Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, Illinois.
Robert H. Lurie Comprehensive Cancer Center, Northwestern University, Chicago, Illinois.
J Adolesc Young Adult Oncol. 2019 Dec;8(6):649-659. doi: 10.1089/jayao.2019.0028. Epub 2019 Jul 22.
Among the many challenges that exist among young adults with cancer, those that intersect psychosocial domains have only begun to be addressed by medical, research, and advocacy communities. While some have attempted to empirically document the psychosocial burden of adolescents and young adults (AYAs), there is a paucity of research exploring this phenomenon from the perspective of AYAs themselves. The purpose of this study is to better understand the lived experiences of young adult cancer survivors and the psychosocial impacts that cancer has had on their lives. We used qualitative focus group methodologies to elicit positive and negative psychosocial impacts of the cancer experience in a young adult cancer sample. We conducted three separate focus groups ( = 16). The average age of participants was 33 and majority were female (75%), Caucasian (50%), and married (44%). The most common cancer diagnoses were breast (38%), colon (13%), and acute myeloid leukemia (13%). Participants reported experiencing multiple emotional and social impacts such as stress, sadness, and fear; identity changes; utilizing different coping strategies; challenges discussing cancer; feeling pressure to be better; feeling abandoned, misunderstood, or invisible; and experiencing role reversals with family members. Participants reported experiencing several emotional and social impacts of cancer on their lives, both negative and positive. Our findings are important for oncology clinical practice and survivorship research activities with young adults, especially given the presence of these impacts over the long term.
在癌症青年患者面临的诸多挑战中,那些涉及心理社会领域的问题才刚刚开始受到医学、研究和倡导界的关注。尽管有人试图从实证角度记录青少年和年轻成年人(AYA)的心理社会负担,但从 AYA 自身角度探讨这一现象的研究却很少。本研究旨在更好地了解年轻癌症幸存者的生活经历,以及癌症对他们生活产生的心理社会影响。我们采用定性焦点小组方法,在年轻癌症患者样本中了解癌症经历的积极和消极心理社会影响。我们进行了三次单独的焦点小组讨论( = 16)。参与者的平均年龄为 33 岁,大多数为女性(75%)、白种人(50%)和已婚(44%)。最常见的癌症诊断是乳腺癌(38%)、结肠癌(13%)和急性髓细胞性白血病(13%)。参与者报告经历了多种情绪和社会影响,如压力、悲伤和恐惧;身份变化;使用不同的应对策略;讨论癌症的挑战;感到有压力要做得更好;感到被抛弃、被误解或被忽视;以及与家庭成员的角色反转。参与者报告了癌症对他们生活产生的多种积极和消极的情绪和社会影响。我们的研究结果对肿瘤临床实践和年轻成年人的生存研究活动很重要,尤其是考虑到这些影响会长期存在。