晩期合併症をもつ学童期発症の小児がん経験者が健康管理行動の獲得と就労を継続していく経験

Experiences of Survivors Who Developed Childhood Cancer at Elementary School Age With Late Effects Undertaking and Maintaining Health Management Actions and Employment

要旨

　目的：晩期合併症（以下合併症）をもつ小児がん経験者（以下経験者）が健康管理行動の獲得と就労を継続していく経験を明らかにする．

　方法：ライフストーリー法を用いて学童期に発症し合併症をもち就労する20〜30歳代の経験者5名に半構造化面接を2回行い，各々のライフストーリーのテーマの共通点と相違点を分析した．

　結果：診断名は白血病，脳腫瘍，骨肉腫と多様で複数の合併症があり，3名が診断時には病名未告知，4名が病気経験から職業を志向していた．経験者は病名を認識すると自ら病気を調べピアと繋がり，受診継続にて合併症を認識し対処していた．家族は病名告知に躊躇があり未告知の者には病気の不確かさの苦悩があった．

　結論：経験者は病名や合併症を認識することで受診にて生活上の困難に対処し就労を継続していた．看護外来設置や診療科間連携による相談支援，病名告知に家族が安心できるようチームでの支援の必要性が示唆された．

　Purpose: To clarify the experiences of childhood cancer survivor(CCS) with late effects(LE) that let them to seek health management action and influenced their choice of career.

　Methods: Using a life-story approach. For 5 CCSs in their 20s and 30s who developed childhood cancer at elementary school age, have LE and are working, two semi-structured interviews were conducted. After consisting each life-story from their narratives and reflections, the researcher analyzed themes among these participants about the common and different aspects of their experiences.

　Results: Diagnoses of the 5 CCSs varied(Leukemia, brain tumor, osteosarcoma) though with multiple LE. 3 CCSs were not told about their diagnoses on diagnosed. 4 CCSs oriented their job taking advantage of their experiences with cancer. However, by knowing their diagnoses, they started learning about the disease, connected with peer-support, and have been managing those LE with continuous treatment. Because of their family members' hesitance to announce the diagnosis, CCS developed uncertainty about the illness and suffering from it.

　Conclusions: It was revealed that by recognizing their diagnosis and LE, CCSs were able to connect with medical care in order to deal with difficulties on their lives and continue their career. It was suggested the necessities of consultation support through the establishment nursing outpatient sections, cooperation with medical doctors at each clinical department, and team support from medical staff members in order to enable family members to feel more comfortable to announce the diagnosis to patients.