Researchers want to map and evaluate a new project for patients with HIV. At a user-run polyclinic they are given the opportunity to meet people with the same diagnosis.
Living with chronic disease is challenging, and people who are diagnosed with a serious illness have many questions. Having the opportunity to talk to someone with the same diagnosis, a so-called peer supporter or peer support specialist, may prove helpful.
For this reason, the Hospital of Southern Norway introduced user-run clinics where users and health professionals work together. People with HIV get to meet others with the same diagnosis as part of the treatment at the polyclinic. Several patient organisations offer peer support meetings; however, this particular service is organised by a user-run polyclinic.
‘Peer support work is highly developed in other countries and for other patient groups in Norway, but it is a relatively new service for people with HIV,’ professor Mariann Fossum and PhD candidate Anita Øgård-Repål at the Department of Health and Nursing Science explain.
Kim Fangen initiated the HIV project and is a user representative. He is peer support coordinator at the Hospital of Southern Norway and has lived with HIV for 16 years.
For several years Fangen has worked systematically to establish programmes at every hospital to ensure peer supporters are part of the treatment plan at the polyclinics. He contacted the University of Agder after reading Fossum’s opinion piece "How can we engage patients to reduce risks at Norwegian hospitals?" in forskning.no.
The project is expected to last three years and includes the perspectives of patients, peer supporters and health professionals. In addition to the University of Agder, the Arctic University of Norway is involved. Extrastiftelsen contributes by awarding scholarship to PhD student Anita Øgård-Repål.
The goal is to review peer support work internationally and nationally, and further to look at the cooperation between health personnel in the different organisations, the person seeking help and the peer support specialists,’ the research candidate says.
Consultant Ole Rysstad at the general medicine department at the Hospital of Southern Norway took the initiative to the user-run polyclinic. HIV patients was the first group he contacted.
He invited five people from Nye Pluss, the national association for people with HIV, to take part together with five patients from the Hospital of Southern Norway and presented the idea to them. Together they formulated a request to present to the hospital.
"It is really empowering to be given such trust and responsibility. We were given control, and the hospital was committed to following our wishes and recommendations", Fangen says.
Peer support coordinator Fangen thinks it is revolutionary to admit non-professionals to the polyclinic. When he himself fell ill, he used patient organisations.
"It was quite random what kind of assistance you were given, and because it was based on voluntariness there was a large turnover. It may worsen the situation when someone you have built trust with disappears", Fangen says.
Having stability and ensured quality must be an integral part of the treatment offered at a user-run polyclinic. The peer supporters must be vetted and receive employment at the hospital.
"Then you can make different demands. As an employee you also have legal liability and are bound to observe professional secrecy", Fangen says.
He thinks it is essential to safeguard the peer supporters. They provide guidance to people in a vulnerable position in addition to dealing with their own challenges.
Kim Fangen thinks a user-run polyclinic can contribute to better interaction between specialist healthcare services and primary care services. Peer supporters have experience with primary care services and various municipal services and can help new users navigate them.
The researchers on the project are doing mapping work now. They look for literature on peer support work for people with HIV and look at practices and what has been done.
The mapping shapes the next study. They will talk to people who receive guidance from peer support specialists to gain increased insight into their experiences, using group interviews, questionnaires and qualitative interviews.
Kim Fangen explains that a long-term goal for the project is to do peer support work at a national level, to provide training and to build a team of peer supporters.