Sharing Together For Life

What is the Program?

Sharing Together for Life is an HIV disclosure program that was designed and assessed through a community research project undertaken by the Canada Research Chair in Education and Health at the Université du Québec à Montréal (UQAM).* The program was designed to help women better understand the impact of disclosure or non-disclosure of their HIV-positive status in different situations and to help them set up a permanent support system.

The program, which does not favour disclosure over non-disclosure, is made up of a series of nine workshops facilitated by a service provider and an HIV-positive woman. It encourages reflection through discussions and interactive activities. The program is not a form of group therapy. Rather, it helps participants to share, learn and think about the potentially sensitive issue of disclosing their HIV-positive status.

Main goals:

• to help  participants make  proactive and educated decisions in regard to disclosure in different situations
• to help participants plan strategies that allow them to cope with their decision to disclose or not to disclose
• to prepare participants to manage difficult situations or negative experiences that may occur during a planned or unwanted disclosure
• to help participants express their feelings concerning the disclosure or non-disclosure of their HIV-positive status
• to educate participants about Canadian laws relating to the disclosure of their HIV-positive status
• to foster relationships, knowledge sharing and support in a group of women

*Other partners include: ACCM (AIDS Community Care Montreal/Sida Bénévoles Montréal), Public Health Agency of Canada, ARCAD-SIDA, L’A.R.C.H.E. de l’Estrie, BLITS (Bureau local d’intervention traitant du sida), BRAS-Outaouais (Bureau Régional d’Action Sida – Outaouais), BRISS-Côte-Nord (Bureau régional d’information en santé sexuelle), CASM (Centre d’Action SIDA Montréal – Femmes), CATIE, Centre Sida Amitié, CHU Sainte-Justine, CLSC des Faubourgs, COCQ-SIDA, La Coalition PLUS internationale, Corporation Félix Hubert d’Hérelle, Centre de Ressources et d’Interventions en Santé et Sexualité, CSSS Jeanne-Mance, GAP-VIES, GEIPSI, Canadian Institutes of Health Research, M.A.I.N.S.- Bas-Saint-Laurent, Maison Plein Coeur, MIELS-Québec, Le Miens-Chicoutimi, Sidaction Mauricie, Sida-Vie Laval, Stella, Université Laval, Université de Montréal, Université du Québec à Montréal (Department of Sexology, Canada Research Chair in Education and Health, School of Social Work)

Why Was the Program Developed?

Sharing Together for Life arose from a needs assessment of HIV-positive women initiated by the Mother-Child Network of the Sainte-Justine Hospital. The Mother-Child Network wished to explore the life experiences of HIV-positive women after the development of effective HIV treatment and approached Coalition des organismes communautaires québécois de lutte contre le sida, the Department of Sexology at UQAM, other research partners and community organizations to conduct a needs assessment.  

The needs assessment revealed that disclosing their HIV-positive status is a major challenge for women. A review of existing resources and services indicated that although community organizations that work with people living with HIV do not specifically discuss the notion of disclosure with their clients, many try to find ways to approach the subject. The assessment team agreed that it was worth improving existing programs or creating new ones to support the decision-making process for HIV-positive women in the Canadian legal context.

In 2006, the Sharing Together for Life study group established a program to provide women with support with disclosure. It was initially introduced as a pilot project in Montreal but it has since been implemented by community organizations working with women living with HIV across Quebec.

How Does the Program Work?

Location

Sharing Together for Life is offered by community organizations that serve women living with HIV in Quebec. During the evaluation phase of Sharing Together for Life (2006-2011), the Canada Research Chair in Education and Health identified organizations and trained individuals in these organizations to offer the program. As of summer 2014, 26 service providers (some living with HIV) have been trained to support women living with HIV in the disclosure process. Fifteen community organizations have offered the program in Quebec on an ongoing basis and 123 women living with HIV have participated.

Recruitment and engagement

Community organizations that offer the program are tasked with recruiting participants. Organizations promote the workshops to potential participants in newsletters, brochures and outreach communications.

Sharing Together for Life facilitators feel that it is important to clearly explain to women that the program allows participants to share their experiences and points of view, particularly when it comes to managing disclosure and secrets. The goal is not to lead them to disclose if this is not part of their plan but rather to help them to live better with the daily realities of HIV.

Advertising generally includes:

• The definition of the program: “A place where HIV-positive women can  think about the issue of disclosure or non-disclosure”
• Themes of the meetings
• Testimonies from women who took part in the program
  •  “I found strategies to help me talk about it ... or not.”
  •  “I found the information I needed to make the right decision.”
  •  “I feel more confident.”
• Contact information of the community organization

Workshops

Sharing Together for Life is offered as a series of nine weekly workshops that can be co-facilitated by a service provider and a peer. Workshops can be offered to a single participant or to a closed group of four to eight women. Each participant must commit to attending all workshops and sign a confidentiality agreement. Once the program has begun, no new participants are accepted because each workshop builds on the previous one. Keeping the group closed also helps to create a sense of belonging among the participants. To maintain group cohesion, there is a policy that participants must leave the group if they miss more than two workshops.

Each workshop begins with a recap of the previous meeting, during which participants are invited to talk about how the previous meeting impacted their daily life. Each workshop ends with an evaluation of the activities and the workshop format. A snack is usually served before or after the meeting.

Workshops include the following educational activities: exercises involving reflection through drawing, impact therapy techniques* involving movement or objects, sharing circles and group discussions.

Welcome Meeting (Individually or as a Group)

Facilitators assess the needs of women to ensure that the program’s objectives suit them, particularly when it comes to their concerns about disclosure.

Key activities:

• presentation of the program (goals, themes, learning activities)
• discussion of the ground rules: ensure confidentiality; promote diversity; respect each member; participate when ready; be on time; listen to others; avoid using cell phones
• presentation of the logbook (“My First Page” activity), a journal that is the cornerstone of each workshop (participants use this to recount and record their background, thoughts and feelings with photos, magazine clippings and souvenirs)
• signing of the confidentiality agreement

Workshops 2 to 9 last approximately three hours each. The themes are as follows:

1. Portraits of Women:  Getting to know the other participants and the facilitators better and building relationships with them
2. Learning to Live with HIV: The process of accepting one’s HIV-positive status acceptance process of one’s HIV-positive status
3. Life Situations: Where the issue of disclosure might come up
4. Controlling My Own Destiny: Possible consequences of disclosure in different situations
5. Sharing to Better Support Each Other: Disclosure strategies for different situations
6. Secrets to Keeping your Secret: Eventual consequences of non-disclosure in different situations
7. One, Two, Three, HUSH!: Strategies to keep a secret in different situations
8. Participants’ Messages: Group mural and conclusion of the program

Workshop 2: Portraits of Women

Participants get to know each other and understand the importance of taking part in the program.

Key activities: 

• “Interdependence” exercise is led by the facilitator during which participants hold each other’s hands to create an atmosphere that fosters trust.
• Positive Women: Exposing Injustice: Participants watch a documentary about HIV-positive women who are grappling with disclosure. A discussion follows.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 3: Learning to Live with HIV

Participants learn that it is possible to live positively with HIV.

Key activities:

• “How I see HIV”: Participants are invited to share their vision of HIV with the group using different images.
• “My life journey with HIV”: Participants discuss the different steps involved in adapting to living with HIV and the concepts of acceptance and integration of HIV into their lives.
• Lived experiences: Participants share their journeys since being diagnosed.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 4: Life Situations

Participants develop the ability to recognize situations in which the issue of disclosure may come up.

• “In what situations?”: Participants talk about situations where the issue of disclosure may arise.
• “Should I tell or not tell?”: Participants identify the nature of legal, moral or medical obligations they feel about disclosing their HIV-positive status.
• “The people in my orbit”: Participants list the people who surround them and who are affected by the issue of disclosure or non-disclosure. Participants also assess the moral obligation they feel when it comes to disclosing their status to certain people in their life.
• “Tell me about your world”: Discussions about how some participants may feel the need to disclose.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 5: Controlling My Own Destiny

Participants assess potential issues around disclosure in different situations.

Key activities:

• “Pros and cons”: Participants talk about the positive and negative consequences of disclosure.
• “The pros and cons scale”: On the basis of their disclosure situation, women assess the importance of each of the pros and cons.
• “My winning hand”: Participants identify an enabling factor and the major obstacle to disclosure they face. Then they come up with a way of strengthening the enabling factor (an asset) and how they can engage their greatest strength to overcome the obstacle.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 6: Sharing to Better Support Each Other

Participants discuss disclosure strategies for different situations.

Key activities:

• “Sharing knowledge and experience”: Participants discuss the types of disclosure, sharing disclosure experiences and strategies.
• “My strategic plan”: Participants develop a strategic plan for disclosure by answering a series of questions on the decision they have made, the support they have received, the disclosure skills and knowledge they have acquired as well as the strategies that can be used to disclose.
• “Encouragement card”: Participants make cards of encouragement to support other women in the group when it comes to disclosure.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 7: Secrets to Keeping Your Secret

Participants think about the impact and the consequences of keeping their secret in different situations. Participants use the skills they acquired in previous workshops to come up with their own non-disclosure strategies.

Key activities:

• “Pros and cons”: Participants discuss the positive and negative consequences of keeping a secret.
• “My savings account”: Women assess the importance of the pros and cons for the situation surrounding their secret.
• “My secret code”: Participants identify an important enabling factor and a major obstacle they had to overcome. Then, they select a way of strengthening the enabling factor (asset) and how to overcome the obstacle (their greatest strength).
• “My box of secrets”: This impact therapy technique is used to help participants realize that other people may disclose their status with or without their consent.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 8: One, Two, Three, HUSH!

Participants plan strategies to keep their secret in different situations. They use the skills they acquired during previous workshops to develop their own non-disclosure strategies.

Key activities:

• “Let’s share our secrets”: Participants are invited to share their experience in keeping a real or current secret.
• “Brainstorming”: On the basis of their shared experiences, participants talk about the strategies mentioned by others to keep their status secret and about possible strategies to prepare for an unwanted disclosure.
• “My secret recipe”: Participants are invited to come up with an action plan that would allow them to keep their status secret in a given situation.
• “I can live with my secret”: In their logbook, participants illustrate how they can lessen the burden associated with their secret.
• “Thoughts on the meeting”: Participants talk about what they liked most and least during the meeting.

Workshop 9: Participants’ Messages

Participants are encouraged to raise awareness about HIV in the general public and to support other HIV-positive participants.

Key activities:

• Participants work together to create a mural to be used as an outreach tool against discrimination and stigmatization of people living with HIV.
• Last group discussion: Participants give their final feedback to conclude the series of workshops.

Cultural adaptation of the Sharing Together for Life program for implementation in Mali

In 2012, thanks to the joint support of the Canadian Institutes of Health Research and the Fondation de France, the ARCAD-SIDA team in Mali and the team at UQAM (in collaboration with the Coalition Plus and COCQ-SIDA) adapted Sharing Together for Life to the Malian context. In Mali, the program was renamed “Gundo So,” which means chamber of secrets.

To date, 122 women living with HIV in Mali have taken part in the program. Following their participation, Malian women, much like women in Quebec, said they felt less of a burden about their secret and better able to deal with their decision to disclose or not disclose their HIV status. They also felt more able to plan and implement strategies to share their status or not, depending on the situation. The program helped them develop relationships with other women and to gain their support.

The program may also have had positive effects on treatment adherence and helped women feel that they had more control over their lives.

*Impact therapy techniques emerged from impact therapy, which was developed by Ed Jacobs, PhD, a professor at West Virginia University. These techniques often use therapeutic tools such as objects, movement, drawing, metaphors, self-expression or writing (Beaulieu D. La thérapie d'impact : une approche centrée sur les ressources du client. Revue québécoise de psychologie. 2005;26(1):99-110.).

Required Resources

Human resources

The series of workshops can be facilitated by two women. At least one of them should be HIV-positive. Both facilitators must have extensive experience in group facilitation and have a good understanding of HIV-related issues. It is essential that the co-facilitators respect the decision-making process of each participant as the program does not promote disclosure over non-disclosure of HIV-positive status.

Material resources

• Facilitator’s guide: The guide explains every step of each activity in each workshop and contains a section about training and implementation.
• The collective tool “Pouvoir partager entre femmes” was written by a group of women who took part in the program and who wanted to document their journey with HIV and what they learned by going through the program.
• A private room large enough to create murals and organize role-play activities is needed.
• Each participant should be given a kit that includes a personal journal and creative supplies (coloured pencils, scissors, glue sticks, coloured construction paper and paper).
• Refreshments and snacks should be served.

Financial resources

Aside from staff time, it costs about $500 to organize nine workshops, which includes the cost of refreshments during the workshop as well as the cost of photocopies and required materials for each participant’s logbook.

Challenges

• The theme may dissuade some women from participating since they may be under the impression that the program promotes disclosure.
• It can be difficult to create a cohesive group if participants do not feel a sense of community with other HIV-positive women before joining the program.
• It is not always easy to find participants, particularly in rural areas, who are over 18, were diagnosed more than six months before the start of the program and who feel comfortable discussing HIV in a group setting.
• It is particularly difficult to recruit participants in rural areas where infection rates are lower and HIV-positive women are isolated and far from HIV-related services.
• It takes a lot of time to implement the program, particularly to recruit and train facilitators and to prepare nine workshops.
• Since the series of workshops are not offered on a regular basis throughout the year, facilitators may need a refresher course, which takes time and can be expensive.

Evaluation

Sharing Together for Life was developed in 2002 following a qualitative study to explore the life experience of women living with HIV in Montreal since effective HIV treatment became available.* This study highlighted the need of women living with HIV to be supported through the sensitive decision to disclose or not.

In 2006-2007, the program was implemented as a pilot project and reached 38 women living with HIV in the Montreal area. It showed promising results and the program was expanded and implemented at the provincial level in Quebec with the help of 15 groups. It reached 85 women living with HIV.

Results obtained during the province-wide implementation validate those obtained during the pilot phase and demonstrate, six months after the intervention, that the program helps foster a greater ability to take action in regard to disclosure as well as a greater feeling of personal achievement in managing disclosure or non-disclosure. The impact of the program was documented with questionnaires before and after the series of workshops, groups discussions with participants and facilitators and the coordinator’s notes.

Among women who have taken part in the program since the pilot phase, more than half were born abroad and the majority of them came from Haiti or Africa. On average, participants had known they were HIV-positive for nearly 10 years and most were on treatment. More than a third of them were in a relationship, and all of these women had disclosed their HIV-positive status to their partner. More than 75% of participants had children, and among this group, at least one of their children was aware of their positive status.

Nearly all women who were surveyed said they were keeping their HIV-positive status secret in some context. Among participants who had disclosed their positive status to at least one person, their spouse, an immediate family member (generally their mother or sister) or a friend were the people to whom they had most commonly made the disclosure.

Women who took part in the workshops have reported the following:

• They recognize the importance of the support from other women in deciding to disclose or not.
• They are able to make educated decisions freely about disclosing in different situations.
• They are able to plan and apply strategies to disclose their status or keep it secret.

In general, it seems that the program has had a greater and more positive impact for women who have children, for women who have been living with HIV for a shorter period of time and for women with a higher level of education. However, there has been no difference in benefit on the basis of age, country of origin, marital status, annual income or treatment adherence.

* Trottier G, Fernet M, Lévy JJ, et al. Les expériences de vie des femmes séropositives depuis l’avènement des nouvelles thérapies contre le VIH/sida. Rapport de recherche présenté au Fonds québécois de recherche sur la société et la culture. Québec: Université Laval; 2005.25 p.

Lessons Learned

• Promote the workshops as a support group on the issue of HIV status.
• A good way to lessen women’s fears around disclosure or non-disclosure is to have them take part in structured and facilitated workshops with women who face a similar situation.
• Verify participants’ eligibility by establishing if they are able to discuss their HIV status during a confidential workshop as a way to develop a solid base for healthy group dynamics.
• The journaling principle can be essential to help some participants identify how they feel about disclosing or not disclosing their HIV status during a workshop.
• The film that presents the decision-making process around HIV-status disclosure or non-disclosure can be used as a starting point for dynamic discussions or for brainstorming during workshops.
• After taking part in the program, women living with HIV feel more confident, in control and supported when it comes to their decision to disclose or not.

Program Materials

• List of collaborators
• Facilitator’s Guide
• Facilitator’s Guide Overview
• Pouvoir Partager/ Pouvoirs Partagés entre femmes (French only)

Other Useful Materials

Information found on the CATIE website

• Disclosure

Contact Information

To learn more about Sharing Together for Life (Pouvoir partager/Pouvoirs partagés), in either French or English, please contact:

Lyne Massie, coordinator
(514) 987-3000, ext. 1374
massie.lyne@uqam.ca