Exploring Psychosocial Support Online: A Content Analysis of Messages in an Adolescent and Young Adult Cancer Community

Abstract

The increased usage of online cancer support groups as a resource for health-related information and social support has sparked numerous discussions about the role of online support in healthcare. However, little is known about the role of social-networking groups focused on supporting adolescents and young adults (AYAs) dealing with cancer. The current investigation report findings from a content analysis designed to explore how AYAs use an online support group to meet their psychosocial needs. Overall, members of the community focused on exchanging emotional and informational support, coping with difficult emotions through expression, describing experiences of being an AYA dealing with cancer through language (metaphors), enacting identity through evaluations of the new normal (life with and after cancer), and communicating membership as an AYA with cancer. This study highlights the unique needs of the AYA cancer community and offers a preliminary roadmap for practitioners, and network members, such as family and friends, to attempt to meet the needs of this unique community.

Adolescent and Young Adult Oncology, Version 2.2018, NCCN Clinical Practice Guidelines in Oncology

“…214 AYA peer support groups have been developed in a variety of formats, including face-to-face meetings, camp style formats, or online support groups. 215,216 Social networking groups focused on supporting AYA patients are particularly helpful for exchanging 2 primary types of support-informational and emotional-through providing advice and empathizing with other AYA patients dealing with cancer. 216 Summer camps and adventure programs where participants are physically challenged have resulted in improvements in self-confidence, independence, and social contacts.…”

“…215,216 Social networking groups focused on supporting AYA patients are particularly helpful for exchanging 2 primary types of support-informational and emotional-through providing advice and empathizing with other AYA patients dealing with cancer. 216 Summer camps and adventure programs where participants are physically challenged have resulted in improvements in self-confidence, independence, and social contacts. 11,215 Many of the AYA patients may not be interested in conventional cancer support groups but are willing to participate in social networking events involving other AYA patients, survivors, and family members.…”

Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community

“…Specifically, the LIWC software discriminates 80 output variables [45], and the present analysis focused on the following: word count and words per sentence (included in the general descriptors category); verb tense (past, present, and future) and pronouns and personal pronouns (included in the linguist dimensions); positive and negative (anger, anxiety, sadness) emotions (included in the affective processes category); insight (think, know, consider), causation (because, effect), discrepancy (should, would, could), tentativeness (maybe, perhaps), certainty (always, never), inhibition (block, constrain), inclusiveness (and, with), and exclusiveness (but, without) ( all included in the cognitive processes category); family and friends (included in the social processes category); body, health, and sexual (included in the biological processes category); and work, achievement, leisure, home, and money (included in the personal concerns category). These categories were selected for analysis based upon previous research analyzing the types of talk in YA cancer communities [47] as well as extant research examining nonresponse in online communities [26,48].…”

“…Thus, it may be that participating in a conversation that expresses negative emotion has a positive effect for all contributors. Love and colleagues [47] suggest that community members cope with emotions through venting, often expressing negative emotions, which may convey sentiments of hopelessness or may even be cries for help.…”

“…It may be that users are using future tense to speak about their family issues and may not be getting replies. Furthermore, survivors maintain their identities by discussing a lack of support for managing their lives after cancer [47]. Users discussing topics such as family, leisure, home, and money may still be struggling to understand their cancer journey and how these topics are in flux or transition.…”