Ian Walker outlines the structure and evaluation of the Genesis workshops that ACON conducts for newly diagnosed HIV positive gay men. This presentation was given at the AFAO Positive Services Forum in June 2009.
What is Genesis? A collaboration between ACON and Positive Life NSW Weekend workshop for “newly diagnosed” HIV positive guys. Meet other guys to talk and share experiences in a supportive environment. Information and strategies to help make informed choices about a range of issues Discuss current resources and how to access them. One on one pre-workshop interview and post-program needs assessment. 37 workshops run since 2000.
Newly diagnosed” men. Discuss that this is more about mind set and readiness to deal with the issues as determined during the intake process. Can vary from 2 weeks to 5 years from the actual date of diagnosis Facilitated and staffed by trained HIV+ peers. Past graduates of the program are trained in group facilitation techniques and assist during the weekend, including 2 smaller unstructured groups where there is no agenda nd participants can discuss how they are finding the experience. Focus on education and peer support It is not a therapeutic group, but it is based on a peer support model. A range of emotions are expressed, but people are referred on if further emotional support is identifed as a need. This does not happen within the workshop context. Closed group setting, confidential, structured. Confidentiality is paramount. Compared to a second coming out. Strength and comfort in the knowledge that everyone at the weekend is HIV positive. The program is structured so that the topics are content become deeper as the weekend progresses and as trust develops. The difference between Friday night and Sunday afternoon. Process/Impact evaluated on continual basis. Each module is evaluated as you go along, rather than at the end of the weekend. There is a follow up debrief interview/assessment conducted after about 2 weeks Workshops held approximately every 3 months .
Initial interview/intake including: general health and needs assessment, Peer-support discussion Sexual health info/intervention Additional individual peer-support sessions leading up to and after the weekend workshop when needed. sometimes people need support prior to the commencement of the group particularly if they were indeed diagnosed recently They may not be sure if a group experience is for them or not. If ongoing therapeutic counseling is needed then they are referred on The Weekend workshop (2 ½ days). Friday night – meeting, establishing group norms, developing trust. Content becomes increasingly deeper as the weekend progresses. Debriefing session within following two weeks. Monthly ongoing closed support group after Genesis attendance, Nexus and After Hours
Doesn’t include the 15 participants from the May 09 Genesis Range since time since diagnosis 1 week to 6 years, highest percentage is 3-6 months at 28% Participant age range 18 to 45yrs, highest percentage is 25-30 at 34% This consistent with the 2007 surveillance data where there is an increase in 20 -29 newly diagnosed. This compares to 2005-2006 data No data on time since diagnosis Participant age range 18 to 62yrs and mean age was 35
The highest percentage identifed as Australian.
Living Positively Usually the peer facilitators recounting their experiences. This needs to be tempered due the changing experiences of different people. Some tell their gorey stories – can scare people. But also acknowledging that some people have had very different experiences and is relevant to today’s experience. Personal stories/experience This is included throughout the weekend. Need to maintain a balance so that the participants can share their stories and experiences. Recognising that each person has a unique and valid experience that can be contributed. This is also an opportunity to include information on preventative health in terms of living long term with HIV, exercise, diet, smoking cessation, stress management. Disclosure & Relationships This is the area where there is a lot of discussion HIV and the law Don’t go into great detail, but need to inform of the NSW context of disclosure Sexual health/Sexual Risk Taking The content has changed with time to acknowledge the trend of barebacking by poz/poz guys. Need to factor in other STI’s including syphillis which is on the increase. Understanding HIV & Treatments In the modern context to reassure. There is a lot of interest in this section. Building the doctor/patient relationship Planning for the Future This is an important focus at the end of the program. People are given resources and contacts. This is followed up in the debrief session(s). Break out small support groups during weekend led by the peer facilitators, no agenda to allow people to discuss how they are travelling or any issues they may have.
Individual responses From Feb 09 Genesis: Never stop loving yourself. The relief from feeling part of a group that is not judgemental. Is a really empowering step to the journey ahead. That there are similar stories/ you are not alone. Through Genesis I have gained hope, understanding, compassion and assurance. Do Genesis. That it is not the death sentence that it was. I can better inform other s about HIV. I would tell them that Genesis is an essential step. Testimonial Having become ill with a mystery illness in mid October 2008, after a week in hospital I was confirmed and diagnosed HIV positive. Most of November I spent in either dread or denial. At the suggestion of two friends, each of different backgrounds I heard about Genesis. I was lost and confused and had many issues that I needed to deal with. I needed to do something and quickly! I didn't want AA or some sort of group hug flag waving session. After a private consultation and a great listening ear, I thought I would give Genesis a go. Though that three day weekend was difficult to get to because of the other issues I was dealing with at the time, I made sure I got there. Amid a lot of laughs and a few tears, we learnt so much. We learnt that other guys were going through the same emotional turmoil. We were enlightened with medical information, and by Sunday afternoon I came away a lot stronger, soothed and educated. Thanks to a caring, sensitive and fun program that nurtured me through a very difficult time. It is now 7 months since I did the Genesis program and I still cannot stop spreading the word of what a great and important help it was to myself and the other newly diagnosed guys. I have passed printed information about Genesis to my GP and to HIV and other health care workers. To those who are newly diagnosed, I can only say that I could now not imagine not having done Genesis. It helped me see a clear path to the rest of my life LIVING! With H.I.V."
The Visual Analogue Scale (VAS) is the standard tool for rating of pain – either patients’ own rating or rated by the health care worker. The VAS methodology can also be used for rating of other soft variables such as skill, confidence, quality of team work etc These scales are of most value when looking at change within individuals, and are of less value for comparing across a group of individuals at one time point. Methodology people were asked to rate themselves prior to Genesis, then again on the follow up debrief, without seeing their initial response. On this Question: 0 = depressed, 5 = average 10 = very happy
0 = no skills 5= some skills 10 = fully skilled Noted that participant 4 & 5 have a decrease, unclear why.
0 = no idea 5 = some ideas 10 = fully aware All increase except for participant 4. May be that they are now more selective
0 = no plans 5 = 5 years 10 = 10 years Note that participant 1 may not necessarily be a negative outcome, may be that they have become more focused.
0 = no plans 5 = 5 years 10 = 10 years
PLUS Positive Living for US Pos person and their negative significant other ie partner, family member, friend regardless of the gender of either party. Pilot was well evaluated some issues around information around sexual matters in from of family e.g. sister v partner. Regional program Run a Genesis and train peer facilitators from that group or other identified individuals. Have had participants from Canberra to Wagga Wagga – need to organise their own funding for travel and accommodation. Victorian model Based on Genesis model, have follow ups on for previous groups – ACON has Nexus, After Hours and now guys set up their own social/support groups as a result. Increasingly don’t re-engage with services. This is seen as a success. WA Model 1 day course Peer Support model currently being reviewd by ACON and Positive Life with Graham Brown from Curtin University, Perth.