Abstract
Adolescents and young adults (AYA) with cancer desire peer support and require support programs that address their unique needs. This study investigated the need for, and barriers to, peer support and preferences for digital peer navigation among AYA. A cross-sectional survey was administered to AYA, diagnosed with cancer between the ages of 15–39, at a cancer center and through social media. Descriptive summary statistics were calculated. Participants (n = 436) were on average 31.2 years (SD = 6.3), 3.3 years since-diagnosis (SD = 3.8), and 65% (n = 218) were women. Over three-quaters (n = 291, 76.6%) desired peer support from cancer peers, but 41.4% (n = 157) had not accessed peer support. Main access barriers were: Inconvenience of in-person support groups (n = 284, 76.1%), finding AYA with whom they could relate (n = 268, 72.4%), and finding AYA-specific support programs (n = 261, 70.4%). Eighty-two percent (n = 310) desired support from a peer navigator through a digital app, and 63% (n = 231) were interested in being a peer navigator. Participants indicated a greater need for emotional (n = 329, 90.1%) and informational support (n = 326, 89.1%) than companionship (n = 284, 78.0%) or practical support (n = 269, 73.6%) from a peer navigator. Foremost peer matching characteristics were cancer-type (n = 329, 88.4%), specific concerns (n = 317, 86.1%), and age-at-diagnosis (n = 316, 86.1%). A digital peer navigation program was desired by over 80% of a large Canadian sample of AYA and could potentially overcome the barriers AYA experience in accessing peer support. The design of a peer navigation program for AYA should consider the matching characteristics and multidimensional support needs of AYA.
Highlights
Adolescents and young adults (AYA; defined as individuals diagnosed with cancer between the ages of 15 and 39) comprise a distinct cancer population with unique needs [1].Due to their age and life stage at diagnosis, AYA are confronted with a multitude of physical, psychosocial, and socioeconomic impacts of cancer that are disproportionately greater than in older adults [1]
436 participants completed the survey, of which 217 (49.8%) participants were recruited from Princess Margaret Cancer Center (PM) and 219 (50.2%) through social media (SM)
Most were diagnosed with breast cancer (n = 91, 21.7%) and Hodgkin’s Lymphoma (n = 47, 11.2%), with fairly equal numbers of participants diagnosed with testicular cancer, leukemia, sarcoma, and thyroid cancer (8–9% each)
Summary
Adolescents and young adults (AYA; defined as individuals diagnosed with cancer between the ages of 15 and 39) comprise a distinct cancer population with unique needs [1].Due to their age and life stage at diagnosis, AYA are confronted with a multitude of physical, psychosocial, and socioeconomic impacts of cancer that are disproportionately greater than in older adults [1]. Many AYA lack the life experience and skills to cope with these significant challenges [7], yet healthcare systems provide inadequate or inaccessible support [8,9,10], resulting in a high burden of unmet needs [9,10,11,12]. To overcome these significant challenges, support programs that connect AYA with same-age cancer peers, as well as provide practical knowledge and skills to navigate the healthcare system are needed [13,14,15]. AYA report limited opportunities to interact with other AYA and encounter significant challenges in forming new social relationships [11]
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