Overview

CANCER SURVIVORSHIP AND NAVIGATION

AUTHORS

  1. Dr. Melba Sheila D’Souza, Ph.D., M.Phil.N., M.Sc.N, B.Sc.N., RN, CCNE, CMNS, Associate Professor, Nursing and Population Health, Thompson Rivers University, British Columbia, Canada, Email: mdsouza@tru.ca
  2. Michelle Smith, BSc, MSc, Cert VA III, Lead, Learning Health Systems, Regional Practice
    Lead, Research and Knowledge Translation Interior Health, Adjunct Professor, UBC
    School of Health and Exercise Sciences, Faculty of Health and Social Development,
    Canada, Email: Michelle.Smith3@interiorhealth.ca
  3. Matthew Savoy, RN, BScN, BA (Hons), BC Mental Health and Substance Use Services,
    PHSA, Email: matthew.savoy@phsa.ca
  4. Amy Strank, RN, BScN, Interior Health

    CONTRIBUTORS

    1. Andrea Edwards BHK, MScPT Physiotherapist, Certified Lymphatic Therapist, PiNC Cancer Rehab Practitioner, CAFCI Acupuncture, Somatic Experiencing Student BEG1, 101-409 Seymour St, Kamloops, BC V2C 2G7, www.strengthinbalance.ca
    2. Karma Lalli, RN, BSN, Interior Health

    Biography

    Dr. Melba D’Souza is a nurse educator and researcher, serving as an Associate Professor in the BScN and MN programs at the School of Nursing, Thompson Rivers University in British Columbia, Canada. Her research program focuses on the critical area of psychosocial oncology and cancer care, employing mixed methods and participatory action research. Her work emphasizes the needs of immigrants, refugees, older adults, and rural communities in British Columbia. She has made significant contributions to knowledge translation and contextual evidence in nursing, keeping pace with the latest advancements in the nursing field. Currently, Dr. D’Souza is leading significant research as the Principal Investigator on a grant funded by the Breast Cancer Society of Canada. This longitudinal community participatory action research aims to enhance Cancer Survivorship and Navigation for patients, survivors, and caregivers in British Columbia. The ultimate goal is to improve patient-reported outcomes, potentially influencing policy and practice in cancer care delivery. She continues to make substantial contributions to the field of nursing and oncology care, with a particular focus on improving outcomes for underserved populations and rural communities in British Columbia.

    Citation

    D’Souza, M. S., Smith, M., Savoy, M., & Strank, A. (2024). Cancer Survivorship and Navigation.
    Breast Cancer Canada, Breast Cancer Society of Canada Grant and Thompson Rivers University.
    Retrieved on 30 December 2024. Available on: https://cancercareinnovation.trubox.ca/

    Table of Contents

    Introduction
    Learning Objectives
    Knowledge Hub 01: Introduction to Navigation and Survivorship
    Knowledge Hub 02: Information and Education
    Knowledge Hub 03: Assessment and Strategies
    Knowledge Hub 04: Communication and Health Literacy
    Knowledge Hub 05: Psychological and Emotional Distress
    Knowledge Hub 06: Cultural Considerations in Care
    Knowledge Hub 07: Survivorship and Supportive Care
    Appendices

    Introduction

    Cancer, a complex disease, not only affects the physical health of individuals but also encompasses emotional, social, and psychological impacts. Among the challenges posed by diagnosis, treatment, and survivorship, there arises a need for complete support systems that go beyond medical treatment to empower individuals and their caregivers holistically. This is where Cancer Survivorship and Navigation emerges as an offering of guidance, support, and resources to navigate cancer care and survivorship.

    Cancer Survivorship and Navigation is a complex approach aimed at connecting, accessing, navigating, collaborating, engaging, and resourcing individuals living with cancer and their caregivers. It serves as a bridge between patients, caregivers, healthcare providers, and the myriad of services and resources available throughout the cancer journey. At its core, this and Survivorship focuses on capacity building, mentoring, and supporting individuals to not only cope with their diagnosis but also to thrive with improved knowledge, understanding, and application, leading to an enhanced quality of life.

    The six core philosophies of Cancer Survivorship and Navigation are:

    1. Cancer Survivorship and Navigation begins with establishing meaningful connections between patients, caregivers, and the healthcare system. It ensures accessibility to crucial information, services, and resources necessary for effective cancer management and support.
    2. Cancer Survivorship and Navigation provides guidance and assistance in coordinating appointments, treatments, and supportive services, thereby alleviating the burden on patients and caregivers.
    3. Effective cancer care is a collaborative effort involving healthcare professionals, patients, and caregivers. Cancer Survivorship and Navigation fosters collaboration among stakeholders, encouraging active engagement in decision-making processes and treatment planning.
    4. Empowering individuals with the knowledge, skills, and resources necessary to navigate their cancer journey is a cornerstone of Cancer Survivorship and Navigation. Through education, counselling, and support services, individuals are equipped to make informed decisions and advocate for their care.
    5. Coping with cancer can be emotionally and psychologically taxing. Cancer Survivorship and Navigation offers personalized mentoring and support, providing a safe space for individuals to express their concerns, fears, and emotions while receiving guidance and encouragement from experienced navigators.
    6. Accessing inclusive cancer care often requires tapping into a diverse array of resources, including financial assistance, transportation services, and support groups. Cancer Survivorship and Navigation facilitates resource mobilization, ensuring individuals have access to the necessary support systems to address their unique needs.

    Goals

    The four chief goals of the Cancer Survivorship and Navigation are:

    1. To better understand the implementation factors that influence the utilization of Cancer Survivorship and Navigation in British Columbia. This goal aims to conduct research and analysis to identify the key factors influencing the implementation of Cancer Survivorship and Navigation in British Columbia.
    2. To assess the Cancer Survivorship and Navigation for capacity building, mentoring, and supporting people living with cancer. This goal focuses on evaluating the effectiveness of Cancer Survivorship and Navigation in enhancing capacity building, providing mentoring, and offering support to individuals living with cancer.
    3. To evaluate the impact of Cancer Survivorship and Navigation on people living with cancer participating across British Columbia. This goal seeks to assess the impact of Cancer Survivorship and Navigation on individuals living with cancer across diverse geographical regions in British Columbia.
    4. To improve the quality of life by connecting, accessing, navigating, collaborating, engaging, and resourcing among people living with cancer. This goal emphasizes the objective of Cancer Survivorship and Navigation, which is to enhance the quality of life for individuals living with cancer by providing inclusive support across various dimensions.

    Outcomes

    The six key outcomes of the Cancer Survivorship and Navigation are:

    1. Individuals living with cancer and their caregivers demonstrate increased confidence, autonomy, and empowerment in navigating their cancer journey. This outcome is evidenced by improved self-efficacy, informed decision-making, and a sense of control over their cancer care journey.
    2. Patients and caregivers have increased access to essential resources, services, and support systems throughout their cancer journey. By addressing barriers to access and providing personalized assistance, individuals receive timely mentoring and support tailored to their specific needs, ultimately enhancing their overall quality of life.
    3. Improved communication and collaboration among patients, caregivers, healthcare providers, and community organizations involved in cancer care. This outcome is reflected in improved communication between patients and healthcare providers, enhanced interdisciplinary collaboration, and increased awareness of available resources within the healthcare system.
    4. Caregivers experience reduced burden and stress associated with caring for individuals living with cancer. This outcome is evidenced by decreased caregiver stress, improved coping mechanisms, and enhanced caregiver well-being, ultimately fostering a more supportive and resilient caregiving environment.
    5. Delivery of patient-centered care that prioritizes individual needs, preferences, and goals throughout the cancer journey. This outcome is reflected in improved patient satisfaction, personalized care experiences, and alignment of care with individual values and preferences.
    6. Continued availability and sustainability of Cancer Survivorship and Navigation delivered through a voluntary professional navigator. This outcome is achieved through ongoing training, mentorship, and support for navigators, as well as the establishment of partnerships with healthcare organizations, community stakeholders, and funding agencies to ensure the long-term viability and impact of navigation services for individuals living with cancer and their caregivers.

    Conclusion

    In cancer care, where the journey is mixed with uncertainties and challenges, Cancer Survivorship and Navigation emerge as offering guidance, support, and empowerment to individuals and their caregivers. As we get on board this journey together, let us navigate the complexities of cancer with compassion, resilience, and unwavering support, ensuring that every individual living with cancer can grow, live, and thrive with dignity and grace. The goals collectively aim to strengthen the implementation, effectiveness, and impact of Cancer Survivorship and Navigation in British Columbia, with a primary focus on improving the quality of life and outcomes for individuals living with cancer across the region. Through research, evaluation, and collaboration, we strive to create a more supportive and empowering environment for all those affected by cancer. The outcomes collectively demonstrate the significant impact of Cancer Survivorship and Navigation in improving the quality of life, access to resources, communication, and collaboration among individuals living with cancer and their caregivers.

    Learning Objectives

    Knowledge Hub 01: Introduction to Navigation and Survivorship
    1. Define the goals and outcomes of Cancer Survivorship and Navigation.
    2. Comprehend the domains of needs and phases for patients living with cancer.
    3. Explain the various roles of a professional or health navigation.
    Knowledge Hub 02: Information and Education
    1. Apply a person-centred approach in caring for people living with cancer.
    2. Utilize the person-centred tool to elicit the perspectives of the person.
    3. Identify how to accommodate learning preferences when educating people.
    4. Integrate education principles into professional practice.
    5. Discuss the fundamentals of cancer.
    6. Explain the common types of cancer.
    Knowledge Hub 03: Assessment and Strategies
    1. Recognize the importance of using consistent approaches in symptom screening.
    2. Use scientifically recognized tools to screen patients living with cancer for symptoms.
    3. Learn how to utilize symptom assessment tools such as BC cancer symptom management guidelines and other resources.
    Knowledge Hub 04: Communication and Health Literacy
    1. Recognize challenges in health literacy, communication, and education.
    2. Understand how to develop and evaluate education materials for readability.
    3. Explain strategies to improve health information communication and education.
    4. Discover techniques on how to de-escalate a situation through focused communication.
    Knowledge Hub 05: Psychological and Emotional Distress
    1. Describe the health impacts of psychological and emotional distress in patients living with cancer.
    2. Recognize risk factors for emotional distress in patients living with cancer.
    3. Apply a systematic approach to conduct screening and assessment of anxiety and depression following the BC Cancer practice guidelines.
    Knowledge Hub 06: Cultural Considerations in Care
    1. Improve understanding of the concept application of cultural considerations in care
    2. Understand how to use cultural assessment tools.
    3. Specify effective support for patients with a language barrier.
    4. Reflect on one’s practice of cultural competence and cultural safety.
    Knowledge Hub 07: Survivorship and Supportive Care
    1. Differentiate between the distinct types of psychosocial support.
    2. Identify the role of family in survivorship, emotional and psychosocial support and psychosocial needs.
    3. Record challenges for integration and continuity of care and improve transition in care.
    4. Discover the professional role in collaborative relationship building and empowerment of patients.

    Glossary

    Adjuvant: this is a secondary treatment that accompanies the first treatment (BC Cancer, 2019a)

    Androgen Deprivation Therapy: a hormone therapy that prevents testosterone production during treatment for prostate cancer (Prostate Cancer Foundation, 2022b)

    Apps: features on your smartphone that can provide medical information (National Institute on Aging, 2023)

    Chemotherapy: a form of treatment that uses medications to kill cancer cells (BC Cancer, 2019a)

    Clinical trial: a process of receiving cancer treatment through a research process (BC Cancer, 2019a)

    Complementary and Alternative Medicine: health practices that are not part of medical treatment for cancer (BC Cancer, 2019a)

    Cookies: parts of a website that are designed to modify your experience on a website (National Institute on Aging, 2023)

    Dressing: a treatment that is used to go over a surgical incision (McGill University Health Centre, 2020)

    Dual Modality: refers to a treatment plan that uses two different types of treatment at the same time (BC Cancer, 2019a)

    Grading: is a process that determines the treatment plan, prognosis and likely outcome (BC Cancer, 2019a)

    Hormone Therapy: a form of treatment that uses medications to modify the action of hormones (BC Cancer, 2019a)

    Immunotherapy: is a treatment that targets the immune system to help the body fight cancer (BC Cancer, 2019a)

    Incidence: a statistic that looks at the number of new cases for a group of people in a defined period (BC Cancer Agency, 2011)

    Incision: is referring to the cut made during surgery (McGill University Health Centre, 2020)

    Jackson-Pratt Drain: is a drain that helps take out excess fluid from the surgical area (McGill University Health Centre, 2020)

    Local Side Effects: refers to side effects that are affected in a certain area of the body from treatment (BC Cancer, 2019a)

    Long-term Effects: these are side effects that persist after treatment has finished (Canadian Cancer Society, 2018)

    Lymph node removal (McGill University Health Centre, 2020)

    Maintenance therapy: treatment that extends past the initial care of a person’s cancer (Canadian Cancer Society, 2018)

    Mortality: is a statistic that means the number of deaths that happen (BC Cancer Agency, 2011)

    Navigator: A person who provides support to help a person with cancer travel on their journey

    Neoadjuvant: is a treatment that happens before the main treatment (BC Cancer, 2019a)

    Palliative: a treatment plan that seeks to manage symptoms, and control does not eliminate cancer (BC Cancer, 2019a)

    Partial Mastectomy: Part of the breast has been removed, occurs when the cancer tumour is small (McGill University Health Centre, 2020)

    Prevalence: a statistic that looks at all of the people that have been previously diagnosed and are living with cancer (BC Cancer Agency, 2011)

    Second cancer: cancer comes back after the period of treatment is complete (American Cancer Society, 2020c)

    Side Effects: An unintended result of a treatment (Government of Canada, 2021)

    Staging: looks at whether the cancer has spread to other parts of the body or not (BC Cancer, 2019)

    Systemic Side Effects: side effects that affect many areas of the body (BC Cancer, 2019a)

    Systemic Therapy: refers to treatment that goes through the bloodstream to cancer cells (Alberta Health Services, n.d.b)

    Survival: refers to the number of people that are living after a diagnosis, commonly using a 5-year mark (Canadian Cancer Society, 2023f)

    Survivorship: A multi-factor definition that seeks to describe the cancer journey of an individual

    Targeted Therapy (BC Cancer, 2019a)

    Total Mastectomy: when the entire breast, nipple, a portion of tissue near the armpit and a part of the skin is removed (McGill University Health Centre, 2020)

    Tumour-Node-Metastasis: a way to describe the cancer in terms of tumour size, if it has spread to a node, and whether the cancer has spread to other areas of the body (BC Cancer, 2019a)

    Adapted from Cancer Navigation Guide Original Sep5, n.d.