Implementing palliative care education into primary care practice: a qualitative case study of the CAPACITI pilot program.

BACKGROUND: CAPACITI is a virtual education program that teaches primary care teams how to provide an early palliative approach to care. After piloting its implementation, we conducted an in-depth qualitative study with CAPACITI participants to assess the effectiveness of the components and to understand the challenges and enablers to virtual palliative care education. METHODS: We applied a qualitative case study approach to assess and synthesize three sources of data collected from the teams that participated in CAPACITI: reflection survey data, open text survey data, and focus group transcriptions. We completed a thematic analysis of these responses to gain an understanding of participant experiences with the intervention and its application in practice. RESULTS: The CAPACITI program was completed by 22 primary care teams consisting of 159 participants across Ontario, Canada. Qualitative data was obtained from all teams, including 15 teams that participated in focus groups and 21 teams that provided reflection survey data on CAPACITI content and how it translated into practice. Three major themes arose from cross-analysis of the data: changes in practice derived from involvement in CAPACITI, utility of specific elements of the program, and barriers and challenges to enacting CAPACITI in practice. Importantly, participants reported that the multifaceted approach of CAPACITI was helpful to them building their confidence and competence in applying a palliative approach to care. CONCLUSIONS: Primary care teams perceived the CAPACITI facilitated program as effective towards incorporating palliative care into their practices. CAPACITI warrants further study on a national scale using a randomized trial methodology. Future iterations of CAPACITI need to help mitigate barriers identified by respondents, including team fragmentation and system-based challenges to encourage interprofessional collaboration and knowledge translation.

Gender and Trajectories of Marital Breakdown: Accounts of Chinese Immigrant Women in Canada.

The relatively sparse literature has documented various challenges international migration poses to martial stability, yet we know little about immigrant women's experiences with marital breakdown. Drawing data from a qualitative study of Chinese economic immigrants to Canada, this article explores women's experiences of navigating the processes of this life circumstance, and of how gender-including their senses of changing gender roles in post-immigration and postmarital contexts-plays out in these trajectories. The results of this exploratory study illustrate the value of transcending dichotomous conceptions of the relationship between gender and migration, and of opening spaces in which to better understand immigrant women's increasingly diversified life trajectories and the range of barriers they encounter along the way. The study also reveals multiple opportunities for social work contributions: tackling systematic barriers to settlement, facilitating social support in the community, and recognizing individuals' diverse trajectory potentials (including the potential for this typically unwelcome event to be integrated as personal growth and transition).

When 'Being There' Is Disallowed: Disruptions to Knowing and Caring During COVID-19 Visitor Restrictions.

This qualitative study explored the accounts of five health professionals working in hospitals in Hamilton, Ontario, Canada who provided end-of-life care during the COVID-19 pandemic. The study goal was to understand how palliative care providers experienced and responded to the significant change in family presence when visitors were restricted to slow the spread of the virus. Identified was the loss and disruption of important forms of knowing including observational and embodied knowing. Family members' knowledge of how their person was faring was curtailed, as was providers' capacities to know families personally. Family members' less obvious needs did not come forward as readily in the absence of informal encounters with providers. Constraints on knowing and embodied actions often meant phone and video meetings failed to provide meaningful connection. Providers adapted their practice in a range of ways, including by offering verbal and visual images of the person in the setting, paying attention differently, and conveying to family members their knowledge of patients as individuals. The changes and challenges health providers remarked on and the ways they adapted and extended themselves reveal in a new way how the regular presence of family in the care setting shapes the quality of end-of-life care.

Intimacy, identity and relationship in the accounts of Chinese immigrants to Canada: the contribution of narrative analysis.

In this paper we use narrative analysis to consider how the discursive resources that come with living 'in between' countries and cultures unfold in personal stories. We do this by presenting a close analysis of two transcripts drawn from a study about the vulnerability to HIV faced by Chinese immigrants to Canada. Our goal is to illustrate the application of narrative analysis and highlight the contributions it can make to conceptualising how transnationalism becomes consequential in accounts of intimate life. In narrative terms, transnationalism lends each life situation dual or multiple interpretive frameworks. Migrants from China to Canada situate their personal stories in relation to social and cultural norms and features of both nations. Yet, as our analysis makes apparent, 'Canada' and 'China' do not carry singular or consistent meanings in migrants' stories. Attention to the role of stories in self-making allows us to better understand why transnational contexts appear as they do in narrative accounts, and responds to calls for more accurate mappings of the interface between transnationalism and the subject. Attention to how stories are 'put together' shows that transnational discursive resources are assembled in ways that bolster, and also undermine, entitlements to safe and equitable intimate relationships.

Research in cancer care disparities in countries with universal healthcare: mapping the field and its conceptual contours.

The paper reviews published studies focused on disparities in receipt of cancer treatments and supportive care services in countries where cancer care is free at the point of access. We map these studies in terms of the equity stratifiers they examined, the countries in which they took place, and the care settings and cancer populations they investigated. Based on this map, we reflect on patterns of scholarly attention to equity and disparity in cancer care. We then consider conceptual challenges and opportunities in the field, including how treatment disparities are defined, how equity stratifiers are defined and conceptualized and how disparities are explained, with special attention to the challenge of psychosocial explanations.

Disparities in cancer care: perspectives from the front line.

OBJECTIVE: The purpose of this qualitative study was to investigate how frontline healthcare professionals witness and understand disparity in cancer care. METHOD: Six healthcare providers from a range of care settings, none with < 15 years of frontline experience, engaged with researchers in an iterative process of identifying and reflecting on equity and disparity in cancer care. This knowledge exchange began with formal interviews. Thematic analysis of the interviews form the basis of this article. RESULTS: Participants drew attention to health systems issues, the meaning and experience of discontinuities in care for patients at personal and community levels, and the significance of social supports. Other concerns raised by participants were typical of the literature on healthcare disparities. SIGNIFICANCE OF RESULTS: Providers at the front lines of care offer a rich source of insight into the operation of disparities, pointing to mechanisms rarely identified in traditional quantitative studies. They are also well positioned to advocate for more equitable care at the local level.

The ethics of engaged presence: a framework for health professionals in humanitarian assistance and development work.

In this article, we present an ethics framework for health practice in humanitarian and development work: the ethics of engaged presence. The ethics of engaged presence framework aims to articulate in a systematic fashion approaches and orientations that support the engagement of expatriate health care professionals in ways that align with diverse obligations and responsibilities, and promote respectful and effective action and relationships. Drawn from a range of sources, the framework provides a vocabulary and narrative structure for examining the moral dimensions of providing development or humanitarian health assistance to individuals and communities, and working with and alongside local and international actors. The elements also help minimize or avoid certain miscalculations and harms. Emphasis is placed on the shared humanity of those who provide and those who receive assistance, acknowledgement of limits and risks related to the contributions of expatriate health care professionals, and the importance of providing skillful and relevant assistance. These elements articulate a moral posture for expatriate health care professionals that contributes to orienting the practice of clinicians in ways that reflect respect, humility, and solidarity. Health care professionals whose understanding and actions are consistent with the ethics of engaged presence will be oriented toward introspection and reflective practice and toward developing, sustaining and promoting collaborative partnerships.

Of time and troubles: patient involvement and the production of health care disparities.

Patient involvement in care practice has many and diverse proponents. It is endorsed by health care institutions and promoted by community agencies representing people with illness. A vast literature documents the benefits of patient involvement and describes ways to enable it. This article contributes to a critical literature on patient involvement by documenting the work done by women with cancer in relation to care timelines and in responding to troubles with care. We highlight continuities and disjunctures between this work, and discourses of patient involvement as they manifest in documents circulating at an Ontario cancer centre. In making visible the social and material resources that underpin successful involvement, the study shows how initiatives that endorse and promote 'the involved patient' can function to exacerbate health care and social disparities. As well, the study extends analysis of the individualization and privatization of health by showing how contemporary discourses of involvement enlist patients to monitor and sustain not only their own health, but also the health care they receive.

Tragic choices in humanitarian health work.

Humanitarian healthcare work presents a range of ethical challenges for expatriate healthcare professionals, including tragic choices requiring the selection of a least-worst option. In this paper we examine a particular set of tragic choices related to the prioritization of care and allocation of scarce resources between individuals in situations of widespread and urgent health needs. Drawing on qualitative interviews with clinicians, we examine the nature of these choices. We offer recommendations to clinical teams and aid organizations for preparing and supporting frontline clinicians in their efforts to determine the least-worst option, and in their responsibility for making such choices.

Using institutional ethnography to understand the production of health care disparities.

Questions of health care access and equity are often examined by researchers using quantitative approaches, describing patterns of service utilization. Articles based on such approaches often reveal relatively little about how health care services and resources come to be distributed as they are. Articles about qualitative research with marginalized people, although offering textured accounts of people's experiences of care, often do not systematically link felt troubles to specific features of health systems. Institutional ethnography, a method of inquiry developed over the past 25 years by Canadian sociologist Dorothy Smith and her colleagues, offers a useful resource for researchers exploring and addressing health care disparities. Drawing on previous research and a study in progress on cancer care in Ontario, Canada, I consider the potential of institutional ethnography to make visible how disparities are produced in the routine operation of health services.

"I like to be an informed person but..." negotiating responsibility for treatment decisions in cancer care.

Social expectations surrounding sickness have undergone a transformation in Western welfare states. Emerging discourses about patients' roles and responsibilities do not however always map neatly onto patients' actions, experiences or desires. This paper emerges from a study in Ontario, Canada. Drawing on in-depth interviews with 5 women diagnosed with breast cancer we explore the activity and effort prompted for patients by the routine professional practice of outlining treatment options and encouraging patients to choose between them. We highlight research participants' complex responses to their responsibility for treatment decisions: their accepting, deflecting and reframing and their active negotiation of responsibility with professionals. The literature on treatment decision making typically characterizes people who resist taking an active role as overwhelmed, misinformed about the nature of treatment decisions, or more generally lacking capacity to participate. In this paper we suggest that patients' expressions of ambivalence about making treatment choices can be understood otherwise: as efforts to recast the identities and positions they and their physicians are assigned in the organization of cancer care. We also begin to map key features of this organization, particularly discourses of patient empowerment, and evidence-based medicine.

"Below their notice": exploring women's subjective experiences of cancer system exclusion.

BACKGROUND: The experiences that marginalized breast cancer populations have in common are rarely considered. METHODS: The authors look across 3 qualitative studies to explore the experiences of older, lower-income, and Aboriginal women diagnosed with cancer and treated by the cancer care system in Ontario, Canada. RESULTS: The research examines critical moments in participants' narratives that parallel one another and are categorized within 2 themes: Not Getting Cancer Care and Not Getting Supportive Care. CONCLUSIONS: Although exploratory, the findings merit attention both for what they tell us about women's experiences, and because they suggest disparities in access to treatment and psychosocial support.

Audience responses to a research-based drama about life after breast cancer.

This article explores audience reactions to the research-based drama Ladies in Waiting? Life After Breast Cancer. Quantitative findings indicate an overwhelmingly positive response, with approximately 90% of those who saw the production agreeing that they benefited from seeing it and indicating that they would recommend it to others. Qualitative data reveal a more complex picture of the range of reactions, allowing us to describe the most valued aspects of the production (mainly how it eased isolation and normalized the difficult aspects of survivorship) and to better understand the few reports of distress. Audience responses to Ladies in Waiting? suggest that chronic aspects of breast cancer are rarely acknowledged. Viewing the production as one that reveals difficult and hidden realities allows for a fuller understanding both of its supportive and unsettling effects.

Community support, community values:the experiences of lesbians diagnosed with cancer.

The study reported in this article was initiated in response to the paucity of literature focused on Canadian lesbians with cancer. The aims of the study were broadly defined: to increase understanding of Canadian lesbians' experiences with cancer and cancer care, and to suggest directions for change such that lesbians with cancer might be better supported by service providers and lesbian communities. The qualitative study, set in Ontario, Canada, employed a participatory action research model. Twenty-six lesbians were interviewed about their experiences of cancer and cancer care. This article reports research participants' narratives about lesbian community. Findings reveal the complex and sometimes contradictory ways that lesbian community unfolds in the lives of lesbians with cancer. While most participants experienced robust and competent community support, participants also reported instances of isolation and disconnection linked to fear of cancer, homophobia in the broader community, and patterns of exclusion within lesbian communities. As well, while lesbian community norms and values appeared to buffer the negative effects of treatment-related physical changes, such norms also manifested as prescriptions for lesbians with cancer. Findings affirmed the value of creating networks among lesbians with cancer within a context of increased accessibility to mainstream cancer services.

The experiences of men receiving androgen deprivation treatment for prostate cancer: a qualitative study.

OBJECTIVE: This exploratory study was intended to investigate men's ways of integrating and understanding experiences with Androgen Deprivation Therapy (ADT), including how hormone treatment affected their sense of identity. PATIENTS AND METHODS: Twelve men, averaging 61 years of age and treated with ADT, participated in a single interview about their experiences with prostate cancer and hormone treatment. In keeping with a qualitative approach, questions were initially open-ended, with patients encouraged to describe experiences in their own words. RESULTS: Seven prominent themes appeared in the interviews: 1) starting on hormones, 2) matching expectations with reality, 3) tracking changes, 4) dealing with changes in sexuality, 5) navigating relationships, 6) putting things in context, and 7) interpreting gender-relevant changes. CONCLUSION: The effects of ADT on men with prostate cancer were varied and often substantial in their impact. Additionally, men often receive insufficient information to prepare them to deal with side effects. While the physiological situation of the men in our study could be described as "liminal" (i.e., straddled between two categories of gender), interview data showed that they refuse their liminality, claiming to be neither less masculine nor more feminine because of treatment. While men are grateful to receive potentially life-extending treatment, the challenge for the health care system is to provide them with the information and clinical support that will make their remaining years the best that they can be.

Homophobia and heterosexism in cancer care: the experiences of lesbians.

This participatory, qualitative study examines "what is lesbian" about lesbians' experiences of cancer and cancer care. Twenty-six lesbians were interviewed about their experiences of cancer diagnosis, treatment, and support, and their feelings and perceptions about shifts in identity, body, sexuality, and relationships. This paper highlights how homophobia and heterosexism, in contemporary nursing practice and as historical features of the health-care system, shape the experiences of lesbians with cancer. A minority of participants were targeted, denied standard care, or had aspects of their identity and social context relevant to cancer care dismissed. The majority commented on the lack of attention to lesbian realities in psychosocial support. A legacy of heterosexism appears to prompt strategic efforts to avoid homophobia and also appears to foster gratitude for equitable care. Nurse educators, practitioners, and policy-makers have critical roles to play in the accessibility of cancer care.

Disarmed complaints: unpacking satisfaction with end-of-life care.

Difficult health care encounters often do not translate into expressions of dissatisfaction with care. This paper focuses on the 'non-expression' of dissatisfaction with care in the accounts of 12 people in Canada who provided care to a relative or friend who died of breast cancer. The analysis foregrounded in this paper began from the observation that as difficult health care experiences were elaborated, speakers located health professionals' actions in relation to various situational factors, including the fact of a (cancer) death and conditions of constraint in the health system. Set alongside these two realities, expressions of dissatisfaction tended to be disarmed. Results of this study suggest that the cost of articulating dissatisfaction with care is high where the cared-for person has died, and the perceived value of focusing on difficult experiences is low. Further, respondents in this study took the specificity of the situation and the setting into account in formulating beliefs about the care outcomes for which health professionals could be held responsible. When conditions in the health system and the disease process of advanced cancer were positioned in talk as 'ultimate limits' on health professionals' actions, perceived lapses in care were excused.

"Because you know there's an end to it": caring for a relative or friend with advanced breast cancer.

OBJECTIVE: The aim of this paper is to delineate the particular nature of the end-of-life care experience from the perspective of family members and friends. Ideas drawn from feminist analyses of caring and the sociology of death and dying are used to illuminate study respondents' accounts. METHODS: Qualitative study with people who cared for a family member or friend who died of breast cancer. Two interviews were conducted with each of 12 study participants, and one carer responded by letter to a series of questions drawn from the interview guide. Accounts were analyzed with reference to grounded theory methods. RESULTS: The analysis presented here suggests that anticipating the death of an ill relative or friend generates imperatives to care, imperatives that are both "felt" and linked to wider social structures and processes. The value assigned to closeness with the ill person can be seen to reflect cultural injunctions toward a "good death," and to shape informal carers' perceptions of their labor. Also discussed in this paper are the complex negotiations undertaken by relatives and friends, for the life and death of someone with advanced cancer. SIGNIFICANCE OF RESULTS: This paper offers insight into the social processes of caregiving, revealing how care may be shaped in particular ways by an awareness of approaching death.