Navigating your illness can be complex, this section contains blogs that strive to simplify this process for everyone.
Cancer is a devastating affliction that can quickly change the course of someone’s life forever. Whether you have experienced cancer personally or through someone in your family, you know how isolating, frustrating, and scary each day can be. While modern medicine continues to make significant leaps towards discovering new treatment methods, some of these can be devastating on a patient while reducing their quality of life in many ways.
Thus, it is essential to offer peer support resources for those with cancer. Today, there are many ways to connect with peers who you share experiences or who can offer support. This kind of support is vital for dealing with your diagnosis and going through your treatment. Let’s discuss how peer support groups can work for you, some options for engaging with your peers, and specific ways you can help others.
Can peer support groups help me?
Peer support groups were created to provide a shared, safe space to discuss the challenges of cancer diagnoses, cancer treatment, recovery, and life after cancer. Each kind of support group serves different purposes, but the primary goal is to create a community of people that understand each other, support each other, and offer essential advice from shared life experiences. In short, one peer support group is not the same as another.
To get the best out of a peer support group or similar resource, you must consider: (1) the severity of your cancer and what modality (in-person, remote, etc.) would be best, (2) what your specific emotional and physical struggles are with your diagnosis, and (3) what benefit you expect to receive from this group or resource.
Research has shown that those with severe, life-threatening forms of cancer would benefit more from social support groups. For example, a study on women with breast cancer demonstrates that those who attended peer support groups experienced lower death rates. The psychosocial and emotional benefits of a peer community with shared understanding are notable and include an improvement in quality of life and wellbeing by strengthening stress coping mechanisms (Read more).
Data also suggests that peer support groups benefit individuals by directly increasing a person’s quality of life through shared experience and support. In a study that focused on individuals with brain cancer, results showed that depression, anxiety, and stress metrics were lower while participation and self-care rates were higher in a support group than compared with a control group. This shows that peer support groups can be incredibly helpful to those experiencing cancer, even after only six weeks of participation.
Should I attend an in-person or virtual peer support group?
There are many benefits to both in-person and virtual peer support groups. In-person groups may offer more opportunities for individual connection and relationship building with those who have gone through similar events. However, virtual groups may provide a wider sense of community and increase your opportunities to connect with a much broader and diverse group of people. While previously it may have been difficult to imaging connecting with others virtually, the COVID pandemic has shown us that technology can significantly facilitate this.
Should I seek out groups and support over social media?
Social media can be an effective tool for connecting with individuals who have had or are currently experiencing similar obstacles as you. As a public domain that anyone can access, it is important to know the advantages and disadvantages of seeking peer support resources over social media. No one person or case is the same and, as such, it is important to consider the advantages and disadvantages specifically related to your needs.
Social media offers the advantage of connecting with your peers in an easy, convenient way. Joining a peer support group over social media can be as simple as logging into your smart device or mobile phone, enabling you direct access to people who share your experience. The benefit of increased, easy access could be highly useful to many; however, others may want a more personal support experience. Interestingly, research suggests that 94% of people aged 18-39 own a smartphone that could link with support services; in this study, most participants felt supported and validated about their treatment and life. Using hashtags, you can also follow any topics that may be of interest to you and quickly catch up on discussions you may have missed.
While there are many advantages of using social media for peer support connection, there are disadvantages to consider. The need for continued online community regulation and administration as well as the overwhelming abundance of resources creates a challenge for many who are seeking effective support. Studies suggest that it is difficult to determine and measure how social support occurs over social media. While social media can provide access to others who are experiencing similar struggles, these communities are often unregulated and the level of meaningful social support they provide is questionable. If you are concerned or have questions about information relevant to your disease on social media, Join Us to share these concerns and to gain clarity.
Where can I find peer support groups for brain tumors?
Peer support groups are offered for a variety of cancer types, including brain tumors. But what are the most well-established peer support groups and how do you find one that works for you? Whether you are attending a support group in-person, calling in virtually, or seeking help on social media, there are a variety of resources available.
In-Person. Finding a local, in-person support group that you feel comfortable with can be a challenge. To search for in-person peer support groups, you can navigate to the American Brain Tumor Association and follow the appropriate prompts. They offer a way to search for and connect with cost-free, in-person options that are nearest to your location. Further, if you can’t find a convenient location, you can contact the Brain Tumor Association CareLine at 1.800.886.2282 to receive additional resources.
Many virtual programs are run by highly qualified specialists dedicated to providing meaningful support to you and your loved ones. Some popular, highly rated virtual resources for peer support include the free, 15-week online peer group for people caring for someone with a brain tumor through CancerCare or the online support group through The Brain Tumour Charity, which offers a direct connection to others diagnosed with brain tumors.
Social media offers a variety of ways to connect. If you are searching for a community to join for ongoing, open discussion of your journey with brain cancer, consider joining the following accounts ran by the National Brain Tumor Society. You can follow this organization’s Facebook, Twitter, or Instagram profiles and use their suggested hashtags. Further, if you are searching for social media that targets the brain cancer population with regular motivational and informational posts, consider following an Instagram community from a fellow survivor. Searching for relevant hashtags from the National Brain Tumor Society and seeing who utilized them is one way to find communities that work for you. Many survivors are dedicated to sharing their stories, offering influential advice, and empowering fellow people with cancer to continue their fight.
What kind of help should I look for?
The kind of help that you should look for will depend entirely on your specific needs and the status of your condition. Studies suggest that social support is multi-dimensional, and needs are highly variable from person to person, but that social support can be directly related to cancer prognosis. Truly, it is your choice to seek out peer support, but it is important to consider the benefits and disadvantages of these various supports. First, you should know that a decreased risk of mortality is directly correlated with perceived social support or having a large social network. Let’s examine this correlation more closely.
For example, if you have terminal cancer, you may be driven towards in-person connection and support while it may be healthier to join a virtual group to prevent additional infections or problems. On the other hand, those with early-stage or less severe diagnoses may feel more compelled to join virtual programs since their cancer has not yet impacted their ability to work, play, and enjoy life. For these individuals, the diagnosis could also come as a shock, and in-person support may provide better opportunities to build relationships.
As stated, one way to decide what kind of help is to focus on your specific needs. If you want to simply connect with others to get shared information and become part of a community, seeking help through a virtual platform may be the best option. However, if your goal is to build relationships and seek specific guidance and support, attending an in-person peer support group may be the better option.
How can I help other people on their cancer journey?
Cancer is a rigorous journey that no one should face alone. Survivors have stated that the support of their loved ones and other survivors is a pillar for effectively battling cancer. That said, we know that social support needs vary among those with cancer and survivors. Thus, it is important to remain open and share your cancer experience so that you can continue to validate other people’s struggles and the uncertainty they face with cancer.
Continuing to provide peer support while seeking out assistance for yourself is one of the main ways you can help others on their journey. It is the effort of open connection and support throughout your entire battle with cancer that instills hope in those battling cancer, their loved ones, and survivors. By sharing your story and experience, you consciously and unconsciously influence other people to continue their fight. At WeTrials, we want to learn more from your experience to help others in our community. So, if you feel like sharing your experience, Join Us to recommend topics for our Blog or to spread your message through our “WeTrials Experience Podcast”.
Peer support groups are an essential tool for ensuring you have the social support necessary to manage your cancer. That said, seeking support is not easy and there must be different avenues to receive assistance. Depending on your individual preferences, you may seek out an in-person support group, a virtual group, or even a supportive online community.
In summary, to select the appropriate modality of support for you, you must consider the severity of your cancer, the way it impacts you, and the type of validation or support you need. This information will give you insight into what kind of support will best work for you, increase your quality of life, and reinforce your social support network.
Should you need help connecting with any resources, you can search for opportunities through CancerCare, The Brain Tumour Charity, the National Brain Tumor Society, or other organizations to connect with people who can provide support, resources, and guidance during your journey with cancer. Remember, peer support groups can lead to an improved quality of life and longer life expectancy while your shared experiences could provide inspiration for others going through a similar struggle.
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