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系統識別號 U0026-2102202022324900
論文名稱(中文) 泛自閉症患者父母的疾病覺知與烙印
論文名稱(英文) ILLNESS REPRESENTATIONS AND STIGMA OF AUTISM SPECTRUM DISORDERS IN PARENTS WITH AUTISTIC CHILDREN
校院名稱 成功大學
系所名稱(中) 健康照護科學研究所
系所名稱(英) Institute of Allied Health Sciences
學年度 108
學期 2
出版年 109
研究生(中文) 李靜姝
研究生(英文) Ching-Chu Li
學號 TA8971123
學位類別 博士
語文別 英文
論文頁數 152頁
口試委員 召集委員-周煌智
指導教授-徐畢卿
口試委員-陸偉明
口試委員-吳佳儀
口試委員-陳高欽
口試委員-林玲伊
中文關鍵字 泛自閉症  父母  烙印  疾病覺知 
英文關鍵字 Autism Spectrum Disorders (ASD)  Parents  Stigma  Illness Representations 
學科別分類
中文摘要 與一般父母相比,泛自閉症患者父母在教養上承受較大的壓力,不僅面臨日常照顧負荷,烙印也是常見的議題。當泛自閉症患者父母將烙印內化,將對其心理健康產生負面的影響。與健康相關的烙印往往取決於人們如何看待疾病或失能,因而與疾病覺知息息相關。因此,本研究的目的為探討泛自閉症患者父母的疾病覺知與烙印,了解兩者間的關係,並與一般父母做比較。本研究採取混合研究法(mixed-methods)的鑲嵌性相關模式(embedded correlational model),以量性的橫斷性病例對照研究為主、質性訪談為輔。共有208位父母參與本研究(泛自閉症組94位,對照組104位)。結果顯示多數的泛自閉症患者父母對疾病導因感到不確定,且對於父母相關導因的看法與一般父母有顯著差異(p < .05)。此外,負向情感(p < .001)、個人的控制程度(p < .001),以及泛自閉症週期性反覆的本質(p < .001)為泛自閉症患者父母內化烙印的預測因子(p < .001; R2 of 60%)。本研究為少數探討泛自閉症患者父母之疾病覺知與烙印的研究,結果顯示,提供相應的介入措施以協助父母發展適當的疾病覺知並減少其內化烙印,實有其必要性。
英文摘要 Parents raising a child with ASD are more likely to suffer enormous stress in parenting, and the sufferings that ASD brings to parents are far more than the burden of direct care. Stigma is a common issue parents would encounter, and when they internalized the stigma, their mental health would be adversely affected. Stigma is related to how people view the disease or disability. Thus, illness representations are related to stigma. Therefore, the aims of this study were to explore illness representations and affiliate stigma in parents with an autistic child, to determine the relationship between illness representations of ASD and affiliate stigma, and to compare illness representations and affiliate stigma between parents with an ASD child and parents with an ordinary child. This study followed an embedded correlational model of mixed-methods, in which qualitative data (interviews) were embedded within the quantitative method (cross-sectional case-control study) and used as a supplement to explain the results. There were 208 participants agreed to join in this study (94 in the ASD group, and 104 in the general group). The results suggested that most parents of children with ASD were uncertain about the causes and had significantly different views (p < .05) on parent-related causal factors from control group. In addition, negative emotional representations (p < .001), perceived personal control (p < .001) and the cyclical nature of ASD (p < .001) were the predictor of affiliate stigma in parents with an ASD child (p < .001; R2 of 60%). This study was one of the very few to address the relationship of illness representations and affiliate stigma among parents with an ASD child, and the findings may suggest that the interventions for improving parent’s illness representations and decreasing their affiliate stigma be most important.
論文目次 Table of Contents
ABSTRACT………………............................................…………………..I
ACKNOWLEDGEMENTS….............................................……………...IV
TABLE OF CONTENTS……............................................……………...VI
LIST OF TABLES…………………............................................………..IX
LIST OF FIGURES………………..............................................………..XI
CHAPTER 1 INTRODUCTION…............................................………....1
1.1 Background…………………............................................………...1
1.2 The aims of this study………............................................……...5
1.3 Research questions.…………….............................................…..6
CHAPTER 2 LITERATURE REVIEW…...........................................…….7
2.1 Autism Spectrum Disorders (ASD).............................................7
2.1.1 Epidemiology………....…..……...........................................…..7
2.1.2 ASD and culture…………................................................…….11
2.2 Parents of children with ASD…............................................…..14
2.2.1 Parenting experiences……............................................…..…14
2.2.2 Gender differences.…............................................……..…….19
2.3 Stigma……………………............................................…….…..….21
2.3.1 Concept of stigma…………..…….............................................21
2.3.2 Stigma among parents of children with ASD…........................23
2.4 Illness Representations……………………...…..……………………...26
2.4.1 Concept of illness representations and related studies…….….26
2.4.2 Illness representations of parents with an autistic child……....29
CHAPTER 3 METHODS…….……………………………….…………….……32
3.1 Research design………………………………………..…...……..……..32
3.2 Quantitative phase………………………….….………….....….………35
3.2.1 Research design……………...………………………………...………35
3.2.2 Term definition………………………….………….………….……….35
3.2.3 Setting and participant…………………...…….….………….……..36
3.2.4 Instruments…………………………….……………………….……….37
3.2.5 Data collection……………………..……..…………………….……...42
3.2.6 Data analyses…………………...…………………….………….…….43
3.3 Qualitative phase……………..………………..…………………….…..45
3.3.1 Research design……….…………..……………...…………….……..45
3.3.2 Setting and participants…..……………...…………..………………45
3.3.3 Data collection………….……………………………….…….………..45
3.3.4 Data analysis…………...……...………………………………...……..46
3.3.5 Study rigor……………………………………..………………….……..47
3.4 Ethical consideration…………………………..………………….……...48
CHAPTER 4 RESULTS……………………………………………………………49
4.1 Quantitative Section……………………………………...………….……50
4.1.1 Demographic characteristics……………………..……………….….50
4.1.2 Descriptive analysis of illness representations and affiliate stigma…55
4.1.3 Differences of illness representations and affiliate stigma between the two groups of parents………….........................................................61
4.1.4 Factors related to affiliate stigma…………...…………...…………85
4.1.4.1 Related factors of affiliate stigma in ASD parents……….......85
4.1.4.2 Related factors of affiliate stigma in ASD fathers...…………..89
4.1.4.3 Related factors of affiliate stigma in ASD mothers……………92
4.2 Qualitative section………………………………………………………...95
CHAPTER 5 DISCUSSION…………………………..………..………….…....103
5.1 Parent’s illness representations of ASD……..………….…………..103
5.1.1 Individual beliefs about illness………..………….…...……………103
5.1.2 Causal belief…………………………….……………….……………..105
5.2 Parent’s affiliate stigma……………..…………….………….………...108
5.3 The relationships of illness representations and affiliate stigma...110
CHAPTER 6 LIMITATIONS AND SUGGESTIONS……………………..…….112
6.1 Limitations…………………………………………………………….......112
6.2 Suggestions………..……….………………………………………….....114
REFERENCES………………………...……….………………………………….115
APPENDICES……………………………....…………………………………….125
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