On Wednesday November 2nd Positiva Gruppen Syd organized an online webinar with the aim to get inspired by the way peer support is organized in different countries. The webinar had the title ‘To understand and increase wellness and quality of life for PLHIV – Peer support, community initiatives and new tools’. With guest speakers from Norway, Sweden and Australia it was a very interesting morning of which we would like to share a summary with you.
Firstly, we are introduced to the Australian examples of peer support shared by Brent Allan, a specialist in global community engagement practices and also a goat farmer(!). Brent talked about two periods within peer support history. The first period in the 1980s and 1990s, focused on practical forms of support and was delivered through community agencies. In this first phase peer support was seen as ‘’nice’’, but not ‘’necessary’’. The second period started after 2000 and is more focused towards self management and tailored to individual needs.
Peer navigators
One of the developments within the Australian type of peer support is the so-called peer navigation. Peer navigators are people living with HIV who are equipped to talk about how to live successfully with HIV and are stationed at the infection disease clinics. Whereby they function as a complement to existing medical professionals and were introduced to fill the gap at the clinics (how could the medicals understand the minor social difficulties that one faces living with HIV?).
The difference with peer support is that peer navigators are focused on navigation, access and connection with health care. Peer navigation is focused on the lived experiences, with five main topics central: health system navigation, stigma resilience, disclosure mastery, positive health outcome and ART adherence.
It is not about surviving, but about thriving!
Another topic that Brent talked about was PozQol, an instrument to measure quality of life (Qol) of people living with HIV. Within the quality of life and well being research there is an extensive amount of literature, but there has not been a specific focus yet on quality of life for people living with HIV. Therefore the instrument PozQol, in the form of a survey, was designed in Australia. The validated scale has since its introduction been introduced worldwide.
The survey consists of 13 questions that focus around four central themes: psychological domain, social domain, health concerns and functional domain. Experience learns that the functional domain is the lowest for newly diagnosed people.
In Australia people living with HIV go through the PozQol survey every four months and this process is overseen by the clinic. Once it is time to do the survey the clinic sends out a text message to the patient. The PozQol results give a broader view on the well being of the patient, because it is not just focusing on medical numbers such as the CD4 level. Holistic views are important, because quality of life is not about surviving, but about thriving!
The PozQol results gain evidence about the importance of peer support and can bring peer support to the next step: from ‘’necessary’’ to ‘’essential’’.
The user-driven clinic
The presentation was followed by Kim Fangen and Anita Øgård-Repål providing their Norwegian experiences. Kim is a Patient representative and Project manager at the Southern Hospital of Norway. Anita is Assistant professor, Department of Health and Nursing Science at the University of Agder. Their presentation focused on the user-driven clinic at the Southern Hospital of Norway and gave us an insight to the Norwegian situation. The presentation started by how Kim asked a group of patients ‘What is it that you need, how do you want us to run the clinic?’. The discussions led to a rapport of which one of the given recommendations was to install peer support within the clinic.
The start of a new PHD position
The hospital decided to follow the recommendations and install peer support within the clinic. They saw this installment as an opportunity to simultaneously start a research project. A PHD project was created for Anita and she researched the experiences of peer support in outpatient clinics from the perspective of service users, peer supporters and the healthcare professionals
Interesting findings from the research
The findings of Anita showed the essentiality of peer support: during the peer meetings there is a sense of mutual belonging and reciprocal support. It felt like coming home when one could meet a peer. There are multiple findings that show why having peer support at the outpatient clinic is beneficial.
Within the Norwegian context you can see that NGOs are not all over the country. It means that the OPC is an accessible place to everyone and moreover it is perceived as a neutral place with high confidentiality. Having peer supporters at the OPC ensures the quality of support the clinic can provide. Especially for newly diagnosed people it is a quick win, because this group needs the support immediately. Furthermore, it led to the medical staff having a better understanding of what it is like to live with HIV, because having peer supporters at the clinic means an exchange of knowledge and a dialogue to frame understandings.
Activism and peer support
The webinar was concluded with a presentation by Positiva Gruppen Syd about peer support in Skåne. Peer support is currently not a part of the healthcare system, however Positiva Gruppen Syd is convinced that having peer support integrated within healthcare is essential to improve well being among PLHIV. Our organization supported a motion from one of the political parties for systematic peer support within the healthcare system.
However, this was rejected, but Positiva Gruppen Syd is not giving up and looking for ways to improve the well being of PLHIV in (southern) Sweden.
What’s next?
The peer support webinar provided new insights and it was an inspiring morning. New connections have been initiated and Sweden and Norway are already thinking about how to make use of the PozQol in their respective countries.
If you are interested to learn more we have some reading and videos for you:
Read more?
We have for you a link to the articles from Anita’s PHD:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0252623
https://www.sciencedirect.com/science/article/abs/pii/S0260691718301771
https://journals.sagepub.com/doi/full/10.1177/23259582211066401
https://journals.sagepub.com/doi/full/10.1177/15248399211049824
Here you can find more information about the background of PozQol:
Watch more?
In this video we see an interview with Victoria from the peer navigators in Australia:
Watch Positiva Gruppen Syds new video about Plusverket, their method of peer support!
Want to take the Pozquol survey yourself?