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.
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.