OJN  Vol.5 No.5 , May 2015
Parent’s Perceived Provision of Information Regarding Diagnosis to Children with Brain Tumors
ABSTRACT
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.

Cite this paper
Sato, I. , Higuchi, A. , Yanagisawa, T. , Mukasa, A. , Ida, K. , Sawamura, Y. , Sugiyama, K. , Saito, N. , Kumabe, T. , Terasaki, M. , Nishikawa, R. , Ishida, Y. and Kamibeppu, K. (2015) Parent’s Perceived Provision of Information Regarding Diagnosis to Children with Brain Tumors. Open Journal of Nursing, 5, 451-464. doi: 10.4236/ojn.2015.55048.
References
[1]   Siegel, R., Naishadham, D. and Jemal, A. (2013) Cancer Statistics, 2013. CA: Cancer Journal of Clinicians, 63, 11-30.
http://dx.doi.org/10.3322/caac.21166

[2]   Freeman, K., O’Dell, C. and Meola, C. (2003) Childhood Brain Tumors: Children’s and Siblings’ Concerns Regarding the Diagnosis and Phase of Illness. Journal of Pediatric Oncology Nursing, 20, 133-140.
http://dx.doi.org/10.1053/jpon.2003.74

[3]   Gianinazzi, M.E., Essig, S., Rueegg, C.S., von der Weid, N.X., Brazzola, P., Kuehni, C.E. and Michel, G., For the Swiss Paediatric Oncology Group (2014) Information Provision and Information Needs in Adult Survivors of Childhood Cancer. Pediatric Blood and Cancer, 61, 312-318.
http://dx.doi.org/10.1002/pbc.24762

[4]   Mack, J.W. and Grier, H.E. (2004) The Day One Talk. Journal of Clinical Oncology, 22, 563-566.
http://dx.doi.org/10.1200/JCO.2004.04.078

[5]   Masera, G., Chesler, M.A., Jankovic, M., Ablin, A.R., Ben Arush, M.W., Breatnach, F., McDowell, H.P., Eden, T., Epelman, C., Bellani, F.F., Green, D.M., Kosmidis, H.V., Nesbit, M.E., Wandzura, C., Wilbur, J.R. and Spinetta, J.J. (1997) SIOP Working Committee on Psychosocial Issues in Pediatric Oncology: Guidelines for Communication of the Diagnosis. Medical and Pediatric Oncology, 28, 382-385.
http://dx.doi.org/10.1002/(SICI)1096-911X(199705)28:5<382::AID-MPO12>3.0.CO;2-D

[6]   Uys, R. (2010) Communication in the Diagnosis of Childhood Cancer. Continuing Medical Education, 28, 347-348.

[7]   Hardy, M.S., Armstrong, F.D., Routh, D.K., Albrecht, J. and Davis, J. (1994) Coping and Communication among Parents and Children with Human Immunodeficiency Virus and Cancer. Journal of Developmental and Behavioral Pediatrics, 15, S49-S54.
http://dx.doi.org/10.1097/00004703-199406001-00009

[8]   Kaneko, Y. and Matsushita, T. (1995) Revealing a True Diagnosis, Informed Consent, and Palliative Care in Cancer Children—A Questionnaire to Japanese Pediatric Oncologists. The Journal of the Japan Pediatric Society, 99, 534-539.

[9]   Parsons, S.K., Saiki-Craighill, S., Mayer, D.K., Sullivan, A.M., Jeruss, S., Terrin, N., Tighiouart, H., Nakagawa, K., Iwata, Y., Hara, J., Grier, H.E. and Block, S. (2007) Telling Children and Adolescents about Their Cancer Diagnosis: Cross-Cultural Comparisons between Pediatric Oncologists in the US and Japan. Psycho-Oncology, 16, 60-68.
http://dx.doi.org/10.1002/pon.1048

[10]   Reulecke, B.C., Erker, C.G., Fiedler, B.J., Niederstadt, T.U. and Kurlemann, G. (2008) Brain Tumors in Children: Initial Symptoms and Their Influence on the Time Span between Symptom Onset and Diagnosis. Journal of Child Neurology, 23, 178-183.
http://dx.doi.org/10.1177/0883073807308692

[11]   Hargrave, D., Bartels, U. and Bouffet, E. (2006) Diffuse Brainstem Glioma in Children: Critical Review of Clinical Trials. The Lancet Oncology, 7, 241-248.
http://dx.doi.org/10.1016/S1470-2045(06)70615-5

[12]   Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., Sugiyama, K., Saito, N., Kumabe, T., Terasaki, M., Nishikawa, R., Ishida, Y. and Kamibeppu, K. (2014) Cancer-Specific Health-Related Quality of Life in Children with Brain Tumors. Quality of Life Research, 23, 1059-1068.
http://dx.doi.org/10.1007/s11136-013-0555-x

[13]   Saiki-Craighill, S. (1999) The Trajectory of the Battle: The Development of the Mother When a Child Is Lost to Cancer. Kawashima Shoten, Tokyo, 46-48.

[14]   Saiki-Craighill, S. (1999) The Trajectory of the Battle: The Development of the Mother When a Child is Lost to Cancer. Kawashima Shoten, Tokyo, 54.

[15]   Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., Sugiyama, K., Saito, N., Kumabe, T., Terasaki, M., Nishikawa, R., Ishida, Y. and Kamibeppu, K. (2010) Development of the Japanese Version of the Pediatric Quality of Life Inventory Brain Tumor Module. Health and Quality of Life Outcomes, 8, 38.
http://dx.doi.org/10.1186/1477-7525-8-38

[16]   Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K. and Dickinson, P. (2002) The PedsQL in Pediatric Cancer: Reliability and Validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. Cancer, 94, 2090-2106.
http://dx.doi.org/10.1002/cncr.10428

[17]   Tsuji, N., Kakee, N., Ishida, Y., Asami, K., Tabuchi, K., Nakadate, H., Iwai, T., Maeda, M., Okamura, J., Kazama, T., Terao, Y., Ohyama, W., Yuza, Y., Kaneko, T., Manabe, A., Kobayashi, K., Kamibeppu, K. and Matsushima, E. (2011) Validation of the Japanese Version of the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Health and Quality of Life Outcomes, 9, 22.
http://dx.doi.org/10.1186/1477-7525-9-22

[18]   Cronbach, L.J. (1951) Coefficient Alpha and the Internal Structure of Tests. Psychometrika, 16, 297-334.
http://dx.doi.org/10.1007/BF02310555

[19]   Furukawa, T.A., Kawakami, N., Saitoh, M., Ono, Y., Nakane, Y., Nakamura, Y., Tachimori, H., Iwata, N., Uda, H., Nakane, H., Watanabe, M., Naganuma, Y., Hata, Y., Kobayashi, M., Miyake, Y., Takeshima, T. and Kikkawa, T. (2008) The Performance of the Japanese Version of the K6 and K10 in the World Mental Health Survey Japan. International Journal of Methods in Psychiatric Research, 17, 152-158.
http://dx.doi.org/10.1002/mpr.257

[20]   Furukawa, T.A., Kessler, R.C., Slade, T. and Andrews, G. (2003) The Performance of the K6 and K10 Screening Scales for Psychological Distress in the Australian National Survey of Mental Health and Well-Being. Psychological Medicine, 33, 357-362.
http://dx.doi.org/10.1017/S0033291702006700

[21]   Sato, I., Higuchi, A., Yanagisawa, T., Mukasa, A., Ida, K., Sawamura, Y., Sugiyama, K., Saito, N., Kumabe, T., Terasaki, M., Nishikawa, R., Ishida, Y. and Kamibeppu, K. (2013) Factors Influencing Self- and Parent-Reporting Health-Related Quality of Life in Children with Brain Tumors. Quality of Life Research, 22, 185-201.
http://dx.doi.org/10.1007/s11136-012-0137-3

[22]   Spielberger, C.D., Edward, C.D., Lushene, R.E., Montouri, J. and Platzek, D. (1973) STAIC Preliminary Manual for the State-Trait Anxiety Inventory for Children (“How I Feel Questionnaire”). Consulting Psychological Press Inc., California.

[23]   Soga, S. (1983) A Study on Standardization of Japanese Version of the STAIC. Japanese Journal of Psychology, 54, 215-221.
http://dx.doi.org/10.4992/jjpsy.54.215

[24]   R Development Core Team (2011) R: A Language and Environment for Statistical Computing. R Foundation for Statistical Computing, Vienna.
http://www.R-project.org/

[25]   de Leeuw, J. (1992) Introduction to Akaike (1973) Information Theory and an Extension of the Maximum Likelihood Principle. In: Kotz, S. and Johnson, N.L., Eds., Breakthroughs in Statistics, Vol. 1. Foundations and Basic Theory. Springer Series in Statistics, Perspectives in Statistics, Springer-Verlag, New York, 599-609.

[26]   Akaike, H. (1992) Information Theory and an Extension of the Maximum Likelihood Principle. In: Kotz, S. and Johnson, N.L., Eds., Breakthroughs in Statistics, Vol. 1. Foundations and Basic Theory. Springer Series in Statistics, Perspectives in Statistics, Springer-Verlag, New York, 610-624.
http://dx.doi.org/10.1007/978-1-4612-0919-5_38

[27]   Watanabe, A., Nunes, T. and de Abreu, G. (2014) Japanese Parents’ Perception of Disclosing the Diagnosis of Cancer to Their Children. Clinical Child Psychology and Psychiatry, 19, 125-138.
http://dx.doi.org/10.1177/1359104512470599

[28]   Trill, M.D. and Kovalcik, R. (1997) The Child with Cancer. Influence of Culture on Truth-Telling and Patient Care. Annals of the New York Academy of Sciences, 809, 197-210.
http://dx.doi.org/10.1111/j.1749-6632.1997.tb48083.x

[29]   Ishibashi, A. (1996) Four Concepts That Distinguish Pediatric Oncology Care in Japan from That in the United States: Telling the Diagnosis, Length of Hospitalization, Home Care, and Support Systems. Journal of Pediatric Oncology Nursing, 13, 226-231.
http://dx.doi.org/10.1177/104345429601300408

[30]   Zahedi, F. (2011) The Challenge of Truth Telling across Cultures: A Case Study. Journal of Medical Ethics and History of Medicine, 4, 11.

[31]   Blackhall, L.J., Murphy, S.T., Frank, G., Michel, V. and Azen, S. (1995) Ethnicity and Attitudes toward Patient Autonomy. JAMA: The Journal of the American Medical Association, 274, 820-825.
http://dx.doi.org/10.1001/jama.1995.03530100060035

[32]   Wong, M.Y.F. and Chan, S.W.C. (2006) The Qualitative Experience of Chinese Parents with Children Diagnosed of Cancer. Journal of Clinical Nursing, 15, 710-717.
http://dx.doi.org/10.1111/j.1365-2702.2006.01297.x

[33]   Arraras, J.I., Greimel, E., Chie, W.C., Sezer, O., Bergenmar, M., Costantini, A., Young, T., Vlasic, K.K., Velikova, G. and European Organisation for Research and Treatment of Cancer Quality of Life Group (2013) Cross-Cultural Differences in Information Disclosure Evaluated Through the EORTC Questionnaires. Psycho-Oncology, 22, 268-275.

[34]   Grassi, L., Giraldi, T., Messina, E.G., Magnani, K., Valle, E. and Cartei, G. (2000) Physicians’ Attitudes to and Problems with Truth-Telling to Cancer Patients. Supportive Care in Cancer, 8, 40-45.

[35]   European Association for Children in Hospital (1988) The EACH Charter.
http://www.each-for-sick-children.org/each-charter.html

[36]   Kunin, H. (1997) Ethical Issues in Pediatric Life-Threatening Illness: Dilemmas of Consent, Assent, and Communication. Ethics& Behavior, 7, 43-57.
http://dx.doi.org/10.1207/s15327019eb0701_4

[37]   Wiener, L.S., Battles, H.B., Heilman, N., Sigelman, C.K. and Pizzo, P.A. (1996) Factors Associated with Disclosure of Diagnosis to Children with HIV/AIDS. Pediatric AIDS and HIV Infection, 7, 310-324.

[38]   Ishida, Y., Ozono, S., Maeda, N., Okamura, J., Asami, K., Iwai, T., Kamibeppu, K., Sakamoto, N., Kakee, N. and Horibe, K. (2011) Medical Visits of Childhood Cancer Survivors in Japan: A Cross-Sectional Survey. Pediatrics International, 53, 291-299.
http://dx.doi.org/10.1111/j.1442-200X.2010.03293.x

[39]   Children’s Cancer Association of Japan (1968).
http://www.ccaj-found.or.jp/

[40]   Wang, D.C., Guo, C.B., Peng, X. and Su, Y.J. (2014) Psychological Morbidity and Health-Related Quality of Life in Patients with Differing Awareness of Cancer Diagnosis: A Cross-Sectional Study. Psycho-Oncology, 23, 975-980.
http://dx.doi.org/10.1002/pon.3512

[41]   Nonaka, J. and Asada, M. (2013) Support for Children and Their Family at a Time of Explanation regarding Diagnosis and Treatment. In: Uchida, M., Ed., Nursing Care Guidelines for Children with Cancer and Their Families 2012, Japanese Society of Pediatric Oncology Nursing, Nagano, 14-20.

 
 
Top