Community Report: Planning for the Long-term

by Jessica Cattaneo and Kate Murzin
AIDS Committee of Toronto
July 2012

Project Background:

Planning for the Long Term was an eight-week psycho-educational workshop series, an educational program which enabled group participants to identify an issue of personal concern (aging) and, as a group, explore strategies for aging well with HIV. The series was developed for older gay men who were HIV-positive.

The objectives of Planning for the Long Term were to:

    · Increase connections between participants, presenters, organizations, and service sectors;

    · Increase participants’ ability to identify and communicate current and potential needs related to aging;

    · Increase participants’ ability to navigate programs and services in a variety of sectors in order to address needs related to aging;

    · Increase participants’ capacity to prepare for and manage change.

The content of the workshop series was developed based on information gathered through: three focus group consultations with gay men who identified as long-term survivors, an environmental scan of programs or initiatives for older people living with HIV and long-term survivors, and a review of the research literature related to psychosocial issues for older adults living with HIV. The findings of these activities were used to develop a draft workshop curriculum, which was reviewed by a reference group of ACT staff who identify as or work with older gay men living with HIV.

Planning for the Long Term was offered during the summer (June/July) as a closed group (participants were expected to attend the entire series). Ten men who identified as gay and ranged in age from 42 to 71 joined the group, and eight men completed the full series.

The workshop series focused on three key content areas: physical health, mental health, and financial health. Each weekly session included discussion and/or activities led by invited speakers representing a broad range of service sectors or disciplines. Participants were introduced to services or tools that could be useful to them as they age. Participants were also provided with a listing (“info map”) of a broad range of organizations, services and activities related to the week’s topic. Opportunities for the group to discuss and debrief around the material covered was also an important component of the weekly sessions.

Week ThemePresenter/ActivitiesServices on Info Map
1Approaches to changeIntroduction and group norm-setting

The Multiple Loss Journey – AIDS Bereavement and Resiliency Program of Ontario (ABRPO)

counselling, psychotherapy, bereavement
2Physical health – knowing your bodyBridging the Gap: Communicating & Working with Healthcare Providers – Canadian AIDS Treatment Information Exchange (CATIE)

Yoga – Community Yoga Instructor

gyms, recreation centres, physical health classes and groups
3Rehabilitation, mobility, and paramedical servicesRehabilitation Strategies for People Living with HIV/AIDS – Occupational Therapist

Feldenkrais – Uptown Studio

paramedical services (dental care, eye care, hearing aids, foot care, acupuncture, fitness assessments, massage therapy, shiatsu), Feldenkrais, occupational therapy, other (veterinary services, haircuts)
4Cognition, memory, and HIVPoz-Brain - Sean Rourke, Researcher, Cognitive Rehabilitation studies using Posit Science Brain Fitness Program

Memory strategies and exercises

dementia support, memory and aging, classes and courses, social support groups, online memory exercises
5Stress reductionEmotion-focused Meditation Practice - Mount Sinai Hospital, Clinic for HIV-Related Concernspsychotherapy groups (mindfulness based stress reduction, narrative), yoga, Tai Chi, meditation
6Financial planning and benefits before age 65Planning for Your Financial Future - St. Christopher House

Powers of Attorney and Advance Care Planning: Making your wishes known – HIV & AIDS Legal Clinic Ontario (HALCO)

Fitness Break - Resistance Bands - YMCA

legal, financial
7Financial planning and benefits after age 65Changing Benefits at 65

Home Care and Long-term Care - Community Care Access Centre (CCAC)

Return to Work/School - Employment ACTion

long-term care and crisis services for older adults, seniors’ groups, benefits and assistance, advocacy, employment, volunteering
8ClosureReturn to program goals/objectives

Address ‘parking lot’ issues/outstanding questions

Debrief and evaluation

Review and discuss info map

What We Learned:

The research literature on HIV and aging can paint a dark picture for the older person living with HIV, largely because so little is known about the relationship between HIV, HIV treatment, and aging. In our consultations and the workshop series, participants expressed a lot of concern about these unknowns – they wanted information that could help them prepare for aging with HIV, and found the lack of knowledge heightened their unease. However, by creating spaces to review and discuss current knowledge (and knowledge gaps) related to HIV and aging, we found that participants in our consultations and Planning for the Long Term were able to address their anxieties and become better advocates for themselves and their communities.

Consultation participants shared their strategies and concerns related to aging with HIV, and stressed the importance of social and organizational connections. Many participants had begun to access age-related services outside of the HIV sector and found that experience challenging. They found they had to do a lot of work educating themselves about the range of services that exist, which services they could access for free, how access can change after age 65, and the barriers they may encounter accessing services in sectors and organizations less connected to HIV or LGBTQ communities. Participants suggested AIDS Service Organizations (ASOs) could become a better point of access by working more closely with the growing range of services and organizations that older people living with HIV may need to access.

Consultation participants also stressed the importance of social support for older people living with HIV. Participants recognized that loss, illness, mobility, financial insecurity and ageism could create challenges in maintaining or developing social connections. They recommended older adults living with HIV participate in programs and services that include a social component, like support groups or workshops. They also suggested volunteering, school, and/or work as important means for social interaction and engagement. Also stressed in the consultations was the value of participating in non-formal activities that are not specifically related to HIV – community groups, civic engagement, and free events can offer important opportunities for older adults to broaden their social networks.

In general, consultation participants highlighted the connections between three topics areas (physical health, mental health, and financial health) which eventually came to form the basis for the workshop series (for example, noting both the emotional and social impact of financial insecurity). The series was developed with these connections in mind in an effort to take a holistic approach to aging with HIV.

Consultation participants shared concerns about how benefits change at age 65, and the difficulty they face finding clear information about what changes to expect. Many were worried about their financial security and/or had minimal savings because they had not expected to live as long as they had, and/or because they were living on fixed incomes, which make it difficult to save. These concerns were addressed in the series by including workshops on financial planning, government benefits, and returning to work or school. Because so many service users are interested in these topics, ACT has now introduced a three-part series entitled Community Financial & Estate Planning Management Program, which will be offered in addition to Planning for the Long Term.

Consultation participants shared concerns about cognitive decline and the lack of information and programming in this area. While services in this area are sparse, Planning for the Long Term highlighted a few available program options (mostly outside the HIV sector), including occupational therapy, and introduced group members to evidence-based strategies to maintain and improve cognitive health (exercise and good cardiovascular health, cognitive engagement strategies including social interaction, stress reduction and learning new things).

Several consultation participants shared experiences related to physical illness, pain management, and mobility. They also stressed the importance of paying attention to physical changes and adjusting activity or seeking care in response to those changes. Rehabilitation services were highlighted in the workshop series as an important means to recover from or adjust to changes in one’s physical health. Planning for the Long Term also included some physical activity, including Feldenkrais, a gentle physical practice that can reduce pain and physical limitation of day-to-day activities through slow, repetitive movement.

Recommendations for Psycho-educational Groups on Aging and HIV:

The opportunity to explore emerging and important concerns related to aging and HIV was appreciated by workshop participants. They described feeling more knowledgeable about the broad range of services available to them, and more confident searching for and accessing aging-related services. The pre and post evaluation process found increases in participants’ self-reported feelings of preparedness and hopefulness for the future, as well as increases in their confidence to manage challenges. Participants also described the group dynamic as an important part of their overall enjoyment of the series.

ACT will offer Planning for the Long Term again in 2012. The experience of developing, implementing, and evaluating this workshop series has been an important learning process, and we have recommendations for other organizations interested in developing similar programming:

    · Invite service providers from other organizations or sectors to speak about age-related issues or services. Doing so can initiate new connections between workshop participants and these organizations, as well as foster connections between the organizations involved.

    · Acknowledge and address loss and attachment as part of any change process. The AIDS Bereavement and Resiliency Program of Ontario’s Multiple Loss Journey illustrates how doing so enables one to move forward.

    · Recognize that some topics related to aging can trigger anxiety and fear. Make sure participants have access to emotional support like a counselor.

    · Include ample space for participants to discuss and debrief about the material or content covered.

    · The role and responsibility of group facilitators is important in psycho-educational groups and all facilitators should be trained in group facilitation. If possible, workshop participants may find it valuable if at least one workshop facilitator is also a peer (HIV-positive and over 40 years of age).

    · Include participants and presenters who have lived experience of an issue or accessing a service – this offers an opportunity for mutual support and is engaging for participants.

    · Balance structured presentation and discussion with physical activity as a means of providing experiential learning opportunities, increasing motivation, and decreasing physical discomfort.

Community Report - Planning for the Long-term.pdf139 (Kbytes)