癌症兒童家庭正常化

Normalization in Families of Children with Cancer

10.6880/TJON.202106_21(1).02

蔡素蕙(Su-Hui Tsai)；李雅玲(Ya-Ling Lee)

正常化 ； 癌症兒童 ； 慢性疾病 ； 概念分析 ； normalization ； cancer children ； chronic disease ； concept analysis

腫瘤護理雜誌

21卷1期（2021 / 06 / 01）

19 - 28

繁體中文

隨著醫療品質的提升，使癌症兒童的存活率提高及平均餘命延長。在歷經初診的恐慌後，癌症兒童必須開始接受長期的治療和追蹤。為了與疾病長久共處之時，能維持和一般健康人正常的生活型態，故產生「正常化」的趨力。本文期藉由Walker和Avant（2019）提出的方法對癌症兒童家庭正常化進行概念分析，界定正常化的定義性特徵及探討其前因、後果和影響因子，提供實證篩檢工具，並列舉典型案例、邊緣案例與相反案例，以釐清其概念。目前國內尚未以正常化觀點探討癌症兒童家庭在因應疾病的過程，希望藉由此文引領國內學者學習評估癌症兒童家庭正常化的需求、介入正常化措施以及了解正常化的結果。期許未來醫護人員能以正常化之觀點，引領癌症兒童家庭在面對疾病之際能得到良好的因應能力。

Improvements in medical technology and care quality have raised the survival rate of children with cancer and extended their lifespan. After undergoing the panic of initial diagnosis, children with cancer need to receive long-term treatment and follow-up. To coexist with the disease and maintain a normal lifestyle similar to that of healthy people, the families of children with cancer have a tendency toward ＂normalization.＂ This paper uses the methodology proposed by Walker and Avant (2019) to carry out a conceptual analysis of normalization; identifies the definitions, characteristics, antecedents, consequences and influencing factors of normalization; and provides empirical screen measurements and examples of typical, borderline, and contrary cases to clarify the concept of normalization. In Taiwan, the concept of normalization has not been explored in families with children receiving pediatric oncology care. We hope that this paper will guide Taiwanese scholars in assessing the need for normalization, performing interventions for normalization, and understanding the effects of normalization on the families of children with cancer. We also expect that in the future, medical personnel will consider normalization in helping the families of children with cancer acquire the ability to cope with the disease well.

1. Aagaard, H.,Hall, E. O.(2008).Mothers’ experiences of having a preterm infant in the neonatal care unit: A meta-synthesis.Journal of Pediatric Nursing,23(3),26-36.
2. Barrera, M. E.,Rapoport, A.,Daniel, K. S.(2018).Easing psychological distress in pediatric can-cer. In palliative care in pediatric oncology (pp. 159-187).Springer.
3. Barrera, M.,Atenafu, E. G.,Sung, L.,Bartels, F.,Schulte, F.,Chung, J.,Cataudella, D.,Hancock, K.,Janzen, L.,Saleh, A.,Strother, D.,Downie, A.,Zelcer, S.,Hukin, J.,McConnell, D.(2018).A randomized control intervention trial to improve social skills and quality of life in pediatric brain tumor survivors.Psychooncology,27(1),91-98.
4. Chenard, C.(2007).The impact of stigma on the self-care behaviors of HIV-positive gay men striving for normalcy.Journal of the Association of Nurses in AIDS Care,18(3),23-32.
5. Darcy, L.,Knutsson, S.,Huus, K.,Enskär, K.(2014).The everyday life of the young child shortly after receiving a cancer diagnosis, from both children’s and parents’ perspectives.Cancer Nursing,37(6),445-456.
6. Davis, F.(1961).Deviance disavowal: The management of strained interaction by the visibly handicapped.Social Problems,9,120-132.
7. Deatrick, J. A.,Knafl, K. A.,Murphy-Moore, C.(1999).Clarifying the concept of normalization.Journal of Nursing Scholarship,31,209-214.
8. Gallacher, K.,May, C. R.,Montori, V. M.,Mair, F. S.(2011).Understanding patients’ experiences of treatment burden in chronic heart failure using normalization process theory.The Annals of Family Medicine,9(3),235-243.
9. Germeni, E.,Vallini, I.,Bianchetti, M. G.,Schulz, P. J.(2018).Reconstructing normality following the diagnosis of a childhood chronic disease: Does “rare” make a difference?.European Journal of Pediatrics,177(4),489-495.
10. Hamdan, A. B.,Alshammry, S.,Tamani, J.,Peethambaran, S.,Alharbi, M.(2016).The impact of creating a child-friendly hospital environment in paediatric cancer patients and their families in comprehensive cancer center at King Fahad Medical City.Pediatric Blood and Cancer,63(3),222-223.
11. Kearney, J. A.,Salley, C. G.,Muriel, A. C.(2015).Standards of psychosocial care for parents of children with cancer.Pediatric Blood and Cancer,62(5),632-683.
12. Knafl, K. A.,Deatrick, J. A.(1986).How families manage chronic conditions: An analysis of the concept of normalization.Research in Nursing and Health,9,215-222.
13. Kupst, M. J.,Patenaude, A. F.(2016).Coping and adaptation in pediatric cancer: Current perspectives.Pediatric psychosocial oncology: Textbook for multidisciplinary care
14. Lambert, V.,Keogh, D.(2015).Striving to live a normal life: A review of children and young people’s experience of feeling different when living with a long term condition.Journal of Pediatric Nursing,30(1),63-77.
15. Liu, Y. L.,Lo, W. C.,Chiang, C. J.,Yang, Y. W.,Lu, M. Y.,Hsu, W. M.,Ho W. L.,Li, M. J.,Miser, J. S.,Lin, D. T.,Lai, M. S.(2015).Incidence of cancer in children aged 0-14 years in Taiwan, 1996-2010.Cancer Epidemi¬ology,39(1),21-28.
16. McCarthy, M. C.,McNeil, R.,Drew, S.,Dunt, D.,Kosola, S.,Orme, L.,Sawyer, S. M.(2016).Psychological distress and posttraumatic stress symptoms in adolescents and young adults with cancer and their parents.Journal of Adolescent and Young Adult Oncology,5(4),322-329.
17. Merriam-Webster. (2019). Merriam-Webster’s Learner’s dictionary. Retrieved from https:// www.merriam-webster.com/
18. Morse, J. M.,Wison, S.,Penrod, J.(2000).Mothers and their disabled children: Refining the concept of normalization.Health Care for Women International,21,659-676.
19. Neal, C. A. S.(2007).Vanderbilt University.
20. Penn, A.,Kuperberg, A.(2018).Psychosocial support in adolescents and young adults with cancer.The Cancer Journal,24(6),321-327.
21. Protudjer, J. L.,Kozyrskyj, A. L.,Becker, A. B.,Marchessault, G.(2009).Normalization strategies of children with asthma.Qualitative Health Research,19(1),94-104.
22. Schwartz, C.(1957).Perspectives on deviancewives’ definitions of their husbands’ mental illness.Psychiatry,20,275-291.
23. Treenai, S.,Chaiyawat, W.,Yunibhand, J.(2015).Realizing being a leukemic patient: The starting point of returning to normality in Thai adolescents.Journal of Health Research,29(1),7-14.
24. Tsai, S. H.,Chang, N. T.,Cheng, S. F.,Lee, Y. L.(2020).Reliability and validity of a Chinese version normalization assessment measure for primary caregivers of children with cancer.Cancer Nursing,43(4),311-318.
25. Walker, L. O.,Avant, K. C.(2019).Strategies for theory construction in nursing.Pearson.
26. West, C. H.,Bell, J. M.,Woodgate, R. L.,Moules, N. J.(2015).Waiting to return to normal: An exploration of family systems intervention in childhood cancer.Journal of Family Nursing,21(2),261-294.
27. 教育部（2019）．教育部重編國語辭典修訂本．正常化。http://dict.revised.moe.edu.tw/cbdic/
28. 衛生福利部國民健康署（2019a）．2006-2013年癌症發生率（年齡別）。https://cris.hpa.gov.tw/pagepub/Home.aspx?itemNo=cr.s.10
29. 衛生福利部國民健康署（2019b）．106年死因統計結果分析。https://www.mohw.gov.tw/cp-16-41794-1.html

1. (2023)。兒童癌症學生的求學路－床邊教學家長的經驗。特殊教育季刊，166，39-51。