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Parent’s Perceived Provision of Information Regarding Diagnosis to Children with Brain Tumors

Open Journal of Nursing 2015年第5期5卷 451-464页

作者： Iori Sato akiko higuchi Takaaki Yanagisawa Akitake Mukasa Kohmei Ida Yutaka Sawamura Kazuhiko Sugiyama Nobuhito Saito Toshihiro Kumabe Mizuhiko Terasaki Ryo Nishikawa Yasushi Ishida Kiyoko Kamibeppu Department of Family Nursing Division of Health Sciences and Nursing Graduate School of Medicine The University of Tokyo Tokyo Japan Children’s Cancer Association of Japan Tokyo Japan Division of Pediatric Neuro-Oncology Department of Neuro-Oncology/Neurosurgery Comprehensive Cancer Center International Medical Center Saitama Medical University Hidaka Japan Department of Neurosurgery Faculty of Medicine The University of Tokyo Tokyo Japan Department of Pediatrics Teikyo University Mizonokuchi Hospital Kawasaki Japan Sawamura Neurosurgery Clinic Sapporo Japan Department of Clinical Oncology & Neuro-Oncology Program Hiroshima University Hospital Hiroshima Japan Department of Neurosurgery Tohoku University Graduate School of Medicine Sendai Japan Department of Neurosurgery Kurume University School of Medicine Kurume Japan Department of Neuro-Oncology/Neurosurgery Comprehensive Cancer Center International Medical Center Saitama Medical University Hidaka Japan Pediatric Medical Center Ehime Prefectural Central Hospital Matsuyama Japan

Background: The aim of this study was to clarify the degree of information provision to children with brain tumors, factors influencing this provision, and the relationship between this provision and psychosocial consequences. Methods: A total of 157 parents completed a questionnaire on the degree of information provision to their children and sociodemographic and medical characteristics. Parents and their children completed subscales of the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Relevant factors were investigated using ordinal logistic regression analysis and compared with PedsQL scores by degree of information provision with adjustment for age. Results: The majority of children aged 2 - 4 years received a low level of information only in regard to medical procedure and preparation. The majority of children aged 5 - 11 years were provided information regarding disease symptoms and treatment, but not actual diagnosis. Approximately half of children aged 12 - 18 years were provided detailed information including their actual diagnosis. Older children generally received more information regarding their disease (odds ratio [OR] = 1.3 per 1 year old, P < 0.001), while children with intellectual disability received less (OR = 0.2, P = 0.006). The provision of information did not worsen scores for Procedural Anxiety, Treatment Anxiety, Worry, or Communication. Conclusions: To our knowledge, this is the first report on the degree of information provision to children with brain tumors. Parents of children with brain tumors in Japan provide information dependent on age and intellectual level. The disclosure of information to children regarding their disease might affect their trust of medical and health care professionals.

关键词： Adolescent Brain Neoplasms Child Quality of Life Truth Disclosure

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