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The Depth of Water Requires Knowledge: Listening to the voices of the HIV patient journey

Background

Prince George (Northern Health Authority) was one of two locations selected for the BC STOP HIV/AIDS Pilot Project (Vancouver’s Downtown Eastside was the second). The HIV population in Prince George has been identified as a priority site since the region represents many of BC’s HIV cases.

To work collaboratively with partners in identifying and addressing gaps in HIV/AIDS services, it was determined that Patient Journey Mapping (PJM) was essential. PJM is an effective and well-tested method for improving the health care system.

To address the barriers to participation in the PJM process that are present in the Aboriginal community, the STOP (Seek and Treat for Optimal Prevention) HIV/AIDS project team conducted Patient Journey Mapping with a difference. The journey encouraged storytelling around a traditional circle. The storytelling circle also included a way to capture the key elements, ideas and experiences in a visual metaphor that was meaningful and important to the participants.

This culturally-grounded model was also an important innovation because the topic under discussion was sensitive and experiences associated with it were often painful.

Methods

The project used a qualitative methodology called narrative inquiry to capture the experiences of people living with and affected by HIV. Two focus group sessions were held, one woman specific, along with five individual interviews which were electronically recorded and transcribed, for a total of 19 participants.

The HIV population in northern BC is a unique population that has generally had negative experiences with the health care system, a distrust of health professionals, and low-level literacy skills. Working with this population meant that some adaptations to the PJM method were needed:

  1. Visual metaphors were used in focus groups.
  2. Storytelling was used in the individual interviews.
  3. A collective and kinesthetic analysis was conducted.

This was a very diverse group aged 18 – 60+, including male, female and transgender, with the majority being of Aboriginal descent. All data was coded and thematically organized and analyzed. Saturation was not the aim of this report but was a guiding principle for data collection. Data saturation occurs when the researcher is no longer hearing or seeing new information.

Findings

The common themes that emerged were:

  • Shame, stigma and discrimination are ubiquitous and reduce access to care.
  • Clients experience unprofessional and inappropriate treatment by hospital staff.
  • Clients are required to remember and repeat information multiple times.
  • Lack of culturally-appropriate care for the Aboriginal population.
  • Peers want constant, ongoing HIV education and to be involved in the decision-making process (“nothing about us, without us”).
  • Lack of adequate housing.
  • Social determinants of health are not considered in care plans.

Recommendations

This report identified the following priorities: 

  • Address ignorance and lack of respect proactively with culturally-safe curriculum.
  • Protect client confidentiality, especially HIV status.
  • Keep clients informed and included along their health journey.
  • Develop a Peer-mentorship program.
  • Collaborate with other agencies to ensure holistic health.
  • Provide trauma and mental health services.
  • Support client self-advocacy and self-care.

Implications for practice

An important outcome from this project was the development of a tool (see below diagram) that identifies the importance of cultural safety. When clients do not feel safe, their health suffers as a result.

Simple and cost-effective methods, such as respectful attitudes and cultural appropriateness will help address the stigma associated with HIV. Additionally, with stigma and discrimination out of the way, the efficacy of the health care system will be greatly improved and services will be accessible for people living with and affected by HIV.

For further information

The full report is available online at http://hiv101.ca/Portals/0/nov-pjm-report-FINAL-resize.pdf.

Acknowledgements

  • Bareilly Sweet, MEd Candidate, Northern Health Authority, Collaborating Research Support
  • Dr. Theresa Healy, Northern Health Authority, Collaborating Research Support
  • Dr. Tina Fraser, UNBC, Collaborating Research Support

Categories: New knowledge

Search related content: HIV, Aboriginal, research

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