Disclosure of congenital cleft lip and palate to Japanese patients: reported patient experiences and relationship to self-esteem

BMC Research Notes

Yoshihiko Yamazaki¹  Mikiko Ito³  Tomoko Omiya² 

[1] Department of Social Welfare, Faculty of Social Welfare, Nihon Fukushi University, Okuda, Mihama-cho, Chita-gun, Aichi 470-3295, Japan;Community Nursing, Faculty of Nursing, Toho University, 4-16-20 Omori-Nishi, Ota-ku, Tokyo 143-0015, Japan;Division of Health Promotion Science, Nursing Science, Course of Health Science, Graduate School of Medicine, Osaka University, 1-7 Yamada-oka, Suita, Osaka 565-0871, Japan

关键词: Japan;    Disclosure;    Self-stigma;    Self-esteem;    Cleft lip and cleft palate;   

Others  :  1091675
DOI  :  10.1186/1756-0500-7-924

 received in 2013-09-10, accepted in 2014-12-12,  发布年份 2014

【 摘 要 】

Background

The present study investigated when and how Japanese people with cleft lip and palate (CL/P) learn that their condition is congenital; the perceived effects of withholding the CL/P diagnosis on patients; and whether the resulting social experience and self-esteem are related. A questionnaire survey was conducted in 71 adults with CL/P recruited through a hospital, a patients’ association, and by snowball sampling.

Results

The participants became aware of their physical difference in childhood, but many reported difficulty in understanding their condition. Participants reported that their families avoided the topic of diagnosis. Participants who understood their condition during childhood rather than in adulthood were significantly more likely to consider this scenario as positive (p < 0.001). Although stigmatising experiences were extremely painful, most patients hid their suffering, making it more difficult to obtain social support. Participants with high self-esteem were more likely to feel that they received adequate support.

Conclusions

It is important to explain the congenital nature of CL/P sufficiently and early. In addition, openness by the family about the diagnosis, rather than avoidance, may improve patients’ self-esteem. Sufficient support from family, health care providers, and significant others is needed for patients to develop adequate self-esteem.

【 授权许可】

   
2014 Omiya et al.; licensee BioMed Central.

【 参考文献 】

• [1]Hirahara F: Senten-ijyou monitaringu: Wagakuni to sekai no torikumi [Birth Defects Monitoring: Efforts of Japan and the World] (in Japanese). Acta Obstetrica et Gynaecologica Japonica 2007, 59:244.
• [2]Natsume N, Kawai T, Kohama G, Teshima T, Kochi S, Ohashi Y, Enomoto S, Ishii M, Shigematsu T, Nakano Y, Matsuya T, Kogo M, Yoshimura Y, Ohishi M, Nakamura N, Katsuki T, Goto M, Shimizu M, Yanagisawa S, Mimura T, Sunakawa H: Incidence of cleft lip or palate in 303 738 Japanese babies born between 1994 and 1995. Br J Oral Maxillofac Surg 2000, 38:605-607.
• [3]Tse CY, Chong A, Fok SY: Breaking bad news: a Chinese perspective. Palliat Med 2003, 17:339-343.
• [4]Waleskyrainbow PA, Morris HL: Assessment of informative-counselling procedures for cleft-palate children. Cleft Palate J 1978, 15:20-29.
• [5]Nakanii M, Shinohara H, Moriguchi T: Research on the actual state of disclosure in the prenatal notification of cleft lip and palate and recommendations for a desirable support system (in Japanese). Kawasaki Medical Welfare Journal 2005, 15:103-116.
• [6]Kitamura Y, Ueda R, Tamaki A, Kawada S, Fujita H: Self-esteem and its related variables in children with cleft lips and/or cleft palates. Bulletin of Research Institute, National Rehabilitation Center for Persons with Disabilities 2005, 5:1-5.
• [7]Millard T, Richman LC: Different cleft conditions, facial appearance, and speech: relationship to psychological variables. Cleft Palate Craniofac J 2001, 38:68-75.
• [8]Gussy M, Kilpatrick N: The self-concept of adolescents with cleft lip and palate: a pilot study using a multidimensional/hierarchical measurement instrument. Int J Pediatr Dent 2006, 16:335-341.
• [9]Berger ZE, Dalton LJ: Coping with a cleft II: factors associated with psychosocial adjustment of adolescents with a cleft lip and palate and their parents. Cleft Palate Craniofac J 2011, 48:82-90.
• [10]Strauss RP, Ramsey BL, Edwards TC, Topolski TD, Kapp-Simon KA, Thomas CR, Fenson C, Patrick DL: Stigma experiences in youth with facial differences: a multi-site study of adolescents and their mothers. Orthod Craniofac Res 2007, 10:96-103.
• [11]Hirose T: A literature review of psychosocial problems of children with cleft lip and cleft palate. Journal of Japanese Cleft Palate Association 1999, 24:348-357.
• [12]Inoue T: Sekentei no Kozo [the structure of sekentei] (in Japanese). 1st edition. Tokyo: Kodansha; 2007:97-188.
• [13]Rosenberg M: Society and the Adolescent Self-Image. Princeton, New Jersey: Princeton University Press; 1965.
• [14]Yamamoto M, Matsui Y, Yamanari Y: The structure of perceived aspects of self. Jpn J Educ Psychol 1982, 30:64-68.
• [15]Kaketa K, Nozaki T: Evaluation of structured group encounter in training for teachers with ten years of experience at an academic seminar. Journal of Hokkaido University of Education 2008, 58:175-184.
• [16]Matsuura N: Empirical research on relationship between inattention, hyperactivity, Impulsivity, and self-esteem in inmates of a correctional facility (in Japanese). Human Developmental Research 2008, 22:291-292.
• [17]Link BG, Struening E, Cullen FT, Shrout PE, Dohrenwend BP: A modified labelling theory approach to mental-disorders - an empirical-assessment. Am Sociol Rev 1989, 54:400-423.
• [18]Omiya T, Ito M, Yamazaki Y: The process leading to affirmation of life with cleft lip and cleft palate: the importance of acquiring coherence. Jpn J Nurs Sci 2012, 9:127-135.
• [19]Squires J, Bricker D, Potter L: Revision of a parent-completed development screening tool: ages and stages questionnaires. J Pediatr Psychol 1997, 22:313-328.
• [20]Menjyu N: Analysis of the medical sociological several problems a mother of a granny birth has (in Japanese). Bulletin of International Buddhist University 2009, 47:245-261.
• [21]Conrad MM, Pacquiao DF: Manifestation, attribution, and coping with depression among Asian Indians from the perspectives of health care practitioners. J Transcult Nurs 2005, 16:32-40.
• [22]Sado A, Ishii M, Ishii Y, Moriyama T, Morita K, Gunji A, Imaizumi F, Murase K, Takahashi Y, Enomoto S: Clinical study on telling patients with cleft lip and cleft palate the name of their disease (in Japanese). Journal of Japanese Cleft Palate Association 2001, 26:97-113.
• [23]Leikin SL: An ethical issue in pediatric cancer care: nondisclosure of a fatal prognosis. Pediatr Ann 1981, 10:37-41.
• [24]Saiki-Craighill S: The attitude of pediatric oncologists regarding disclosing the nature of the illness to children. J Child Health 1998, 57:590-597.
• [25]Ito K, Matsuura S, Ohta K: A survey on cleft lip and cleft palate patients who discontinued corrective treatment at Orthodontic Dentistry of Hiroshima University Dental Hospital. Journal of Japanese Cleft Palate Association 1993, 18:291-299.
• [26]Sawada N, Uchida H, Watanabe K, Kikuchi T, Suzuki T, Kashima H, Mimura M: How successful are physicians in eliciting the truth from their patients? A large-scale internet survey from patients’ perspectives. J Clin Psychiat 2012, 73:311-317.
• [27]Scambler G, Hopkins A: Being epileptic–coming to terms with stigma. Sociol Health Illn 1986, 8:26-43.
• [28]Matsumoto M: Youbou-no Jko Jyuyou-Koshin/Kogairetu no Baai (Self-acceptance of looks-in case of cleft lips and cleft palate). Gendai Bunmei Kenkyu 1999, 2:88-106.
• [29]Miyaji N: Torauma no Iryojinruigaku (Medical anthropology of trauma) (in Japanese). 1st edition. Tokyo, Japan: Misuzu Shobou; 2005:77-96.
• [30]Toyota K, Matsumoto T: Factors relating to self-esteem in university students. (Daigakusei-no Jisonshin to Kanren-suru Shoyouin ni Kansuru Kenkyu). The Bulletin of the Institute of Human Sciences, Toyo University 2004, 1:38-54.