Research at WHIWH
Dedicated to improving the lives of racialized women
Integration Guidelines for Organizations
IN THIS SECTION:
Why were the ‘Integration Guidelines for Organizations’ created?
​
The idea of creating the integration guidelines originated from a think-tank held in 2010 in Toronto that was organized to share findings from the pilot testing of The HIV Positive Sero-Status Disclosure Model. Participants of the think-tank highlighted the need to have clear guidelines to help organizations adopt the HIV disclosure support model in practice. In response to this suggestion, the team embarked on investigating the most effective strategies for organizations to adopt and implement the HIV disclosure support model as part of their care and support programs; in order to help clients who are looking to voluntarily disclose their HIV-positive status to significant others.
​
The information provided in this document came from numerous investigations including a literature review on the most effective methods of model integration and a focus group on facilitators and inhibitors of organizational integration of the HIV disclosure support model. Twelve (12) organizational meetings to identify unique issues that organizations may face in implementing the HIV Positive Sero-Status Disclosure support model were also held between October 2014 and March 2015 across the province to familiarize interested organizations with the HIV disclosure model itself; determine what was needed to integrate the HIV disclosure model into support and care services provided by each organization based on their unique infrastructure; and, identify the trainings required for organizations to deliver the model effectively
​
What is the purpose & objectives of the 'Integration Guidelines for Organizations?'
​
The purpose of this manual is to help organizations that provide care and support services to people living with HIV in Ontario to plan, integrate, implement and evaluate the HIV disclosure support model. The ‘Integration Guidelines for Organizations’ aims to bridge the gap between research and practice by assisting organizations that would like to implement the disclosure support model through a set of guidelines to follow. The objectives of these guidelines are to:
Facilitate the implementation of the HIV disclosure support model by translating research into practice
Provide strategies that
can be tailored to reflect
the structure and
practices of different organizations throughout
the process of integrating
Assist organizations plan, implement and evaluate integration of the HIV disclosure support model
Who is the intended reader of the 'Integration Guidelines for Organizations?'
​
These guidelines are intended for AIDS Service Organizations (ASOs) and other organizations that provide care and support services for people living with HIV across Ontario. These guidelines are written primarily for service providers and agencies that would like to adopt and implement the HIV-Positive Sero-Status Disclosure Support Model.
How do you use the 'Integration Guidelines for Organizations?'
​
The ‘Integration Guidelines for Organizations’ is part of this disclosure toolkit developed by Women’s Health in Women’s Hands (WHIWH) in partnership with 13 different organizations across the province. This toolkit is meant to support the organizational uptake and implementation of the HIV-Positive Sero-Status Disclosure Support Model for persons living with HIV in Ontario. The guidelines should be used in conjunction with other materials developed for the toolkit as seen in the main table of contents here.
​
The HIV-Positive
Sero-Status
Disclosure
Support Model
​
​
The HIV-Positive Sero-Status Disclosure Support Model was created to provide a systematic, step-by-step template that can be used to provide support to individuals throughout the process of disclosing their HIV-positive status. The intervention outlines the importance of providing holistic, collaborative, and ongoing support throughout the disclosure process in order to ensure the wellbeing and safety of individuals seeking support.
The objectives of the model are to:
​
Provide an HIV-Positive Sero-Status Disclosure Support Model that takes into consideration race, gender, sexuality and other socio-cultural variables that influence HIV-positive status disclosure
Provide a framework that allows a person living with HIV to inform and determine how the disclosure action plan will develop and be implemented
Evaluate potential risks and effects of disclosure to maximize their wellbeing and safety
Train peers who have disclosed to serve as a support mechanism for organizations based on their lived experience
​
The practice-based objectives of the model are to:
​
Provide a step-by-step framework to guide people living with HIV and their service providers to go through the process of disclosure
Provide resources and support mechanisms needed throughout the disclosure process
Foster discussions on issues impacting disclosure
Identify challenges and opportunities/options
Evaluate potential risks and outcomes
Identify points where a person can withdraw from the disclosure process if readiness has not been achieved yet
​
How was the HIV-Positive Sero-Status Disclosure Support Model developed?
Three distinct phases mark the development of the HIV-Positive Sero-Status Disclosure Support Model.
​
01. Developing and pilot testing ‘The HIV-Positive Sero-Status Disclosure Support Model for African Caribbean and Black Women’:
An extensive literature review was conducted to explore existing data on disclosure experiences and analyzed according to emerging themes. Interviews with key informants (n=4), and 4 focus groups (n=30) were conducted with HIV-positive women who had and had not disclosed, as well as service providers. Six organizations and 10 peers were trained to support pilot testing of intervention with women who indicated they were contemplating disclosure. In this phase the disclosure model was shown as being effective (Tharao, Muchenje, and Mehes, 2013).
​
2. The Development of the Integration Guidelines: The process began with a literature review and consultation with our partner organizations on how best to integrate the disclosure model in everyday practice.
​
3. The Expansion and Roll-out Phase of ‘The HIV-Positive Sero-Status Disclosure Support Model’: Focus groups with youth, heterosexual black men, Gay/MSM in Toronto, and interviews in Waterloo were conducted to determine the adaptability of the model. The components of the original model were adapted and the model is now known as “The HIV Positive Sero-Status Disclosure Support Model”.
​
“...since various organizations have different cultures, standards and ways of doing things, the process of integration would likely differ from one organization to the other”
-Attakora et al., 2014, pg. 12
Adopting the Model
We begin this section by acknowledging that each organization is different and has a unique composition of programs, services, assets, resources, and clients. The challenges and strategies used to implement the HIV-positive sero-status disclosure support model will differ from organization to organization. For this reason we have provided an assessment template for organizations looking to implement the HIV disclosure support model. This assessment will help organizations determine what they have in place to support the integration of the HIV disclosure model, what may be missing, and how to address any gaps.
​
The first step is to identify who will be conducting the assessment. This could be an individual staff within the organization or a committee of staff who would conduct the assessment. We suggest that it be a collaborative process between service providers and management. This assessment is composed of six open ended questions, so that organizations can identify the next steps and areas of improvement based on the organization’s programs, services, and staff.
Figure 2. Assessment Template for Model Implementation lists the questions included in the assessment:
​
1. How do you approach HIV positive disclosure as an organization?
2. What are some of your successes and challenges in supporting PHAs with disclosing their HIV positive status within your organization?
3. How do you see the HIV-Positive Sero-Status Disclosure Support Model being operationalized as part of your regular service delivery?
4. What challenges do you foresee in operationalizing the disclosure support model within your service delivery?
5. What training might your organization need to support the integration and implementation of the HIV-Positive Sero-Status Disclosure Support Model?
6. Does your organization utilize the services of volunteers/peer support?
• If so, how do you envision their role in the disclosure support process?
• If not, would you integrate peer support in the process?
Ensuring Confidentiality
​
HIV-positive status disclosure is an emotional and multifaceted process. Before offering your clients support on this journey, it is important to ensure your organization can provide a safe and confidential space for HIV disclosure conversations. We encourage organizations to examine the physical space of their agency. Not all clients are open and/or feel comfortable with their status. Some clients are reluctant to access support services due to the fear of involuntary disclosure. Some organizations may have open spaces to encourage an open and friendly environment; however it is important to have space that is designated for private conversations. Shared offices and borrowed spaces can hinder the process of disclosure. You want to make sure that once a client is being taken through the HIV disclosure support model that the process is uninterrupted, and that the conversations are documented and managed in a secure and confidential manner. We encourage organizations and staff to take all measures necessary to ensure that clients who walk through their doors feel both comfortable and reassured that the agency takes confidentially and privacy measures very seriously.
​
Have you reviewed your confidentiality and recording keeping policies and practices with staff?
Do you have private space to offer disclosure support?
Do you have office cabinets that lock if hard copies of client files are being stored?
Do you have individually assigned computers/logins that are secure and password protected?
​
Assess Organizational Policies & Address Liabilities
​
Many organizations do not have a systemic process to support HIV disclosure. It’s important to establish how the HIV disclosure support model fits into current policies, mandates, and practices. We encourage organizations to analyze how the HIV disclosure model will operate as part of its overall service delivery. Further, we encourage organizations to create transparent policies and practices outlining how they will support the staff and or peers/volunteers implementing the HIV disclosure model.
​
Supporting individuals through their HIV disclosure process can raise questions for service providers trying to navigate between their professional codes of conduct and/or practices and their concern for equitable and ethical treatment of a client, particularly in the context of criminalization of HIV non-disclosure. Through focus groups and consultations with organizations, many service providers who support people living with HIV discussed frequently being concerned with liability because they did not know if they were implicated in their clients’ disclosure decisions and whether or not they would be protected by their organizations if they were (Barry, 2014).
​
Prior to implementing the HIV disclosure support model, organizations have a responsibility to inform all staff that are involved on what their legal responsibilities are and what they would be accountable for by law. Generally, service providers in the field have to come up with creative ways to document and support their clients. If the support of peers and/or volunteers will be utilized in the HIV disclosure process, it is also necessary for the organization to identify what peers and volunteers are liable for and how the organization will support staff, peers, and/or volunteers involved in providing support.
​
Do you have an HIV disclosure policy and position statement?
Have you informed staff what they are legally responsible and liable for while participating in supporting clients through
the HIV disclosure process?
Have you informed peers/volunteers of any liability concerns?
Have you outlined the role the organization will play in supporting and protecting staff, peers, or volunteers throughout the
implementation of the disclosure model?
Have you created a transparent internal process of what will occur if client files are subpoenaed?
​
Identify Staff who can be Involved in Supporting Disclosure
A client’s entry point to an organization may vary. In the planning and preparation phase of the integration, it is important to outline who the first point of contact for clients should be, who they should see afterwards and what services they should access; creating a template for service delivery. For smaller organizations, this pathway is often times straightforward and easy to monitor. For larger organizations clients may enter through different pathways and may see one or several staff within the organization.
​
Identify the number of staff and peers you would like to implement the disclosure model, what their roles and positions are, what skill sets they have, what resources and tools the organization has, and areas for improvement. For those who would be directly working with clients/service users, it is important to conduct an assessment of their knowledge of HIV/AIDS, associated challenges, and their understanding of HIV disclosure. This is an important step as service providers are the main point of contact with clients. Service providers have the potential to form and develop trusting relationships with their clients, which can help facilitate the disclosure process.
​
It is also important to inform all staff involved in implementing the HIV-positive disclosure model on what their roles are. It is important that all staff involved understand that their role is not to persuade clients to disclose, rather their role is to provide support with a very clear understanding that the end goal is not necessarily disclosure. The goal is to explore the possibility of disclosure, assess potential outcomes, and create a safety plan if the person living with HIV feels that they are ready to disclose.
​
Have you created a process for client’s entry/pathway to services in your organization?
Have you identified which staff will be involved in supporting clients through disclosure?
Have you clearly outlined the responsibilities and roles of the staff involved in the disclosure model?
Have you identified any capacity-building training needs for your organization and staff?
Have you organized meetings with all appropriate staff to give updates on the integration and implementation process?
​
Identify clients who may benefit from participating in the model
Organizations generally serve different populations and or demographic groups based on either their catchment area or mandate. Some of these groups may have different challenges disclosing their HIV status compared to others – this difference should not be ignored. It is important for the organization to identify what population they are most suitable to serve and set a realistic target given the services they provide and the organization’s area of expertise. It is important for the organization to set guidelines for how they will promote the intervention in their organization and the referral process (es).
​
Have you identified which population/demographic is suitable to receive the disclosure support
given your area of expertise?
Have you determined how you will promote the model within your organization?
Have you determined what the referral process(es) will be for the person disclosing and the
one being disclosed to?
​
Assess & identify community resources
Assessing your resources and identifying what you have in place to support the integration process is essential in ensuring the process is a success. For some organizations, they may have most of the resources they need to support individuals, as well as the person being disclosed to, in order to successfully go through and complete the disclosure journey. This may include having a support worker, social worker, therapist, family doctor, a testing site, etc., all under one roof to support a client who is going through the process.
​
In some instances, organizations do not have all the resources to successfully implement all aspects of the HIV disclosure support model without referrals. For instance, through our investigations we found that most ASOs do not have the internal resources to provide trauma therapy, which is a significant component of the disclosure model. In this process, we encourage organizations to identify their support networks in advance and liaise with community partners and collaborators on ways to support their clients’ journeys.
​
Have you identified community resources that will assist you through the implementation of the disclosure model?
Have you created an understanding of what additional support they will provide your organization?
Have you created a referral pathway for both internal and external resources needed?
Identify organizational & staff capacity-building needs
​
Once you have gone through this section you will have a sense of how your organization can support the HIV disclosure support model and what may be missing to ensure a seamless integration process and a successful disclosure support program. Once this checklist is complete an organization will have a sense of what the next steps entail. The answers will indicate the capacity-building plans needed for staff and the organization itself to support the process as a whole. The complete checklist can be found in the resource section.
​
Suggested Training for Staff & Peers
Possible training topics
Throughout the creation of the HIV-disclosure model and consultations with organizations and their service providers on how to implement the HIV disclosure model it became clear that additional trainings would be necessary. A list of training topics is outlined below; knowledge of each of these topics is integral to implementing effective HIV-disclosure support. However, depending on your organization or staff’s area of expertise, you may only need training on a few of these topics. Therefore it is important to define your training goals based on your review of the above sections
Possible Training Topics include:
Immigration and HIV | Anti-Racist and Anti-Oppressive (ARAO) framework in everyday practice | Self-care
Implementation training (intervention steps, role playing, tracking forms, evaluation) | HIV 101 & 201
Training on documentation | Sex Positivity | Law vs. Good Health Practices | Disclosing to children
​
The trainings that you chose should be mandatory and offered to staff and peers before organizations start using the model. Selected trainings will cover all the practical steps in implementing the model as well as other topics that have been proven to be useful for staff and peers.
​
Have you defined your training goals?
Have you set up trainings to reflect your learning goals?
Have you created an evaluation for each training received to ensure the training goals have been met?
Have you identified the resources required to implement the training?
Who is required to attend the training?
​
The decision of who gets to attend training is entirely up to organizations. We recommend that all staff and peers who provide support to clients within the organization e.g. support workers, social workers, therapists/counsellors, etc. attend and complete all components.
What is needed to complete the training?
​
Staff and peers who are selected to attend this training must commit to the training schedule and time. They must attend all required trainings and participate in activities as directed. Some of the training sessions might last all day, while others might require staff and peers to sit in front of a computer for a number of hours. Please ensure that you have all the details of what the training entails and make the necessary arrangements with your representative organization before you get started. Organizations should liaise with the organizing bodies to ensure they have the following information:
​
• A clear schedule and agenda outlining the training start date and time
• Names of who will be sent to the trainings
• If there are any costs associated with attending the sessions (i.e., travel, meals and accommodations), who would cover the costs?
Organizations are encouraged to offer their staff additional training or resources that they feel would strengthen their skills and knowledge in supporting their clients through the HIV disclosure process.
Review staff and peer learning experience
Before you attend trainings, you would have identified what you want to learn from the experience. The evaluation strategies you employ need to be structured to determine whether or not your goals have been met. Things to evaluate include:
​
• Instructors/educators or event facilitators
o If the facilitator/instructor communicated clearly
• Training curriculum
o Whether or not the information you received was clear, easy for you to understand and relevant o Whether or not the curriculum covered all of the things you wanted to learn during the training sessions
• The event and learning environment
o Whether or not it was a positive space/environment for learning and exchanging ideas
Staff and peers should also do a self-evaluation at the end of the training. Self-evaluation questions for staff and peers may include:
• What have I learned from attending these trainings?
• What elements will I use in supporting clients?
• What will I do differently?
• Am I able to start utilizing the model to support clients with little or no guidance? If not, do I know who to contact for additional support?
• Am I able to teach others what I have learned?
​
Evaluation of the learning experience:
Did you administer evaluations after the training?
Are training participants satisfied?
Are any additional resources/training necessary?
Introducing the HIV Positive Sero-Status Disclosure Model
If all goals are met than we recommend organizing another internal meeting within your organization to start planning how you would generate awareness within the organization and your community at large of the HIV disclosure support services you are offering. If learning goals are not met, you may want to contact the project leader/organizer to arrange further training and support for your staff.
Raising awareness within your organization and community
The best way to introduce your disclosure program is to identify a variety of strategies for getting the word out. Through our consultation meetings with the 12 organizations, the suggestions made by staff in terms of introducing the HIV disclosure model to clients/service users are as follows:
​
• Directly informing clients/service users who may benefit from the model
• Giving presentations - to your clients/service users, local community members, community partners, etc.
• Creating resources: posters/pamphlets/video campaigns promoting the servicE
• Welcome packages
• Support groups
• One-on-one sessions
• Agency website
• Awareness campaigns
​
The above strategies are only suggestions on possible ways organizations can spread the word about the HIV disclosure support model and the support the organization is providing for clients to go through the process. We understand each organization is unique and would come up with their own creative ways of introducing their new disclosure program and engaging their clients. Once several clients have participated in the HIV disclosure support model, it is important to solicit their feedback in order to re-evaluate if any changes need to be made in how the model is implemented.
​
Have you created a plan on how to introduce and promote the model?
Have you created a flexible timeline for its rollout?