Inequities in access to palliative and end-of-life care in the black population in Canada: a scoping review.

BACKGROUND: Improving equity and early access to palliative care for underserved populations in Canada is a priority. Little is known regarding access to palliative and end-of-life care in the Black population. METHODS: We undertook a scoping review using the framework by Arksey and O'Malley to identify knowledge, access gaps, and experiences of palliative and end-of-life care among Blacks living with life-limiting illnesses in Canada. Primary studies, discussion papers, books, and reports were considered eligible. We followed a comprehensive search strategy developed by an information scientist. Searches were performed in the following bibliographic databases: Medline, EMBASE, PsycINFO via OVID, CINAHL via EBSCOhost, Scopus and Cochrane Library via Wiley. The search strategy was derived from three main concepts: (1) Black people; (2) Canada and Canadian provinces; (3) Palliative, hospice, or end-of-life care. No publication date or language limits were applied. Titles and abstracts were screened for eligibility by one reviewer and full text by two independent reviewers. RESULTS: The search yielded 233 articles. Nineteen articles were selected for full-text review, and 7 articles met the inclusion criteria. These studies were published between 2010 and 2021, and conducted in the provinces of Ontario and Nova Scotia only. Studies used both quantitative and qualitative methods and included cancer decedents, next of kin, family caregivers and religious leaders. Sample sizes in various studies ranged from 6 - 2,606 participants. Included studies reported a general lack of understanding about palliative and end-of-life care, positive and negative experiences, and limited access to palliative and end-of-life care for Blacks, across all care settings. CONCLUSION: Findings suggest limited knowledge of palliative care and inequities in access to palliative and end-of-life care for Blacks living with life-limiting illnesses in 2 Canadian provinces. There is an urgent need for research to inform tailored and culturally acceptable strategies to improve understanding and access to palliative care and end-of-life care among Blacks in Canada.

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.

Nurse-led adult palliative care models in low- and middle-income countries: A scoping review.

AIMS: To map evidence on the nature and extent of use of nurse-led palliative care models in low- and middle-income countries serving adults with life-limiting conditions. DESIGN: A scoping review of the literature was undertaken. DATA SOURCES: A systematic search was performed from database inception to March 2022 in: Medline, EMBASE, CINAHL, Wiley Cochrane Library, SCOPUS, Web of Science, SciELO and Global Health. Main search terms included: Nurse-led AND Palliative care AND Low-and middle-income countries. Grey literature was searched from Proquest Dissertations and Theses Global, the World Health Organization and selected palliative care websites. We searched the reference list of included articles for additional studies. REVIEW METHODS: We used the framework by Arksey and O'Malley and the PRISMA-ScR guidelines. Titles and abstracts were screened by one reviewer and full text by two reviewers. Thematic analysis was used to synthesize data and results are presented descriptively using themes and categories. RESULTS: Eighteen studies were included, with majority from Sub-Saharan Africa (10/20). Three nurse-led palliative care models emerged: nurse-led empowering care, nurse-led symptom control and nurse-led multicomponent palliative care. They served particularly cancer and HIV patients and were delivered in person or by telehealth care. Reported outcomes were adherence to therapy, improved self-care ability, improved quality of life and increased access to palliative. CONCLUSIONS: The use of nurse-led palliative care in low- and middle-income countries is in its developing stages and seems feasible. Nursing roles in in low- and middle-income countries need to be expanded by developing advanced practice nurses and nurse practitioner programmes, with palliative care content. More impact evaluation studies on the use of nurse-led palliative care models in these countries are needed. IMPACT: This review highlights nurse-led care models that can enhance access and quality of life of patients with life-limiting conditions in low- and middle-income countries.

Coping strategies and quality of life among Thai family carers of community-dwelling persons living with dementia: A cross-sectional study.

AIMS: To examine the association between coping strategies and quality of life (QOL) among Thai family carers of persons living with dementia. DESIGN: A descriptive correlational quantitative design. METHODS: Data were collected between January 2021 and April 2021. A multi-pronged approach for recruitment was used. Participants completed measures assessing carer demographic characteristics, coping styles, QOL, perceived stress and perceived social support. Hierarchical multiple regression analysis was used to determine the association between types of coping strategies used and QOL scores, adjusting for carer characteristics and carers' stress and social support. RESULTS: There were 86 participants (mean age 52.84 years), and the majority were female (87.2%). After adjusting for covariates, hierarchical multiple regression revealed that only positive emotion-focused coping demonstrated a statistically significant association with total QOL scores. Problem-focused coping and negative emotion-focused coping were not significantly associated with total QOL scores of Thai family carers of persons living with dementia. CONCLUSION: Positive emotion-focused coping was associated with improved QOL scores. This finding supports the use of positive emotion-focused coping in Thai family carers of persons living with dementia, which potentially could improve the QOL of this population. IMPACT: It is essential to differentiate between positive and negative emotion-focused coping to generate valid estimates of the association between coping and QOL. Nurses should encourage carers to use positive emotion-focused coping strategies as these strategies were found to be helpful in enhancing carers' QOL.

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.

A critical review of social and health inequalities in the nursing curriculum.

CONTEXT: Social and health inequalities are a reality around the world and one of the most important challenges in the current age. Nurse educators can respond to these challenges by incorporating curricular components to identify and intervene in social and health inequalities. OBJECTIVE: To examine how social and health inequalities have been addressed in the nursing curriculum. DESIGN: Informed by the work of Paulo Freire, a critical literature review was performed to examine how social and health inequalities have been addressed in the nursing curriculum. DATA SOURCES AND REVIEW METHODS: In July 2015, we searched for articles published from 2000 to 2015 in ERIC, CINAHL, Web of Science, Scielo, MEDLINE and LILACS databases. Main search terms included "disparity" or "inequality" and "curriculum" and "nursing." We included studies published in academic journals in English, Portuguese and Spanish. RESULTS: A total of 20 articles were included in this review. Most of the articles (15) were from the United States and described educational experiences in implementing courses in nursing undergraduate curricula. Limited experiences with graduate nursing education were identified. Social and health inequalities were approached in these articles through elements such as social justice, cultural competence, cultural safety, and advocacy. A concern to reduce social and health disparities was noted. We identified three major themes in the articles included in this review: 1) elements in the curricula that can contribute to reducing social and health inequalities; 2) educational and research strategies used to address the theme of inequalities; 3) a focus on socially vulnerable populations to increase awareness on social and health inequalities. CONCLUSION: Findings suggest that nursing education initiatives align with the recommendations from the World Health Organization to address disparities. There is also a need to identify existing conceptual and practical content on inequalities in the nursing curriculum through future research.

Developing Navigation Competencies to Care for Older Rural Adults with Advanced Illness.

Navigators help rural older adults with advanced illness and their families connect to needed resources, information, and people to improve their quality of life. This article describes the process used to engage experts - in rural aging, rural palliative care, and navigation - as well as rural community stakeholders to develop a conceptual definition of navigation and delineate navigation competencies for the care of this population. A discussion paper on the important considerations for navigation in this population was developed followed by a four-phased Delphi process with 30 expert panel members. Study results culminated in five general navigation competencies for health care providers caring for older rural persons and their families at end of life: provide patient/family screening; advocate for the patient/family; facilitate community connections; coordinate access to services and resources; and promote active engagement. Specific competencies were also developed. These competencies provide the foundation for research and curriculum development in navigation.

Non-pharmacological cancer pain interventions in populations with social disparities: a systematic review and meta-analysis.

INTRODUCTION: Global advances in pain relief have improved the quality of life of cancer populations. Yet, variation in cancer pain outcomes has been found in populations with social disparities compared to mainstream groups. Populations with social disparities bear an inequitable distribution of resources such as ethnic minorities, low income individuals, and women in vulnerable circumstances. RESEARCH PURPOSE: A systematic review and meta-analysis of the effect of non-pharmacological cancer pain interventions in cancer populations with social disparities of income, ethnicity, or gender. METHODS: Randomized controlled trials, controlled trials, and before and after studies were targeted through comprehensive multidatabase searches. Two reviewers independently screened titles/abstracts for potentially relevant studies and reviewed the full text of relevant articles for inclusion. Data were extracted from included studies by one reviewer and verified by another reviewer. Four reviewers independently completed quality assessment. Studies were grouped by intervention. Effects were evaluated for heterogeneity and pooled. RESULTS: The search found 5219 potential records. Full text of 26 reports was evaluated. Three randomized controlled trials (RCTs) met inclusion criteria, targeting ethnic minorities and underserved populations and/or women. Interventions included education, coaching, and online support groups. Studies found no significant differences in pain reduction between intervention and control groups or between ethnic minorities and their counterparts. A high risk of bias was found in all studies. Meta-analysis found no statistically significant difference on pain intensity among underserved groups, ethnic minorities, or between ethnic minorities and white counterparts. CONCLUSION: Results show the need to examine supportive care interventions particularly in populations with social disparities.

The politics of corruption, inequality, and the socially excluded.

In this article, the production of knowledge in the context of socially excluded people exposed to inequality, oppression, and exploitation is problematized. The analysis follows Enrique Dussel's philosophical exegesis of the politics of power and corruption and his vision of a critical transformation of the social political order. The argument is also informed by the work of critical educator Paulo Freire, who elucidates the conditions of oppression and marginalization and highlights the importance of conscientization to develop a critical awareness of these conditions. Hannah Arendt's work on the politics of understanding totalitarianism also assists in the elucidation of the machinery that operates behind oppression to sustain power and inequality. The article emphasizes the need to recognize the inequality of conditions that exists between the producer of knowledge and those who live through inequality and oppression in their lived corporality. A critical transformation of the process of production of knowledge is needed to both acknowledge the conditions that sustain this endeavour in the first place and avoid the corruption of knowledge. A work of conscientization is also necessary among knowledge producers to undertake a critical analysis of inequality that exposes the corruption of power. This analysis needs to examine and unmask the hidden mechanisms that perpetuate inequality and oppression and serve only the interests of a few. The abysmal gaps between the wealthy and the poor within and among countries bespeak a degree of human indifference that reflects a most serious and complex phenomenon that perverts something profoundly human in our societies.

Ethical openings in palliative home care practice.

Understanding how a nurse acts in a particular situation reveals how nurses enact their ethics in day-to-day nursing. Our ethical frameworks assist us when we experience serious ethical dilemmas. Yet how a nurse responds in situations of daily practice is contingent upon all the presenting cues that build the current moment. In this article, we look at how a home care nurse responds to the ethical opening that arises when the nurse enters a person's home. We discuss how the home presents the nurse with knowledge that informs the provision of ethical nursing care. The analysis is based on findings from an interpretive research study in palliative home care in Canada. Through interpretive analysis of a nursing situation we delineate how the nurse engages with the whole and acts inside the moment. The analysis shows how home care nurses are ethically determined to engage with whatever is going on in a patient's home.

Understanding the provision of palliative care in the context of primary health care: qualitative research findings from a pilot study in a community setting in Chile.

UNLABELLED: This pilot study looked at the provision of palliative care in the context of primary health care in a developing setting in Chile. RESEARCH OBJECTIVES: The study aimed to delineate the experience of palliative care from the perspective of patients and health care professionals; to examine primary health care as a propitious milieu for palliative care in developing countries; and to generate opportunities for international collaboration between Chile and Canada. METHODOLOGY: The study followed tenets of hermeneutic phenomenology and participatory research. Research activities included audio-taped, in-depth individual interviews and participant observation in the home. RESULTS: Patients expressed contentment with the services provided by the program. The support of family members, friends, neighbours, and the palliative team was critical to their home care. Health care professionals showed great enthusiasm for keeping the palliative care program going in the primary health care setting despite limited resources. They followed WHO and national guidelines for symptom relief and involved families in the care of the sick person. CONCLUSION: The provision of palliative care through primary health care increases access in developing countries.

Toward a North-South dialogue: revisiting nursing theory (from the South).

In nursing, the current world situation calls us to revisit our knowledge schemes and revise the extent to which they assist us in improving the health of the world peoples. In this discussion, I offer a Latin American nursing perspective to knowledge development in our discipline. I suggest that a persistent concern to develop elaborate conceptualizations has distracted our attention from the realities practicing nurses face throughout the world. In their abstractness, (North) American nursing theories have conveyed a view that presumingly universal imposes itself as hegemonic in the international nursing community. Yet the exportation of these theories to other countries introduces a view that is foreign to practicing nurses. The world situation as well as the disparate and concurrent human paths that we witness and experience calls for approaches that are more in tune with the local realities of nursing practices.

Imagen corporal en mujeres operadas por cáncer de mamas / Body image in women with breast cancer surgery

Investigación descriptiva transeccional diseñada con el propósito de conocer las variaciones de la imagen corporal en mujeres operadas por cáncer de mama según variables terapéuticas y sociodemográficas. Se estudian 39 pacientes procedentes del Centro de Diagnóstico de Enfermedades de las Mamas y del Hospital Guillermo Grant Benavente de la ciudad de Concepción, sometidas a cirugía conservadora (n=19) y radical (n=20) entre los años 1993 y 1994. El 84,6 por ciento de la muestra correspondió a estadios I y II, la edad promedio fue de 55.1 años y el tiempo transcurrido postcirugía medio, de 15.7 meses. La evaluación se efectuó en forma individual durante los meses de abril a agosto de 1995 en el propio centro de control. La ausencia de diferencia significativa en relación a la imagen corporal según el tipo de cirugía fue uno de los hallazgos más sorprendentes, sin embargo, el análisis posterior mostró algunas diferencias en ambos grupos. La presencia de una pareja estable, el número de hijos, el nivel instruccional y el nivel de ingresos se asociaron significativamente con la imagen corporal. Se concluye que la imagen corporal de mujeres operadas por cáncer de mama tiende a variar más bien en relación a variables sociales que terapéuticas y se destaca la importancia de dirigir la atención de enfermería al grupo total de mujeres operadas, considerando la presencia de personas significativas en su rehabilitación