FormalPara Key Points

  • Psycho-oncology is a subspecialty of cancer care that focuses on the personal and social impacts, psychosocial dimensions, and cultural meanings of suffering and experiences of cancer.

  • Attention to the psychosocial aspects of cancer is integral to comprehensive quality cancer care, yet many of the services provided to Indigenous cancer patients fail to recognize and respond in culturally appropriate and safe ways.

  • Recent work has developed culturally relevant tools, designed to appropriately assess aspects of Indigenous patients’ experiences of cancer.

  • Psychosocial care should ideally be integrated as a core element of cancer care for all patients, with a focus on preventing and alleviating psychosocial distress, to assist patients and families in managing the many challenges they face throughout their care.

Recent advances in cancer care have contributed to significant improvements in cancer survival. Regrettably, these gains are not evenly distributed. Disparities in cancer incidence, prevalence, and outcomes among Indigenous peoples globally are well documented [1]. The origin of such disparities is multifactorial, with potentially modifiable social, economic, cultural, and health system factors all contributing [2]. Social determinants of health (e.g., poverty, racism, and lack of culturally responsive healthcare services) are key considerations [2]. In addition, the increased prevalence of other chronic health conditions, including type 2 diabetes, chronic renal failure, and/or respiratory conditions [3], exacerbates the burden of disease, morbidity, and mortality among Indigenous peoples.

These factors provide the context for psychosocial issues relevant to cancer care among Indigenous peoples. Throughout this discussion, it is important to highlight the need to consider the whole person and their context of care and to avoid broad generalizations about any individual based on assumptions about their culture. Genuine interest, inquiry, and commitment to understanding the patient as a person in their cultural context are fundamental to comprehensive care and, in particular, the psychosocial dimensions of cancer and cancer care.

Understanding Indigenous perspectives of health and wellbeing is critical to considering the impacts of cancer and its treatment. The broader definition of health for many Indigenous cultures extends beyond the individual to incorporate social, cultural, spiritual, emotional, and physical aspects of wellbeing within the whole community. Furthermore, for many Indigenous people, the primacy of community connection and place are key considerations in shaping the experience of health and illness and in engagement with healthcare services. The influence of these factors on an individual’s cancer experience, including its psychosocial impact, is a core consideration for Indigenous people. In this vein, the extent to which health services and care providers understand and respond appropriately to these contexts is key to optimizing cancer care and improving cancer outcomes.

It is widely recognized that attention to the psychosocial aspects of cancer is integral to comprehensive quality cancer care for all patients. This has been incorporated into national and international guidelines and policies relating to cancer care [4, 5]. At all stages of cancer care, people experience high levels of emotional distress and report psychosocial concerns, including the impact on family, financial and social concerns, and direct impacts of the disease on physical and emotional functioning. Regrettably, many of the services provided to Indigenous cancer patients fail to recognize and respond in culturally appropriate and safe ways [2].

The significance of this issue is highlighted in the adoption of distress as the “sixth vital sign” in international cancer care policy and the momentum to promote and implement standardized assessments of distress in cancer services, alongside the integration of psychosocial care as part of standard cancer care [5]. Driving many of these initiatives, psycho-oncology has gained international recognition as the field of research and clinical practice that focuses on the psychosocial aspects of cancer, including cancer prevention, early detection, treatment, recovery, and end-of-life care, including bereavement.

This chapter discusses approaches to the psychosocial aspects of cancer care for Indigenous peoples, including considerations in both clinical care within cancer services and for related psychosocial research.

Identifying Needs and Experiences

While there have been developments in patient-reported outcomes and experience-of-care measures, few studies have addressed their application to Indigenous peoples. It is essential that any assessment of needs is inclusive of and relevant to Indigenous people. This requires a more detailed understanding of those needs across different Indigenous cultures and settings as a foundation of patient-centered care [2]. It is critical that the specific values, preferences, and expressed needs of individuals are captured, using tools that encompass culture, language, and specific concerns that may influence levels of distress and responses to cancer. The latter may include histories of adverse experiences within health services, the legacy of past trauma, the cumulative burden of illness, level of trustworthiness of healthcare services, systemic barriers to healthcare, and experiences of institutional racism. Tools must appropriately assess aspects of Indigenous patients’ experiences of cancer if they are to accurately inform treatment and provide a measure of quality of care.

Recent work has developed culturally relevant tools tailored for use among Indigenous people, such as the Supportive Care Needs Assessment Tool for Indigenous People (SCNAT-IP) [6]. Such studies have identified that the most commonly reported domains of unmet need are cultural, psychological, and practical [7]. This process of screening for unmet needs is now considered a standard of quality cancer care [5, 8]. However, to ensure equitable care, distress screening needs use culturally appropriate measures and methods. The principles of partnership, sovereignty, and co-design are especially relevant to attending to the personal experiences and psychosocial impacts of cancer.

Several factors need to be considered when developing more effective psycho-oncology services and related psycho-oncology research within Indigenous communities. First, Indigenous people need to be involved at all levels of care and research development. Establishing appropriate models of governance enables Indigenous communities and community members to take leading roles in identifying key questions and designing and tailoring interventions through genuine collaboration with policymakers and care providers. This approach also enables community philosophies and values to be utilized to better understand and develop appropriate responses to psychosocial needs, thus reducing barriers to engagement in care.

To recognize the specific personal history and context of many Indigenous people, a trauma-informed approach to care can provide a helpful framework for health services and clinicians [9]. This can include the impact on health and vulnerability to illness over time due to the disruption to traditional lifestyles. Furthermore, many aspects of cancer care can reignite or exacerbate prior trauma experiences. This can include demands for separation from community and family for essential treatment, demands for hospitalization and medical procedures, and distressing cancer treatments, all of which require trust and a sense of cultural and psychological safety. For example, the sensitive and often invasive nature of cancer care, including screening, early diagnosis, and treatment, in addition to a lack of culturally informed care providers, can lead to hesitation to access care on the part of Indigenous patients. For these reasons alone, cancer care programs and providers must work to build trust and instill a sense of safety to mitigate the effects of past trauma while ensuring no harm.

Providing Care

Psychosocial care should ideally be integrated as a core element of cancer care for all patients, with a focus on preventing and alleviating psychosocial distress to assist patients and families in managing the many challenges they face throughout their care process [4]. This includes (1) steps to ensure optimal communication between patients, families, and healthcare providers; (2) assessment of patients’ key concerns and needs; and (3) provision of appropriate and effective steps to support the psychosocial needs of patients and their families throughout all cancer stages.

A growing body of evidence supports the effectiveness of psychosocial interventions when appropriately tailored based on an understanding of these needs. Models of “stepped care” have been proposed that ensure both the tailoring and monitoring of psychosocial interventions, ranging from universal needs for accurate and appropriately delivered information to specialized psycho-oncology treatments specifically developed for cancer patients and families with more complex needs (e.g., psychotherapies, counseling) [10]. In keeping with a stepped-care approach, Canada has developed guidelines for the screening, assessment, and management of psychosocial distress, depression, and anxiety in adults with cancer. Once the patient completes a self-reported outcome tool, the healthcare provider is expected to review, acknowledge the report with the patient, assess the severity of the symptom(s), provide intervention within their scope of practice, and further refer the patient to the appropriate service provider for the management of symptoms [11]. This model of care was piloted with First Nations communities in northeastern Ontario. Qualitative data revealed that both healthcare providers and patients supported the model of care. There is still work to be done to adapt these tools to the needs of Indigenous patients and to provide culturally appropriate and safe psychosocial services and interventions [12]. This should include steps explaining how to support Indigenous patients and communities living in more rural and remote locations.

The specific psychosocial themes that underpin such interventions should include significant cultural aspects. However, the relevance and effectiveness of existing models and interventions have not been evaluated for Indigenous populations. This includes supportive/expressive psychotherapy or meaning-based interventions, mindfulness-based interventions, or the digital delivery of psychosocial care. Unless relevant to the experiences, values, and languages of Indigenous people, interventions are less likely to engage Indigenous participants and provide the necessary psychosocial support required to address health and well being inequities. The importance of family, kinship, community, and connection to Indigenous people is emphasized in a large body of evidence. In addition, for many Indigenous people, a connection to place, land, and Country (Tribal lands) should also be considered in the provision of care. Healthcare that isolates and disconnects from family, community, and Country can contribute to distress and disengagement from services.

Conversely, strategies that promote cultural links and acknowledge cultural identity can provide an important source of meaning, connection, and support that is well understood to promote resilience, healing, and psychological well being. For instance, the role of community and community identity can be key protective factors in supporting patients through cancer. This may work to provide insights into how care needs to be adapted to include appropriate community carers and also recognize their support needs. Critical to appropriate psycho-oncology care for Indigenous patients is the recognition of the salience of family and the primary role it plays in many cultures. Models of care are needed that recognize these important community networks and their roles in improving outcomes. This is demonstrated in innovations that have been implemented in some settings to increase outreach for cancer care in areas with few health professionals where there is reliance on key community members. Such models may include “patient navigators” or patient liaisons living and working within Indigenous communities. This kind of on-the-ground support has been found to enable the knowledge of Indigenous communities and cultures to play an important part in providing care based on trust, thereby ensuring that the needs of patients are met from within psychosocial contexts and lived realities [13, 14].

Family and kinship networks can also provide invaluable guidance on the ways cancer care can be tailored to provide necessary practical and emotional support to Indigenous people. This is particularly important for end-of-life care and bereavement care through recognizing family and kinship networks and the significant role of specific cultural practices and rituals [15]. Bereavement practices are a critically important embodiment of deeply held cultural beliefs. An understanding of the meaning of suffering and dying, and respect for these rituals and customs, is essential to culturally inclusive psychosocial care of families and communities, to reduce fear and anxiety during end-of-life care and to support appropriate bereavement care when needed. This can include understanding the meaning of death and ways of communicating about the deceased. Ensuring that the community, family networks, and cultural practices are respected and supported will also promote recovery and optimal bereavement outcomes.

Considerations for Psycho-Oncology Research Practice

Building and promoting cultural capacity and inclusiveness within research teams is essential. Of particular relevance to psycho-oncology is understanding cultural and historical influences, such as the experience and impact of past trauma, displacement, and transgenerational psychosocial consequences that may influence psychosocial needs throughout cancer care and impact engagement with healthcare providers and researchers. Building such understanding among healthcare providers and researchers is a foundational step to shaping the focus and conduct of research, ensuring it leads to improved outcomes [2, 6].

Building greater opportunities for Indigenous people to become health professionals, health policy leaders, and research leaders in psycho-oncology is essential to improving outcomes through building deeper understandings of Indigenous knowledge, empowerment, and trust. Furthermore, this ensures that the research undertaken and the resulting strategies to improve psychosocial outcomes better reflect the needs and experiences of the priority populations that health services aim to serve.

Psycho-oncology practice and research also extend to support for those caring for people with cancer, in both formal health professional roles and informal roles within communities. The emotional impact of cancer care can be substantial [16], and culturally based models of support that help promote well being, that give this work a sense of purpose and meaning, and that appropriately recognize carer roles are important in sustaining health professional teams. Similarly, attention to and respect for differences in concepts of professional boundaries and responsibilities to one’s community by Indigenous healthcare providers are important.

In addition, it is important that systemic and environmental factors influencing health and health behaviors are recognized. While many research strategies to reduce cancer risk focus on individual risk behaviors and lifestyle factors, these are heavily influenced by social and environmental contexts, such as chronic adversity, poverty, marginalization, and disadvantage.

Conclusion

A key element of quality cancer care is attention to the psychosocial needs and impacts at all stages of cancer. Psychosocial needs are deeply embedded in personal values, experiences, and cultural and spiritual perspectives and are especially relevant to psycho-oncology care. By addressing these needs, patient engagement, experiences of care, and clinical outcomes can be improved. Developing a culturally informed and inclusive approach to psycho-oncology care requires culturally appropriate assessment tools to better understand and monitor patient and family needs and to evaluate the quality of care provided. Furthermore, culturally appropriate information, materials, and strategies to build an understanding of cancer and its treatment are essential and need to include an understanding of the potential psychosocial impacts of cancer and build confidence in available interventions. These issues are particularly relevant to psycho-oncology research with Indigenous peoples.

Underpinning this research is the development of trusting relationships with communities to ensure appropriate research questions and modes of inquiry, understanding Indigenous knowledge frameworks, and developing agreed-upon models of Indigenous ownership and sovereignty in research. These general principles are especially relevant to psycho-oncology research that aims to better understand personal experience, values, and needs and that seeks to address the often-complex determinants of distress among Indigenous patients and families.

Finally, psycho-oncology is a subspecialty of cancer care that focuses on the personal and social impacts, psychosocial dimensions, and cultural meanings of the suffering and experiences of cancer; therefore, cultural knowledge, respect, and compassion for differences are foundational to this field of work and essential to improving the outcomes for Indigenous peoples globally.