Creating a Repertoire of Support: How Young Adult Cancer Patients and Their Relatives Use Communication and Media

Abstract: 

Young adult cancer patients are in need of various forms of support. Potentially, a wide social network of formal and informal supporters provides emotional, informational, and instrumental forms of support. Instead of relying on one source, young adult cancer patients are searching for help in various digital and non-digital communication channels. Thus, also research and treatment measures should pay attention to this diversity. Based on the concept of media repertoires and ego-centered network analysis, we therefore developed the concept of support repertoires.

The support needs of young adult cancer patients significantly differ from the needs of children or older adults suffering from cancer. Their social structures are not yet well established (e.g. separation from parents, independent strong ties, long-term partners). The coping of a severe disease is a very untypical development task among peers, which additionally hinders the provision of social support in the personal social network of young adult cancer patients. Existing research already shows that adolescent and young adult cancer patients (AYA) frequently use digital forms of media, such as online cancer groups. However, studies often neglect the overarching perspective on the various forms of social support, including interpersonal contacts within the existing social network, online support groups, support by health professionals, and support from many other sources.

Against this background, six qualitative interviews including social network maps were conducted with male and female cancer survivors aged 20 to 40. A qualitative ego-centered network analysis was used to identify support repertoires of AYA cancer patients. Results confirm that the concept of support repertoires allows for a complex and wider perspective on support sources, because it includes media- and non-media-related ties and actors. On the one hand, we found actors or entities, who provide the support (i.e. the alteri). In addition to the known providers such as health professionals, parents, partners, and friends, the young adult also reported about the central role of online and para-social supporters. Furthermore, media activities such as gaming, music streaming, or picture watching often provide emotional or esteem support. On the other hand, different digital and non-digital media constitute the tie to the provider of support (i.e. the ego-alteri-relationship). The results indicate that mobile and social media significantly improve the connection to various (mostly informal) providers (e.g. via text messaging or social media) and improve the autonomy of the patient. Beyond the clarification of relevant alteri and ego-alteri-relationships, networt analysis also provides information about alteri-alteri-ties. It seems that health professionals and informal sources are not well connected, while digital media improve the connections between informal support groups.

Our results have several theoretical, methodical and clinical implications. Some forms of support that we identified (such as parasocial supporters), are often ignored or considered as troublesome in research and therapy, although they might be very helpful for the patient and should be integrated in (tele-)medicine.