Table 6 Summary of Community-led Initiatives Developed to Address the Educational Needs Identified in the Community Assessments

Clients and families knowing options and available resources for receiving care (hospital vs home vs hospice) to make realistic choices.

Knowing what services and supports are available in the community to support dying at home.

Each community created a brochure for clients and families describing the local palliative care program (eligibility criteria, care pathway and services offered) and palliative care experts/resources external to the community that could be accessed. This brochure and an information poster were distributed throughout the community by the Community Lead and project advisory committee.

Getting palliative care specific information on caring for people with a terminal illness/ expected death at end of life and how to prepare.

Distributed a set of culturally appropriate palliative care brochures on the following topics: what is palliative care;

living with a terminal illness; caring for someone with a terminal illness: care for the caregiver; caring for someone with a terminal illness: what to expect; supporting the caregiver and the family.

Developed and distributed (in collaboration with the Canadian Hospice Palliative Care Association, the Way Forward and the Quality End-of-Life Care Coalition) a series of culturally appropriate educational resources on Advance Care Planning. This included a poster, a culturally appropriate workshop with slides and facilitator guide, an educational video, and set of 2 brochures on advanced care planning and substitute decision-making.

Knowing community cultural practices and traditional teachings related to death, dying, loss and grief.

Knowing how to talk about death and dying in a culturally appropriate way, including internal health care providers heath care providers.

Engaged Elders and Knowledge Carriers to share cultural knowledge and model culturally appropriate conversations about death and dying at workshops, community meetings/events. Opening and closing prayers or smudging were part of each event.

Creating culturally specific print and video resources about cultural traditions and practices relating to death, dying, loss and grief.

Knowing enough about palliative care so there is not fear of death and dying.

The community understanding what palliative care involves.

Knowing what palliative care resources are available.

Band Leadership learning about palliative care and how to better support local palliative care development and the staff, families and community caregivers.

Members of the local palliative care team/program in the community were supported and mentored by regional palliative care consultants to provide bedside education about providing palliative care: physical care, practical care, end-of-life care/death management, loss/grief, spiritual care, social, psychological.

Developed and distributed culturally appropriate palliative care booklets and pamphlets throughout community at health fairs, public meetings. They were developed in collaboration with First Nations community members and are in plain language for the general public.

Initiated palliative care program logo contest to engage community members and promote awareness of palliative care.

Community meetings held to launch palliative care development initiative.

Providing a series of free community awareness sessions facilitated by internal and external health care providers and palliative care experts. Topics included: introduction to palliative care; supporting the family; managing pain and symptoms; care for the caregiver, providing care at home.

Engaged Band Leadership to participate in community meetings/committees about palliative care and attend community awareness sessions. Band Leadership learn about palliative care, how to better support local palliative care program development and how to support the staff, families and community caregivers who provide palliative care (e.g. staff experience grief and may need additional time off).

Existing community health care providers become better trained in skills for providing palliative care, communication, counselling and psychological care to clients and families (e.g. loneliness and depression) especially related to death and dying.

Regional palliative care experts taught First Nations health care providers how to use practice tools (e.g. assessment forms, protocols for dying at home) and implement care practices commonly used in palliative care (e.g. client care conferencing, care planning). These palliative care experts volunteered to provide education during the needs assessment phase of the project, and they coached/mentored the home care staff in the First Nations communities (The regional palliative care experts were employed in hospices, cancer centres, hospitals and home care agencies).

Provided culturally appropriate educational course Palliative Care for Front Line Workers in First Nations Communities. Topics included: creating context, working with families, pain and symptom management, when the time is near, grief and bereavement, helping relationships, community care teams.

A workshop Finding our Way Through: Navigating Loss and Grief in First Nations Life was created by a member of the research team and was offered to heath care providers in First Nations communities. This experiential workshop involves participants in developing a circle of trust and feeling a sense of safety and trust in a group of people. The workshop requires a skilled facilitator and the involvement of Elders and Knowledge Carriers, and is designed for adults age 18 and over.

All external heath care providers need more training about: the cultural practices of the client population they service, implementing culturally safe [61] practices, and offering culturally appropriate compassionate care. Data emphasized the need for better communication and social support/care.

External heath care providers who provided care in the community were invited to participate in a journey mapping event to create the palliative care pathway for home care. Evaluations indicated that through journey mapping they learned how the community provides care in the First Nation, what local health service available, and how to integrate their services in a culturally appropriate way [43].

External heath care providers were invited to participate in full day cultural awareness workshops hosted by the First Nations community. Local Elders and Knowledge Carriers and local heath care providers shared cultural practices and expectations with external heath care providers in a sharing circle format with story telling and answering questions posed by external heath care providers.

External heath care providers were invited to participate in care conferences with the client, families and First Nations heath care providers, allowing external heath care providers to better understand how to integrate their expertise and services in a culturally appropriate way.