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Background: The core to successful advance care planning (ACP) facilitation is helping people determine their values, beliefs and wishes, and understand substitute decision-making. Recognizing the potential for community members to support public awareness and education we developed a model of ACP education, whereby peer facilitators associated with community organizations host workshops that educate and assist members of the public with ACP. Objectives: Describe the development and evaluation of the model for community-led peer-facilitated ACP workshops for the public. Design: Descriptive mixed methods. Methods: A training curriculum and program model were co-developed with two community organizations that had been successful in delivering ACP workshops independently in their communities. Herein we describe a mixed-methods evaluation of three cycles of implementation and improvement of the model. Results: The model centers on three key concepts; the right content (based around three steps Think, Talk, Plan), the right facilitator, and the right approach. A suite of tools was designed to support the three groups involved in the delivery of the ACP workshops: the public participants, the peer facilitators, and the community-based organizations. The peer-facilitator training addresses the facilitator's learning needs of ACP content knowledge, facilitation skills, and understanding change behavior. Training evaluation data from 106 facilitators confirmed that the curriculum prepared them to facilitate the workshops. Qualitative data revealed that support from organizations with established reputations in their community is critical, with mentoring from more experienced facilitators beneficial. Conclusion: Our model demonstrates the potential of community-led, peer-facilitated ACP initiatives to enhance the capacity of community to upstream ACP conversations. Reaching a broader audience and creating a supportive, inclusive environment for individuals to comfortably learn about ACP can drive the much-needed culture shift to normalize ACP. Meaningful community engagement, empowerment, and partnerships are essential for the successful development and widespread impact of these initiatives.
A model for community-led peer-facilitated advance care planning workshops for the public Why was this study done? Advance care planning (ACP) allows people to reflect on and share their personal values, goals and preferences as they relate to their future healthcare. Despite the benefits of doing ACP, the number of people who have engaged in ACP remains low. Traditionally, most ways of supporting people to engage in ACP have involved healthcare providers. In British Columbia, two community-based organizations had developed successful peer-facilitated workshops to engage and educate the public. In these workshops, non-expert members of the community (peer-facilitators) conduct interactive workshops that help members of the public understand and begin ACP. What did the researchers do? We partnered with these two organizations to develop a training curriculum and other materials required to spread this approach to other community organizations throughout the province. The model is based on three key concepts: the right content, the right facilitator, and the right approach. The materials include a suite of tools for three groups: the public participants, the peer-facilitators and the organizations. What did the researchers find? The training and suite of tools we developed successfully prepared community members ("peers") associated with community organizations to facilitate ACP workshops for the public. Support from community organizations is essential, and mentoring from more experienced facilitators is beneficial. What do the findings mean? As a provincial organization we were able to successfully partner with community organizations to develop a model and spread the workshops provincially and confirm they were acceptable and effective, improving public access to information about advance care planning.
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BACKGROUND: Advance care planning (ACP) is a process intended to help ensure people receive medical care that is consistent with their values, goals, and preferences during serious and chronic illness. Barriers to implementing ACP in primary care settings exist. Community-led ACP initiatives exist in British Columbia to engage the public directly. These initiatives may help prepare people for conversations with their primary care providers. The objectives of this study were to elicit primary care providers' perceptions of the utility and desired content of community-led ACP activities and suggestions for integrating community-led ACP activities with primary care. METHODS: We conducted an online cross-sectional survey of primary care providers practicing in British Columbia, Canada in 2021. Both quantitative and qualitative survey questions addressed ACP engagement in practice, the perceived role and desired outcomes of community-led ACP activities, and ways to integrate community-led ACP activities with primary care. RESULTS: Eighty-one providers responded. Over 80% perceived a moderate or greater potential impact of community-led ACP activities. The most common reasons for not referring a patient to a community-led ACP activity were lack of awareness of the option locally (62.1%) and in general (44.8%). Respondents wanted their patients to reflect on their values, wishes and preferences for care, to have at least thought about their goals of care and to have chosen a substitute decision maker in the community. They indicated a desire for a summary of their patient's participation and a follow-up discussion with them about their ACP. They suggested ways to integrate referral to programs into existing health care system structures. CONCLUSIONS: Community-led ACP activities were perceived to be useful to engage and prepare patients to continue ACP discussions with clinicians. Efforts should be made to establish and integrate community-based ACP initiatives within existing primary care systems to ensure awareness and uptake.
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Planificación Anticipada de Atención , Humanos , Estudios Transversales , Transporte Biológico , Colombia Británica , Atención Primaria de SaludRESUMEN
Objective: Despite recognized benefits, engagement in Advance Care Planning (ACP) remains low. Research into peer-facilitated, group ACP interventions is limited. This study investigated the acceptability of community-led peer-facilitated ACP workshops for the public and whether these workshops are associated with increased knowledge, motivation and engagement in ACP behaviors. Methods: Peer-facilitators from 9 community organizations were recruited and trained to deliver free ACP workshops to members of the public with an emphasis on conversation. Using a cohort design, workshop acceptability and engagement in ACP behaviors was assessed by surveying public participants at the end of the workshop and 4-6 weeks later. Results: 217 participants returned post-workshop questionnaires, and 69 returned follow-up questionnaires. Over 90% of participants felt they gained knowledge across all 6 learning goals. Every ACP behavior saw a statistically significant increase in participant completion after 4-6 weeks. Almost all participants were glad they attended (94%) and would recommend the workshop to others (95%). Conclusion: This study revealed an association of peer-facilitated ACP workshops and completion of ACP behaviors in public participants. Innovation: This innovative approach supports investment in the spread of community-based, peer-facilitated ACP workshops for the public as important ACP promotion strategies.
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It is common for the bereaved who are experiencing homelessness to be unrecognized grievers, who are then not adequately supported in their bereavement. This rapid review gathered published information from 17 references on how bereavement is experienced within the context of homelessness (from 509 references imported for screening). Four themes identified for understanding the bereavement experience were bereavement as a risk factor for homelessness, anticipatory grief, increased frequency of death, and ways of processing grief. Current practices used for support were themed into memorials, advocacy, and trauma-informed care. Themes for gaps and barriers to support were bereavement being systematically overlooked and environmental features present. The summary of findings is intended to help inform future research, policy, legislation, and cultural responses to grief and bereavement with the hope it may reduce people's grief from being disenfranchized.
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OBJECTIVE: Community-led approaches can increase public engagement in Advance Care Planning (ACP). Better understanding of the experiences and perspectives of community staff and volunteers who host and facilitate community-led, peer-facilitated ACP workshops is valuable when considering the spread of these approaches. METHODS: Content analysis of qualitative data from community-based hospice societies delivering ACP workshops to the public in British Columbia: one-on-one interviews with 5 organizational representatives and focus groups with 13 peer facilitators. RESULTS: Three main categories emerged: 1) ACP is about 'Living well'; 2) Transitioning focus from legal forms to conversations; 3) Benefits to all involved. CONCLUSIONS: Community staff and volunteers acknowledge the role they could play in promoting ACP in their communities. They recognize the benefits to the facilitators and public participants from following a community-led approach that emphasizes the importance of ACP conversations over the completion of relevant legal forms. Additional potential benefits of this approach, as reported by the organizational representatives, are increased volunteer engagement, more community partnerships, and an enhanced organizational profile. PRACTICE IMPLICATIONS: This community-led model can be a meaningful and approachable way to engage the public in ACP. Hospice societies are well positioned in the community to incorporate ACP workshops into their programming.
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Planificación Anticipada de Atención , Cuidados Paliativos al Final de la Vida , Hospitales para Enfermos Terminales , Humanos , Grupos Focales , VoluntariosRESUMEN
BACKGROUND: Despite the established benefits of Advance Care Planning (ACP), engagement remains low in British Columbia. Since 2016, a growing number of community-based nonprofits have offered ACP education. To date, no study has focused on the perspectives of nonprofits on ACP in British Columbia. OBJECTIVE: This study aimed to identify barriers and facilitating actions to ACP as perceived by British Columbian nonprofits. DESIGN: A mixed-methods design was used. Data were collected through online surveys and telephone interviews. SETTING AND PARTICIPANTS: Staff and volunteers from British Columbian nonprofits that are providing or interested in providing public education on ACP were recruited for this study. RESULTS: The lack of public awareness of ACP, the emotional difficulty of the conversation, the complicated ACP process, the belief that ACP is synonymous with completing a medical order form, the challenge of introducing ACP in different cultural contexts and the siloed approach to ACP education were rated as the most important barriers to ACP engagement. The most important facilitating actions were developing clear messages, improving ACP literacy, reframing ACP as part of life planning, simplifying ACP documentation and transfer, integrating ACP conversations into clinical practice and better collaboration between the health system and nonprofits. DISCUSSION: This study identifies numerous opportunities to improve ACP engagement in British Columbia from a community lens. To maximize ACP engagement, community-led ACP education should be offered in coordination with the health system. CONCLUSION: Community-led ACP education as well as collaboration and consultation with nonprofits are part of the solution to the low ACP engagement in British Columbia. PUBLIC CONTRIBUTION: Study participants, including staff and volunteers at nonprofits, are members of the public.
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Planificación Anticipada de Atención , Colombia Británica , Comunicación , Humanos , Encuestas y CuestionariosRESUMEN
This paper reports findings from a modified World Café conducted at a palliative care professional conference in 2019, where input on tools to support advance care planning (ACP) was solicited from healthcare practitioners, managers and family members of patients. Barriers to ACP tool use included insufficient structures and resources in healthcare, death-avoidance culture and inadequate patient and family member engagement. Recommendations for tool use included clarification of roles and processes, training, mandates and monitoring, leadership support, greater reflection of diversity in tools and methods for public engagement. This paper illuminates factors to consider when implementing ACP tools in healthcare.
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Planificación Anticipada de Atención , Conocimientos, Actitudes y Práctica en Salud , Actitud del Personal de Salud , Canadá , Asistencia Sanitaria Culturalmente Competente , Familia , Humanos , Grupos Minoritarios , Participación del Paciente , Minorías Sexuales y de GéneroRESUMEN
Advance care planning (ACP) assists people to plan for their future health and personal care. ACP encourages a person to legally appoint a substitute decision maker (SDM) and to document any specific wishes regarding their future health care in an advance care directive (ACD). Formal documentation of wishes increases the chances that a person's wishes will be known and followed. However, one of the biggest impediments for doctors following the person's wishes is uncertainty surrounding the law, which is complicated and varies between the states and territories of Australia. SDM legislation varies regarding who can be appointed, how they are appointed, the powers that an SDM can be given and the decision-making principles that the SDM needs to follow. In circumstances where an SDM has not been appointed, the hierarchy for determining the default SDM for a person also varies between states. Although many states have legislated ACD forms allowing for documentation of a person's health care wishes, these forms allow for different things to be documented and have different requirements to be valid. The Australian population is mobile, with patients frequently moving between states. The status of ACP documentation created in a state other than the state in which a patient requires treatment also varies, with some states recognising interstate ACDs whereas others do not. This article outlines the legal status of ACDs, within Australian jurisdictions, including the legal validity of interstate ACDs, and argues that uniform laws and documents would assist with awareness and understanding of, and compliance with, ACDs.