臺灣博碩士論文加值系統

研究背景與目的：
先天性心臟病為兒童常見的先天性疾病之一，其種類繁多。近年來因全民健保的幫助、醫學的進步…等緣故，病童生命得以延長，病童的年齡現以青少年及青年層級居多，父母們擔憂其成長過程中的心理狀態及所需適應社會環境調節的部分也因此與以往有所不同。本研究希望以時間縱向來瞭解先天性心臟病童家庭的心理適應。
研究目的為（1）探討父母陪伴心臟病童個案過程之心理適應及調適歷程、（2）瞭解父母教養心臟病童個案的因應策略、(3)進行父母兩者之間的心理適應過程之差異比較、(4)瞭解先天性心臟病童成長歷程的心理調適狀況。

研究方法：
採實地參與觀察及深度訪談的方式進行資料收集。以滾雪球方式立意選樣挑選樣本，自2013年10月至2017年6月，共訪談先天性心臟病童家長九名，六名女性、三名男性。受訪的先天性心臟病童共計三名，一男二女，年齡分別為15、19及26歲。教育程度則分別為：國中、高中及大學。最後由研究者閱讀訪談錄音的逐字稿，再加以分析重要研究主題。

研究結果：
(1)先天性心臟病童家長的悲苦來自：工作型態的改變及多重心理壓力。(2)先天性心臟病童父親的心理適應歷程較容易被忽略。(3)疾病並非僅有負面的失去；病童家長的透過親職韌性及家庭復原力得到了喜樂。(4)先天性心臟病童在疾病、父母、手足、同儕、老師、學校及社會層面均面臨心理適應的課題。(5)先天性心臟病童及家長透過充權及社區韌性獲得心理適應上的協助。

結論：
目前先天性心臟病童家庭仍缺乏、未被滿足的需求有：
(1)教導家長如何讓病童瞭解自己罹患的疾病：怎麼告知？孩子怎麼接受？(2)學校及學校老師學習如何以不粗糙的方式在學校及班級中告訴其他孩子病童的狀況及處理相關的事件：沒有足夠的管道學習。(3)提升社會大眾對先天性心臟病的認知：社會大眾因對疾病、障礙的認知不足，而對病童感到懼怕甚至歧視。
上述亦可擴及於家有不同於先天性心臟病障礙別孩子的父母親及家庭的。無論障礙別為何，大家一樣面臨著這些磨難。
建議政府及相關單位投入精力研擬如何提升及促進這些未被滿足的需求面。不單單是為了先天性心臟病家庭，各個家有不同障礙別家族成員的家庭都面臨著這樣的困苦。以公共衛生的觀點而言，建構及營造友善環境應為國家政策。因心理健康是每個國民都應擁有的基本人權，包括弱勢群體等，故維護心理健康是國家社會的責任。

Background and objectives:
Congenital heart disease is one of the most common illnesses in the congenital deformity. With advances in medical technology and improvement in medical care, survival rates of children with congenital heart disease (CHD) have improved. Thus children with CHD can usually survive into older ages.
In this study, we try to comprehend the families’ psychological adaptation of children with CHD in their life history. The objectives of this study are explorations on (1) parents’ psychological adaptation with child’s CHD, (2) comprehension the response strategies of parents to raise the children with CHD, (3) comparing the differences in psychological adaptation between fathers and mothers and (4) try to understand the psychological adjustment of the growth from the children with CHD.

Methods:
Data were collected by in-depth interviews. By means of snowball sampling and purposive sampling, 6 mothers, 3 fathers, 2 teenagers and 1 adult were selected and interviewed during October 2013 to June 2017. The interview data were verbatim transcribed and main themes embedded in the participants’ narratives and conversations were extracted.

Results:
(1) The parents feel the sadness and painstaking by changing jobs and multiple psychological stresses. (2) Fathers’ psychological adaptation is easier to overlook. (3) The parents gained happiness through parenting and family resilience. (4) The children with CHD are facing the psychological adaptation in many ways, like the disease, parents, siblings, classmates, teachers, schools and society. (5) The parents and the children gained some help on psychological adaptation through empowerment and community resilience.

Conclusions:
There are some unsatisfied needs for the families with CHD. (1) How to tell the children about the disease. The parents need to counseled the way and the methods. (2) The teachers need to learn the appropriate way to introduce the children with CHD to others. They may not have enough experience to dial with some fragile situations. Learning how to handle some situations to the children with CHD appropriately is required. (3) The general public needs to promote the awareness of CHD. Some people are afraid of the illness and acting biasedly because they don’t know the disease well enough.
The aforementioned statements could also be duplicated to the families with other diseases. No matter what the diseases are, these could cause the difficulties and afflictions to everyone.
We suggest the government to do more efforts on these unsatisfied demand. It’s not only for the families with CHD children but also for the families with other diseases.
In public health, the construction of a friendly environment for patients and their family should be one of the national policy. Mental health is the basic human rights that everyone should have, including the disadvantaged groups. The importance of mental health and wellness for individuals with mental health problems are the main issues for the country and society.

口試委員會審定書 -i-
謝誌 –ii-
中文摘要 –iii-
英文摘要 –v-
目錄 -vii-

第一章 緒論 -1-
第一節 實習機構簡介 -3-
第二節 研究動機與目的 -7-

第二章 文獻探討 -10-
第一節 先天性心臟病簡介 -10-
第二節 先天性心臟病童及其父母的健康議題 -19-
第三節 父母心理適應理論 -32-
第四節 臺灣先天性心臟病童相關資源現況 -51-
一、民間團體 - 基金會 -52-
二、民間團體 - 協會 -58-
三、政府單位 - 立法保障 -63-
四、相關學術研究近況 -71-

第三章 研究方法 -76-
第一節 研究方法的選擇 -76-
第二節 研究對象 -78-
第三節 資料蒐集 -79-
第四節 資料分析 -81-

第四章 研究結果 -84-
第一節 先天性心臟病童家長的悲苦 -84-
一、工作型態的改變-84-
二、多重心理壓力-85-
三、先天性心臟病童父親的心理適應歷程較容易被忽略-93-
第二節 先天性心臟病童家長的喜樂 -95-
一、疾病並非僅有負面的失去；病童家長的「得」：親職韌性 -95-
二、如何甩去哀愁：家庭復原力 -96-
第三節 先天性心臟病童的心理適應 -99-
一、病童與疾病、父母及手足之間 -99-
二、病童與同儕、老師及學校 -103-
三、病童與社會 -107-
第四節 協會對先天性心臟病童及家長的心理適應協助 -109-
一、協會提供的「充權」-109-
二、協會提供的「社區韌性」-110-
三、協會的發展 – 提供協助層面的改變及進階 -111-

第五章 研究討論 -113-
第一節 先天性心臟病童家長的心理適應歷程 -113-
一、不同時期的心理適應 -113-
二、過度保護孩子的漣漪效應 -116-
三、不同性別 - 父親的心理適應 -117-
四、不常被聽到的心理適應問題 -118-
五、面對離別 - 先天性心臟病童家長與網路、社工的關係 -118-
第二節 社團法人中華民國關懷心臟病童協會近期概況 -120-
一、嘗試拓展捐款來源 -120-
二、協會的變形及型變 -121-

第六章 結論與建議 -123–

參考文獻 -127-

附錄
附錄一 訪談同意書 -136-
附錄二 訪談同意書訪談札記 -137-
附錄三 受訪者基本資料表 -138-

1.Adler, A.(1996)‧自卑與超越(What life should mean to you)‧黃光國譯‧台北市：志文出版社。
2.McKenry, P. C. & Price, S. J.(2000)‧鄭維瑄、楊康臨、黃郁婷（譯）‧家庭壓力‧台北：五南圖書公司。
3.Richard, E. B. & Robert, M. K. (2000)‧Nelson 簡明小兒科學-心臟血管系統(李懷塘、朱甄鴻 譯)‧台北：合記。(原著出版於1998)
4.尹業珍(1993)‧施虐父母與非施虐父母之童年經驗、社會支持、親職壓力與虐待兒童傾向之研究‧碩士論文‧文化大學兒童福利研究所。
5.王麗美(1996)‧大台北地區國中聽障學生溝通及教養情形之研究‧特殊教育季刊，61，33-38。
6.全民健康保險法重大傷病‧衛生福利部中央健康保險署‧取自：http://www.nhi.gov.tw/webdata/webdata.aspx?menu=18&menu_id=683&webdata_id=406。
7.李必昌(2011)‧小兒心臟疾病徹底了解‧媽咪寶貝，126。
8.李仲平(2003)‧企業危機處理‧中華生涯規畫危機處理協會會刊，2，51-53。
9.李淑莉、陳月枝(2001)‧兒童經歷開心手術治療過程母親的壓力源及因應行為‧護理研究，9(2)，172-182。
10.李雅敏(2005)‧身心障礙者家庭之復原力‧台東特教，21，8-15。
11.行政院衛生福利部國民健康署(2015)‧103年出生通報年報統計表‧取自：http://www.hpa.gov.tw/BHPNet/Web/healthtopic/TopicArticle.aspx?No=201508170001&parentid=201109200006。
12.行政院衛生福利部統計處(2015)‧民國103年主要死因統計結果分析‧取自：http://www.mohw.gov.tw/cht/DOS/Statistic.aspx?f_list_no=312&fod_list_no=5488。
13.行政院主計總處(2004)‧近十年家庭組織型態概況‧取自：http://www.stat.gov.tw/ct.asp?xItem=5449&ctNode=1831。
14.呂鴻基、洪啟仁、吳美環、侯守賢、朱樹勳、連文彬(1993)‧台灣人的先天性心臟病‧台灣醫誌，92(附冊1) ，SI-SI2。
15.吳玉村(2011)‧漫談胎兒心臟超音波檢查‧中華民國心臟病兒童基金會網站刊登文章。
16.吳家惠(2010)‧成年先天性心臟病病人生活品質之探討‧碩士論文‧國立臺灣大學護理學研究所。
17.何華國(2004)‧特殊兒童心理與教育(第四版)‧台北：五南。
18.汪俐君(2003)‧學前身心障礙子女母親親職壓力與社會支持相關因素之探討‧碩士論文‧臺灣師範大學特教教學研究所。
19.汪麗真(1994)‧自閉症兒童母親教養壓力、親職角色適應與教養服務需求之研究‧碩士論文‧國立中正大學心理學系。
20.利翠珊(2005)‧身心障礙兒童家庭中夫妻的壓力、付出與恩情‧中華心理衛生學刊，18(2)，25-54。
21.利翠珊、蕭英玲(2008)‧壓力下婚姻韌性的展現：夫妻情感與互動行為之影響‧應用心理研究，38，151-171。
22.社團法人中華民國關懷心臟病童協會(2013)‧社團法人中華民國關懷心臟病童協會簡介。
23.杜宜展(2004)‧父職參與之探究-以身心障礙兒童家庭為例‧兒童發展與教育創刊號，31-48。
24.周欣穎(1993)‧特殊兒童家庭所面臨的問題及影響-特殊兒童家庭適應能力因素之分析‧學生輔導通訊，24，7-13。
25.林妙珊(2013)‧認識幼兒心臟病‧媽咪寶貝，155。
26.卓妙如、林雅雯、林金定(2004)‧台北市身心障礙兒童表達訊息與親子互動之探討 ‧身心障礙研究季刊，2(4)，229-239。
27.胡幼慧、姚美華(1996)‧一些質性方法上的思考‧巨流圖書公司，141-158。
28.胡嘉容(2016)‧身心障礙學生家長親職壓力之文獻分析研究‧碩士論文‧國立臺中教育大學特殊教育學系。
29.連惠君(2000)‧不同家庭發展階段父母對長子女教養方式之研究-以嘉義縣市為例‧碩士論文‧國立嘉義師範學院家庭教育研究所。
30.范雅芬、諶怡蓉(2013)‧折翼天使的翅膀、交會、另一個家、音符、出口、多一扇窗。
31.高玉玲、王如華、白璐、黃碧桃(2000)‧先天性心臟病學童手術後生活適應之探討‧護理雜誌，47(1)，43-55。
32.高正德、高淑芬、朱龍祥、朱啟丹、溫振源(2004)‧大學身體障礙生之心理及家庭適應‧臺灣精神醫學，18(4)，261-272。
33.翁毓秀(1999)‧親職壓力與兒童虐待-兼論兒童虐待的預防‧社區發展季刊，86，262-279。
34.家長的心理適應‧財團法人羅慧夫顱顏基金會‧取自：https://www.nncf.org/encyclopedia/adapt/psychological
35.許國正、翁麗雀(1999)‧灼傷患童父母需求及其影響因素之探討‧長庚護理，10(3)，1-10。
36.許國正(2005)‧先天性心臟病患童父母於開心手術前後需求之探討‧慈濟護理，4(4)，40-49。
37.許素彬、王文瑛、張耐、張菁芬(2002)‧特殊需求嬰幼兒之家庭需求分析與研究‧輔仁大學兒童與家庭學術研討會-下集，63-88。
38.張玨(2004)‧公共心理衛生‧載於陳拱北預防醫學基金會（主編），公共衛生學（修訂三版），1009-1080，台北市：巨流。
39.張玨、王榮德、呂淑妤、蕭芝殷、江弘基(2005)‧我國心理健康需求與資源研究‧衛生署研究報告。
40.張玨(2015)‧公共心理衛生‧摘自陳拱北預防醫學基金會主編‧公共衛生學中冊（修訂五版），28章，385-431，台北：台大出版中心。
41.張英熙(2013)‧從失落到接納-特殊兒童家長心理支持團體實務‧台北：心理。
42.張英熙(2014)‧特殊兒童家長諮商‧特殊教育發展期刊，57，23-38。
43.張秀玉(2005)‧聽覺障礙者家長超越逆境之生命調適歷程研究─社會工作優勢觀點‧博士論文。
44.張桂貞(2012)‧身心障礙幼兒父親的親職壓力、社會支持與親職參與之相關研究‧碩士論文‧輔仁大學兒童與家庭學系。
45.張春興(2006)‧現代心理學‧臺北市：東華書局。
46.張碩文(2015)‧母親照顧壓力歷程之研究-以「開心娃娃」之母親為例‧碩士論文‧慈濟大學社會工作學系。
47.張嘉琳(2010)‧網際網路互動學習對先天性心臟病童的母親行開心手術前後焦慮、憂鬱及生活品質之成效探討‧碩士論文‧國立臺北護理健康大學護理研究所。
48.陳一蓉(1993)‧自閉症兒童的母親的壓力知覺、社會支持與其適應關係的探討‧碩士論文‧文化大學兒童福利學系。
49.陳若琳(2002)‧母親親職壓力與教養品質對幼兒社會能力影響之探討‧輔仁學誌：法/管理學院之部，35，51-78。
50.陳若琳(2004)‧發展遲緩幼兒的母親之親職壓力、社會支持和教養韌性‧輔仁大學研發處學術研究組研究計畫，1-15。
51.陳彥儒(2016)‧先天性心臟病青年健康照護需求與生活品質之關係:以健康促進行為作為中介變項‧碩士論文‧國立陽明大學臨床暨社區護理研究所。
52.陳紀雯(2010)‧輕度先天性心臟病青少年運動行為之決定因素探討‧碩士論文‧國立臺灣大學護理學研究所。
53.黃惠茹(2015)‧先天性心臟病青少年健康促進行為相關因素之探討‧碩士論文‧輔仁大學護理學系。
54.曾仁美(2005)‧親子遊戲治療對憂鬱症兒童父母親職復原力之建構‧博士論文‧國立彰化師範大學輔導與諮商研究所。
55.傅雲慶(2015)‧先天性心臟病治療新趨勢‧血管醫學防治季刊，20，1-3。
56.游淑芬(1993）‧母親親職壓力與兒童社會行為關係之研究：一般兒童和先天性心臟病兒童的比較‧碩士論文‧國立臺灣師範大學。
57.莊春燕(2010)‧兒童先天性心臟病醫療資源耗用因素之探討‧碩士論文。
58.曹純瓊、章玉玲(2007)‧父母教養自閉症幼兒之心理適應研究‧東臺灣特殊教育學報，9，109-124。
59.梅心潔(2014)‧以語言治療師角度探究特殊需求幼兒父母親職韌性與親職壓力‧台灣聽力語言學會電子學報，55。
60.梅心潔、蔡昆瀛、陳若琳(2008)‧聽損幼兒母親的親職韌性、配偶共親職與親職壓力之相關研究‧應用心理研究，38，107-150。
61.趙善如 (2006)‧從復原力觀點解析單親家庭的福利服務-以高雄市為例‧社區發展季刊，114，147-158。
62.鄭翠萍、陳暢堅(2012)‧澳門學前特殊兒童家長親職壓力與兒童特質之研究‧中華民國發展遲緩兒童早期療育協會-第八屆早療論文發表。
63.劉明麗(1997)‧臺北市國小智障學童父母心理調適歷程之研究‧特殊教育研究學刊，15，237-256。
64.劉育秀(2010)‧先天性心臟病學童接受開心手術後返家一年間家庭協助復原的生活經驗‧碩士論文‧國立陽明大學臨床暨社區護理研究所。
65.劉懿瑩(2016)‧先天性心臟病青少年及其父母親對於疾病認知程度之研究‧碩士論文‧弘光科技大學護理研究所。
66.蔡侑儒(2014)‧開心手術病嬰兒返家後父母照顧經驗之研究-大手拉小手、開心向前走‧碩士論文‧輔仁大學護理學系。
67.賴妍妃(2008)‧我痛我愛我再生-一位罕見疾病兼智能障礙兒童母親的心路歷程‧碩士論文‧國立臺北教育大學特殊教育學系。
68.盧妍伶、呂朝賢(2014)‧家庭結構與兒童幸福感‧台灣社區工作與社區研究學刊，4(2)，95-125。
69.謝珮玲(2007)‧母嬰治療：心理健康的起跑點‧身心障礙研究季刊，5(2)，76-89。
70.鍾燕宜、潘兩辰、陳右振、郭煌宗(2010)‧發展遲緩兒童母親親職壓力之初探‧身心障礙研究，8(2)，83-98。
71.簡端儀(2012)‧臺北市特殊需求幼兒母親親職韌性與親職壓力之研究‧碩士論文‧臺北市立教育大學特殊教育學系。
72.羅湘敏(1995)‧特殊兒童親職教育的演變‧國教天地，109，17-22。
73.羅高文(1998)‧末期腎病學童母親於日常生活照顧病童的親職壓力及社會支持之探討‧碩士論文‧國防醫學院護理研究所。
74.Abidin, R. R. (1990). Introduction to the special issue: The stresses of parenting. Journal of Clinical Child Psychology, 19(4), 298-301.
75.Allison, S., Stacey, K. Dadds, V., Roger, L. wood, A. & Martin, G. (2003). What the family brings：gathering evidence for strengths-based work. Journal of Family Therapy, 25(3), 263-284.
76.American Journal of Family Therapy, 32, 2742.
77.Board R. & Ryan-Wenger N. (2002). Long-term effects of pediatric intensive care unit hospitalization of fami1ies with young children. Heart & Lung, 31(1), 53-65.
78.Boss, P. (1987). Family stress: Perception and context. In M. Sussman & S. Steinmetz (Eds.), Handbook on marriage and the family (pp. 695-723). New York: Plenum.
79.Boyd, B. A. (2002). Examining the relationship between stress and lack of social support in mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 17, 208-215.
80.Brandhagen, D. J., Feldt, R. H., ＆Williams, D. E. (1991). Long-term psychologic implications of congenital heart disease: A 25-year follow-up. Mayo Clinic Proceedings, 66, 474-479.
81.Branscombe, N. R. & Wann, D. L. (1992). Role of identification with a group, arousal, categorization processes, and self-esteem in sport spectator aggression. Human Relations, 45, 1013-1033.
82.Breitmayer, B. J., Gallo, A. M., Knafl, K. A., & Zoeller, L. H. (1992). Social competence of school-age children with chronic illness. Journal of Pediatric Nursing, 7, 181-188.
83.Caplan, G. (1964) Principles of Preventive Psychiatry. New York: Basic Books.
84.Clark, S. M. & Miles, S. M. (1999). Conflicting responses: The experience of fathers of infants diagnosed with severe congenital heart disease. Journa1 of the society of pediatric nurses, 4(1), 7-14.
85.Cohn, J. K. (1996). An Empirical Study of Parents'' reaction to the Diagnosis of Congenital Heart Disease in infant. Social work in health care, 23(2), 67-79.
86.Colaizzi, P. F. (1978). Psychological Research as a Phenomenologist Views It. In R. S. Valle & M. King (Eds.), Existential Phenomenological Alternatives for Psychology (pp. 48-71). New York: Oxford University Press.
87.Cohen, O., Slomin, I., Finzi, R. & Leichtentritt, R. D. (2002). Family Resilience：Israeli Mothers’ Perspectives. The American Journal of Family Therapy, 30, 173-187.
88.Dellve, L., Samuelsson, L., Tallborn, A., Fasth, A., & Hallberg, L. R.-M. (2006). Stress and well-being among parents of children with rare diseases: a prospective intervention study. Journal of Advanced Nursing, 53(4), 392-402.
89.DeMaso, D. R., Campis, L. K., Wypij, D., Bertram, S., Lipshitz, M., & Freed, M. (1991). The impact of maternal perceptions and medical severity on the adjustment of children with congenital heart disease. Journal of Pediatric Psychology, 16(2), 137 - 149.
90.Drotar, D. (1975). Clinical psychological training in the pediatric hospital. Journal of Clinical Child Psychology, 4, 46–49.
91.Drotar, D., Baskiewicz,, A.,Irvin, N., Kennell, J. & Klaus, M. (1975). The Adaptation of Parents to the Birth of an Infant with a Congenital Malformation: A Hypothetical Model. Pediatrics, 26(5), 710-717
92.Drummond, J., Kysela, G.M., McDonald, L., & Query, B. (2002). The Family Adaptation Model: Examination of Dimensions and Relations. CJNR, 34(1), 29-46.
93.Feldman, M. A., Hon., M. L., & Allen, N. W. (1997). Stress in mothers with intellectual disabilities. Journal of Child and Family studies, 6(4), 471-485.
94.Firat, S., Diler, R., Avci, A. & Seydaoglu, G. (2002) Comparison of psychopathology in the mothers of autistic and mentally retarded children. Journal of Korean Medical Science, 17, 679–685.
95.Gantt, L. T. (1992). Growing up heartsick: The experience of young women with congenital heart disease. Health Care for Women International, 13(3), 241-248.
96.Ganong, L. H. & Coleman, M. (2002). Family Resilience in Multiple Contexts. Journal of Marriage and Family, 64, 346–348.
97.Gilliland, B. E. & James, R.K. (1997). Crisis intervention strategies (3rd ed.). Pacific Grove, CA: Brooks/Cole.
98.Gray, D. E. (2003). Gender and coping: the parents of children with high functioning autism. Social Science & Medicine, 56(3), 631-642.
99.Greeff, A. P. & Human, B. (2004). Resilience in families in which a parent has died.
100.Hamner, T. J. & Turner P. H. (2001). Parenting in contemporary society, Allyn & Bacon, Boston.
101.Hill, R. (1949). Families Under Stress. New York: Harper and Row.
102.Horan, M.L. (1982). Parental reaction to the birth of an infant with a defect: An attributional approach. Advances in Nursing Science, 5, 57–68.
103.Ireys, H. T., Werthamer-Larsson L. A., Kolodner K. B., Gross, S. S. (1994). Mental health of young adults with chronic illness: the mediating effect of perceived impact. Journal of Pediatric Psychology, 19(2), 205-222.
104.Janoff-Bulman, R. (1979). Characterological versus behavioral self-blame: inquiries into depression and rape. Journal of Personality and Social Psychology, 37(10), 1798-1809.
105.Jew, C. L., Green, K. E., & Kroger, J. (1999). Development and validation of a measure of resiliency. Measurement and Evaluation in Counseling and Development, 32(3), 75-89.
106.Kaplan, D. M. & Mason, E. A. (1960). Maternal Reactions to Premature Birth Viewed as an Acute Emotional Disorder. American Journal of Orthopsychiatry, 30(3), 539-552.
107.Kong, S. G., Tay,, J. S. H., Yip, W. C. L., & Chay, S. O. (1986). Emotional and social effects of congenital heart disease in Singapore. Australian Pediatric Journal, 22(2), 101-106.
108.Konrad, K., & Bronson, J. (1997). Handling difficult times and learning resiliency. Paper presented at the Annual AEE International Conference Proceeding. (ERIC Document Reproduction Service No. ED414139)
109.Lamanna, M. A. & Riedmann, A. (1994). Marriages and Families: Making Choices and Facing Change. USA: Wadsworth.
110.Lambie, R. A., Leone, S., ＆ Martin, C. K. (1998). Fostering resilience in children and youth Counseling and Human Development,30(8), p1-18.
111.Lavee, Y., McCubbin, H. I. & Patterson, J. M. (1985). The Double ABCX Model of Family Stress and Adaptation: An Empirical Test by Analysis of Structural Equations with Latent Variables. Journal of Marriage and Family, 47(4), 811-825.
112.Luetke-Stahlman, B. (1994). Procedurs for socially integrating preschools who are hearing , deaf , and hard-of-hearing. Topics in Early Special Education, 14(4), 472-485.
113.McCubbin, H. I., & Patterson, J. (1981). Systematic assessment of family stress, resources and coping: Tools for research, education and clinical intervention. St. Paul, Minnesota: Family Social Science, University of Minnesota.
114.McCubbin, H. I. & McCubbin M. A. (1988). Typologies of resilient families: Emerging roles of social class and ethnicity. Family Relations, 37(3), 247-254.
115.McCubbin, H. I., Thompson A. I. & McCubbin, M. A. (1996). Family assessment: resiliency, coping and adaptation-inventories for research and practice. Madi son, WI: Univer. of Wisconsin.
116.Minichiello V., Aroni R., Timewell E. & Alexander L. (1995). In-depth Interviewing, Second Edition. South Melbourne: Longman.
117.Morelius, E., Lundh, U. & Nelson, N. (2002). Parental stress in relation to the severity of congenital heart disease in the offspring. Pediatric Nursing, 28(1), 28-32.
118.Morrow, W. R. (2000). The new world of pediatric cardiology: Issues and answers
pediatric Annals, 29(8), 464-466.
119.Mulsow, M., Caldera, Y. M., Pursley, M., Reifman, A., & Huston, A. C. (2002). Multilevel factors influencing maternal stress during the first three years. Journal of Marriage &the Family, 64(4), 944-956.
120.Nakata, Y. et al. (1998). Parents'' Wishes Regarding Notification of Handicap: Comparing Down''s syndrome and autism. Psychiatria et neurologia paediatrica Japonica, 38, 71-77.
121.Nakata, Y. et al. (1995). The Parental Process of Coming to Terms with a Child''s Handicap : Analysis of interactions between health care professionals and parents of children with developmental disorders. Psychiatria et neurologia paediatrica Japonica, 35(4), 329-342.
122.Oelofsen, N. & Richardson, P. (2006). Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. Journal of Intellectual & Developmental Disability, 31(1), 1-12.
123.Ostberg, M. (1998). Parental stress psychosocial problems and responsiveness in help-seeking parents with small (2-45 months old) children. Scandinavian University Press, 87, 69-76.
124.Patterson, J. M. (2002). Understanding family resilience. Journal of Clinical Psychology, 58(3), 233-246.
125.Perrin, E. C., & Gerrity, P. S. (1984). Development of children with a chronic illness. Pediatric Clinics of North America, 31(1), 19-31.
126.Pless, I. B., Power, C., & Peckham, C. S. (1993). Long-term psychological sequelae of chronic physical disorders in childhood. Pediatrics, 96(1), 1131-1136.
127.Roach, M. A., Orsmond, G. I., & Barratt, M. S. (1999). Mothers and fathers of children with Down syndrome: parental stress and involvement in childcare. American Journal on Mental Retardation, 104(5), 422-436.
128.Rubin H. J. & Rubin I.S. (1995). Qualitative Interviewing: The Art of Hearing Data. London: Sage.
129.Rutter M. (2012). Resilience as a dynamic concept. Dev Psychopathol. 24(2), 335-344.
130.Salgado, C. L., Lamy, Z. C., Nina, R. V. D. H. (2011). Pediatric cardiac surgery under the parents sight: a qualitative study. Revista Brasileirade de Cirurgia Cardiovascular, 26(1), 36-42.
131.Spriesterbach, D.C. (1973). Psychological aspects of the cleft palate problem, Vols. 1 and 2. Iowa City, IA: University of Iowa Press.
132.Topley, M. (1974). Cosmic antagonism: a mother-child syndrome. in: AP Wolf (Ed.) Religion and ritual in Chinese society. Stanford University Press, Stanford.
133.Turnbull, A. P., Behr, S. K., & Tollefson, N. (1986). Positive contributions that persons with mental retardation make to their families. Paper presented at American Association on Mental Deficiency, Denver, CO.
134.Turnbull, A. P., & Turnbull, H. R. (2006). Families, professionals, and exceptionality: Positive outcomes through partnerships and trust (5th ed.). Columbus, OH: Merrill.
135.Walsh, F. (1998). Strengthening family resilience. New York: Guilford Press.
136.Walsh, F. (2002). A family resilience framework: innovative practice applications. Families Relations, 51, 130-137.
137.Weitzman, M. (1984). School and peer relations. Pediatric Clinics of North America, 31(1), 59 -69.
138.World Health Organization. (2003). Mental Health Policy, Plans and Programmes: Module. Geneva: World Health Organization.
139.World Health Organization. (2004, 2004). Promoting Mental Health. Geneva: World Health Organization.
140.Wray J. & Maynard L. (2005) Living with congenital or acquired cardiac disease in childhood: maternal perceptions of the impact on the child and family. Cardiology in the Young 15, 133-140.
141.Yoos, L. (1987). Chronic childhood illnesses: Developmental issues. Pediatric Nursing, 13(1), 25 -28.
142.Youssef, N. M. A. (1988). School adjustment of children with congenital heart disease. Maternal-Children Nursing Journal, 17(4), 217-302.