Volunteer - Peer Coaches
Peer-Support Volunteer Training:
KS&A (soon to be AXYS) is a health advocacy organization dedicated to individuals who have genetic conditions called X and Y chromosome variations (sex chromosome aneuploidy or SCA). The conditions are not inherited. They are the result of a random event called non-disjunction. Prevalence 1:500. The most well-known condition is called Klinefelter Syndrome, a bundle of symptoms that accompany 47,XXY. There are myriad variations, including mosaics.
Our Peer Support:
We have a toll-free helpline. And we have a dozen volunteers who will field calls to the helpline. Volunteers were recruited based on their interest and based on how they "showed up" on our old LISTSERV system. Some people really stood out for their expertise and for their ability to support others in need. Volunteers have specific assignments based on specific variants of SCA. For example, each volunteer must have a child with the specific condition or be an adult with the specific condition they will support. There are three major conditions: 47,XXY; 47,XYY and 47,XXX. Conditions are gender-specific. Individuals are also recruited for their age preference....from prenatal diagnosis to older adults.
Our vetting and training process is simple. Based on the recruits' performance and demonstrated knowledge in the LISTSERV (now Facebook) environment, board members reach out to the prospects to determine their interest in being a helpline volunteer. The first step to being a volunteer is to sign a confidentiality agreement. http://www.genetic.org/Portals/0/Public/Legal/Volunteer_Confidentiality_Agreement_8-14-12.pdf
If volunteers sign the confidentiality agreement, one or more board members will provide informal training for the volunteers. Training focuses on:
- Knowledge about a specific condition relative to the desired age group;
- “Bedside manner”
- The ability to be open-minded and broadly supportive – these are spectrum disorders, and someone who is little-affected can be dismissive of those who are profoundly affected if they are not aware of the broad range of impacts (we’ve had splinter groups form because of these disagreements!);
- And when it comes to prenatal diagnosis support, we vet the volunteers for any bias about abortion and for their ability to approach the support situation as an opportunity to guide the prospective parents about how raising a special needs child will affect them and their family life...as well as how the child might fare.
- We also attempt to determine the volunteer’s capacity to hold up under the pressures of a prenatal diagnosis support call. These can be emotionally draining.
- We ask volunteers who support prenatal diagnosis to deliver this message (not in so many words...but in “spirit” throughout the conversation):
- “KS&A takes no stand on abortion. That decision is yours. Individuals with SCA will likely face challenges, and some of those challenges may be substantial, but in the vast majority of cases, individuals with SCA have lives worth living. We urge you to recognize that terminating pregnancy will not “spare” the child from a hellish existence. Instead, we urge you to consider your capacity to accommodate a child who will, very likely, have special needs. Evaluate your ability to support this child and how this child might affect the rest of your family. Make your decision based on these factors. And bear in mind that there are no guarantees...even a ‘perfect’ baby can face severe challenges. If you choose to go forward with the pregnancy, we will be here to support you. And if you choose to terminate the pregnancy, we also support your decision. Do what is right for you as parents.”
- Volunteers who can embrace the spirit of that message and pledge to keep their personal feelings out of prenatal diagnosis calls are ready for the job.
Our process is focused more on the volunteer’s capacity for support than their intimate knowledge of every nuance of these conditions. Our website and other resources provide a wealth of information in intricate detail, and volunteers have these resource at their fingertips. Of necessity, a 60 minute support call from the helpline will only scratch the surface regarding ‘facts’ of these conditions, and too many facts can overwhelm callers. Instead we focus on leading callers to the resources and allowing them to digest at their own pace.
Perhaps the most important trait to look for and cultivate in a helpline volunteer is “listening.” Most callers are dammed-up reservoirs of the need, and the greatest need is to “tell.” Our volunteers’ ability to listen to the caller’s “story” is essential to the caller’s mental well-being. Callers need to feel “heard.” Most are distraught, confused, angry, guilty and full of misinformation from numerous sources. When assessing volunteers, we look for this skill...and the patience to exercise the skill when under pressure. Be believe that, once the caller has been heard, the caller will then be capable of listening to the peer support being offered.
Once the volunteer’s capacity has been assessed and they have been provided with key facts and resources to share, we continue to watch their performance in the discussion groups (LISTSERVS, Facebook, etc.) and evaluate the quality of their contributions. We also track the interactions so that any feedback from callers can be attributed to the correct volunteer.
We are very fortunate to have a very experienced, committed team of helpline volunteers. We’ve lost only a couple and added only one in the 6 years I’ve been with the organization.
This is not a rigorous “training” process as much as a process of assessment to determine the volunteer’s capacity to offer support without judgment or bias. Those who spout nonsense in the forum environments are not invited. However, our prenatal diagnosis message is tailored to the nature of SCA. Some of you represent conditions that have profoundly disabling or life-threatening impacts, and our message isn’t a good fit.