Maureen Mahan recalls a conversation with June Callwood, a Canadian journalist and social activist, which struck a chord with her and inspired her future work. Callwood had just given a talk about her book 12 Weeks in Spring, which chronicles the joint efforts of a group of friends to provide palliative care to a friend with terminal cancer. “I had never heard someone speak about health care the way she did,” Maureen explains. “She spoke of health care in a way that I always envisioned it should be for everyone but wasn’t yet.” Callwood spoke of a truly client centred approach to care.
Inspired by this encounter and some encouraging words from Callwood, Maureen responded to a posting for a position at Casey House a few months later, and has been working there ever since. Founded by June Callwood and a group of dedicated volunteers, Casey House is now in its 27th year as a speciality HIV/AIDS hospital in Toronto with home care and outreach programs. It provides care and services for people living with HIV as well as education for health care professionals and people working in HIV/AIDS care. “I feel like the principles that June believed in have been integrated throughout the history of Casey House and are really sound principles of patient care,” says Maureen.
Health care for people living with HIV is multifaceted and long term. It requires new information and education on treatments and standards of care. Maureen’s role at Casey House includes creating programs that respond to the needs of health care and support service providers who are caring for people living with HIV/AIDS. Recently, Maureen has been working on “Compassionate Care in a Changing Landscape”; an educational video series for care providers about the long term care of people living with HIV/AIDS that will roll out nationally in the fall of 2014.
With an aging population in Canada, an increasing number of people living with HIV/AIDS will be entering long term care facilities. “We needed a tool to enhance the knowledge of direct care providers. We needed something that would be accessible across disciplines and fit within the time constraints that exist for professional development and training in long term care organizations,” explains Maureen. A video series was the perfect fit. Developing the series became a joint effort. “In order to ensure that the videos were informed and relevant, the project drew on a large community including people living with HIV, clinicians from the HIV sector, physicians, experts in long term care, nurses, substance use and addiction workers and other health and long term care professionals. No one said “no”—everyone wanted to contribute to the videos because they thought that creating a resource for long term care was important.”
The video series addresses issues such as bedside care, HIV and aging, mental health, families and support networks, substance use and addiction, complex medical concerns and HIV pharmacy. The series was produced collaboratively by Casey House and the Rekai Centres in Toronto with support from the MAC AIDS Fund and CAHR. Excerpts from four completed videos were screened at the CAHR conference in May 2014, and received excellent feedback. Preliminary evaluations of the series with long term care providers have demonstrated that after watching the videos, participants feel more comfortable and empathetic in caring for residents living with HIV. The completed videos in the series will be available in the fall. Links to the video series will be posted at the Casey House and the Rekai Centres websites, as well as at the CATIE and the OHTN websites .
In the spirit of the founders of Casey House, Maureen continues to help provide important services that improve the quality of care for people living with HIV/AIDS. “Our goal is that the care we provide to our clients is always exceptional,” says Maureen. “The biggest gift for me is to be able to fill an important need for clients and care providers. At Casey House we are in a position where we have access to the tools and collaborative relationships and we have a willingness to explore and respond to the needs of people living with HIV.”
The Canadian Association for HIV Research (CAHR), the CIHR HIV/AIDS Research Initiative, the Canadian Foundation for AIDS Research (CANFAR), the CIHR Canadian HIV Trials Network (CTN) and the Canadian HIV Vaccine Initiative (CHVI) Research and Development Alliance Coordinating Office (ACO) would like to thank Maureen Mahan and her colleagues at Casey House for their significant contributions to our understanding of HIV. Their work is part of a larger Canadian effort that is making a difference in the lives of those affected by HIV in Canada and around the world.