ABSTRACT
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.
Subject(s)
Palliative Care , Primary Health Care , Humans , Pilot Projects , Qualitative Research , OntarioABSTRACT
Long-term care homes (LTCHs) were impacted during the COVID-19 pandemic. With their ever-changing conditions and restrictions, care partners' roles in LTCHs changed drastically. In this cross-sectional study, an electronic survey was used to examine the experiences of care part-ners who were caring for one or more adults in an Ontario LTCH during the pandemic. The survey was circulated through social media (convenience sample) which produced a convenience sample of 81 caregiver participants. Visit characteristics and a comparison in the quality of care in LTCHs was analyzed before the pandemic as well as during the most restrictive times. Visitation lengths and frequencies, other sources of communication such as phone and video calls, and various types of care provided by caregivers such as personal grooming and personal care all decreased significantly during the pandemic. Care partners also reported that the health of their care recipients decreased significantly during restrictive visitation times. Through thematic analysis, we identified three themes: restrictions and changing LTCH conditions created (1) social isolation and an erosion of connection, (2) a communication breakdown, and (3) a lack of person-centered care. Findings from this research can promote the health and wellbeing of residents and care partners within LTCHs.
ABSTRACT
Two-spirit, lesbian, gay, bisexual, trans, and queer or questioning (2SLGBTQ+) older adults are underrepresented in gerontology research and education, impacting the preparedness of health and social care students and professionals working with the diverse aging population. To address this lack of representation of 2SLGBTQ+ older adults in gerontology education, this study explored the use of digital stories as tools for knowledge mobilization and social justice. Digital stories are short videos that pair audio recordings with visuals, including videos, photographs, or artwork. To conduct the study, the research team worked alongside 2SLGBTQ+ older adults to create a suite of three digital stories. These stories were presented at various educational and professional settings in gerontology, and survey and open-feedback responses (n = 147) were gathered from the audience on their perceived impact. Viewers included students, researchers, decision-makers, stakeholders, and citizens. Content analysis was used to analyze the data. From the analysis, digital stories showed the potential to increase viewers' awareness and understanding of 2SLGBTQ+ aging experiences. The format was particularly significant in their learning and enhancing the connection to the content and the storytellers. The findings also suggest that digital stories showed the potential to impact policy and practice for 2SLGBTQ+ communities.
Subject(s)
Geriatrics , Sexual and Gender Minorities , Female , Humans , Aged , Geriatrics/education , Learning , Social Support , Sexual BehaviorABSTRACT
OBJECTIVE: To explore physician experiences with medical assistance in dying (MAID). DESIGN: An exploratory qualitative research approach using thematic analysis. SETTING: Six communities in northwestern Ontario. PARTICIPANTS: Twenty-three physicians who perform, refer patients for, or are otherwise affected by MAID. METHODS: One semistructured focus group and one-to-one interviews, transcribed and analyzed thematically. MAIN FINDINGS: The legislation of MAID added a layer of complexity to the work of physicians in northwestern Ontario, as MAID requires physician leadership, knowledge, time, and careful implementation. Four themes were identified from the interviews that unpacked this additional layer of complexity: relationships, motivation, time and resources, and getting others on board. CONCLUSION: The logistics of health care delivery in northwestern Ontario communities are complex and layered, which contributes to the burden of physicians as they work to provide MAID.
Subject(s)
Physicians , Suicide, Assisted , Canada , Humans , Medical Assistance , Ontario , Qualitative ResearchABSTRACT
Promoting health and well-being for older adults is a priority among many jurisdictions worldwide. Canada's population is aging and becoming increasingly diverse; one axis of a diverse aging population is aging members of lesbian, gay, bisexual, transgender, queer, and two-spirit (LGBTQ2S+) communities. We sought to examine the lived experiences of older LGBTQ2S+ people in Canada to understand the barriers and facilitators to healthy aging among members of these communities. A total of 10 focus groups were held in 10 cities from across Canada. Sixty-one older LGBTQ2S+ people (Mean age = 67) participated in the study. Data were analyzed using a constructivist grounded theory approach. Through analysis, we identified themes related to the importance of community capacity, resources, resilience, and personal histories in shaping aging experiences. The findings highlight the importance acknowledging diverse sexual and gender identities and the role of the life course in developing and implementing approaches that promote healthy aging.
Subject(s)
Sexual and Gender Minorities , Transgender Persons , Aged , Canada , Female , Gender Identity , Humans , Sexual BehaviorABSTRACT
BACKGROUND: Options available to Canadians at the end of life increased with the legalization of medical assistance in dying (MAiD). Bill C-14 modified the Canadian Criminal Code allowing individuals who meet very specific criteria to receive a medical intervention to hasten their death. June 2019 marked 3 years since the legislation has changed and while met with favour from most Canadians who believe it will provide enhanced options for quality of life at the end of life, there remains much debate over both its moral implications and practical components. Little is known regarding the Canadian healthcare provider experience with MAiD, in particular in rural and remote parts of the country such as northwestern Ontario. OBJECTIVES: The purpose of this study was to explore physicians' experiences in Northwestern Ontario with MAiD. The geographic location of this study is of particular significance as physicians in rural and remote parts of Canada face unique challenges in the provision of high-quality palliative and end-of-life services. This qualitative research focused on developing a better understanding of physicians' perceptions and practices with MAiD, in particular regarding access, decision-making, provision of service and role clarity. METHODS: The researchers employed an exploratory qualitative research approach, using 1 semi-structured focus group and 18 semi-structured interviews comprising 9 set of questions. Data were collected through audio-taped semi-structured interviews, in person and by telephone. FINDINGS: Four distinct but interconnected themes emerged from thematic analysis of the transcripts of the focus group and interviews: physician perception of patient awareness, appreciation and understanding of MAiD; challenges providing true choice at end of life; burgeoning relationships between palliative care and MAiD; and physician recommendations. CONCLUSION: The results of this study provide a snapshot of the Northwestern physician experiences with MAiD and contribute to the growing body of work exploring these issues on a national scale. MAiD is highlighted as both a rewarding and challenging experience for physicians in Northwestern Ontario in this study.
ABSTRACT
OBJECTIVES: Educational interventions have the potential to equip healthcare providers to support diverse aging populations. The purpose of this research was to identify educational gaps hindering the provision of person-centered care to older adults who identify as LGBT. METHODS: Three focus groups were conducted in urban centers in northern, southern, and eastern Ontario with healthcare professionals and frontline staff. Semi-structured focus group discussion guides were developed based on the literature identifying some of the knowledge gaps, attitudes, challenges, and barriers around providing care for older LGBT adults. RESULTS: The focus group data revealed several key findings related to 1) lack of curricula within formal education; 2) the need to create safer physical and social environments; and 3) the need to build relationships with LGBT-focused groups/organizations. CONCLUSIONS: Care providers want to provide open space for sexual and gender diverse older adults but lack the knowledge to do so. CLINICAL IMPLICATIONS: There is an ongoing gap within formal education systems such that historically marginalized populations who are now aging may be systemically neglected within formal curricula.
Subject(s)
Health Knowledge, Attitudes, Practice , Health Personnel/education , Sexual and Gender Minorities , Adult , Aged , Canada , Female , Focus Groups , Geriatrics/education , Humans , Male , Middle Aged , Patient-Centered Care/standards , Young AdultABSTRACT
As lesbian, gay, bisexual, transgender, and queer (LGBTQ+) communities age, many individuals expect a need to enter the long-term care system toward the end of life. Not unlike most aging Canadians, this anticipation is met with concern and fear. However, previous research suggests that older LGBTQ + individuals have unique fears often related to personal safety and discrimination. This qualitative study examined the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Data were collected from three focus groups in Ontario, Canada, and analyzed using inductive thematic analysis. Specific and frequent reference to fear of entering long-term care homes was common across all focus groups, as participants anticipated: social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The results from this study, therefore, emphasize the need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to work toward allaying fears and creating supportive and inclusive long-term care environments.
Subject(s)
Long-Term Care/psychology , Sexual and Gender Minorities/psychology , Terminal Care/psychology , Aged , Aging/psychology , Decision Making , Female , Focus Groups , Humans , Male , Middle Aged , Ontario , Qualitative Research , Safety , Social Isolation , Social Stigma , Transgender Persons/psychologyABSTRACT
OBJECTIVE: International estimates suggest the presence of health inequalities among older sexual minorities (i.e., individuals who identify as lesbian, gay, or bisexual and are 65 years old or above). In this study, we investigated the presence of health inequalities among aging lesbian and bisexual females, as well as aging gay and bisexual males in Canada. METHODS: We used baseline data from the Canadian Longitudinal Study on Aging (CLSA) Tracking and Comprehensive cohorts to cross-sectionally compare self-reported physical and mental health indicators by sex and sexual orientation. Within our analysis sample of 51,208 Canadians 45 years old and over, 2% (n = 1057) of respondents identified as lesbian, gay, or bisexual. RESULTS: Compared to heterosexual female peers, lesbian and bisexual females had greater odds of heavy drinking (AOR = 1.8, 95% CI = 1.3-2.4) and being a former smoker (AOR = 1.5, 95% CI = 1.2-1.9). Gay and bisexual males had greater odds of reporting a diagnosis of cancer (AOR = 1.5, 95% CI = 1.0-1.9) and currently smoking (AOR = 1.5, 95% CI = 1.1-2.0), compared to heterosexual males. Female and male sexual minorities had greater odds of reporting mood disorders (including depression) and anxiety disorders relative to heterosexual peers of the same sex. CONCLUSION: These findings highlight the importance of considering both sex and sexual orientation when developing approaches to support the physical and mental health of a diverse aging population in Canada.
ABSTRACT
Canada is experiencing population aging, and given the heterogeneity of older adults, there is increasing diversity in late life. The purpose of this study was to help fill the research gaps on LGBT aging and end-of-life. Through focus groups, we sought to better understand the lived experience of older LGBT individuals and to examine their concerns associated with end-of-life. Our analysis highlights the idea that identifying as LGBT matters when it comes to aging and end-of-life care. In particular, gender identity and sexual orientation matter when it comes to social connections, in the expectations individuals have for their own care, and in the unique fear related to staying out of the closet and maintaining identity throughout aging and end-of-life. This study underscores the need to consider gender identity and sexual orientation at end-of-life. In particular, recognition of intersectionality and social locations is crucial to facilitating positive aging experiences and end-of-life care.
Subject(s)
Aging , Gender Identity , Sexual and Gender Minorities/psychology , Terminal Care/psychology , Aged , Aging/psychology , Fear , Female , Focus Groups , Health Services Needs and Demand , Hope , Humans , Male , Middle Aged , Ontario , Qualitative Research , Quality of Life , Social Isolation/psychologyABSTRACT
Lesbian, gay, bisexual, and transgender (LGBT) older adults face a number of challenges with respect to access to healthcare especially towards end-of-life. Through a systematic search and scoping review of the literature, we sought to answer two related research questions. In particular, the purpose of this scoping review was to determine the healthcare needs of LGBT older adults nearing end-of-life as well as the factors that contribute to a good death experience among older adults who identify as LGBT. A systematic search of electronic databases for articles published between 2005 and 2016 as well as screening for relevance resulted in 25 results. The data were charted and grouped according to the themes of: social support and chosen family, intimacy, health status, fear of discrimination and lack of trust, lack of knowledge and preparedness, and cultural competence in the healthcare system. The results suggest a role for health and social service workers in contributing to a positive care experience for LGBT older adults by becoming knowledgeable about the unique needs of this population and being unassuming and accepting of individuals' sexuality. Many of the articles reviewed collected data outside of Canada, limiting generalizability and highlighting a need for Canadian data on LGBT aging and end-of-life.
ABSTRACT
This article examines the development, implementation, and evaluation of a pilot project utilizing high-fidelity simulation (HFS) to improve frontline staff members' confidence and skills to communicate about death and dying in long-term care homes. The target group was unregulated care providers who provide palliative care for residents and their families. Eighteen participants engaged in the educational intervention and evaluation. Results supported the effectiveness of HFS as an educational tool for unregulated health care providers. Quantitative data showed statistically significant improvements in participants' self-efficacy scores related to communicating about death and dying and end-of-life care. Qualitative data indicated that the experience was a valuable learning opportunity and helped participants develop insights into their own values, beliefs, and fears providing end-of-life care. HFS is therefore recommended as an innovative training strategy to improve palliative care communication in long-term care homes.
Subject(s)
Communication , Education, Nonprofessional/methods , High Fidelity Simulation Training , Long-Term Care , Nursing Assistants/education , Attitude of Health Personnel , Death , Female , Humans , Male , Middle Aged , Nursing Assistants/psychology , Palliative Care , Patient Simulation , Pilot Projects , Program Development , Program Evaluation , Self Efficacy , Social Skills , Terminal CareABSTRACT
BACKGROUND: Death holds a significant place in societies despite not being a direct or first-hand experience for many. Fewer people now die in their homes surrounded by family, and we have distanced ourselves from death by geography and the medicalisation of death. Our understanding of dying and death is influenced by the communities we live in. AIM: Die-alogues is an initiative hosted by Hospice Northwest intended to support meaningful conversations about dying, death, life and living. The mission of Hospice Northwest is to support end-of-life care in our community. By engaging in open, easy and respectful discussions about death and dying ourselves, we can better prepare ourselves to care for others as they face their own dying and that of those they love. METHODS: Responding to an identified community need, we have partnered with community organisations including a music and dance studio, a leadership group and a research centre to facilitate this initiative. Our approach has been innovative and included a flash mob, Jeopardy games and various other strategies to facilitate and support community members' discussions of living until we die. RESULTS: Evaluations are positive. Our community has requested more opportunities for Die-alogues to continue. This initiative will hopefully expand in our region including within neighbouring First Nations communities. CONCLUSION: Our standing room only events demonstrate that our community wants to engage and be active participants in learning about dying and death and supporting one another. This presentation/poster will share some of the lessons learned from the Die-alogues community engagement process.