key: cord-1002582-izfxeh9y
authors: Grassau, Pamela; Stinchcombe, Arne; Thomas, Roanne; Wright, David Kenneth
title: Centering sexual and gender diversity within Compassionate Communities: insights from a community network of LGBTQ2S+ older adults
date: 2021-09-22
journal: Palliat Care Soc Pract
DOI: 10.1177/26323524211042630
sha: e834c56df5c9fdca3bbba3179ce3a0fd0d57f9d6
doc_id: 1002582
cord_uid: izfxeh9y

BACKGROUND AND RATIONALE: The Compassionate Communities movement emphasizes the importance of illness, disability, dying, caregiving, and grief across the lifespan and highlights the communal responsibility of caring for one another. There is a need to recognize and incorporate the needs of diverse communities within this movement and research on dying, caregiving and grief. An important axis of this diversity is related to individuals’ sexual orientation and gender identity. METHODS: As part of the early phases of Healthy End of Life Project Ottawa, a Compassionate Communities, community-based, participatory action research project, we held focus groups with older members of lesbian, gay, bisexual, transgender, queer, and two-spirit communities. Nine older lesbian, gay, bisexual, transgender, queer, and two-spirit people participated in the focus groups (mean age = 72 years). Data were analysed using an inductive, reflexive thematic approach. RESULTS: Through an iterative analysis process, we identified themes related to lifecourse experiences of trauma, the need for safety within care contexts, the importance of relationships and connection, as well as participants’ ability to ask for and receive help. A core tenet of Compassionate Communities involves responding to the needs of diverse communities with respect to aging, end-of-life, and grief. Our findings emphasize the importance of incorporating the voices of diverse sexual and gender identities and promoting health equity within Compassionate Community initiatives.

local streets and neighbourhoods as critical sites to build and promote compassion, care and connection for all, with a specific focus on people who are living with frailty, chronic and advanced illness, at the end-of-life, and those who are caregiving and/or grieving.

Compassionate Communities around the world share central tenets in working to address social change across core institutions and activities. How each community comes together, the community partners and organizations involved, and the ways in which each community develops, implements and evaluates their initiatives and approaches vary considerably. 2, [5] [6] [7] [8] One initiative that is gaining international attention is the Healthy End of Life Project (HELP). 6, 9, 10 Developed in Australia, HELP 'provides a comprehensive guide for building the community capacities and capabilities needed to form, maintain and sustain Compassionate Communities' (p. S75). 9, 11 HELP was initiated in a community located in the Dandenong Ranges of Victoria, Australia, and was centrally guided by community development principles, practices and action areas. 9 Strongly reflected in the early phases of data collection in the HELP project was the reluctance of carers to accept help when it was offered by family, friends and neighbors. This was the case almost without exception, even when the carer had regular access to family members and had a healthy network of friends. Declining offers of support was an instinctive response, made without considering the merit or value of the proposed offer of assistance, and irrespective of whether support was needed ..., equally problematic was that asking for help was not seen as an option. (pp. S75-S76) 9 Emphasizing social norms around accepting help, the outcome of the HELP project was a 'health promotion and community development framework to guide community driven initiatives' (p. 95). 6 HELP Ottawa, launched in 2019 with support from community and academic partners, is a community-based participatory action research project designed to develop a Canadian-focused HELP framework. Working with four community sites in Ottawa (Ontario, Canada), two community health centres and two faith communities, HELP Ottawa is determining what capacity building strategies work effectively for within each community site, and under what circumstances and contexts. Critically, we are examining the effectiveness, sustainability and the collective impact(s) that unfold when community health centres and faith communities, draw on public health palliative care approaches as they build their own Compassionate Communities.

Like many countries, Canada is experiencing population aging. 12 At the same time that Canada's population is aging, the need to recognize diversity within this aging population is connected to the impetus of Compassionate Communities and research addressing dying, caregiving and grief. [13] [14] [15] An important axis of this diversity is related to individuals' sexual orientation and gender identity. Members of lesbian, gay, bisexual, transgender, queer, and two-spirit (LGBTQ2S+) communities have unique lifecourse experiences relative to their majority peers, often involving minority stress experiences which impact health and health help seeking behaviour. In Canada, the aging experiences of older LGBTQ2S+ people have been impacted by distinct histories and contexts. Specifically, prior to 1969, homosexual acts were against the law, the gay purge systematically targetted members of LGBTQ2S+ communities in the federal public service, and the AIDS epidemic brought about loss, fear and increased stigma for members of these communities. 13 These lifecourse experiences are critical to understanding the health and end-of-life needs of LGBTQ2S+ older Canadians and implementing Compassionate Community initiatives that are inclusive, meeting the needs of diverse populations.

Existing evidence shows that LGBTQ2S+ older adults have lower household incomes, are more likely to be single, and are more likely to rely on rich social networks, often recognized as 'families of choice', for support and care needs. [16] [17] [18] In addition, LGBTQ2S+ older adults are more likely to experience minority stressors, such as stigma and discrimination, within and outside of healthcare settings, reducing their participation in society and compromising well-being. 19 Concurrently, evidence also points to the availability of resources among LGBTQ2S+ people through social supports, connection to community, self-acceptance, crisis-competence, and resilience. 20, 21 There is a small body of literature examining endof-life concerns among older LGBTQ2S+ people in Canada. For example, de Vries and colleagues 22 

The first phase of the HELP Ottawa project involved conducting interviews and focus groups with carers (formal care providers, and family, friends) and learning about individual and community networks that supported end-of-life care. As part of an initial community consultation, and in an effort to centre the voices of LGBTQ2S+ people from the outset of this larger project, our team held two focus groups with nine members of an In order to accommodate varying schedules, two focus groups were organized, and participants self-selected which focus group they attended. One focus group had seven participants, and the second focus group had two participants. Eight out of the nine participants completed a brief demographic questionnaire. Among participants who completed the questionnaire, ages ranged from 67 to 78 (mean age = 72) years. All participants had attended university and half of participants had a graduate degree (e.g. Master's or PhD). One participant reported their race as black while the other participants were white. Five participants reported their gender as women and their sexual orientation as lesbian; three participants reported their gender as men and their sexual orientation as gay. Four participants noted that they lived with a partner, while three participants lived alone, and one participant lived with others. Because one participant did not return a demographic form, we do not know how they identify their sexual orientation. 

Data were analysed using an inductive thematic approach involving in-depth engagement with the data. 25, 26 While thematic approaches and analysis are utilized in many different ways, our reflexive thematic analysis 25, 26 focused on the meaning that our participants ascribed to their experiences, how these meanings and understandings were situated within and across varying contexts, and our own subjectivity as researchers involved in this project. In team meetings, we openly discussed how our own identities were informing our reading of the data and our impressions of its significance. Drawing on a modified three-phase reflexive thematic analysis approach, the first phase of analysis focused on familiarization with the data and generating and crafting codes, as the transcripts were independently reviewed by different members of the team. In further constructing the codes, and in revising and defining the codes, the entire research team met to discuss similarities in their analysis and to decide on codes for further analysis. Unlike other forms of thematic analysis that draw on codebooks and interrater reliability, reflexive thematic analysis emphasizes deep engagement, reflexivity and close attention on how researchers code and engage with raw data. 27, 28 Drawing on codes as 'the building blocks for themes (larger) patterns of meaning' (p. 298) 29 themes were developed which reflected central and core elements unfolding across the data. In reflexive thematic analysis, 'themes are conceptualized as meaning-based patterns, evidence in explicit (semantic) or conceptual (latent) ways' (p. 848), 25 encouraging the researchers to actively engage with the multiple meanings and contexts arising in the data. In reviewing, developing and refining our themes, reflexive themes were identified that offered a nuanced understanding of participants' reflections on the needs and experiences of older LGBTQ2S+ peoples in relation to frailty, chronic and advanced illness, end of life, caregiving and grief and loss. Finally, we provided, 'a coherent and compelling interpretation of the data, grounded in the data' (p. 848). 25 To promote trustworthiness, all members of the research team reviewed the coding and the themes; discrepancies were resolved through a process of consensus. Furthermore, the consolidated criteria for reporting qualitative research (COREQ), a 32-item checklist for interviews and focus groups, was used to guide the study (See Supplemental Appendix A). Through this process, the themes outlined below were identified.

As individuals and also as members of a shared culture, LGBTQ2S+ people's lives are shaped in important ways by historical events, which in turn shape both individual and community responses P Grassau, A Stinchcombe et al.

journals.sagepub.com/home/pcr 5 to aging, death and grief. The group articulated links that need to be understood between the past and the present. In the following sections, we explore specific themes of past-present interaction, which emerged from these discussions.

For LGBTQ2S+ people, discrimination and oppression are not limited to a series of isolated moments. Rather, there is a constancy to these experiences, often beginning in childhood and then continuing through later life. As one participant explained: Other sources of trauma, however, were more specific to participants' geopolitical context. As the national capital of Canada, Ottawa acts as the focal point for government activities, with a full 20% of the region's labour force employed by the federal government. From the 1950s until the early 1990s, the Royal Canadian Mounted Police had a special unit devoted to removing members of LGBTQ2S+ communities from their employment with the Canadian government. This removal was organized in response to a purported threat that sexual minorities could be blackmailed by the Soviet Union and coerced into divulging government secrets. Police used surveillance, threats, and intimidation to obtain the names of sexual minority people in government. 30, 31 The participants described the long-lasting impact that such systemic homophobia, known as 'the purge', continues to have on Ottawa's LGBTQ2S+ community. The impact is exemplified in the following two passages:

I also think that the purge and impact of the fear and shame and grief that people lived with for such a long time in Ottawa, has an impact on everybody now. Even though we may not have been directly affected, we know people that were. Or we worked with people that were too afraid to, for example, get same sex benefits even when it was offered [ An additional source of trauma, described as occurring in the past and having an impact on end-of-life issues in the present, was abuse. It was noteworthy to us that abuse was only mentioned in our second focus group, which was a much smaller gathering that was attended only by women. The following two passages show a conversation between two participants on this topic. LGBTQ2S+ people are often othered through a dominant narrative that normalizes heterosexual and cis-gender identities. 32 When health challenges occur, they confront a healthcare system that was not designed for them, and consequently is often unable to meet their needs. The participants explained how this othering results in community-oriented approaches of support -out of sheer necessity. In other words, LGBTQ2S+ people look to one another to create safe spaces within illness, because everyone else looks away.

Because of past history within our community, people of our age who might become ill ... I think the first thing that goes through our mind is the community itself. Because it's always been the community who rallied. Especially during HIV AIDS, and especially with men, it was very often and probably the majority of times that their

LGBTQ family was the ones they looked to, received all the support, resources, etcetera. In the passage above, reference is made to the social isolation that many LGBTQ2S+ older adults experience. Isolation was seen as resulting, in part, from the fact that for some LGBTQ2S+ people, aging is something that is ignored. People therefore fail to establish connections that would otherwise better support health and well-being as they age.

Older gay men ... they will not admit that they are getting old. Participants considered whether having spaces to share and process each other's stories, such as the one described above for women, would be equally beneficial for men. Some participants suggested that men are less likely to engage with each other in such ways; that they internalize their angst, are uncomfortable with such explicit sharing of emotion, opting instead for connections that are more social in nature. One participant, however, disagreed with this assessment. The participants also reflected on the impact the current COVID-19 pandemic is having on such efforts to promote the visibility of LGBTQ2S+ seniors, further undermining opportunities for connection and aggravating isolation. As one participant suggested, using the metaphor of the closet, the isolation that a queer person experiences under pandemic quarantine has implications for broader experiences of isolation that result from being a sexual minority in a heteronormative world. Asking for -and receiving -help. The previous three themes, around trauma, safety and connection, illuminate some of the ways that life history and social positioning can be expected to influence queer experiences of aging, end of life and grief. In this section, we explore some of these experiences by focusing on stories participants told to us about asking for, and receiving, help. Wanting to acknowledge how each of these stories were shared within specific contexts and relationships and recognizing that asking for and receiving help is a relational activity that unfolds between people, we utilize a narrative approach 33, 34 in presenting these findings. A fourth participant, Grace, told us about several different experiences in which she and several other people formed a 'circle of support' around someone needing help. She characterized these experiences as 'extraordinary and powerful'. Belonging to such networks were incredibly meaningful, because of the 'bonding' that occurs among those within the circle, but also incredibly draining. The sheer exhaustion that results from caregiving, for Grace, necessitates the involvement of professional support. In her words, a layer of professional support would, 'back up and to really hold that circle, so that it can be protected'. In further explaining one of these caregiving circles that Grace had participated in, she told a story of negotiating a balance with her friend -the care recipient -between intimacy and respite. As Grace described, I'm just thinking of my other friend that I was living with her. We weren't partners, but we were friends and yeah. We had a group of us around her too. And one thing I remember that she said, she had a great palliative care doctor who came to see her and she said, I remember the doctor was talking about well bringing other people in and she said oh no. She said I have this great group friends and I said well actually I think you want to save your friends, I think you also need a lot of help. (Lesbian woman)

Each of these stories reveals something different about asking for and receiving help in situations of vulnerability. Doris's story raises questions around the intersections of queer identity and self-determination in terminal illness; while Sheila's and Ruth's stories both suggest -in very different ways -the impact that gaining or losing support from other LGBTQ2S+ people can have for peoples' experiences of end-of-life care and grief. Grace's story, meanwhile, reminds us that while informal caregiving within the LGBTQ2S+ community is 'extraordinary and powerful', it does not obviate the need for professional support. As these stories were raised by two lesbian women in each focus group, there are important questions to consider about how asking for and receiving care may be gendered.

In describing the ways that the LGBTQ2S+ community has and continues to support itself in relation to trauma, safety, and connection, our participants highlight its strength and resilience, and also its vulnerability. In other words, while stories of queer people being available and willing to support one another around health and wellbeing are rightfully inspiring, our participants were careful to point out what such stories also reveal about the lack of adequate support available to queer people within the mainstream healthcare system. For example, in reflecting about the ways that queer people helped one another at the heights of the AIDS crisis:

Back then you didn't have the time to stop and think ... if you were going to offer help, or ... ask for help ... It was hitting the ground running. [For the] gay men's community, our biggest allies were our lesbian sisters. They were the ones who came on board. We didn't trust nor did we have any reason to trust the medical system, the political system, the social support system, the religious system or our families. So people just dove in ... when they saw somebody who was ill or somebody's partner who was ill, it just happened ... Anybody who came through those early years, you literally did it without even thinking. It was like going through a war. (Gay man)

Although the participants described changes that have occurred in the intervening years, with respect to sensitivity of the healthcare system and to the dynamics of asking for and providing help among LGBTQ2S+ people themselves, this critical reflection on the ethics of expecting LGBTQ2S+ people to look after one another remains relevant today. As one of our participants plainly and poignantly stated:

We have a right to health and to care and appropriate care. We [shouldn't] have to continually make volunteer organizations as the stopgap. And I think we have to start demanding -demanding treatment for people who are suffering mental health issues because of whatever their situation is, but linked to being queer. (Gay man)

In the World Health Organization's Ottawa Charter for Health Promotion, 'fundamental conditions and resources are outlined as prerequisite for health: peace, shelter, education, food, income, a stable eco-system, sustainable resources, social justice and equity' (p. 1) 1 (emphasis added). Further articulated in The Compassionate City: A Charter of Actions is a specific reference to diversity as a core area to be advanced and strengthened:

All our compassionate policies and services, and the policies and practices of our official compassionate partners and alliances, will demonstrate an understanding of how diversity shapes the experience of ageing, dying, death, loss and care -through ethnic, religious, gendered and sexual identity through the social experiences of poverty, inequality, and disenfranchisement. (p. 81) 2

Strongly positioned within the statements above are central social justice and equity principles, urging an understanding of how diversity shapes end-of-life experiences through our social locations, identities and positionality, and importantly, how these elements are interwoven with social experiences of marginalization, structural vulnerabilities, inequity, and oppression. Further emphasized is the explicit focus on actively acknowledging, respecting and doing something about these inequities. This explicit focus on social justice and equity emphasizes the critical importance of Compassionate Communities actively engaging with social justice and equity within their initiatives. avoid re-traumatization. Rather than seeing trauma-informed practices as uniquely relevant for LGBTQ2S+ communities however, we encourage hospice and palliative care providers and services to embrace anti-oppressive, equitybased, and trauma-informed practices and policies as critically important for all patients, families, and community networks. 49, 51, 52 Furthermore, we believe that these practices and policies are also critical for the wellness, safety and resilience of health care providers, allied health providers, administrators, volunteers and students who work within hospice, palliative care. 53, 54 Consideration of how the past relates to the present is also valuable for considering the implications for LGBTQ2S+ health experience of societal changes that occur with time. In analysing narratives of HIV caregiving among gay men, Kia 55 theorizes that as HIV was transformed from a condition requiring short-term end-of-life care to longer-term support, experiences of marginalization in relation to systemic homophobia and HIV stigma transformed as well. Specifically, these now may 'occur routinely and diffusely across formal systems of care involved indefinitely in the provision of chronic care' (p. 497). 55 Thus, while expressions of homophobia and stigma may change with time, their existence as a force that affects LGBTQ2S+ health experience continues into the present. For example, in their interviews with an older lesbian woman (Esther) after the death of her wife (Cathy), Candrian and Cloyes 56 describe the insidious ways that LGBTQ2S+ people are harmed when seeking health-related help:

Cathy and Esther started noticing subtle changes with the way the nurse was interacting with them. The nurse came less frequently to their room and when he did, he spent noticeably less time in the room. The couple noticed that the nurse asked fewer questions than before, and the questions focused on medical needs rather than emotional ones. When the nurse did ask a question, very little eye contact was made with Esther and Cathy. As Cathy got sicker, she noticed the nurse's demeanor becoming more overt and negative when Esther disclosed their relationship status, and therefore their sexual orientation. Cathy got anxious about how far this behavior would go and how it might influence the treatment and care she and Esther would receive. At the next appointment, Cathy told Esther, 'Don't say anything about being married anymore'. (p. 2) 56 In this case, the couple decided to stop referring to themselves as married in all of their interactions with the healthcare system, which had important consequences. For example, after Cathy died, Esther was seen as a friend, not a wife of 33 years, contributing to disenfranchised grief. This example helps to underscore the contemporary relevance of a question that participants in our focus groups asked themselves in relation to seeking care -where can I go that is safe? It also highlights the importance, as discussed in our findings, of connection in supporting experiences of grief and loss among LGBTQ2S+ people. Communities. They call for increased interrogation by palliative care scholars of the gendered dimensions of caregiving, of symptom experience and treatment, and of providing and receiving palliative care support, while also accounting for how gender intersects with other axes of oppression and privilege. In our focus groups, participants did challenge each other on their own interpretations regarding gender differences in help seeking behaviours by, for example, disagreeing with one another around the discourse that men engage less than women in emotionfocused support. We also noticed that in holding one focus group that was attended only by women, different topics were raised (e.g. abuse). Importantly however, while OSPN represents a large group of older LGBTQ2S+ people with diverse identities, participants in our focus groups were gay men and lesbian women. Existing evidence highlights the distinct needs of transgender people, and the ways in which their needs, concerns, and ultimately identities are erased within prevailing systems of knowledge production and service delivery. 58 It is important for Compassionate Communities, including projects such as ours, to centre their voices and consider their needs. Moreover, most of our participants were white, and had attended university, and while they reported varying levels of reported incomes, inequities related to socioeconomic status did not feature strongly in their discussions. Intersections between structural vulnerability and palliative care, for example, the unique experiences of LGBTQ2S+ people living in poverty, who are racialized, and/or who use drugs, are increasingly being recognized by palliative care scholars as a core area of focus for our field 59 and will be an important area of follow-up over the course of our project.

Geography is another limitation. Our focus groups took place in Ottawa, Ontario, which is a focal point for the federal public service where LGBTQ2S+ have unique lived experiences. As mentioned in the focus groups, 'the purge' is a specific historical event which took place largely in this region. Although the specifics of our participants' experiences related to 'the purge' will have limited transferability to other contexts, they call attention to how lifecourse experiences that are specific to local contexts do inform end-of-life needs.

In reflecting on the narratives of older LGBTQ2S+ people about receiving and providing help, and the sharing of such narratives through research projects such as ours, it is important to consider the implications that such narratives and their retellings have for broader cultural understandings of LGBTQ2S+ people. Explicating the influence of trauma and discrimination is important in understanding how many LGBTQ2S+ experience aging, end of life, and grief. At the same time, however, this focus risks perpetuating an overly narrow interpretation of the lives of sexual and gender minority people. In a recent analysis of how older LGBTQ2S+ people are represented in Canadian news media, for example, Hurd and colleagues 60 found older LGBTQ2S+ people are depicted in news stories in one of two forms: victims of discrimination and marginalization, or extraordinary and resilient role models. In theorizing the implications of these portrayals, they write that 'the type casting of older LGBTQ persons into one of two cultural options [victims and success stories], obfuscated, if not denied, the positioning of queer old people as ordinary folk'. 60 Importantly, in our focus groups, participants did speak about their lives in ways that transcended these two discursive framings, centering the more 'ordinary' dimensions of end-of-life experience. Grace told us a story about caring for a friend who was not a romantic partner, and described her negotiating with this friend around whom to include in the caregiving circle. Stories such as Grace' s reveal how LGBTQ2S+ narratives of end-of-life caregiving are unique and ordinary all-at-once. 

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The authors would like to acknowledge Ottawa Senior Pride Network (OSPN), for partnering with HELP Ottawa in this work, and specifically we thank the participants who shared their critical insights and experiences within these focus groups. The authors would also like to acknowledge Hayley Miloff, HELP Ottawa Project Coordinator and Christine Klerian-Rodriguez, HELP Ottawa Community Facilitator, who were centrally involved in this work. The authors also acknowledge the critical role of Compassionate Ottawa as the core sponsor of HELP Ottawa, and the Mach-Gaensslen Foundation of Canada for their generous funding and support of this project.

The authors declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article.

The authors disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work was funded and supported by the Mach-Gaensslen Foundation of Canada and Compassionate Ottawa.