelling) and intergenerational influences of artwork led to the depiction of pain in drawings. Suggestions for further exploration of the use of the pain drawings for pain assessment in healthcare settings are included.

Protective Factors against Depressive Symptoms in Female American Indian Cancer Survivors: The Role of Physical and Spiritual Well-being and Social Support.

Background:This exploratory study examined how perceived physical well-being, spiritual well-being and social support relate to depressive symptoms among American Indian (AI) female cancer survivors. Methods:Cross-sectional data were obtained from 73 AI female cancer survivors between 32 to 77 years of age in the Midwest of the United States. Standardized measures were used to assess for depression (Center for Epidemiologic Studies Depressive Symptoms Scale Short Form), spiritual well-being (Functional Assessment of Chronic Illness Therapy, Spiritual Well-being Scale), and social support (Medical Outcomes Study of Social Support Questionnaire). A single item measured physical well-being. After univariate and bivariate analyses, hierarchical multiple regression (HMR) was used for modeling. Results: Approximately 47% of the sample scored higher than 10 on the depressive symptoms scale. HMR results indicated that perceived physical well-being, spiritual well-being, and social support were negatively associated with depressive symptoms, accounting for 47% of the variance in the final model (adjust R2 = 0.47). Conclusions:A high percentage of the sample exceeded the cut point for probable depression, highlighting the importance of addressing mental health in the aftermath of cancer treatments for AI women. Results suggest that perceived physical well-being, spiritual well-being, and social support serve as protective factors and possible levers to reduce depression in this population. Interventions designed to bolster existing social support and spirituality could improve the mental health of AI women in the aftermath of cancer treatment. Community-based, culturally appropriate health education programs should be developed to enhance AI women’s physical health.

We Don’t Talk about It: Cancer Pain and American Indian Survivors

Pain is a common symptom among cancer survivors, yet is rarely talked about by American Indians. Understanding the reasons for reduced communication by American Indian cancer survivors is important for healthcare providers, family members, and others providing treatment and support for cancer symptoms. Thirteen focus groups with Southwest American Indian adult cancer survivors were audiotaped and transcribed as part of a randomized intervention to remove barriers to cancer symptom management. Constant comparative methods were employed in the data analysis, topic categories were grouped for comparison, and final assessment followed Grounded Theory methods. Findings were categorized into two major groupings: communication with family members and communication with health care providers. Within these two groupings, three themes emerged to describe cancer pain experiences and communication barriers: (1) We don’t talk about it, (2) Respect for healthcare providers; and (3) Culturally prohibitive topics on death and pain experiences. Not talking about their cancer diagnosis and cancer-related pain leaves many American Indian cancer survivors without much-needed social support, contributing to reduced treatment compliance and access to healthcare. Findings have implications for educational interventions and quality of life improvement for American Indian and other underrepresented communities.

American Indian Women Cancer Survivor's Needs and Preferences: Community Support for Cancer Experiences.

Cancer (the focus of this inquiry) is the leading cause of death among American Indian and Alaska Native women. The purpose of this study was to identify American Indian women cancer survivors' needs and preferences related to community supports for their cancer experience. This qualitative study examined female American Indian cancer survivors' needs and preferences about community support. The sample included 43 American Indian women cancer survivors (the types of cancer survivors included cervical cancer: n = 14; breast cancer: n = 14; and colon and other types: n = 15) residing in the Northern Plains region, in the state of South Dakota. Data were analyzed using qualitative content analysis and were collected between June of 2014 and February of 2015. When asked about their needs and preferences, 82% of participants (n = 35) of female American Indian cancer survivors reported at least one of the following most commonly reported themes: cancer support groups (n = 31, 72%), infrastructure for community support (n = 17, 40%), and cancer education (n = 11, 26%). In addition to the aforementioned themes, 33% of participants (n = 14) indicated the need for an improved healthcare system, with 11% (n = 5) of participants expressly desiring the integration of spirituality and holistic healing options. The majority of American Indian women cancer survivor participants of this study identified a need for more community-based support systems and infrastructures to aid with the cancer survivor experience. Results warrant a community approach to raise awareness, education, and support for American Indian cancer survivors.

The experience of treatment barriers and their influence on quality of life in American Indian/Alaska Native breast cancer survivors.

American Indian and Alaska Native (AI/AN) breast cancer survivors experience disparities in breast cancer incidence and age-adjusted mortality compared with non-Hispanic white (NHW) breast cancer survivors. In addition, mortality-to-incidence rates indicate that AI/ANs continue to have the poorest survival from breast cancer compared with other racial groups. "Native American Cancer Education for Survivors" (NACES) is a cultural education and support intervention for AI/AN patients with cancer that collects data from voluntary participants through the NACES quality-of-life (QOL) survey regarding their cancer experience and survivor journey. Data from the NACES QOL survey were analyzed to determine whether barriers accessing and during initial cancer treatment impacted QOL domains for AI/AN cancer survivors. Exploratory analyses of selected variables were conducted and were followed by Kruskal-Wallis tests to determine whether these barriers influenced survivorship QOL for AI/AN breast cancer survivors. AI/AN breast cancer survivors' social QOL was significantly affected by barriers to accessing cancer treatment. Many respondents experienced barriers, including a lack of cancer care at local clinics and the distance traveled to receive cancer care. During treatment, too much paperwork and having to wait too long in the clinic for cancer care were the most frequently reported barriers. Treatment barriers influence AI/AN breast cancer survivors' social QOL. Mediating these barriers is crucial to ameliorating AI/AN survivors' disparities when accessing and completing cancer treatment and improving survivorship QOL. Cancer 2017;123:861-68. © 2016 American Cancer Society.

Cancer Journey for American Indians and Alaska Natives in the Pacific Northwest .

To describe the experiences of American Indian and Alaska Native cancer survivors to improve understanding of the trajectory of cancer treatment. . Qualitative focus group research. . Rural and geographically isolated American Indian and Alaska Native communities in the Pacific Northwest. . 30 American Indian and Alaska Native cancer survivors or caregivers. . The authors analyzed data from two focus groups with cancer survivors by using thematic analysis informed by indigenous methodologies. . Based on focus group findings, the authors developed a conceptual model of the cancer experience called Rough Waters. Participants described their cancer experience as a collective journey involving family and friends and requiring resources to offset challenges along the way. Dominant themes were delays, isolation, communication, money, advocacy, spirituality, and family involvement. . American Indians and Alaska Natives in the Pacific Northwest have special cultural needs during cancer care. The current study provides examples that can guide patient-provider interactions. . Using the metaphor of cancer as a journey, clinicians can begin a dialogue to identify what will impede or assist the cancer journey for their American Indian and Alaska Native patients.

Culture-broker and medical decoder: contributions of caregivers in American Indian cancer trajectories.

Caregivers play a special role in the management and control of cancer-related pain. For American Indians with cancer, caregivers can contribute to patient education, medication compliance, and can facilitate communication between the patient and the provider and the patient and the family. To identify the role(s) of caregivers of American Indian cancer survivors. As a part of a large randomized intervention designed to improve barriers to cancer symptom management, 13 focus groups were held among American Indian cancer survivors and their caregivers at Southwest reservations and urban sites. Focus groups, audiotaped and transcribed, used constant comparative methods in the analysis of caregiver dialogues. Caregivers are patient educators and provider culture-brokers and their communication strategies use a combination of cultural and conventional strategies in their care of American Indian cancer patients. Cultural communication styles include "talk stories" (storytelling), group (talking circles), and dialogue to manage cancer pain, educate the patient and community, and to protect the patient from stigma, reduce barriers to care, and provide support to patients and families. Active discussion with providers "re-packaged" the patient's reporting/responses to specific clinical measures (pain measure scores) and identified the need for pain medication and compliance-related issues. Findings are not generalizable to the American Indian population outside of the sites and focus groups from which data were collected. Caregivers are "cultural brokers" who inform providers of the cultural nuances associated with American Indian patient care. However, caregivers voiced that cultural restriction for not discussing illness openly was a sanction and an important barrier.

Predictors of Pain Management among American Indian Cancer Survivors.

There is little research on cancer symptom management among Indigenous populations. This paper reports on the predictors of cancer pain management among American Indian cancer patients/survivors and their caregivers/family. The intervention was a symptom management toolkit delivered via traditional talking circles vs. standard care (control) at eight randomized reservation and urban clinic sites in the Southwest. Participants (N=184) were American Indian adults diagnosed with cancer and/or caregiver/family members. The primary outcome measure collected via pre-test and post-test questionnaires was the ability to manage cancer pain. Significant differences at post-test were the ability to manage cancer-related pain (p=.02) and a close relationship (p=.0018) that proved significant for intervention participants and was instrumental in fostering their ability to manage pain. The study also showed improvement in the desire and ability to improve cancer pain management among intervention participants. Programs targeting American Indians should use culturally appropriate education to improve management of cancer-related symptoms.

The cultural constructs of cancer-related fatigue among American Indian cancer survivors.

Cancer-related fatigue (CRF) is a common symptom experienced by cancer survivors. Persistent fatigue can last years after cancer treatment. CRF's origin is unknown, and there are no validated treatments. Cultural constructs (definitions, meaning, and explanations) may vary the presentation and treatment choices related to fatigue. Identifying and categorizing CRF terms and experiences among racial, ethnic, and non-English speaking groups may provide a fuller understanding of CRF to guide tailoring of interventions. We report on the cultural constructs of CRF as reported by American Indian cancer survivors. A study of Southwest American Indians collected qualitative data on cancer survivors' experiences of fatigue. Focus groups (n = 132) at urban clinics and rural reservation sites in the Southwest collected qualitative data on cancer survivor experiences with fatigue. The sessions were audiotaped and transcribed verbatim. During analysis, common themes were coded and formed into categories following Grounded Theory analytical procedures. Relationships between categories were examined. CRF was described by survivors as an entity that comes into the brain, "drains life" from the body, and creates long-lasting suffering, pain, and stigma. We review the cultural constructs of fatigue and CRF's relationship to "being out of balance." There is a need for culturally appropriate education concerning fatigue, techniques for reducing fatigue, and support for American Indian cancer survivors and other vulnerable populations.

Storytelling

Storytelling is a basic cultural phenomenon that has recently been recognized as a valuable method for collecting research data and developing multidisciplinary interventions. The purpose of this article is to present a collection of nursing scholarship wherein the concept of storytelling, underpinned by cultural phenomena, is explored for data collection and intervention. A conceptual analysis of storytelling reveals key variables. Following a brief review of current research focused on storytelling used within health care, three case studies among three vulnerable populations (American Indian teen mothers, American Indian cancer survivors, and African American women at risk for HIV/AIDS) demonstrate the uses of storytelling for data collection and intervention. Implications for transcultural nursing regarding storytelling are discussed.

Healing Pathways: Art Therapy for American Indian Cancer Survivors

There is a paucity of research addressing quality of life factors for American Indian and Alaska Native cancer survivors. Complementary forms of therapy, such as art therapy, are beginning to address quality of life factors through the "healing" arts for cancer survivors. The purpose of this mixed methods pilot was to explore the effects of culturally relevant art interventions on stress reduction for American Indian cancer survivors and their family members. Forty-six adult participants attended one of three workshops held within two settlements of the Coharie tribe and one southeastern urban tribal center. The data collected consisted of a pretest and posttest State-Trait Personality Inventory (STPI) and artwork resulting from three directed interventions. The artwork was analyzed using qualitative coding methods; however, the scores from the STPI were inconclusive because the inventory was determined to be culturally biased. While statistical significance was not achieved, the findings from qualitative coding reinforced a native concept of wellness focusing on the complex interaction between mind, body, spirit, and context. This pilot study also demonstrated how a community-driven approach was instrumental in the development of the overall workshop format. An expansion of the pilot study is also presented with preliminary results available in 2012.

"Weaving balance into life": Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians.

Self-management of cancer symptoms has the potential to decrease the suffering of cancer survivors while improving their health and quality of life. For many racial/ethnic groups, culturally appropriate self-management instruction is not readily available. This paper reports on the first symptom management toolkit developed for American Indian cancer survivors. Part of a larger research study, a three-phase project tested a cancer symptom self-management toolkit to be responsive to the unique learning and communication needs of American Indians in the Southwest U.S.A. American Indian cancer survivors and family members participated in 13 focus groups to identify cultural concepts of cancer and illness beliefs, communication styles, barriers, and recommendations for self-management techniques. Sessions were audiotaped and transcriptions were coded using grounded theory. Participants expressed a need for an overview of cancer, tips on management of common symptoms, resources in their communities, and suggestions for how to communicate with providers and others. The "Weaving balance into life" toolkit is comprised of a self-help guide, resource directory, and video. Preferred presentation style and content for the toolkit were pilot tested. American Indian survivors favor educational materials that provide information on symptom management and are tailored to their culture and beliefs. Suggestions for adapting the toolkit materials for other American Indian populations are made. Many cancer survivors lack effective self-management techniques for symptoms, such as pain, fatigue, and depression. The toolkit promotes self-management strategies for survivors and provides family members/caregivers tangible ways to offer support.

Satisfaction with telehealth for cancer support groups in rural American Indian and Alaska Native communities.

A descriptive study was conducted to determine the information needs of American Indian (AI) and Alaska Native (AN) cancer survivors and assess satisfaction with and acceptability of telehealth support group services for cancer survivors in AI and AN rural communities. AI and AN cancer survivors were asked to complete the Telehealth Satisfaction Survey and two open-ended questions, one regarding information needs and one seeking comments and suggestions about cancer support group meetings. Thirty-two surveys were returned. Information about nutrition during treatment and treatment-related side effects were the most sought after topics. Participants valued the opportunity to interact with other AI and AN cancer survivors who also lived in remote locations and the usefulness of the information presented. The link with geographically distant survivors was valuable to participants as they felt they were no longer alone in their cancer experiences. Determining survivors' information needs provides meaningful topics for future support group education. Telehealth is a viable way to facilitate cancer support groups to AI and AN cancer survivors in rural communities.

Cancer, employment, and American Indians: A participatory action research pilot study.

American Indian cancer survivors are an underserved and understudied group. In this pilot study we attempted to address, through participatory action research, missing information about those factors that serve to either facilitate employment or hinder it for adult cancer survivors. One task of the study was to develop and/or modify instrumentation that could be used in a subsequent, in-depth census study. The pilot sample consisted of 10 cancer survivors, all members of a Northern Minnesota American Indian tribe, and 10 family members. All survivors reported having health problems such as fatigue since their cancer treatments. Rehabilitation counselors can assist survivors and their family members by advising them in regard to employment discrimination and accommodations such as flexible work schedules.

American Indian Cancer Survivors: Exploring Social Network Topology and Perceived Social Supports

The literature on social networks and social supports attests to the powerful influence of social relationships on health; there is a dearth of such studies with American Indians/Alaska Natives. This exploratory study assesses the social network topology and perceived social supports received among American Indian cancer survivors and matched controls. Although there did not appear to be marked differences overall among cases and controls, expressive social supports (eg, companionship, moral support, encouragement, advice, and friendship) were ranked highly across each component of the network. The family appears to be the principal source of social supports relative to either best/closest friend or church/community.