Talking About Cancer and Meeting Peer Survivors: Social Information Needs of Adolescents and Young Adults Diagnosed with Cancer

Abstract

Social information needs are higher in AYAs diagnosed in their 20s, in Hispanics, among those reporting high symptom burden and/or lower quality of care, and in individuals not in support groups. Efforts should be made to develop interventions for AYAs in most need of social information and support.

Assessing the psychosocial needs and program preferences of adolescents and young adults with cancer

“…The extent to which these needs are not met through current psychosocial services programming in both pediatric and adult cancer centers can further limit AYA HRQL [4,6,7,[20][21][22]. Confirming the AYA literature, AYA patients in this sample reported facing the significant challenges with school reentry or meeting vocational goals, maintaining friendships, and managing treatment-related side effects.…”

“…This finding is echoed by other published research [6,7,[20][21][22] including a recent mixed methods literature review and qualitative study [23]. Zebrack [21] described that among patients diagnosed with cancer between ages 15 and 35 years, 98 % expressed a need for more information about their illness, 76.3 % expressed a need for mental health counseling, and 65.7 % expressed a need for information about fertility and fertility preservation.…”

“…Similarly, Smith and colleagues [7] demonstrated that one third of surveyed AYA had at least one service need that was not being met; the most common unmet needs were mental health services and social supports including peer-to-peer interactions. Moreover, when AYA were surveyed 6-14 months after diagnosis, 43 % indicated a need to meet and connect with peer survivors and 25 % indicated a need to talk about their cancer experience with friends and families [22]. Unfortunately, having any unmet need is associated with lower HRQL, worse mental health, and worse physical, emotional, and social functioning [6,7,24].…”

The Adolescent and Young Adult with Cancer: A Developmental Life Course Perspective

“…Participation in an online support group by AYA aged 14-39 at diagnosis has been associated with lower levels of unmet needs for meeting peers and lower levels of unmet needs for social information. 9 Fertility preservation is a crucial means of protecting the reproductive capacity of AYA with cancer. This presents a paradox for AYAs with cancer who must concern themselves with understanding the impact of treatment on their fertility and protecting their future ability to procreate while their healthy counterparts are often focused on avoiding pregnancy.…”

“…The AYA transitioning through a complex developmental trajectory while concurrently undergoing diagnosis and treatment has unique care needs. 9 The LCHD model organizes health development into four distinct functional phases that span the life course. 12 The AYA can be seen in Phase 2 or the "Acquisition …”