What is Peer Support?

Aug17

Peer Support for those living with Chronic and Rare Conditions seems to be offered everywhere you look these days when researching information about diagnostic and treatment options. In fact, the term ‘Peer Support’ is becoming a buzzword, attracting attention to chronic or rare condition organizations’ websites. But, what exactly is ‘Peer Support’? According to PeerNet BC, where I received my Certificate as a Peer Support Group Facilitator in 2009:

“A peer-led group consists of people who may come from different backgrounds but share similar life experiences and goals. They see the value in being part of a group where leadership is a shared responsibility, and all members participate equitably. Peer-led groups are autonomous and, while they may opt to seek advice from outside sources, the decision-making power remains with the group.”

So, there are three elements to a Peer-led group: Participants have different backgrounds but similar life experiences; they see value in sharing the creation of goals and guidelines; members are the experts, and may also call upon outside sources of expertise, but the decision-making is within the group.

  • The role of the Facilitator is to insure that goals and guidelines for participation are created by the members, not only at the outset, but when adjustments over time need to be made.
  • The Facilitator is not the expert on the subject of the group. For example, the Facilitator for a Scleroderma Peer Support Group does not act as the group’s expert about Scleroderma; rather, their job is to enable participation by all members, and to moderate the group by following its agreed upon guidelines.
  • The Facilitator is a peer, so will have a shared life experience of Scleroderma, and may even be a healthcare professional in their personal life, but not in their role as Peer Group Facilitator.

lucas.tvdsb.ca

Peer Support is one benefit of being in a Peer-led group. You are in a group of people who have a common interest and lived experience. But, how is Peer Support given in a way that is helpful and safe when no one in the group is a healthcare expert? or how is it given in 1:1 coaching? According to the Canadian Immunodeficiencies Patient Organization (CIPO):

  • Peer Support is not giving advice, it is sharing of experiences
  • Peer Support encourages individuals to think and speak for themselves

Now that I’ve explained what Peer Support is, and what a Peer-led Group is, are you finding these in your search for support as you navigate your healthcare journey?

For clarity about the importance of good peer group facilitation, here are two examples of poorly facilitated peer groups from my recent encounters:

  • An organization that claims to provide online peer support groups. Still, after requesting meeting information from the four group leaders three times over 10 weeks, the only responses I get are an automated vacation reply from one leader and an offer by the organization twice to look into the problem.
  • A peer support group that opened with a participant relaying a graphic description of a friend’s murder, which elicited a flood of Facebook-style emojis in the chat box, as well as more graphic trauma stories from other participants. The facilitator said anyone not interested should just mute their audio.

With regard to the first example, clearly these leaders do not have the training or sensitivity to respond to a request for support. An organization leaving you hanging for weeks on end does not bode well for how well these leaders are trained or capable of facilitating their groups. Leaving a person hanging when they are seeking support violates what I would call a ‘Prime Directive’ in providing peer support: everyone counts.

Safety is the word, or lack of safety, that comes to mind with the second example. I wondered, had I accidentally logged in to a murder survivors’ support group? I thought I was logged into a support group for networking and education and support for people with a particular health condition! This avalanche of trauma-related sharing is what trained group facilitators call a ‘pity party’, and preventing them is one of our main functions. This graphic sharing needed to be addressed immediately and sensitively by the facilitator, e.g. affirming the gravity of their story, suggesting appropriate places for trauma counselling and opening the floor to other suggestions for outside help, while bringing the group around to the healthcare topic at hand. I never did get any information or shared experience from anyone in this group about medical genetics or local resources, which is the support I came to the group to learn about.

Now that you have more information about what Peer Support is, and what it is not, I hope your search is fruitful and that you have some new means of discerning how to best find the support you seek.

I wholeheartedly endorse engaging with peer support, whether in 1:1 coaching or in a peer-led group, in conjunction with your professional healthcare providers. I’ve written this article so that you may know more about what to expect and what to look for when seeking peer support.

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Enteroviral Infection in ME/CFS

Aug10

New paper, published 18 June, 2021:

“We conclude that there is considerable evidence that prior outbreaks of ME/CFS were caused by one or more enterovirus groups.”

The Enterovirus Theory of Disease Etiology in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Critical Review

Adam J. O’Neal and Maureen R. Hanson*

Department of Molecular Biology and Genetics, Cornell University, Ithaca, NY, United States

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, multi-system disease whose etiological basis has not been established. Enteroviruses (EVs) as a cause of ME/CFS have sometimes been proposed, as they are known agents of acute respiratory and gastrointestinal infections that may persist in secondary infection sites, including the central nervous system, muscle, and heart. To date, the body of research that has investigated enterovirus infections in relation to ME/CFS supports an increased prevalence of chronic or persistent enteroviral infections in ME/CFS patient cohorts than in healthy individuals. Nevertheless, inconsistent results have fueled a decline in related studies over the past two decades. This review covers the aspects of ME/CFS pathophysiology that are consistent with a chronic enterovirus infection and critically reviews methodologies and approaches used in past EV-related ME/CFS studies. We describe the prior sample types that were interrogated, the methods used and the limitations to the approaches that were chosen. We conclude that there is considerable evidence that prior outbreaks of ME/CFS were caused by one or more enterovirus groups. Furthermore, we find that the methods used in prior studies were inadequate to rule out the presence of chronic enteroviral infections in individuals with ME/CFS. Given the possibility that such infections could be contributing to morbidity and preventing recovery, further studies of appropriate biological samples with the latest molecular methods are urgently needed.

Keywords: myalgic encephalomyelitis, chronic fatigue syndrome, enterovirus, chronic infection, RT-PCR, serology, immunohistochemistry, cell culture

Open Access link: https://www.frontiersin.org/articles/10.3389/fmed.2021.688486/full

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Nov1
We had a wonderful day at UBC’s Allies in Health Community and Patient Fair!
We participated as panel presenters at two sessions. Jude Swanson and Susan Katz joined two other community speakers at a presentation on ‘What works and What Doesn’t’ in the Health Care System. 

In the afternoon, all four of us, Susan Katz, Susan Trapp, Jude Swanson and Margo Robinson spoke to an oversold crowd about our experiences of mental health care and recovery.
This was the fourth year of the Fair, an opportunity for patients/care recipients to directly meet with and inform health care professionals about our conditions and what has helped and what has hurt.
We are grateful to the UBC Health Care Communications Department for making these annual events possible. Without them, the patients’ voices do not enter the training of our health care professionals.
The message, of partnership between patient and provider, is powerful and enduring.
Our gratitude to PeerNetBC for supporting our ongoing writing program as an independent writing 
co-operative for mental health consumers.
Thank You!
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MEET US AT UBC ON OCTOBER 31ST!

Oct23
PLEASE JOIN US AT THE FAIR!
UBC’S 4TH ANNUAL ALLIES IN HEALH COMMUNITY AND PATIENT FAIR!
• Over 35 community organizations with a vast range of services
• Learn about valuable community resources
• Chat with patients, patient family members, consumers, and the groups representing them
• Free refreshments • Drop in any time
The Recovery Narrative Project writers will be sharing a booth with PeerNetBC! We’ll be there to answer questions you have about mental health experience and recovery, and we’ll be selling both of our books!
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Date: Wednesday October 31, 2012
Time: 10:30am-4:30pm: **Note: our group will be away from the PeerNetBC table from 12:45-2pm presenting in a closed panel presentation.
Location: Life Sciences Centre West Atrium, 2350 Health Sciences Mall, UBC Campus
From 10:30-4:30 on Wednesday October 31, 2012 to learn about community health organizations and resources available to health professionals. The Fair will include patient panels, community exhibits and prizes.

More information about our books at the UBC Health Care Communications Department:

More information and directions for the Fair:

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