Cancer fatigue and hair loss experiences among American Indian men

Abstract

Background:

Little is known about the cancer symptom experiences of Indigenous populations, particularly concerning fatigue and hair loss. Hair loss can have many detrimental effects given the significant cultural importance of hair in indigenous communities. Gaining a better understanding of the unique perspectives of American Indian male cancer survivors as they manage these two distinct symptoms is essential for improving symptom management and quality of life measures in this underserved population.

Methods:

A multipronged study explored the barriers, facilitators, and cultural constructs associated with cancer symptoms. Focus group sessions with American Indian cancer survivors and caregivers in the Southwest gathered data on survivor experiences, with male responses isolated for analysis. The subsequent randomized control trial intervention (N = 231) tested an educational toolkit and “Talking Circles” designed to help survivors and their families better manage cancer symptoms.

Results:

Study findings report on the unique fatigue and hair loss experiences of American Indian male cancer survivors.

Conclusion:

The insights gained prove valuable for educational and intervention programs targeting the mangagement of cancer symptoms among Indigenous populations.

Introduction

Feeling fatigue means being so tired that it interferes with daily activities. Cancer-related fatigue (CRF) is a common disabling and distressing symptom of cancer prior to and following cancer treatment, and it can last for years. Feeling fatigued can limit a cancer survivor’s work activities, impact family roles and responsibilities, and curb employment opportunities and earning potential.¹ Unfortunately, symptoms of CRF can often go unrecognized and untreated.² A meta-analysis of 129 studies (from 1993 to present) estimated the prevalence of fatigue to be 49% among cancer survivors across cancer type, cancer stage, and gender.³ The management of CRF requires not only the knowledge and tools to mitigate fatigue, but also the desire and resources to maintain helpful behaviors and overcome the burden of life demands exacerbated by chronic disease-related limitations.⁴ Problems that arise during the fatigue period may include a poor support network and strained relationships, financial constraints, limited transportation, and culture-bound beliefs that stigmatize or place restrictions on activities.⁵ A better understanding of Indigenous cancer survivors’ fatigue experiences, given the cultural constructs associated with that experience, can guide healthcare providers and families to better manage CRF. Although little is known about gender differences in the fatigue experience, identifying these differences can add to the successful management of fatigue.

Hair loss is another common distressing, yet difficult to handle, side effect for many cancer survivors undergoing treatment. Most literature to date has focused on the psychosocial challenges women face in their experience related to coping with hair loss,⁶ with male cancer survivors often being overlooked.⁷ However, the significance of hair and hair loss among both males and females is a culture-bound phenomenon within many Indigenous groups. Some tribal cultures in the Southwest, for example, place profound cultural and spiritual significance on hair, viewing it as a symbol of strength and connection to ancestry. For members of these Indigenous communities, hair loss during cancer treatment can have deep emotional and cultural impacts, making symptom management even more critical. Many consider head hair as sacred, “an integral component of a unified body and spirit.”⁸ Additionally, in American Indian culture hair has historically been seen as supporting one’s tribal affiliation, differentiating between other tribes and enemies, and for males, long hair represents masculinity.⁸ Navajo men often wear their hair bundled and tied with white string at the nape of their neck. Other tribes often wear long braids, while others sport long, free-flowing hair. Among many tribal groups, cutting one’s hair signifies a grieving period where the amount of hair cut is proportional to the relationship to the deceased. Death of a close blood relative may require a large amount of hair to be cut on one or both sides. Thus, public observation of one’s hair status not only reflects the tribal affiliation of the individual, but can report on the grief, mourning period, and relationships to others. Therefore, it is important for healthcare providers, survivors, families, caregivers and communities to gain a better understanding of hair loss as a significant cancer symptom impacting Indigenous male survivors.

Improving coping and management of both CRF and hair loss can be possible through education and targeted intervention, recognizing differences in cultural and gender experiences. Although this article reports on the findings related to fatigue and hair loss for male participants, the larger study¹ explored the cancer experience of both adult male and female American Indian cancer survivors in the management of their cancer-related fatigue, pain, depression, and loss of function. In addition, an educational intervention curriculum and toolkit, developed with tribal input, was designed based on the themes investigated early in the study and then tested during the randomized control trial phase with the aim of helping Indigenous survivors and their families to better address barriers and manage cancer symptoms.

Methods

The three-pronged study focused on gathering data on cancer symptom experiences to develop and test a culturally appropriate intervention designed to overcome barriers to symptom management among Southwest American Indian communities. During the first phase, interviews were conducted with healthcare providers (n = 5) and American Indian cancer survivors (n = 20) to formulate questions for subsequent focus groups on health-seeking behaviors, communication, and barriers to care and symptom management. During Phase 2, 13 focus groups with adult American Indian cancer survivors and family caregivers residing in the Southwest (n = 126) gathered information to identify the gender-specific cancer symptom management experiences of cancer survivors. Efforts to distinguish Indigenous experiences, beliefs, and responses to common cancer symptoms, including fatigue and hair loss, and methods for strengthening patient/provider communication and survivor/family relationships were a central focus.

Focus group recruitment was via community flyers, and all potential participants were provided with written information on the study by trained American Indian project facilitators. Once recruited participants were verbally told of the study purpose, risk and benefits. Following protection of human subjects Institutional Review Board (IRB) review, approval, and participant consenting for the study, focus group sessions led by the facilitators were held in community meeting rooms at three urban and two rural reservation sites. Focus groups were comprised of approximately 10 members, meeting for 1–1.5 h. Facilitators audiotaped each session, water was provided, and a gift card was distributed at the end of the session. Audio recordings of focus groups were transcribed and analyzed using constructivist Grounded Theory methods⁹ to identify key codes and categories. Additional investigators and community representatives further assessed the developing framework to validate findings and help finalize the main codes and themes. Based on the key themes curriculum for educational small groups in the form of “Talking Circles” and toolkit educational materials were developed for survivors and family/caregivers to help promote better self-care for cancer-related symptoms (i.e. mental health exercises, healthy lifestyle recommendations), with some sections featuring gender-specific advice. These materials were further tailored with the input of key informants and were evaluated as culturally appropriate in one of the focus group sessions. Symptom measurement scales (pain/depression/fatigue/loss of function) were also examined and modified for questionnaire development and feedback on culturally appropriate words, images, color schemes, and questions were obtained during focus group sessions.

Phase 1 and 2 findings informed the Phase 3 randomized intervention control trial held at eight urban and rural reservation locations with American Indian cancer survivors and caregivers (N = 231) to test the impact of a cancer symptom management toolkit delivered via Talking Circle sessions on participants’ cancer symptom management knowledge and behavior. Talking Circles are an evidence-based practice often used in Indigenous cultures to share information, experience, or perspectives in a circular seating format to enhance communication and learning.¹⁰ Recruitment for the Talking Circle intervention consisted of flyers, and informed consent was obtained prior to participation. The intervention consisted of a series of 1–1.5 h Talking Circle meetings comprised of 15–20 members meeting once a week for 2 months (8 sessions) in local American Indian community/meeting centers. Each week trained American Indian Talking Circle facilitators focused on different symptom management topics, and participants received a new “tool” (cancer symptom management guidebook, resource directory, video, journal and pen to record symptoms or questions for providers, etc.) to build their individual toolkits. A control group featured standard care (oral health education). Participants in both intervention and control arms received all toolkit components, only timing and spacing of delivery varied. Pre and post-test questionnaires capturing demographics, diagnosis and treatment history, symptom attitudes and knowledge, adapted Health Status/Quality of Life and symptom scales (i.e. Fatigue Assessment Scale, Loss of Functional Status Questionnaire, etc.) were administered at first and final sessions, respectively. Quantitative SPSS independent samples t-test analysis of questionnaire data assessing improvements compared to control groups, and detailed intervention study results on recruitment, implementation, and testing findings have been previously reported.¹¹ Data specifically on the experiences of male cancer survivors was isolated and analyzed for this report.

Results

Phase 1 and 2: Qualitative findings

A. Illness beliefs surrounding cancer

In the first arm of the study, focus group (n = 126) data identified unique experiences and key barriers to mitigating CRF and coping with hair loss. Specific findings described American Indian culturally embedded illness beliefs, associated stigma with physical/mental trauma, poor communication, lack of family/social support, as well as preferences for traditional healing in combination with Western healthcare regimens. Cancer illness beliefs appear to contribute to a measure of stigma in Indigenous communities, particularly among elder participants. For example, comments in focus groups included, “What did they do to get cancer?” Also shared were concerns that talking about cancer could in some way bring about a cancer diagnosis.

B. Fatigue experiences

Also challenging were the physical limitations caused by CRF, made worse because they were unexpected for survivors; how to cope had not been discussed beforehand with their healthcare provider. Most participants shared that they were also not told of expected adverse events during or following cancer treatment (such as nausea, weakness, pain, neuropathy, memory loss, loss of hair, and fatigue). Commonly reported factors that adversely impacted quality of life, mood, and work productivity¹² included being a) too tired to perform daily duties in caring for a family or b) too tired to work to provide food and shelter. Family members, thus, were not sympathetic and instead applied negative attributes to the survivors including “laziness,” “selfishness,” or being “irresponsible.” One male survivor describes how his brother helps him in his construction job. When he is too tired to stand or work, his brother steps in to complete the work task. His brother is helping to cover his weakness, which is not communicated with his family. This survivor had no idea how long his fatigue would last and is unsure if he can support his family.

C. Loss of hair experiences

The loss of hair as a result of chemotherapy was another stigmatizing and traumatic event described by male survivors. In a discussion with one participant, he described taking a shower and having his long hair fall out by the handfuls. “All of a sudden, one morning in the shower, my hair down to here, I thought, what the heck, it just started falling out. Talk about being miserable, I had tears in my eyes, they say cowboys don’t cry…I talked to the Man upstairs, and it was just what I had to go through.” No one had told him to expect hair loss. He describes being shocked, terrified, and helpless. “I got real weak, and sick and dizzy. It was just pretty hard, I lost hair…I felt like I was going to come completely apart. I felt like I was going to have to be one of those people that…lose all my hair, have to be helped with everything.” Another male survivor, wearing a white baseball cap to cover his bald head, shared that the shame of his loss of hair was so great that he could barely leave his house, as he did not want others to see his lack of hair. He stated, “after the third treatment of the harsher chemo, I lost my hair. I was embarrassed.” He stopped going to community affairs, to cultural dances, and to family events. He reports ongoing fatigue that adds to his stress. His fatigue is not mitigated by sleep; he endures this experience silently as the shame is too great.

D. Communication barriers

Survivor-Provider:

Communication issues were common themes across all symptoms studied. Several focus group participants strongly voiced a concern that their healthcare providers did not adequately communicate about their illness status. For instance, many survivors reported that they were not provided full or adequate information on their cancer, treatment recommendation(s), how to manage their symptoms, and the potential traumatic side effects of the cancer treatment. The failure of the healthcare system to counsel and advise patients as to such adverse events as hair loss was reported by numerous participants. Inadequate provider communication further exacerbates disparities and serves to hinder providers and survivors from working together to address CRF, with potential long-term, widespread deleterious effects on survivors’ quality of life.

Survivor-Family:

The common theme of impeded communication that American Indians “don’t talk about it” among family, as well as in healthcare settings, was reported in the research.⁵ Cultural values of not wanting to burden the family, resulting in social isolation rather than help-seeking behaviors, was a key determinant of communication issues among American Indian survivors. Although turning to their family for care and support is a strong cultural tradition, several males reported that they chose to isolate and to bear symptoms alone. These findings were informative as they illustrated the influence of culture on illness beliefs and the problems associated with diagnosis, treatment, and follow-up care of cancer, as well as inadequate symptom management.

Phase 3 intervention: Quantitative findings

A. Cancer diagnosis and treatment

The intervention arm of the study (n = 231) further assessed relationships between Southwest American Indian cancer experiences, cultural constructs, and cancer symptoms, including CRF and hair loss, and effects on quality of life. Among questionnaire participants, forty percent were male, and the average age of all participants was young, 43 years old. Pretest questionnaire results reported that the most common type of cancer diagnosed among males was prostate cancer (10.0%), followed by colon/rectal cancer (7.1%), then stomach (2.9%), and lung cancer (2.9%). Seventy-five percent of males reported that they had ever received some treatment following their cancer diagnosis. Forty-two percent of males were being treated for their cancers at the time of the evaluation. Surgery (40% of males) was found to be the most common treatment type in this study population.

B. Quality of life

The health status and quality of life of the cancer survivors and family/caregivers were assessed to provide useful information about the ability to function in daily activities, as well as their overall response to their cancer diagnosis and/or treatment. A larger percentage of male survivors reported that their emotional health was “much worse,” as compared to females (10.5% vs. 2.7%). More males (47.4% compared to 16.2% females) also reported “difficulty performing work or activity” largely due to fatigue, because of the cancer diagnosis and subsequent treatment. As a result of poor emotional health, 47.4% of males and 40.5% of females reported they “accomplished less than you would like.” In addition, more males (31.6%) than females (24.3%) reported physical health limitations, including fatigue, that “interfered with their normal social activities with family, friends, neighbors, or groups quite a bit” (during the past 4 weeks).

C. Communication

The importance of caregivers and relying on family and friends during the cancer illness experience was investigated in this study. Although most survivors reported they could call on family for some transportation needs, most reported that they had very little or no support from family or friends, particularly around communication regarding treatment and adverse events. Although 70.5% of males reported that they “talk openly with family about illness,” (at pretest, 90% of family members knew about the patient/survivor’s cancer diagnosis), less than half of the survivors reported that family members accompany the survivor to doctor visits. This did not improve significantly at posttest, as over 70% of participants reported that they continue not to get family to help with daily tasks. Reasons for this lack of assistance could be due to clinic/community transportation resources and the reluctance of survivors to ask for needed assistance.

D. Symptom knowledge and management

Intervention pretest data indicated a gender difference in areas of fatigue management knowledge, behavior, management intention and instruction with male cancer survivors faring worse. Male cancer survivors reported less fatigue symptom management knowledge (30.0% male vs. 38.8% female), less fatigue symptom management instruction (27.1% male vs. 41.9% female) and reported fewer instances of ever having thought about managing fatigue (60.0% male vs. 68.1% female). Despite this, far fewer males also reported they would like to learn how to manage fatigue (68.6% male vs. 86.3% female). Following the intervention, SPSS t-test analysis comparing pre to post-test results showed a statistically significant increase among those participants who now know how to manage their fatigue (67.2% post-test vs. 32.5% pretest, p = 0.0001). The control group reported no change for the cancer survivors. Thus, improvements in awareness and informational knowledge surrounding CRF and its management were found to be effectively influenced with targeted health education tailored to this survivor community’s culture and needs.

Discussion

The findings from this study guide us toward a better understanding of not only cancer illness beliefs and commonly experienced barriers, but also the meaning and impact of two distressing and particularly stigmatizing cancer symptoms, fatigue and loss of hair, for American Indian male survivors. While traditionally the roles of American Indian males have varied widely amongst tribes, the modern-day Western cultural emphasis on work and financial provision places male survivors combatting cancer and fatigue in a position to feel both loss of the male purpose/identity, and isolation or shame for not living up to internal or external expectations. Experiencing hair loss has also been found to be particularly impactful as it impacts perceived ethnic and community identity, as it moves appearances closer to that of Western norms of short hair for males. Thus, CRF coupled with the trauma of treatment-related hair loss further stigmatizes American Indian males with cancer. Further, this study found that once diagnosed, many male survivors reported they lacked effective self-management techniques for fatigue and coping with hair loss, which was both distressing and negatively impacted quality of life.

The literature does offer hope in combatting these disparities, even if not specific to American Indians. While the prevalence of fatigue among males with cancer has been well reported in literature,¹³ a growing number of studies have shed light on effective strategies for reducing CRF effectively, many of which this study implemented. A meta-analysis of patient education interventions to improve fatigue and pain management among breast cancer patients showed short-term improvements in quality of life,¹⁴ but the results were not significant as measured, and more research on how to enhance the impact of educational interventions is needed. Psychosocial interventions, both individual or group-based, in-person or remote, focusing on helping survivors cope and improve emotional resilience, have proven beneficial in improving both psychological and physical health outcome measures.¹⁵ In a study working with South Asian cancer survivors, increasing physical activity, mind-body interventions, pharmacological interventions, and psychosocial interventions were attempted by survivors to treat CRF.^13,16 Behavior change interventions focusing on incorporating healthier habits, such as improving diet¹⁷ and physical activity,¹⁸ have shown potential for improving fatigue and quality of life among male prostate cancer survivors as well;¹⁹ similar recommendations were provided within the Talking Circle Cancer Symptom Management curriculum in this study.

The experience of losing all or most of one’s hair during cancer treatment places a survivor in an uncomfortable position where identity and perceptions about the cancer and symptoms cannot be easily explained. Hidden by shame, cancer-related hair loss can be a shocking and traumatic event for males with an underlying meaning of death. Thus, the cancer diagnosis, hair loss, and even fatigue are often endured by American Indian male survivors in silence and out of sight. These men are stigmatized with a perceived negative or even punitive label visible for all to see. Most research on chemotherapy-related hair loss has focused on women,⁷ and most resources for wigs and coverings are targeted toward women, with men’s offerings primarily consisting of short hair styles, which may leave American Indian male survivors who prefer traditional longer styles feeling isolated and unseen.

This study is the first to explore these specific symptoms of CRF and hair loss as experienced by American Indian male cancer survivors. More research is needed to determine the best course of action for improving CRF management and coping skills for hair loss, common cancer treatment side effects for everyone, including Indigenous male cancer survivors. Based on this study’s findings, it is evident that enhancing coordination of survivor support networks (family members, caregivers, healthcare providers, etc.) and addressing known barriers to care, such as communication difficulties, along with providing educational instruction within the perimeters of unique cultural constructs (worldview beliefs such as illness beliefs, family structures, care behaviors and traditional/spiritual activities) is greatly needed. Improving awareness among Indigenous leaders, educators, and healthcare providers can be accomplished through targeted informational campaigns also geared toward keeping American Indian health issues on the radar of national public health leaders. Healthcare provider competency training, encouraging and reminding providers to prioritize discussions surrounding fatigue and hair loss symptoms at regular clinic visits, would have a beneficial impact. Further, by improving cancer survivors’ awareness that these two symptoms in particular detrimentally affect men in a unique way, but which can also be managed and dealt with in positive, culture- and identity-affirming ways, is an important message for the American Indian cancer survivor, male or female. This message is also essential for family members and caregivers who often must adjust their roles and expectations in response. Individual or group-based mental health offerings for male cancer survivors could be tailored to address cultural/identity issues surrounding male hair loss, simultaneously with the other major symptoms of depression and anxiety often suffered by cancer survivors. While CRF especially can adversely impact survivors’ quality of life, incorporating a healthier diet, physical activity, as well as culturally-tailored cognitive components into an educational intervention might have the most potential to improve perspectives and outcomes for American Indian male cancer survivors suffering from fatigue, hair loss, and many other cancer symptoms.