Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.
Anna Santos Salas, Sharon M Watanabe, Aynharan Sinnarajah, Nahyeni Bassah, Fleur Huang, Jill Turner, Jacqueline Alcalde Castro, Hannah M O'Rourke, Pilar Camargo-Plazas, Bukola Salami, María Santana, Katy Campbell, Omar Abdel-Rahman, Tracy Wildeman, Lisa Vaughn, Harkeert Judge, Sadia Ahmed, Bisi Adewale, Iqmat Iyiola, Patient Advisory Council
Author Information
Anna Santos Salas: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada. avs@ualberta.ca.
Sharon M Watanabe: Division of Palliative Care Medicine, Department of Oncology, Faculty of Medicine and Dentistry, College of Health Sciences, University of Alberta, 11560 University Avenue Edmonton, Alberta, T6G 1Z2, Canada.
Aynharan Sinnarajah: Department of Medicine, Queen's University, 34 Barrie Street, Kingston, ON, K7L 3N6, Canada.
Nahyeni Bassah: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Fleur Huang: Division of Radiation Oncology, Department of Oncology, Faculty of Medicine and Dentistry, College of Health Sciences, University of Alberta, 11560 University Avenue, Edmonton, AB, T6G 1Z2, Canada.
Jill Turner: Supportive Care Team Cross Cancer Institute and Division of Palliative Care Medicine, Department of Oncology, Faculty of Medicine and Dentistry, College of Health Sciences, University of Alberta, 11560 University Avenue, Edmonton, AB, T6G 1Z2, Canada.
Jacqueline Alcalde Castro: Department of Psychosocial Oncology and Supportive Care, Princess Margaret Cancer Centre , Department of Medicine, University of Toronto, 610 University Avenue, Toronto, ON, M5G 2M9, Canada.
Hannah M O'Rourke: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Pilar Camargo-Plazas: School of Nursing, Queen's University, Kingston, ON, K7L 3N6, Canada.
Bukola Salami: Cumming School of Medicine, University of Calgary Foothills Campus, 3330 Hospital Drive NW, Calgary, AB, T2N 4N1, Canada.
María Santana: Cumming School of Medicine, University of Calgary Foothills Campus, 3330 Hospital Drive NW, Calgary, AB, T2N 4N1, Canada.
Katy Campbell: Department of Women and Gender Studies, Faculty of Arts, College of Social Sciences and Humanities, 3-51 Assiniboia Hall, Edmonton, AB, T6G 2E7, Canada.
Omar Abdel-Rahman: Medical Oncology Cross Cancer Institute and Department of Oncology, Faculty of Medicine and Dentistry, College of Health Sciences, University of Alberta, 11560 University Avenue, Edmonton, AB, T6G 1Z2, Canada.
Tracy Wildeman: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Lisa Vaughn: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Harkeert Judge: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Sadia Ahmed: Patient Engagement Team, Alberta SPOR SUPPORT Unit, 3280 Hospital Dr NW, Calgary, AB, T2N 4Z6, Canada.
Bisi Adewale: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
Iqmat Iyiola: Faculty of Nursing, College of Health Sciences, University of Alberta, Third Floor Edmonton, Clinic Health Academy, 11405 87 Avenue, Edmonton, AB, T6G 1C9, Canada.
BACKGROUND: cancer disparities are a major public health concern in Canada, affecting racialized communities of Latin American and African descent, among others. This is evident in lower screening rates, lower access to curative, and palliative-intent treatments, higher rates of late cancer diagnoses and lower survival rates than the general Canadian population. We will develop an Access to Palliative Care Strategy informed by health equity and patient-oriented research principles to accelerate care improvements for patients with advanced cancer of African and Latin American descent. METHODS: This is a community-based participatory research study that will take place in two Canadian provinces. patients and community members representatives have been engaged as partners in the planning and design of the study. We have formed a patient advisory council (PAC) with patient partners to guide the development of the Access to Palliative Care Strategy for people of African and Latin American descent. We will engage100 participants consisting of advanced cancerpatients, families, and community members of African and Latin American descent, and health care providers. We will conduct in-depth interviews to delineate participants' experiences of access to palliative care. We will explore the intersections of race, gender, socioeconomic status, language barriers, and other social categorizations to elucidate their role in diverse access experiences. These findings will inform the development of an action plan to increase access to palliative care that is tailored to our study population. We will then organize conversation series to examine together with community partners and healthcare providers the appropriateness, effectiveness, risks, requirements, and convenience of the strategy. At the end of the study, we will hold knowledge exchange gatherings to share findings with the community. DISCUSSION: This study will improve our understanding of how patients with advanced cancer from racialized communities in Canada access palliative care. Elements to address gaps in access to palliative care and reduce inequities in these communities will be identified. Based on the study findings a strategy to increase access to palliative care for this population will be developed. This study will inform ways to improve access to palliative care for racialized communities in other parts of Canada and globally.
