Doing it for Themselves: Creating Peer Grief Advocates to Support Friends Through Loss

A large tree provides shelter and support for small saplings growing at its base

Why is it Important to Create Peer Grief Advocates?

Every living being will inevitably experience the process of dying. This universal journey transcends wealth, education, and ability, naturally including the often-overlooked needs of the intellectually and developmentally disabled (IDD) community in matters of death, dying, grief, and loss. Despite the IDD community's transition from institutionalisation to community living, they continue to encounter challenges in fully integrating into everyday life, particularly in navigating the processes and rituals associated with death and dying.

In death, they are shielded from knowledge of dying and death experiences, which can lead to feelings of isolation and confusion, resulting in behaviors often labeled as 'problematic,' such as withdrawal, sadness, and anxiety. The emotional complexity arising from multiple losses of friends, abilities, and independence is neither understood nor addressed.

Residents of assisted living environments frequently encounter multiple layers of grief. They have been separated from familiar communities, families, jobs, and the foundational stability they have relied on for years. Decisions are now made on their behalf, resulting in a loss of agency, and the regular turnover of support personnel subjects them to ongoing losses.

While working with the Compassionate Corner, a lot of the people I met said they wanted to help others going through loss and the grief that follows. "Bereaved people labelled/with intellectual disabilities indicated that rather than always being only the recipients of bereavement support, they want to use their experiences to help others - their bereaved peers, family members, and paid staff (Grosset 2023).

The relatability, shared experience, and immediate availability of Grief Advocates make this training a crucial consideration for all community or assisted living environments. Most importantly, the project is designed to ensure stability and sustainability through the training of advocates. While support changes or counseling may conclude, the creation of peer advocates aims to provide a reliable source of encouragement, readily available to assist whenever needed.

This blog will document the pilot project, aiming to inspire others to replicate the creation of grief advocates in their own communities. It will focus on delivering actionable strategies, valuable lessons, and insights into community impact.

The human soul doesn’t want to be advised, fixed, or saved. It simply wants to be witnessed, seen, heard and companioned exactly as it is. When we make that kind of deep bow to the soul of a suffering person, our respect reinforces the soul’s healing resources – Parker J. Palmer (2016)

Preparing Grief Advocates: Essential Training Components

This pilot programme offers training that emphasizes building empathy, active listening skills, and a compassionate presence. The programme will be conducted over four 1.5-hour sessions from May to June 2026.

The Grief Advocates will be trained to accompany grieving friends using Wolfelt's companioning model. Wolfelt revolutionised bereavement support by moving away from the medical model, firmly rejecting the notion of treating grief. Instead, he champions a philosophy of journeying alongside individuals in their grief and pain. This approach empowers individuals as the experts of their own grief, honoring their spirit and being fully present without attempting to fix them (Wolfelt, 2016). The Advocates will be there to 'hold space' and listen attentively to the griever, without needing to solve the problem or provide advice.

There are 4 modules that will be presented during the training.

Module one

Learning objectives: Participants will understand the physical process of dying. They will engage in discussions about various types of grief and approaches to grieving. Participants will be encouraged to share their own definitions and insights on grief and loss. Participants will clearly distinguish between grief and mourning and possibly identify activities that effectively support mourning and healing.

Module 2:

Learning Objectives: Participants will gain a clear understanding of the purpose of holding space and the importance of gentle accompaniment or companioning. They will reinforce what is genuinely helpful. Participants will confidently support the bereaved by quietly attending to them, without attempting to solve the problem or fix the person. Practical skills will be developed through role-playing scenarios.

Module 3

Learning objectives: Participants will understand that accompaniment can evoke strong emotions in those holding space. We will identify and discuss coping skills, emphasizing methods for self-care. Confidentiality and respect will be thoroughly addressed. Clear protocols for escalation and seeking help will be outlined, including when to engage staff or the Creative Grief Practitioner overseeing the interventions.

Module 4

Review and practice of skills developed. Reinforcement of key messages and issue of 'certificates' to Peer Advocates.

Role of Grief Practitioner in Training and Supporting Peer Advocates

As a Creative Grief Practitioner, I've crafted a specialised training program that acknowledges and enhances the diverse cognitive and physical abilities of the Advocates. By integrating feedback from Peer Advocates and residents, I will ensure the training remains continually relevant and evolves effectively. Additionally, mentorship, regular check-ins, refresher training, and group discussions will be conducted to support ongoing development.

By the end of this pilot, I hope to establish a community of practice designed to foster collaboration among Peer Advocates, share success stories, and lessons learned, thereby strengthening and expanding the network to other agencies and communities that recognise this important need and resources contained therein.

Note: This project was developed drawing from my experience with the Compassionate Corner and was informed by the work of Dr. Cara Grosset, which can be accessed here: Grosset, Cara, "Deep in the shadows of loss: An exploration of grief, mourning, and intellectual disability" (2023). Theses and Dissertations (Comprehensive) . 2516. https://scholars.wlu.ca/etd/2516