Being Social

There are various avenues caregivers can use to reach out for online social support and cancer-related information.

> For needs specific to caregiving, CareGiving.com’s community is active with members who can provide advice and support. The Family Caregiver’s Alliance also has several online support groups at caregiver.org/online-support-groups.

> Private blog sites such as LotsaHelpingHands.com and CaringBridge.org offer a way for families to share their experiences and needs, but with select individuals who have access to the blog via a password. They are able to leave comments, organize a calendar for meals and errands, and offer support. These types of sites also offer the option of making the blogs public.

> Other caregivers choose to open their experiences publicly by using popular blog sites, such as WordPress, Medium and Blogger. By using an open platform and social media, their reach may be wider, and in turn they may receive more guidance and support; however, it is also the least private.

> Message boards, such as Inspire.com and WhatNext.com, give individuals a way to connect, ask questions and offer support without the need for the discussions to take place in real time. Inspire has more than 200,000 members in its health care community. WhatNext.com was developed in part with the American Cancer Society and is specific to cancer. Caregivers can search for discussions related to a specific cancer type, or start their own.

> For cancer-specific information and advice, caregivers can look to organizations that focus on a particular tumor type or demographic, such as BreastCancer.org’s message board (community.breastcancer.org), which has over 5,000 topics related to “Just Diagnosed.” CancerForums.net also has cancer-specific discussion groups for those needing advice from peers. The group for colon and rectal cancer had over 28,000 posts as of mid- January.

> There are numerous Facebook groups available to patients and caregivers. If a group is open, anyone can join, comment and post. Keep in mind that your posts may be seen by individuals outside of the Facebook group. Many groups are closed or “secret,” which means that members must be invited or accepted and that posts are only seen by those inside the group. Stupid Cancer, a group dedicated to young adults with cancer, has several Facebook groups based on geographical location (stupidcancer.org/connect).

> There is also a growing health care community on Twitter. You can find regular hour-long chats about caregiving, gynecological cancer, breast cancer and lung cancer, to name a few. Often a topic is posted throughout the week to alert people to the upcoming chat. Look for hashtags, such as #bcsm (breast cancer social media) and #LSChat (for Lynch Syndrome), to help you find one that suits your needs. You can find a list of TweetChats and hashtags at symplur.com/ healthcare-hashtags.

Before joining a social media community, patients and caregivers should agree on a level of privacy and be open with each other about how much to share and with whom.