The Positive Self-Management Program (PSMP) is an interactive six-week program for people living with HIV. Program participants and peer leaders meet once a week for 2.5 hours and participants learn tools and skills to help them self-manage their overall health and HIV. Topics such as medication adherence, managing fatigue, relaxation, self-advocacy, working with healthcare professionals and communication skills are covered in the weekly meetings. The PSMP was developed by the Self-Management Resource Center (SMRC) (formerly the Stanford Patient Education Research Center). The SMRC provides licensing for program use, as well as evaluation and training support.

In 2016/17, the Gilbert Centre for Social and Support Services (Gilbert Centre) received a five-year Public Health Agency of Canada (PHAC) grant to deliver the Positive Self-Management Program. This grant allows the Gilbert Centre to deliver 17 programs in Ontario. Master trainers from the Gilbert Centre will train eight peer leaders in the PSMP. These eight leaders will then deliver the program to people with HIV at different AIDS service organizations (ASOs) in Ontario.

In the early 1990s the Stanford Patient Education Research Center, rebranded as the Self-Management Resource Center (SMRC) in 2017, developed the Chronic Disease Self-Management Program (CDSMP) to help people with chronic conditions manage their own health. The evidence-based program was developed with a rigorous five-year research project and with focus groups with people with chronic conditions who spoke about the need to deal with the symptoms of these conditions. The CDSMP was developed to be facilitated by peers and is guided by social cognitive theory.

In response to the HIV/AIDS crisis, the CDSMP was adapted for use with HIV in 1997. This adaptation, called the Positive Self-Management Program (PSMP), was revised in 2016 to reflect the new reality of HIV as a chronic, manageable illness.

In response to an identified need to help their clients self-manage their HIV, the Gilbert Centre in Barrie, Ontario, decided to implement the PSMP by training two master trainers, who then trained peers to deliver the program. The Gilbert Centre started to run programs with clients in 2014, and in 2015 the Gilbert Centre set up training with other ASOs to train peer leaders to bring the program to their clients.¹

With the five-year grant from PHAC, the Gilbert Centre will provide two self-management programs, one for people with HIV and one for people with hepatitis C (to be released in 2019), to an estimated 260 participants in four regions in Ontario.

The PSMP is owned by the Self-Management Resource Center (SMRC), which maintains program materials and conducts ongoing evaluation of the program. Organizations (e.g., the Gilbert Centre) that would like to run the PSMP must obtain a licence from the SMRC. The program book, Living a Healthy Life with HIV, can be purchased through Bull Publishing along with a companion relaxation CD. SMRC supplies standardized workshop content. The consistency of the workshop delivery and content are strictly controlled by SMRC and no additional outside materials are used as part of the PSMP. The program protocol and the companion book have been updated to reflect new information about living with HIV and new topics such as monitoring, taking HIV medication, building support systems, and evaluating symptoms over time.

Participants

Anyone with HIV can participate in the PSMP. The Gilbert Centre has also expanded program participation to include personal support team members for people with HIV (e.g., partner, family member). Inclusion of a member of the support team is optional (participants can complete the program on their own) and usually limited to one support team member per participant. Support team members attend all workshops with participants. The program consists of 2.5-hour sessions once a week for six weeks with five to 12 participants per cohort.

Potential participants come to the program through an ASO or other organization, or hear about it by word of mouth. They can sign up for the program through a client care worker at the Gilbert Centre or any organization that is running a PSMP workshop series.

Workshop topics

As part of the program, clients are helped to create their own weekly action plans to practise the skills they learn in the workshops and they are given the opportunity to share their action plans with other program participants. Clients learn about dealing with difficult emotions, relaxation techniques, physical activity, communication skills, and dealing with depression. They receive a book called Living a Healthy Life with HIV, which has information that is covered in the program as well as material on additional topics that participants can refer to after they complete the program.

Topics covered over the six weeks include, but are not limited to, the following:

• Week 1: common problems among people with HIV, distraction as a self-management tool, defining common terms (e.g., CD4, T-cell and viral load test), and completing an action plan for the coming weeks (completed each week)
• Week 2: decision-making skills, ways to manage difficult emotions, problem-solving steps, and dealing with fatigue
• Week 3: the role of the healthcare team, symptom evaluation, support mechanisms for maintaining medication regimes, using a medication/symptom log, and relaxation techniques
• Week 4: symptoms of depression, how to manage mild depression, benefits of exercise, reasons why safer sex is important, disclosure, and communication skills
• Week 5: what is healthy eating, getting a good night’s sleep, physical activities and goals, types of advanced directives (e.g., will, power of attorney), and how to change negative thinking into positive thinking
• Week 6: strategies to work effectively with a healthcare team, roles in care, how to develop personal support, goal setting, and plan making

The sessions are highly interactive and include the use of brainstorming, problem solving, and working in pairs with report-backs to the larger group. Each week participants receive an activity to work on for the following week, to prepare for the workshops and to practise skills. Additionally, the PSMP provides support team members the opportunity to share with, and learn from, one another.

Each organization sets the times for its workshops according to the preferences and needs of its participants.

Trainers and leaders¹

Master trainers, who have completed a master trainer course and have facilitated at least two of the workshop series, train peer leaders to deliver the PSMP. Master trainers must facilitate at least one six-week workshop series once per year to maintain their leader certification. To become a peer leader for the PSMP requires completion of the CDSMP training program (four days) and then one day of training specific to the PSMP. In the 12 months after they complete their training, peer leaders must facilitate at least one six-week workshop.

Peer leaders are usually past participants of the PSMP who either are identified by master trainers or who self-identify as being interested in becoming a leader and have the potential skills to do so. Peer leader training focuses on ensuring the fidelity of the program with regards to the content and delivery method. Training also includes leading activities and a focus on presentation skills (e.g., eye contact, clarity). Peer leaders receive reimbursement for their involvement in the program.

• A program book: Living a Healthy Life with HIV (4th edition) and relaxation aids (e.g., relaxation CD)
• A trained and knowledgeable peer leader to facilitate weekly workshops
• A master trainer to train peer leaders
• Active participation from workshop participants
• A licence to deliver the PSMP from the SMRC. Two types of licences are available: a nonprofit licence and other (private or public) company licence. Licences are based on the number of workshops and leader trainings that will be offered. Licences start at $500 for two leader trainings and 20 workshops per year.¹

• Transportation. It can be difficult for participants to make it to in-person sessions as programs can cover a large area and many participants do not drive. Carpooling and use of local taxi services can help to address transportation issues.
• Recruiting program participants. The team at the Gilbert Centre has started to devise creative ways to find program participants. This has included building partnerships with diverse community groups and ensuring that people can speak passionately about the program and its goals when connecting with partners.

The original version of the PSMP has been evaluated in the literature. A randomized controlled trial found that the PSMP improves self-efficacy to manage HIV symptoms and improves short-term (six months) adherence to HIV treatment, as compared with the use of printed materials.

The Gilbert Centre has delivered the PSMP to 31 participants to date.

The Gilbert Centre collects information regarding the delivery and outcomes associated with a workshop series using pre- and post-evaluations under the guidance of the SMRC. Collection of this information is ongoing and results are not available at this time. The proposed evaluation includes the following:

• A questionnaire that gathers information on: demographics; general health; fatigue level; pain level; self-efficacy to manage the disease; depression; working with physicians; use of the healthcare system; patient activation level; and quality of life. The survey takes place at baseline and six months after completion of the program.
• Focus groups take place six to nine months after completion of the program and are used to gather information on what was learned during the program, as well as information on whether this has led to changes in the lives of participants. Between 10 and 15 people participate in each focus group.

• Think outside the box on where to recruit potential participants. Make connections with organizations in your region that work with people living with HIV to increase recruitment into the program.
• A need for the development of a hepatitis C program. A hepatitis C program is being developed by the SMRC and the Gilbert Centre (e.g., materials, training trainers). The program is set to launch in the fall 2019.

• Promotional program poster

Kellie Leeder, Master Trainer Coordinator
The Gilbert Centre for Social and Support Services
555-80 Bradford St.
Barrie, ON  L4N 6S7
Phone: 1-705-722-6778 x802
Email: kelliel@gilbertcentre.ca