Summary Report: Peer-Led Positive Treatment Guide
Author: Brittany Cameron

Background: The Canadian AIDS Society has undertaken the commitment to create a peer-led positive treatment guide. The primary goal of this initiative is to empower individuals who are living with HIV by providing them with comprehensive knowledge and practical skills. The intention is to enable these individuals to effectively navigate the intricate landscape of their healthcare journey. At its core, this initiative is driven by the desire to cultivate a sense of agency among those living with HIV. The overarching aim is to encourage and promote self-advocacy, specifically tailored towards securing personalized and suitable treatment solutions for each individual’s unique needs.

Literature and Resource Review: In laying the groundwork for the Peer-Led Positive Treatment Guide, a literature and resource review became imperative. The comprehensive review centered on two pivotal aspects:

  1. Existing Resources: The examination of current resources related to HIV treatment advocacy was a meticulous exploration into the landscape of available materials. This involved scrutinizing an array of literature, guides, and educational tools designed to support individuals in their journey with HIV. The aim was to distill the wealth of existing information and identify effective resources that could be integrated into the forthcoming guide.
  2. Common Barriers: The identification of prevalent obstacles hindering effective HIV treatment advocacy constituted a crucial aspect of the review. This involved delving into the multifaceted challenges faced by individuals seeking optimal HIV care. By pinpointing common barriers, the Canadian AIDS Society can aim to tailor the peer-led guide to directly address the specific hurdles impeding informed decision-making and active engagement in healthcare.

Key Themes: The literature and resource review yielded several overarching themes that form the foundational pillars of the forthcoming Peer-Led Positive Treatment Guide. These themes encapsulate the multifaceted aspects of the HIV healthcare landscape, addressing not only medical considerations but also the socio-economic, psychological, and systemic factors influencing an individual’s journey. The emergent themes are not mere observations but critical focal points shaping the guide’s content and approach:

  1. Stigma and Discrimination:
    Overcoming societal bias and discrimination associated with HIV/AIDS is crucial. Individuals should build resilience, educate others about HIV, and strategically disclose their status. Self-advocacy involves asserting worth, fostering confidence to navigate healthcare decisions despite external judgments.

*Questions to Ask Yourself:

  • How can I build resilience against societal stigma associated with HIV/AIDS?
  • What strategies can I employ to strategically disclose my HIV status?

*Questions to Ask Your Healthcare Provider:

  • How can you support me in managing the emotional impact of societal stigma?
  • What resources or guidance can you provide regarding disclosure strategies?

*Questions to Ask Your Local AIDS Service Organization:

  • Are there community programs or workshops to help individuals build resilience against stigma?
  • How can your organization assist with strategies for strategic disclosure?

 

  1. Lack of Patient Understanding or Awareness:
    Addressing a lack of awareness requires individuals to proactively seek information, engage with healthcare providers openly, and participate in support networks. Building health literacy and self-advocacy skills empowers individuals to confidently communicate their treatment preferences and actively engage in healthcare decisions.

*Questions to Ask Yourself:

  • How can I proactively seek information to enhance my understanding of HIV and its treatment options?
  • What steps can I take to engage with healthcare providers and support networks?

*Questions to Ask Your Healthcare Provider:

  • Can you recommend resources or educational materials to improve my health literacy?
  • How can we work together to ensure effective communication about my treatment preferences?

*Questions to Ask Your Local AIDS Service Organization:

  • Are there educational programs or workshops to enhance understanding and awareness?
  • What support networks or community resources do you recommend for individuals seeking more information?

 

  1. Financial Barriers:
    Facing financial challenges necessitates individuals to develop financial literacy, explore available assistance programs, understand insurance options, and advocate for affordable treatment solutions. Building financial self-advocacy capacity enables individuals to assertively navigate the economic aspects of their healthcare, maintaining control over their treatment journey.

*Questions to Ask Yourself:

  • How can I improve my financial literacy to better manage healthcare costs?
  • What steps can I take to explore and access financial assistance programs?

*Questions to Ask Your Healthcare Provider:

  • Can you provide guidance on managing healthcare costs and improving financial literacy?
  • Are there specific financial assistance programs or resources you can recommend?

*Questions to Ask Your Local AIDS Service Organization:

  • How can your organization assist individuals facing financial barriers to healthcare access?
  • Are there workshops or resources available for financial planning and assistance?

 

  1. Geographical Accessibility:
    In regions with limited healthcare access, individuals should engage with their communities and actively advocate for improved access. Utilizing telemedicine, organizing community initiatives, and collaborating with local healthcare providers are vital strategies. Collective self-advocacy fosters active participation in initiatives that enhance geographical accessibility to healthcare resources.

*Questions to Ask Yourself:

  • How can I engage with my community to advocate for improved healthcare access?
  • Are there telemedicine options or community initiatives I can explore?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss ways to enhance geographical accessibility to healthcare resources?
  • Are telemedicine options available for remote healthcare consultations?

*Questions to Ask Your Local AIDS Service Organization:

  • How does your organization collaborate with local healthcare providers to enhance accessibility?
  • Are there community initiatives or programs addressing geographical barriers to healthcare?

 

  1. Healthcare Bias:
    Addressing biases within the healthcare system requires individuals to recognize and challenge biased practices, engage in open communication with healthcare professionals, and seek second opinions when necessary. Building self-advocacy skills empowers individuals to actively advocate for unbiased and patient-centered care.

*Questions to Ask Yourself:

  • How can I identify and address instances of bias within the healthcare system?
  • What strategies can I employ to communicate openly about potential biases?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss ways to recognize and address bias within the healthcare system?
  • How can I confidently seek second opinions when faced with potential bias?

*Questions to Ask Your Local AIDS Service Organization:

  • How does your organization address healthcare bias within the community?
  • Are there resources or workshops available to navigate bias in healthcare interactions?

 

  1. Fear of Disclosure:
    Managing the fear of disclosure involves developing communication strategies, asserting control over the timing and manner of disclosure, and navigating social aspects of healthcare with confidence. Building self-advocacy skills in managing disclosure fears ensures individuals can assertively navigate the social dimensions of their healthcare experience.

*Questions to Ask Yourself:

  • What communication strategies can I employ to navigate the fear of disclosure?
  • How can I build a supportive network to mitigate the fear of disclosure?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss strategies for managing the fear of disclosure in healthcare settings?
  • How can you support me in building a supportive network for disclosure?

*Questions to Ask Your Local AIDS Service Organization:

  • Are there community programs or workshops addressing the fear of disclosure?
  • How can your organization assist with building a supportive network for individuals facing disclosure challenges?

 

  1. Mental Health Challenges:
    In the context of mental health challenges, individuals should actively seek mental health support, employ coping strategies, and communicate mental health needs to healthcare providers. Nurturing self-advocacy in mental health empowers individuals to actively engage in their mental well-being as an integral part of their overall healthcare advocacy.

*Questions to Ask Yourself:

  • How can I actively seek mental health support services?
  • What coping strategies can I employ to manage mental health challenges?

*Questions to Ask Your Healthcare Provider:

  • Can you recommend mental health support services that align with my needs?
  • How can we work together to address mental health challenges as part of my overall healthcare?

*Questions to Ask Your Local AIDS Service Organization:

  • What mental health support programs or resources does your organization offer?
  • Are there community workshops or initiatives addressing mental health challenges?

 

  1. Language Barriers:
    Overcoming language-related challenges involves developing language self-advocacy skills, accessing translation services, and communicating preferences effectively. Fostering linguistic self-advocacy ensures language barriers do not impede effective communication and understanding in healthcare interactions.

*Questions to Ask Yourself:

  • How can I advocate for myself in overcoming language barriers during healthcare interactions?
  • Are there resources available to help me communicate my preferences effectively?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss strategies for overcoming language barriers in our healthcare interactions?
  • Are translation services available to ensure effective communication between us?

*Questions to Ask Your Local AIDS Service Organization:

  • How can your organization assist individuals facing language barriers in healthcare?
  • Are there workshops or resources available for effective communication in diverse linguistic settings?

 

  1. Legal Barriers:
    Facing legal barriers requires individuals to be informed about their legal rights, seek legal assistance when needed, and advocate for equitable treatment. Building legal self-advocacy capacity empowers individuals to assert their rights within the legal framework of healthcare.

*Questions to Ask Yourself:

  • How can I stay informed about my legal rights as an individual living with HIV?
  • In what situations should I seek legal assistance to address legal barriers to healthcare access?

*Questions to Ask Your Healthcare Provider:

  • Can you provide information on my legal rights as an individual living with HIV?
  • How can I navigate legal barriers within the healthcare system?

*Questions to Ask Your Local AIDS Service Organization:

  • What legal support programs or resources does your organization offer?
  • Are there community workshops or initiatives addressing legal barriers to healthcare access?

 

  1. Substance Use Challenges:
    Dealing with substance use challenges necessitates a holistic self-advocacy approach. Individuals should access resources for managing substance use disorders alongside HIV treatment, engaging actively in both aspects of their well-being. Fostering a comprehensive self-advocacy mindset ensures individuals can navigate the complexities of substance use challenges while advocating for their HIV healthcare needs.

*Questions to Ask Yourself:

  • How can I adopt a holistic approach to self-advocacy addressing both HIV treatment and substance use challenges?
  • What resources are available to help me manage substance use disorders alongside HIV treatment?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss a comprehensive approach to self-advocacy that addresses both HIV treatment and substance use
    challenges?
  • What support services or resources can you recommend for managing substance use disorders?

*Questions to Ask Your Local AIDS Service Organization:

  • How does your organization address the intersection of HIV treatment and substance use challenges?
  • Are there community workshops or initiatives focusing on holistic self-advocacy for individuals facing substance use
    challenges?

 

  1. Philosophy of Care/Client Goals:
    Effective healthcare necessitates a harmonious alignment between an individual’s philosophy of care and their set goals with the approaches adopted by healthcare providers. Barriers may arise when there is a misalignment with healthcare providers, hindering communication and collaboration. Limited self-awareness of personal values can impede the establishment of clear goals, while insufficient communication with healthcare providers may lead to a lack of understanding, resulting in care misaligned with the client’s values. Systemic issues within healthcare institutions, such as rigid protocols, may restrict the accommodation of individualized care philosophies. Inadequate support systems can hinder individuals in expressing their values, and cultural diversity barriers may lead to misunderstandings. Resistance to change within the healthcare system can impede the adoption of client-centered approaches, and a lack of education may result in a shared understanding of the importance of alignment. Constraints in time and resources may limit in-depth discussions, and legal and ethical considerations may restrict certain aspects of an individual’s care philosophy. It is crucial to overcome these barriers as alignment ensures personalized, patient-centered care that respects individual values, promoting a collaborative and effective healthcare journey. This alignment enhances communication, trust, and satisfaction, ultimately improving health outcomes and the overall quality of care. Examining the alignment between an individual’s philosophy of care and client goals is essential. Questions to consider include:

*Questions to Ask Yourself:

  • What are my fundamental values in healthcare, and how do they align with the care I am receiving?
  • How can I ensure that my healthcare goals are in harmony with my personal philosophy of care?

*Questions to Ask Your Healthcare Provider:

  • Can we discuss and clarify my philosophy of care to ensure it aligns with the treatment plan?
  • How can you support me in achieving my healthcare goals while respecting my values and preferences?

*Questions to Ask Your Local AIDS Service Organization:

  • Are there programs or resources that can help individuals align their healthcare goals with their personal philosophy
    of care?
  • How does your organization promote patient-centered care that respects individual values and goals?

 

Most Valuable Resource:
I want to express gratitude for a particularly noteworthy resource, namely the “Women-Centred HIV Care: Information for Women” toolkit. This Canadian toolkit is intricately crafted to provide essential support for women navigating the complexities of healthcare while living with HIV. While its primary focus is on women, I find that its content is highly relevant and beneficial for all individuals living with HIV. Furthermore, I believe it possesses the flexibility to be modified and tailored to better suit a more extensive and diverse audience. This toolkit, with its wealth of information and thoughtful design, stands as an ideal starting point for anyone seeking comprehensive guidance on navigating the multifaceted aspects of living with HIV. https://cep.health/media/uploaded/CEP_WomenHIV_Info.pdf

Conclusion:
These themes form the basis for self-advocacy, addressing not only medical considerations but also socio-economic, psychological, and systemic factors. The next steps involve consulting with the community to ensure inclusivity, developing additional questions and guidelines, and collaborating on advocacy strategies. The guide’s continuous refinement, educational program development, widespread dissemination, and ongoing evaluation will contribute to its effectiveness in fostering a patient-centered, collaborative healthcare journey.

Recommended Next Steps:

To enhance the Peer-Led Positive Treatment Guide’s impact, the Canadian AIDS Society will engage in community consultations for inclusivity and feedback. Additional questions and guidelines will be developed, addressing diverse community needs. Continuous review, widespread dissemination, and regular evaluation will help ensure the guide’s relevance, accessibility, and effectiveness in empowering individuals living with HIV to navigate their healthcare journey with confidence and self-advocacy.

 

Resources

Published Resource Name  Author  Format
2013 A Checklist Guide for People Living with HIV NAPWHA PDF
2014 Living with HIV Know Your Rights HIV Legal Network PDF
2017 Indigenous Communities; HIV, Privacy and Confidentiality CAAN/HIV Legal Network PDF
2018 Is Your HIV Care Provider the Right Fit for You? The Body Video
2018 Positive Self-Management Program (PSMP) The Gilbert Centre Website
2020 Women-Centred HIV Care: Information for Women WCH/Chiwos PDF
2020 READY to advocate: A guide for young people living with HIV Y+ PDF
2021 Managing Your Health  CATIE PDF
2022 Seeing Your Health Care Provider HIV GOV Website
2022 How to Be an Advocate for Yourself and Others The Well Project Website
2022 Unmasking legislative constraints: An institutional ethnography of linkage and engagement in HIV healthcare for African, Caribbean, and Black people in Ontario, Canada Apondi J. Odhiambo, Lisa Forman, LaRon E. Nelson, Patricia O’Campo, Daniel Grace Research Article
2023 Your Guide to HIV Treatment CATIE PDF
2023 Know Your Rights. Indigenous and HIV/HCV in Federal Prisons CAAN/HIV Legal Network PDF
2023 What Questions Are Important to Ask Your Doctor? HIV Net Website
2023 Patient Information  UHN Website

 

Scroll to Top