Palacký University olomouc



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PALACKÝ University OLOMOUc

Faculty of Education

Institute of Special Education Studies
Research on Family Resilience in Families of

Children with Hearing Impairment
A dissertation presented in partial fulfillment of the requirement for

Ph.D. postgradual study programme of Special Education




by
Shenglin LIU, ME.d

PhD study programme - Special Education Studies
Supervisor
Prof. PhDr. PaedDr. Miloň Potměšil, Ph.D.

Olomouc, Czech Republic

2010

This research is activated by those parents who have survived and been resilient while facing the challenge of fostering the children with handicaps by unfailing efforts to dispel the negative impacts imposed on their children by handicaps and to stretch their children’s developmental potential. In an age said to be without heroes, they are ordinary but authentic heroes in my eyes.

Declaration of Originality
I, Shenglin LIU (Student number 20044952) declare that this dissertation entitled “Research on Family Resilience in Families of Children with Hearing Impairment” and submitted as partial requirement for Ph.D. postgradual study programme of Special Education is my original work and that all the sources in any form (e.g. ideas, figures, texts, tables, etc.) that I have used or quoted have been indicated and acknowledged in the text as well as in the list of reference.

Signature Date

Acknowledgements

Completion of my study is a great challenge which has tested my resilience again and again. I wish to express my sincere gratitude and respect to the following people who contributed fully towards the completion of my study:

·My supervisor Prof. PhDr. PaedDr. Miloň Potměšil, Ph.D. for his creative thinking in recruiting international students from the People’s Republic of China (hereafter China) which provided me with the opportunity to study in Palacky University, the Czech Republic (hereafter Czech) and much needed guidance throughout the process of research design, questionnaire survey implementation, and dissertation writing.

·The members of my dissertation committee-- Prof. PaedDr. Milan Valenta, Ph.D, doc. Mgr. Kateřina Vitásková, Ph.D, Mgr. Jiří Langer, Ph. D --for their time, commitment, and thoughtful questions and comments, which undoubtedly improved the quality of my research and dissertation.

· The children with hearing impairment and their parents who participated in the research, especially those who participated in the reviews. Their experiences have enriched my life, opened my eyes, and helped me build confidence in dealing with life challenges.

·The headmasters of deaf schools in Olomouc, Ostrava and Hradec Kralove who had helped me send and collect questionnaires for my research.

· Secretary of Office for Foreign Affairs in Faculty of Education, Emilie Petříková and my Classmates, Jitka Vítová, Lusia Pastieriková, Miroslava Holubíková, Vojtech Regec, Eva Urbanovská, Peng Yan, who had provided me with necessary help when I was in need and had accompanied the process of my studying.

·My friend, professor Sharon A. Raver in Old Dominion University in United States of America who gave me guidance in choosing a research topic and further advice in questionnaire design and my past teacher, professor Piao Yongxin in Beijing Normal University in China who provided me with detailed information and comments on development of deaf education in China.

·My student, Zheng Linying in Sichuan normal university, special educator Peng Hua in Chengdu Rehabilitation Center for Deaf Children in China, who helped me conduct the pilot study of questionnaire, send and return questionnaire, interview main caregivers of families with hearing impaired children , and discussed with me about data coding and data analysis.

·My family in China, who always stood behind me and encouraged me, even when my pursuits took me far away from them, my old parents, my sister and my younger brother.

·My husband, Li Yucai, for his unconditional regard, empathy and support of spending countless hours caring for our child so that I could attend to my study and this research; and my son Xiaoduo, whose sweet and self-independent nature never failed to remind me of the truly important thing in life and encouraged me to persist with my study.


Abstract

Childhood hearing impairment not only impacts on children’s development, but also affects all aspects of family life. This research adopted mixed approaches of quantitative research and qualitative research to examine how families from two different social contexts, the People’s Republic of China and the Czech Republic, adapted to the risk of childhood hearing impairment in a sample of 160 families and explored the process of Chinese resilient families’ positive adaptation despite of risky exposure. Due to substantial variations in definitions and measurement of resilience and family resilience in previous studies, in this study the term family resilience was operationalized as a systematic structure consisting of the impacts of hearing impairment as a significant risk on family life, the transactional process of hearing impairment and protective factors, and outcome of positive adaptation of accepting hearing impairment well, functioning well and expecting well.

Based on this conceptual framework a questionnaire was developed to assess the overall level of family adaptation and to identify its influential factors including impacts of childhood hearing impairment on family life, social stigma, family characteristics in family self-efficacy, family cohesion and open communication, family belief change in fatalism, optimism, altruism and tolerance toward difference, social support, family perception of childhood education and development. The findings of questionnaire survey show that (1) overall, the two groups of families were resilient facing challenges of childhood hearing impairment; (2) the outcome of positive adaptation could be contributed to the interactions of the factors of impact of hearing impairment on family life and social stigma, family characteristics, change in family belief, social support.

The further group comparison suggest that Chinese families and Czech families did not demonstrate significant difference in overall outcome of positive adaptation but displayed apparent differences in adaptive patterns because of the Chinese families showed much higher stress levels and more changes in acceptance and family cohesion than the early days after diagnosis when compared to Czech counterparts. The big gap between the two groups of families in intervention services including using hearing aids, cochlear implants, receiving therapy and other social supports involving information support from professionals, the community supports of free choice in special school and regular schools, the access to self-help parent group which may contribute to the difference in subjective appraisal of stress levels between them; however, despite of adverse impact of childhood hearing impairment and lack of adequate social support, the protective factors including Chinese family’s cohesive family relationship, open communication, and positive changes in family beliefs such as becoming more optimistic, altruistic and tolerant toward difference, and feelings of being helped may have contributed to the outcome observed in Chinese families’ positive adaptation.

Subsequently, in-depth interviews were conducted to describe the rich experience of eight Chinese families struggling with and adapting to childhood hearing impairment positively. The qualitative analysis of data from semi-structured interview further validated that due to inadequate social support from social security system and professionals, the Chinese families were severely impacted by childhood hearing impairment, specifically manifesting in heavy economic burden, communication difficulty and little possibility to make informed decision in sensory devices, communication mode, and educational placement. However, faced with the risk of having a child with hearing impairments, Chinese families used the strategies of shifting life focus, accepting what can not be changed, mobilizing all potential resources inside and outside family, taking concrete steps towards goal such as educating themselves sign language and working harder to earn more money for their child’s future etc. to cope with it and demonstrated that childhood hearing impairment is not obstacle which is insurmountable.

Last but not least, some recommendations for intervention services in China and the limitations of this research were discussed.

Key words: Family resilience Children with hearing impairment China Czech

Table of Contents

1. Introduction…………………………………………………………………. 13

2. Literature review……………………………………………………………..22

2.1 Hearing impairment………………………………………………………...22

2.1.1 Relevant and easily confused terms……………………………………...22

2.1.2 The heterogeneity of hearing-impaired children………………………..23

2.1.3 The development of children with hearing impairment………………..29

2.1.3.1 The general characteristics of cognitive development

of hearing-impaired Children …………………………………...29

2.1.3.2 The general feature of hearing–impaired children’s

social development …………………..…………………………...33

2.2 Resilience…………………………………………………………………….34

2.2.1 Individual resilience………………………………………………………35

2.2.1.1 Researches on individual resilience within various

risk contexts……………………………………………………….35

2.2.1.2 Protective factors of resilient individuals……………………….38

2.2.1.3 Variation in definition of resilience: from personal

traits to process…………………………………………………...41

2.2.1.4 The assessment of individual resilience…………………………44


2.2.2 Family resilience…………………………………………………………..50

2.2.2.1 Family as a system ……………………………………………50

2.2.2.2 Family function as a functional unit……………………………..51

2.2.2.3 Family resilience research in multiple risky contexts…………..51

2.2.2.4 The protective factors for family resilience……………………..54

2.2.2.5 Variation in definition of family resilience: from

competence to process……………………………………………56

2.2.2.6 Assessment of family resilience…………………………………..59

2.3 Convergence of family resilience and hearing impairment research…….61

2.3.1 Family resilience research in the area of disability……………………...61

2.3.1.1 Impacts of child’s disability on family life………………………..61

2.3.1.2 Resilience research on individuals with disability

and their family……………………………………………………..64

2.3.1.3 Intervention service: most important protective factor…………66

2.3.2 Hearing impairment and family coping………………………………….68

2.3.3 The importance of the present study…………………………………..…72

3. Research design……………………………………………………………….76

3.1 The operationalization of relevant terms…………………………………..76


    1. Research purpose …………………………………………………………...76

3.3 Research questions…………………………………………………………..78

3.4 Research hypotheses………………………………………………………...79

3.5 Research methodology………………………………………………………79

3.6 Research methods……………………………………………………………83

3.6.1 Questionnaire survey………………………………………………………83

3.6.1.1 The steps for developing questionnaire……………………………83

3.6.1.2 The structure of questionnaire……………………………………..84

3.6.1.3 The respondents ………………………………………………….…86

3.6.2 Semi-structured Interview………………………………………………...89

3.6.2.1 Interview guide…………………………………………………..…89

3.6.2.2 Respondents………………………………………………………...90

3.6.2.3 The administration of interview process………………………….90

3.6.2.4 The process of analyzing the qualitative data………………….…90

4. Results and discussions……………………………………………………….92

4.1 Results of questionnaire survey……………………………………………..92

4.1.1 The background information about participant families and

their children………………………………………………………………92

4.1.2 Results of close-ended questions in questionnaire….……………………98


4.1.3 Results of open-ended questions in questionnaire……………………... 111

4.2 Result of qualitative interview……………………………………………..125

4.2.1 Characteristics of respondents…………………………………………...125

4.2.2 Results of interview………………………………………………………..127

4.2.2.1 Diagnosis and family reactions to diagnosis……………………………..127

4.2.2.2 Childhood hearing impairment as a significant risk for family………..129

4.2.2.3 Rationale for decision making in communication mode, sensory

device, and educational placement……………………………………135

4.2.2.4 Strategies of family coping with childhood hearing impairment………138

4.3 Discussions…………………………………………………………………….144

4.3.1 Family positive adaptation to child’s hearing impairment and

influential factors…………………………………………………………..144

4.3.2 No significant difference in overall level of family adaptation but

apparent difference in adaptation pattern between two family groups….146

4.3.3 Differences in impact of hearing impairment, social support

and social stigma may contribute to the difference in stress level

between two family groups………………………………………………….147


4.3.4 Protective factors which can contribute to Chinese family

positive adaptation while lack of adequate support from

social security system……………………………………………………..…149

4.3.5 Resilient Chinese families used some effective strategies to

cope with childhood hearing impairment for children’s better future…..153

4.3.6 Implication for intervention services in China……………………………154

4.3.7 Research limitations ………………………………………………………..157

5. Conclusion ……………………………………………………………………...159

List of references……………………………………………………………….…161

Appendix

Appendix A Questionnaire in English…………………………………………..173

Appendix B Questionnaire in Czech…………………………………………….177

Appendix C Abstract in German ……………………………………………….181

Appendix D Abstract in Czech………………………………………………..…183

List of figures


Figure

Title

Page

Figure 1


Resilience framework of Kumpfer

43

Figure 2


Rates of using hearing aids, cochlear implants, sign language learning and receiving therapy in two family groups

98

Figure 3

Communication modes in Chinese families

114

Figure 4

The approached through which Chinese families acquire the communication mode

115

Figure 5

Communication modes in Czech families

116

Figure 6

The approaches through which Czech families acquire the communication mode

116

Figure 7

Information needs in Chinese families

117

Figure 8

Information needs in Czech families

119

Figure 9


Source of the most effective help by Chinese families

120

Figure 10

The most effective help perceived by Czech families

121



List of Tables


Table

Title

Page

Table 1

Grades of Hearing impairment (child)

24

Table 2

Family function and relevant tasks for individuals

52

Table 3

The relevant characteristics of informants from China and Czech

88

Table 4

The background information about participant families

93

Table 5

The demographic characteristics of participant children in two family groups

94


Table 6

Hearing-loss related information about participant children

95

Table 7

Communication mode, therapy and educational placement for two groups of children

97

Table 8

Overall level of family adaptation to childhood hearing impairment

100

Table 9

Correlation between factors and outcome of adaptation

101

Table 10

Difference in outcome of family’s adaptation between Chinese and Czech families

102

Table 11

Difference in accepting and functioning between two family groups

103

Table 12

Difference in social stigma between Chinese families and Czech families

105


Table 13

Difference in family characteristic between two family groups

105

Table 14

Comparison of impacts of hearing impairment on family life between two family groups

106



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