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.

'Sand in the works?' Infrastructural affordances and life with dementia in the community.

The social health of people living with dementia is a more recent addition to the dementia research agenda; to date conceptions of the problem and solutions have relied on underdeveloped theorisations of sociality and social inclusion. In this article, using a material-semiotic approach to care practices and infrastructure, we use an ethnographic case study of one family of a person living with dementia using a day programme and home care supports over a period of 9 months, to examine how infrastructural arrangements provide particular affordances for social relatedness for people living with dementia in the community. The aim of the analysis is to consider how the infrastructural affordances created by the organisation of care may create spatially bounded lives and limit the subject positions available for people living with dementia and their families. It is these narrowed positions of dwelling that we argue may be the necessary starting place for thinking about the social health of people living with dementia and the solutions that might be helpful for them.

Problematising assumptions about 'centredness' in patient and family centred care research in acute care settings.

Over the last two decades significant efforts have been made to implement patient and family 'centred' care as both a practical and moral imperative for adult acute care delivery. Although many resources have been developed and adopted by institutions, research suggests persistent and diverse barriers to implementing and achieving patient and family 'centred' care in adult acute care practice settings. These issues in implementation suggest re-examining the nature of 'centredness' in care may be useful. A structured problematisation method, as outlined by Alvesson and Sandberg, is utilised to identify and analyse assumptions about the central notions of 'centring' that inform patient and family centred care intervention research. From our analysis, we highlight three predominant areas within 'centring' intervention research that may benefit from rethinking: Vitruvian spatiality, democratising care, and 'centring' positioned as primarily a problem and accomplishment for nursing. As a challenge to these assumptions, we argue for the adoption of theoretical lenses that 'de-centre' individual actors to better account for complex relations among multiple actors, both human and nonhuman, which work to involve patients and families in care practices.