Given the wealth of health-related information that is readily available on the Internet, it has become a routinely used resource for patients and families in their quest to better understand and plan around their illness and its treatment. An estimated 72 % of Internet users report searching for online health information within the past year (Fox and Dugan 2013). Patients and families may turn to social media in order to learn more about their diagnoses, search for guidance and treatment options, or obtain information regarding the management of treatment side effects. Additionally, these technologies may be pursued in efforts to access information on opportunities for clinical trials, second opinions, and relevant scientific research, and as such patients today often present at their health appointments in a highly informed manner.

Patients have reported that they access online health information because they want to be thoroughly informed to ensure understanding, identify questions, and be certain that information they receive from their doctors is comprehensive (Colineau and Paris 2010). Access to online healthcare information shifts the locus of control to the patient and his or her family, such that one-on-one encounters with providers are not substituted by social media use, but rather allow for richer engagement and deeper doctor-patient relationships. Greater access to cancer-related information has been associated with decreased levels of anxiety, depression, and negative self-esteem in children and adolescents undergoing cancer treatment (Last and Van Veldhuizen 1996).

No matter one’s age, coping during stressful times depends heavily on the nature and quality of one’s support systems, with stronger supports associated with more optimal adjustment and better quality of life (Treadgold and Kuperberg 2010). As such, one of the chief benefits of social media, particularly in the health-related domain, relates to its emphasis on the provision of social support. Social media use allows individuals to share information about their medical journeys with others undergoing similar experiences, thereby allowing users to better understand their condition, share stories, and get advice (Johnson and Ambrose 2006). The more connected people perceive themselves to be, regardless of the nature of the connection, the greater the benefit of perceived support (Nabi et al. 2013).

The various forms of social media can help to facilitate and promote efficient communication across a wide network of friends and family, which can be particularly beneficial for those managing taxing and stressful medical circumstances. Additionally, social media facilitate communication to help overcome barriers due to location, isolation, physical difficulties (i.e., neutropenia, mobility issues, fatigue), scheduling challenges, cost, and limited resources, while also providing anonymity and support when desired (Treadgold and Kuperberg 2010). In recent years, patients and their families have turned to social media as a way to share and disseminate information about their (or their child’s) illness to a large support network. For example, websites such as CarePages and CaringBridge are designed specifically for people experiencing medical illness and provide platforms which allow users to maintain blogs for updating family and friends through journal entries or to coordinate everyday support. If families prefer to have a social media means of organizing care and support but are not interested in maintaining a blog, websites like Lotsa Helping Hands may be useful. Such sites permit members of the user’s online community to leave supportive messages, in addition to providing a forum for efficient organization and delegation around pragmatic tasks (such as meals for the family, visits, and rides to the hospital). It is often helpful for families to delegate the task of updating these sites to another family or community member so as to minimize stress on the parent.

Using social media allows patients and families to access ongoing support across an extensive network of friends and family, without having to contact each person individually, thereby reducing the burden of an otherwise time-consuming and emotionally exhaustive task. Utilizing social media, patients or family members can provide updates when they are ready and available to discuss their experiences, and “visitors” can leave supportive messages of their own. In this regard social media provides opportunities for patients and families to receive ongoing emotional and practical support, as well as “virtual” visitation from loved ones. Additionally, utilization of social media can serve as a fundraising mechanism where patients and families can, among many things, ask for donations to help with costly medical care, raise awareness about a diagnosis, or engage in blood or bone marrow drives. For bereaved families, or those whose children are nearing end of life, social media can provide a therapeutic means to document and preserve memories of their child, as well as celebrate and honor them (Tunick and Brand In Press).

Illness and invasive treatments can place individuals at risk for disruption of normal development and significantly impact ones access to social support. This is particularly true for adolescents and young adults (AYA) who rely on peer relationships and social acceptance to formulate an identity and foster independence (Suris et al. 2004). AYAs with chronic illness often have a significant number of school absences or are homeschooled during more intensive treatments. Research indicates that peer support is invaluable in helping AYAs cope with their illness (Hollis and Morgan 2001; Treadgold and Kuperberg 2010). In fact, AYAs rank the availability of peer support as the top priority among various aspects of the cancer experience (Zebrack 2008), further validating the benefits of virtual support networks and communities.

While many forms of social media are developed to maintain existing relationships, other platforms serve as a means for people to develop new connections. In the health realm, this is especially important as patients value the shared experience of connecting with others who are undergoing (or have undergone) a similar illness or treatment course. Such a community can often provide a level of empathy and understanding that doctors, nurses, or even close friends or family cannot (Colineau and Paris 2010). Social media also benefit patients because it provides a mechanism for contact when individuals are remotely located or when physical contact must be limited. Shirky (2008) noted that each year, thousands of online communities are formed for access to information and to gain emotional support for being sick.

The formation and use of virtual support networks is particularly helpful in pediatric cancer, as many types of childhood cancer are quite rare. Online support communities allow families undergoing similar experiences to become closely connected, regardless of geographical location. Families around the country (and even more broadly around the world) can connect via social media to build relationships and exchange support with others undergoing similar experiences, therefore helping them feel less isolated in their own journeys. Not only do virtual communities break the barrier of geographic location, they allow access to information and support on an individual’s own time frame and at their own pace, which can be particularly important for parents who are highly stressed or who have unpredictable schedules.

The need for peer support and acceptance may be further complicated in pediatric cancer by the feeling that non-ill peers may not understand or accept the affected child. Many adolescents and young adults have such a profound wish for normalcy that they keep their cancer experience separate from their healthy peers (Suzuki and Kato 2003). Furthermore, parents often communicate the need to remain cheerful and optimistic, indirectly leading youth to feel unable to express their fears with them (Treadgold and Kuperberg 2010). Given such circumstances, a virtual community of support can provide a unique opportunity for patients to discuss stressors and fears with those who genuinely can understand and share their experiences. Given ill patients often have limited access to peers with a shared diagnosis or close location, online forums for this type of support are increasingly relevant and important. Interestingly, surveyed users of online health communities indicated that they do not consider the people they meet in online health communities to be strangers, but rather as peers or trusted people whom they consider friends (Colineau and Paris 2010). Given the critical importance of peer relationships, it is essential that providers pay close attention to AYA capacity to access peer support networks when undergoing treatment.