When deciding if you want to seek support through a cancer community you may be wondering if online cancer support groups are a helpful addition to your plan of health. Many people with cancer experience tumultuous emotional, psychological, and physical changes during the entire course of their disease (i.e., after diagnosis, throughout their treatment, during and after recovery). These experiences can be difficult to bear on one’s own and some people with cancer seek out support groups to share these experiences. Online support groups are a popular option for many people living with cancer because there is no time constraint and you can participate at home. In a well-functioning group, members can build strong social ties that help them manage living with cancer and reach personal goals. These groups typically involve virtual meetings, chat rooms, or webinars to bring members together. In this article, you will learn about the strengths and weaknesses of these online groups to help you decide if it is an appropriate fit for your web of support.
Are Online Cancer Support Groups Helpful?
Overview
Support groups are a type of peer support that is made up of group members who meet with each other through different formats (i.e., face-to-face, online, telephone, etc.,) to share experiences and exchange information. These social groups are designed to help you connect with other people with similar life stories who ideally will relate with you on a personal level.
Studies have shown that people under a high amount of stress will experience less depression and mood changes with a social support system in place. Social support (like what you receive in a support group) can help to offer protection against the harmful effects of stress and bring a sense of safety in a group in solidarity.
Different types of online support groups include:
- Webinars
- Chat rooms
- Social media (i.e., Facebook™)
- Moderated discussion groups
Cancer support groups that take place in chat rooms typically involve members posting and replying to posts. If you are joining this type of group, you may be asked to create a personal profile, or a page dedicated to sharing personal information about you (like a photo of yourself or where you went to high school). In the group, you often will share updates or have conversations in the support group network. Some cancer patients find that through sharing stories with support group members they may learn of new treatments and have a place to express concerns they have about treatment itself.
Living with Cancer
A positive aspect of any support group is providing a private and safe space to talk about how cancer impacts their lives. Members of an online cancer community may also develop strategies for navigating life (for example personal relationships or professional lives) through conversations with other people during all stages, including those who have survived.
For instance, young people with cancer often face new challenges because they may be trying to find secure employment or just beginning their career. Living with cancer typically involves taking time off work for treatment and recovery which can be stressful or cause problems with employment. Peer support through an online cancer community can help young people with cancer access resources that help them to manage work and set career goals. Further, a support group can offer people a place to talk to those who held a professional career after cancer recovery to get advice on how to handle returning to work.
Different core subjects that people seem to want to talk about in online cancer communities include:
- Insurance or financial support
- Hair loss
- Relationships
- Parenting advice
- Managing impact of cancer on their bodies
- Fitness advice
- Debilitating effects of treatment (i.e., infertility or weight loss)
- Navigating the pandemic being immunocompromised
- Coping with death of friends with cancer
If you choose to join an online cancer community to help build this web of support, a good look at the strengths and weaknesses of these forums can help you find the best option.
Strengths and Weaknesses of Online Support Group Forums
Strengths: Access, Peer support, and Relief from Isolation
The strengths of joining an online support group for cancer include:
- Access to support
- Therapeutic attributes
- Access to medical information
- Connection to peers
- Isolation relief during COVID-19
Access to Support
The convenience in attending an online support group is ideal for people living with cancer, especially for those undergoing treatment or recovering from surgery. Face-to-face groups offer those who attend a safe space to meet and grow a close connection in person. These groups allow an ease of communication not afforded to those who attend online support group meetings. However, in person groups often suffer from lack of attendance and a high dropout rate. People coping with a life-limited illness have many appointments to attend, treatment to endure, and often must take care in public settings because of immunocompromise. Meetings may be scheduled at inappropriate times and the distance traveled to attend can be inconvenient (especially for those who live in a remote location, cannot drive, or have poor access to transportation). Further, cancer treatment is physically demanding and can be too difficult to attend for those in active treatment.
Therapeutic Factors
Support groups are often used by cancer patients as a resource for information and support and a means to cope with the stresses of having cancer. Some people who attend support groups have reported a decrease in depression, a renewed interest in life, and a new perspective of their illness. These groups have been shown through research to help reduce three major stressors that are associated with cancer:
- Loss of control
- Loss of hope
- Unwanted aloneness
Empathy is a type of emotional support that is distinct from other forms of support such as prayer, encouragement, sympathy or physical affection. Cancer patients in online support groups find that they have a space where they feel comfortable to share their personal experience in their illness such as concerns, feelings, or moods they are having. This sharing of personal experience creates an atmosphere of closeness and empathy shared between members. This empathy shared between members of the group allows for a shared experience where energy is created and a common goal of helping each other is achieved.
When you disclose feelings buried deep inside of yourself, you release yourself from internal anguish with an immediate benefit to your body. Yet, the act of expression itself helps you to understand and know the deep-seeded feeling inside that you would not have been able to work through on your own.
Medical Information
People with cancer will use online social support as a resource for medical information for the following reasons:
- Learn about what side effects to expect and how to manage them
- Clarify uncertainty about future chemotherapy treatments or surgeries
- Understand what happens after treatment
These support forums provide an accessible resource to listening to peer experiences with diagnosis, treatment, and thereafter. But, keep in mind that there is a lot of misinformation that takes place online and check with your doctor to verify what you read online.
Connection with Peers
People with a shared experience who can support each other in positive ways are considered to be peers. For those living with cancer, peers can be sought in a safe setting to act as a circle of support during a challenging time in life. Seeking out social support, even through social media or online, can help lessen the loneliness that accompanies cancer, especially around family or loved ones. Many people with cancer find that their family and loved ones are nervous and even afraid to talk about cancer. This leads to feelings of isolation for those dealing with cancer that are exacerbated when immunocompromised and unable to socialize person to person. In an online support group, loneliness is reduced when group members feel comfortable to open with each other about the challenges they are facing and coping strategies.
Covid-19
Participants in online support groups have expressed that this combatting of loneliness became even more important during the COVID-19 pandemic. Being immunocompromised and fear of getting the virus drove people to practice strict social isolation for safety. The virtual world was opened up during the pandemic to help give the isolated opportunities to connect with people online.
Weaknesses: Poor Social Ties and Clinician Concerns
Weak Social Ties
People join support groups with the purpose of building social support. However, online support groups sometimes fail to build strong ties with group members. While these groups reach a diverse number of people across the world and tend to be open and inclusive, the anonymous nature of groups that do not meet in person can hinder transparency and openness between group members. For example, some group members may not want to disclose where they are from demographically because of judgment or biased communication. Nonetheless, for many, the appeal of these groups is the privacy allowed in the group where you do not have to share everything about yourself in order to receive support.
Clinician Concerns
Some clinicians and academic professionals have communicated concerns regarding online cancer communities and their value, especially for those who are vulnerable or seeking medical advice. Many people who are affected by cancer will be dealing with a spectrum of emotions and mental states, including anxiety, distress, depression, and fear. Clinicians are concerned that reading distressing and fearful posts can worsen intense or unresolved emotions and give a negative impression of living with cancer. Many of these groups are not hosted by a trained specialist who can address specific needs and concerns of individuals attending or who have left a post asking a question. Lastly, these support forums may not be monitoring the accuracy of medical information provided and misinformation can mislead people in the wrong direction of treatment.
Remember that only your physician and cancer care team have your medical care in mind and in your best interest. All steps in your treatment regimen are designed by your cancer care team to be specific and unique to you alone. Your physician is your best source of advice and the only person from whom you should take medical advice. You may be in a cancer community that talks about treatment plants, medications, and side effects from treatment. Keep in mind that a person may have a different response to treatment than you will (for example side effects from a medication) and any concern about treatment should come up during your appointment.
References
Harkin, L. J., Beaver, K., Dey, P., & Kartina Choong. (2017). Navigating cancer using online communities: A grounded theory of survivor and family experiences. Journal of Cancer Survivability, 11, 658-669. Retrieved from Springer: https://link.springer.com/content/pdf/10.1007/s11764-017-0616-1.pdf
Lazard, A. J., et., al. (2021, September 02). Using social media for peer-to-peer cancer support: Interviews with young adults with cancer. Journal of Medical Internet Research, 7(3), Retrieved from JMIR Publications: https://cancer.jmir.org/2021/3/e28234/
Pechmann, C., Eunjung Yoon, K., Trapido, D., & Judith J. Prochaska. (2020, October 19). Perceived costs versus actual benefits of demographic self-disclosure in online support groups. Journal of Consumer Psychology, 31(3), 450-477. Retrieved from SCP: https://myscp.onlinelibrary.wiley.com/doi/full/10.1002/jcpy.1200
