If you wish to make an apple

pie from scratch, you must first

invent the universe.

Far far away, behind the word mountains, far from the countries Vokalia and Consonantia, there live the blind texts. Separated they live in Bookmarksgrove right at the coast of the Semantics, a large language ocean. A small river named Duden flows by their place and supplies it with the necessary regelialia. It is a paradisematic country, in which roasted parts of sentences fly into your mouth.

Even the all-powerful Pointing has no control about the blind texts it is an almost unorthographic life One day however a small line of blind text by the name of Lorem Ipsum decided to leave for the far World of Grammar. The Big Oxmox advised her not to do so, because there were thousands of bad Commas, wild Question Marks and devious Semikoli.

How We Developed This Framework

 

Surveys. In order to bring as many community voices into the project as possible, we developed a 21 question (6 minute) survey to explore group members’ thoughts and perspectives about online peer support groups. The survey was anonymous, approved by the Arizona State University IRB, and posted using SurveyMonkey with IP address tracking disabled.

 

We asked respondents why they participate in groups, how groups can be improved, what their concerns are (if any), including with regard to privacy and security, and what other resources they use for information and support. The full survey can be viewed here.

 

We posted the survey in six online support groups focused on different aspects of living with a hereditary cancer syndrome, ovarian cancer, and/or breast cancer: The BRCA Sisterhood, Beyond the Pink Moon, BRCA Advanced, BRCA Commons, the Sisterhood of Ovarian Cancer Survivors, and My Breast Years Ahead. To date, we have received 265 responses.

 

Who participated in the survey?

 

77% of respondents were 40 years or older; 47% were between 40 and 54. Nearly a quarter (23%) of respondents were younger than 40.

 

More than half (56%) of survey respondents identified as survivors or people living with cancer, 47% identified as previvors, 2.7% as caregivers and 7% as family members or friends. Note: Percentages total more than 100 because people were allowed to check up to two categories in terms of their primary reason(s) for participating in the group (e.g., a person could be a survivor of ovarian cancer but a previvor in terms of breast cancer).

 

The vast majority (81%) of people who participated in the survey had been a member of their respective group for at least one year. A third had been a member for more than three years.

 

How and why do people use online peer support groups?

 

Nearly 80% of respondents indicated that they are active in their group(s) at least a few times a week, with 41% indicating that they are active every day.

 

When asked to indicate the reasons they participate in their group(s), the single most common reason chosen was to exchange and receive information. The second most common reason was to connect with others who share the same condition. People also participated in order to provide and receive emotional support; get and share recommendations on treatments, doctors, and surgeries; provide fact-based information to others; and obtain information from medical professionals who participate in the group.

 

What might improve people’s experience of online peer support groups?

 

The two factors most frequently identified as ones that would improve the group experience were: 1. More professional input (nearly ⅔ of respondents indicated this was at least somewhat important to improving their experience) and 2. Better privacy and security (61% of respondents indicated this was at least somewhat important to them).  A significant percentage of people also believed that more engagement from other members (49%) and more moderation or moderators (41%) would improve their experience.

 

Are people concerned about using Facebook groups?

 

Nearly 60% of respondents indicated that they did not have concerns about Facebook groups. Of the 40% that did, the single largest concern (48%) identified was that information about them might be shared by Facebook without their consent. The second largest concern (36%) was that hackers might access information about them and use it against them. The third largest concern (19%) was that people outside of the group might find out about the person’s health issue. Other concerns included Facebook banning breast and reconstruction photos, the spread of misinformation from other participants and the need for more correction by moderators or medical professionals, the need for more focused groups where like-minded people can find each other without being belittled by those taking a different route (e.g., surveillance groups), and the repetitive nature of the posts/questions posed.

 

On privacy and security

 

While 60% of respondents indicated that they did not have concerns with Facebook groups in general, when asked about how concerned they were about keeping their health information and posts private, only 16% responded that they were ‘not concerned at all’. 40% of respondents indicated that they were ‘very’ to ‘extremely’ concerned. A few people added comments indicating that though they were concerned about privacy in general, they were not concerned about their privacy in these groups precisely because they are ‘Closed’ groups.

 

Nearly 40% of respondents indicated that they had considered not participating in Facebook groups due to privacy concerns. Of those who are concerned, the three most common reasons they remain are: 1. They don’t want to lose the group of peers and relationships they have developed in their current group(s); 2. They don’t know of another options where they can find people with their condition; and 3. They don’t believe other platforms will be better than Facebook in terms of privacy. Respondents also mentioned that Facebook is where the people are, Facebook groups are global and connect people in rural communities or who are otherwise isolated to the world, and online groups allow people to post sensitive or difficult questions that could be more difficult to pose at an in-person group.

 

Alternatives to Facebook?

 

Nearly 25% of respondents reported that they use other online support groups outside of Facebook. There was no predominant other platform in use. A handful of people each reported participating in Smart Patients, FORCE, Patients Like Me, Reddit, Inspire, Livestrong, the American Cancer Society, BreastCancer.org, Young Survival Coalition, #BCSM, the Instagram Breasties, and others.

 

When asked what features they liked on these alternate platforms, responses included: more private, ability to have deeper conversations, existence of treatment support groups with Young Survival Coalition, ease and quickness of Twitter, ability to post diagnosis and treatment, and details in signature.

 

Nearly 40% of respondents indicated that they did not get information and/or support from any other online or offline organizations besides their FB groups and, presumably, their doctors. Of the 60% that did consult other sources, more than two thirds consulted other sources only infrequently.