Increasing access to palliative care for patients with advanced cancer of African and Latin American descent: a patient-oriented community-based study protocol.

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 cancer patients, 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.

Improving access to palliative care for people experiencing socioeconomic inequities: findings from a community-based pilot research study. / Améliorer l'accès aux soins palliatifs pour les personnes confrontées à des iniquités socioéconomiques : conclusions d'une étude pilote de recherche communautaire.

INTRODUCTION: In Canada, people experiencing socioeconomic inequities have higher rates of late diagnosis and lower survival rates than the general population. Palliative care services focussed on this population are scarce. We developed a community-based nursing intervention to improve access to palliative care for people experiencing socioeconomic inequities and living with life-limiting illnesses in an urban Canadian setting. METHODS: This community-based, qualitative research study combined critical and participatory research methodologies. The study was conducted in partnership with the Palliative Care Outreach Advocacy Team (PCOAT) based in Edmonton, Alberta, a team dedicated to serving populations experiencing socioeconomic inequities who require palliative care. Following an exploratory phase that served to delineate the intervention, we undertook a one-year pilot implementation during which a part-time registered nurse (RN) joined PCOAT. The RN engaged in trust building, resolution of health and practical needs and complex care coordination. Twenty-five patients participated in the intervention. Participants were interviewed at least once to explore their experiences with the intervention. Data were analyzed through thematic analysis. RESULTS: Most participants were men, were Indigenous and had advanced cancer. Participants had significant financial concerns, lived or had lived in precarious housing situations and had previously faced serious challenges accessing health care. Participants reported social and health needs including housing, finances, transportation, symptom control, harm reduction and end-of-life care. Participants reported improved access to health and social services and expressed satisfaction with the study intervention. CONCLUSION: Study findings suggest the study intervention may have contributed to improved access to palliative care, improved experiences for participants and increased equity in the delivery of care.

Social disparities and symptom burden in populations with advanced cancer: specialist palliative care providers' perspectives.

Disparities in access to palliative care services for populations with social disparities have been reported in Western countries. Studies indicate that these populations tend to report higher symptom distress than other population groups. We need to further investigate how social disparities influence symptom burden to improve symptom relief in these populations. PURPOSE: To examine the perspectives of specialist palliative care providers concerning the relationship between social disparities and symptom burden in populations with advanced cancer. METHODS: Two sequential qualitative studies that followed a combination of interpretive and critical methodologies. The interpretive approach was outlined by van Manen's hermeneutic phenomenology while the critical component was informed by the works of Paulo Freire. Participants involved two specialist palliative care teams from a large acute care hospital and a large cancer center in Western Canada. Participants included 11 palliative care providers including registered nurses, nurse practitioners, physicians, and pharmacists. RESULTS: Participants perceived that social conditions that might aggravate symptom burden included low income, low education, lack of social support, language barriers, and rurality. The relationship between income and symptom burden reflected diverse views. Participants identified populations prone to complex symptom burden including homeless individuals, Indigenous people, people with a history of addictions, and people with mental health or psychosocial issues. CONCLUSION: Participants perceived that social disparities may increase symptom complexity in populations with advanced cancer. Participants did not identify ethnicity and gender as influencing symptom burden. Further research is needed to examine the interactions of social disparities, patient individuality, and symptom burden.