The Peer Support Experience of AYA Hiroba: A Get-together for Adolescents and Young Adults with Cancer

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  • Hirayama Takatoshi
    Department of Psycho-Oncology, National Cancer Center Hospital
  • Kojima Rebekah
    Department of Palliative Medicine, National Cancer Center Hospital
  • Ikeda Chisato
    Department of Palliative Care, Isesaki Municipal Hospital
  • Udagawa Ryoko
    Department of Pharmacy, National Cancer Center Hospital
  • Kobayashi Mariko
    Department of Psycho-Oncology, National Cancer Center Hospital Program of Clinical Psychology, Open University of Japan
  • Shindo Akie
    Department of Psycho-Oncology, National Cancer Center Hospital
  • Tanaka Moeko
    Department of Psycho-Oncology, National Cancer Center Hospital
  • Yanai Yuko
    Department of Psycho-Oncology, National Cancer Center Hospital
  • Ishiki Hiroto
    Department of Palliative Medicine, National Cancer Center Hospital
  • Shimizu Ken
    Department of Psycho-Oncology, National Cancer Center Hospital
  • Satomi Eriko
    Department of Palliative Medicine, National Cancer Center Hospital

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  • 思春期若年成人がん患者の交流の場「AYAひろば」に関する活動報告

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Abstract

<p>Background: Adolescents and young adults (AYA) with cancer go through various life events during their illness trajectory, and there is often insufficient information on their diseases due to their rarity. Few chances are available for AYA patients to meet and share information with each other. Therefore, at the National Cancer Center Hospital in Japan we hold AYA Hiroba, a monthly get-together for AYA patients to communicate with each other. This study investigated satisfaction and effect with the activity. Methods: We have held the AYA Hiroba activity once a month since May 2016. We asked participants to complete a questionnaire at each session.Results: We held the activity 33 times between May 2016 and May 2019. A total of 130 patients participated, and 97 of them completed the questionnaire, including providing demographic data, since October 2017. The respondent demographics were as follows: sex (male/female), 38/59; median age, 29 years (range 14–39 years); outpatients/inpatients, 31/66; number of sessions attended (1/≥2), 42/55; and cancer type (sarcoma/malignant lymphoma/brain tumor/germ cell tumor/leukemia/melanoma/breast cancer/neuroblastoma/Wilms tumor/lung cancer/cervical cancer/nasopharyngeal cancer/tongue cancer/blank), 45/11/9/7/6/5/3/3/2/1/1/1/1/2). Many attendees perceived the activity favorably: “It was very satisfying” (61.7%), and “It was very helpful” (65%). The feedback was classified into three categories: “interaction with the same generation”, “diversion”, and “getting information”. Discussion: AYA patients have a great need to communicate with each other, and the feedback suggests that AYA Hiroba would be effective in interaction with the same generation, diversion and getting information. Most participants were very satisfied with the program. </p>

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