‘Survive & Thrive’

Developing a Long-term AIDS-related
Multiple Loss Survivor Intervention Framework

The title ‘Survive and Thrive’ originated with ABPO’s work with long-term survivors in the Ottawa region starting in 1999. Through funding from the AIDS Community Action Plan Ontario Region, ABPO then conducted a series of sessions entitled, “Practical Tools for Surviving and Thriving With Ongoing Loss.” These were targeted to PHAs and long-term survivors in four Ontario communities, one of which was for long term volunteers connected to two agencies in the province. The funding also enabled ABPO to hire researchers to develop multiple loss assessment tools and evaluate the effectiveness of our retreats/workshops.

Documents to share as downloads include: Multiple Ongoing AIDS-related Loss & Community Devastation - a new model of the impact of multiple loss developed in Phase II of the project; a powerpoint presentation on Phase 1 & II; a poster summarizing Phase I of the project; the Multiple Loss Assessement Questionnaire and Climbing the Tree of Life - tools developed and used in the project; the ‘Survive and Thrive’ Phase I Final Evaluation Report which summarizes the data from 67 participants; an Intervention Framework which encapsulates our learning so far, in draft form; and collages created by retreat participants, depicting the impact of multiple loss.

‘Survive and Thrive’ is an effort by ABPO to fill in current gaps in service provision by creating an Intervention Framework to identify and measure both the impact of ongoing loss and the efficacy of various interventions.  By using the existing infrastructure of the OAN’s Skills Building Program, ABPO staff will provide interested ASO workers with a framework to guide them in complex grief assessment and the development of individual and community loss interventions.

ABPO is working in partnership with the Ontario AIDS Network (OAN) to help transfer the knowledge and skills that participating community members and ASO staff require when responding to the impact of catastrophic loss.

The deeper background to ‘Survive and Thrive’ is ABPO’s finding of today’s important shifts in HIV/AIDS. ABPO is now beginning its’ second decade of work with the AIDS-related bereavement needs of Ontario’s AIDS-serving organizations. During that time, we have been responsive to the impact of new HIV treatments as well as to the shifts in agency demographics, as well as the new programs responding to the changing client base and client needs. 

People with HIV/AIDS may be living longer, but their lives are complicated with the challenges of quality of life issues and uncertain futures. Deaths are happening where people die suddenly of unfamiliar causes, such as organ failure and heart attacks.

Many of the more “seasoned workers” in agencies have moved on to other jobs with the resultant loss of experience and community history. There has been a significant change in administrators and managers throughout this province in the last four years, as compiled in OAN data.

The losses being faced by workers and community members are only partially related to the unpredictable presence of death. Increasingly, stress is related to

• the changes associated with HIV itself (treatments, challenges of living longer, new client base)
• shifts in ASO life (new management, new staff, differing emphasis in the work) and
• the decline in societal support (AIDS is seen as a chronic, manageable infection with less societal attention).

At today’s ASOs, ABPO often finds agencies experiencing a significant distinction between staff and volunteers who experienced AIDS and community activism prior to the advent of the HAART therapies (around l996) and those who entered since. We are able to use the loss model pertaining to death as a framework for managing change and transition of other types currently being found in the workplace. 

For these newer workers providing services to various communities, it is essential to fully understand the challenges of living long with the impact of ongoing, AIDS-related multiple loss and accompanying community devastation. Only with this understanding will they be able to development of a comprehensive, relevant, professional skill set.

This emerging reality redirects the activities of ABPO from intervening directly with bereaved workers to providing more skills-based training to workers not personally impacted by AIDS losses, but required to work with grief-saturated clients and communities.