Having cancer can be a very isolating experience for patients and their loved ones, whose extended friends, family, and even doctors may not be able to truly understand what they are going through. With a rare cancer like mesothelioma, this isolation can feel especially profound.
Mesothelioma support groups offer a unique opportunity for patients and their loved ones to connect with other people whose lives are directly affected by mesothelioma. These groups offer the chance to share space and participate in a community with other people who have been through what you are going through. They offer a sense of shared experience that may not be possible with people whose lives have not been affected by mesothelioma. They also offer essential resources and advice for mesothelioma care, treatment, and coping methods, as well as information about new developments like clinical trials.
Not all mesothelioma support groups are the same, and different groups vary in several important ways, including how they are led, how they are structured, and where they take place. Read on for a full run-down on mesothelioma support groups to learn more about the right type of group for you.
What is a Support Group?
Support groups are places where people who are struggling with the same issue can go to share experiences, resources, support, and community. There are a number of different types of support groups, depending on several factors.
- Peer Leadership vs. Professional Leadership: Some support groups are “peer-led”, meaning they are led by other people who have been personally affected by the issue. In the case of a mesothelioma support group, this can be a mesothelioma patient or survivor, or a family member, caretaker, or friend of a mesothelioma patient or survivor, depending on the group.
Peer-led group leaders do not necessarily have to be accredited or hold professional degrees, though some are certified peer support (CPS) specialists. CPS leaders receive training in trauma, recovery, and peer support to help use their lived experience to facilitate the group. Some peer-led groups do not have a single leader, but rather are led communally or by a rotating leader that changes with time.
Other support groups are run by professional practitioners who may not have lived experience with mesothelioma, which may include social workers, mental health professionals, psychologists, counsellors, clergy members, and other specialists who have training in facilitating support groups, and often have experience working with the mesothelioma community. Professional practitioners are usually accredited and may hold advanced degrees in counseling or related fields.
- Remote vs. In Person: Different types of support groups happen in different forums. Some support groups happen in person and require group members to come to a specific location for meetings. Other groups happen online, through open or closed forums, message boards, Facebook groups, or Zoom calls. Some online groups can be accessed by phone for those less comfortable with the internet, usually through a secure dial-in number. There are also hybrid mesothelioma support groups, which offer alternating online and in-person support sessions, or offer patients and their loved ones the opportunity to join in-person sessions online via video or phone call.
Both in-person and online mesothelioma support groups have pros and cons, many of which depend on your personal needs and preferences.
Some people find that in-person support groups are easier to engage with, as it can sometimes be harder to feel a sense of community or participate fully in online or Zoom-based groups. This is especially common among those who struggle with technology generally, and who have difficulty with online or video-call communication.
However, this is not always the case; some mesothelioma patients and their loved ones do not find it difficult to connect on an online or remote platform, and even find that certain aspects of online groups—such as increased privacy and anonymity—helpful in reducing anxiety and hesitance about discussing issues that might be more uncomfortable for them to discuss in person.
Moreover, some participants are not able to reliably attend in-person meetings, as the demands of treatment and dealing with the daily realities of mesothelioma can make it difficult to take on additional appointments. This is especially true considering the ongoing risk of COVID-19 exposure for often-immunocompromised mesothelioma patients. In addition, participants may not live close enough to any ongoing support group to be able to attend in person.
- Structure: There are several different ways that mesothelioma support groups may be structured when it comes to what actually occurs during each meeting. Some groups are much more structured, and have a specific agenda and curriculum for each meeting. These groups, which are often professionally led, may also invite guest lecturers to speak and provide resources to the group. More structured groups may have a specific number of sessions, with a designated end-date.
Less structured mesothelioma support groups will generally have at least some type of basic structure that each meeting follows, and guidelines to ensure that everyone gets a chance to participate. They may have an overall theme for each session, but they will generally not have a strict agenda or curriculum (though the group may provide additional resources that participants can access if interested). In addition, less structured groups tend not to have a finite number of sessions, but rather are generally held on an ongoing basis, with participants free to come and go as they desire and are able.
- Intended Participants: Each mesothelioma support group has an intended set of participants. In some groups, anyone who has been affected by mesothelioma, whether they are a patient or a loved one/caretaker, is welcome to attend and participate. Other groups are specifically meant for mesothelioma patients and survivors, while still others are specifically meant for loved ones and caretakers of those with mesothelioma. In addition, there are some mesothelioma support groups meant for certain affinity populations, such as women, people in a certain profession (such as dock workers or construction workers), veterans of the U.S. military, or 9/11 first responders. Make sure to choose a mesothelioma support group with a population that will make you feel most comfortable.
Are you or a loved one looking for more information about mesothelioma? Call Satterley & Kelley, PLLC at (855) 385-9532 to learn more.