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2— LIBRARY
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This is to certify that the
dissertation entitled

The Role of Caregiving on Quality of Life of Parents with
Children Having Autism in Taiwan

presented by

Hsiu—Shuo Hu

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5/08 KzlProjIAccsPresICIRC/DateDueindd

THE ROLE OF CAREGIVING ON QUALITY OF LIFE OF PARENTS WITH
CHILDREN HAVING AUTISM IN TAIWAN

By

Hsiu-Shuo Hu

A DISSERTATION

Submitted to
Michigan State University
In partial fulfillment of the requirements
for the degree of

DOCTOR OF PHILOSOPHY
Family and Child Ecology

2008

ABSTRACT

The Role of Caregiving on Quality of Life of Parents with Children Having
Autism in Taiwan

By

Hsiu-Shuo Hu

This study was designed to investigate and predict the quality of life among
caregivers of children with autism in Taiwan in terms of family stressors. family coping
resources, and caregiving appraisal, employing a cross-sectional study which included
quantitative and qualitative data. There were 270 caregivers of elementary school-aged
children with autism who participated in this study. Descriptive analysis, reliability
analysis, zero-order correlations, multiple regression analyses were used for data
description and analysis. In addition, part of the results from qualitative analysis was used
to validate and compliment the quantitative findings.

Quality of life as a contextual perception for the individual was measured by the
four dimensions-physical health, psychological health, social relationships, and
environment. The results showed that a negative caregiving appraisal was the most
predictive variable which negatively predicted the four dimensions of quality of life.
Consistent with the Family Resilience Theory, among three family stressors. parental
stress negatively predicted caregivers’ physical and psychological health. In terms of
family coping resources, informal social support positively predicted caregivers’
satisfaction regarding social relationship and environment; furthermore, religious coping

also positively predicted caregiver’s psychological health.

Regression analyses also indicated that a negative caregiving appraisal negatively
predicted four dimensions of quality of life, and that a positive caregiving appraisal
specifically predicted caregivers’ psychological health. These results also echoed with
Bubolz & Sontag’s Family Ecosystem Theory by involving a process of adaptation and
resources allocation/reallocation to ensure their survival the extent to which improves
their quality of life. Surprisingly, the severity of child’s behavior and social stigma were
not predictors ofa caregiver’s quality oflife.

Among the demographic variables, family monthly income was most predictive of
three aspects (psychological health, social relationships, and environment) of caregivers
quality of life. Employment status positively predicted caregiver‘s psychological health.
However, a caregiver’s educational level negatively predicted the social relationship

aspect of quality of life.

ACKNOWLEDGEMENTS

I want to express my gratitude to those who made possible the completion of my
doctoral program as well as this dissertation. First, I thank God. Without His guidance
and love, this work would not have been possible. God gave me the perseverance and
strength to complete my degree.

I would like to thank Dr. Lillian Phenice, my major advisor, for her inspiring
instruction with the development of this work. From the very beginning of my study at
MSU, she was the one who always encouraged me to move forward and never give up,
both in my studies and my life.

In addition, special thanks should go to my dissertation director, Dr. Esther Onaga.
Her unconditional assistance and support to let me explore my research interest
strengthened me to be a competent researcher. She also helped me to identify my niche
in serving families of children with special needs. With her personal experiences and
knowledge, she enlightened me to be an enthusiastic scholar.

I also want to thank my guidance committee members, Dr. Robert Griffore and Dr.
Susan Peters for their contributions in both my study and my research. Their support
and trust in my ability to learn gave me the determination to complete my doctoral
program and this dissertation. The insight they gave me to conduct my study is
invaluable.

I would like to thank my friends, Chueh-an Hsieh and Qi Diao for their advice on
statistical issues. Ruth Shillair, and Athena Warner who helped me with the editing and
translations cannot be overlooked. I also appreciated the "listening ear” of my friend

Shu-Shin Chou, who was there when I felt frustrated, or during times of difficulty.

Moreover, I would like to acknowledge the three hundred and thirty-five caregivers
who volunteered for my research, which made it possible to collect the questionnaires
that provided me with the needed data for my dissertation.

Finally, I want to give special thanks and love to my husband, Deng-Nan Hung, and
my children, No-Ya Hung, Hsuan-Yun Hung, and Nien—Tzu Hung. Their love,
encouragement, and prayers have helped me to complete my doctoral program and this

dissertation.

TABLE OF CONTENTS

LIST OF TABLES ................................................................................. viii
LIST OF FIGURES .................................................................................. x
Chapter 1
Introduction ................................................................................................. 01
Rationale for the Study ........................................................ 01
Purpose of the Study .............................................................................. 07
Research Questions ............................................................ 08
Hypotheses ...................................................................... 09
Assumptions .................................................................... 09
Theoretical Framework ....................................................... 10
Conceptual Definition of Variables .......................................... 17
Chapter 2
Review of Literature ............................................................... 19
The Definition of Subjective Quality of Life ................................ 19
Family Stressors and Parents’ Quality of Life .............................. 23
Social Stigma .................................................................... 26
Caregiving Appraisals and Quality of Life ................................. 28
Family Coping Resources and Quality of Life ............................ 32
Informal Social Support ....................................................... 33
Formal Social Support ......................................................... 35
Religious Coping ............................................................... 36
Chapter 3
Research Design and Methods ..................... ‘ ............................................. 40
Sample ........................................................................ 40
Research Design for the Present Study .................................... 40
Instrumentations ........................................................... 41
Instruments Translation ....................................................... 46
Data Collection Procedure ................................................... 47
Data Analysis .................................................................. 48
Chapter 4
Results of Data Analysis .............................................................................. 51
Reliability Analyses ...................................................... 51
Demographic Characteristics of the Sample ........................ 54

vi

Descriptive Statistics for the Concepts ....................................... 57

Predictor Variables ............................................................. 59
Outcome Variables ............................................................. 63
Correlations among Variables ................................................ 64
Correlations among the Predictor Variables ................................ 71
Correlations among Outcome Variables .................................... 72
Correlations among the Demographic Variables
and Predictor Variables ........................ 73
Correlations among the Demographic Variables
and Outcome Variables ......................... 73
Correlations between the Predictor Variables
and Outcome Variables ......................... 73
Multiple Regression Analysis ................................................ 76
Path Analysis .................................................................. 78
Testing Moderation ................................................... 84
Testing Mediation .............................................................. 90
CHAPTER 5
Discussion and Conclusions ...................................................... 95
Summary of the Findings and Discussions ................................. 95
Hypotheses ..................................................................... 1 07
Conclusions ................................................................... 1 10
Limitations ..................................................................... 1 13
Implications ................................................................... 112
Reflections on the Data Collection Procedures ........................... 116
APPENDIX
Appendix 1 .................................................................... 118
REFERENCES .................................................................. 132

vii

LIST OF TABLES

Table 1 Items Deleted from the Scales ............................................. 52
Table 2 Internal Consistency of the Scales Using Cronbach’ Alpha .......... 53
Table 3 Descriptive Statistics of Demographic Variables ...................... 55
Table 4 Descriptive Data for Each Concept ....................................... 58
Table 5 Spearman Correlation Matrix of Predictor Variables .................. 66
Table 6 Spearman Correlation Matrix of Outcome Variables ............... 67

Table 7 Spearman Correlation Matrix between Demographic
and Predictor Variables ............... 68

Table 8 Spearman Correlation Matrix between Demographic
and Outcome Variables ............... 69

Table 9 Spearman Correlation Matrix between Predictor
and Outcome Variables ............... 70

Table 10 Significant Standardized Regression Coefficients upon
Each Outcome Variables ............. 77

Table 11 Significant Path Coefficients (Standardized Beta)
between Background Variables and Predictive Variables. . ..80

Table 12 Significant Path Coefficients (Standardized Beta)
between Background Variables and Outcome Variables. . . ..81

Table 13 Significant Path Coefficients (Standardized beta)
between Predictive Variables and Outcome Variables ...... 82

Table 14 Significant Path Coefficients (Standardized beta) between Family
Stressors, Family Copying Resources, and Caregiving Appraisal 83

Table 15 Regression Analysis of Family Stressors Variable
and Hypothetical Moderators .................... 89

viii

Table 16 Regression Analysis of Family Stressors Variable
and Hypothetical Mediator ....................... 92

LIST OF FIGURES
Figure 1 Conceptual Model for the Study ........................................ 16

Figure 2 Result of Path Analysis with Standardized Beta Coefficients. ......79

CHAPTER 1

INTRODUCTION

Rationale for the Study

The impact of caregiving on the quality of life (QOL) regarding the caregivers”
general well-being and mental health has long been an interest among researchers,
practitioners and others. Quality of life (QOL) is perceived as an outcome variable in
research across disciplines such as social science, nursing, and pediatric. The World
Health Organization (WHO 1997a) defines “Quality of Life (QOL) as the individuals”
perception of position on life in the context of culture and value systems in which they
live and in relation to their goals, expectations, standards, and
concems...incorporating...physical health, psychological state, level of independence,
social relations, personal beliefs, and their relationships to salient feature of the
environment...quality of life refers to a subjective evolution which is embedded in a
cultural, social, and environment context.” Hence, Quality of Life (QOL) is best
understood as a subjective construct which varies with the population studied. Hawthorne
et al., (1999) define that Quality of Life (QOL) is a multidimensional construct made up
of a number of independent domains including physical health, personal beliefs.
psychological well-being, functional roles, and subjective sense of life including
satisfaction, social relationships, and relationships with the environmental events.
Recently, empirical research reported that the quality of life of caregivers who have

family members with disabilities is lower than the quality of life of the general population

(Brown & Brainston, 1996; Chou, Lin, Chang, & Schalock, 2006; Guethmundsson &
Tomasson, 2002; Hakan, Halil, Filiz, & Siren, 2004; Heru, Ryan, & Vlastos, 2004). As
a result, there is a need to build a comprehensive knowledge to understand what
determines the perceptions of Quality of Life (QOL).

The Chinese culture is characterized as collective and interdependent practices
which dominate an individual’s interpretation of life events to the extent of the role they
play in defining Quality of Life (QOL). Chinese people hold negative views towards an
individual with disability. The traditional Chinese term for disability is canfci. meaning
handicap and useless; or cary'i. meaning handicap and illness. Health, illness, and
disability are not viewed purely as bio-physiological phenomena. Their definitions are
not only shaped by cultural values and beliefs, but are also influenced by socio-political
and psychological factors (Kleinman, 1994). Being a collective ethnic group, “regard
for face” (Ho, 1976) is deemed as an inherent feature in Chinese culture. The individual
within this culture is expected to honor his/her family and ancestors by having a good
reputation, being wealthy, obtaining high academic achievement (Chou et al., 2006). A
child with a disability literally is not acknowledged to be able to meet those profiles. In
addition, influenced by the prevalent Buddhist religion in Taiwan, disability is viewed
with shame, disgrace, outcast, and punishment from moral wrong doing in the past or the
present (Asian Culture Brief: China, 2001). Accordingly, having a family member with
disability is defined as losing ancestral face (Chou & Palley, 1998) to the extent
considerable stress is imposed on parents of children with disability. Taiwanese
caregivers of children with disabilities not only have to endure the long—term stress of

caregiving but also need to be able to cope with the social difficulties resulting from other

people’s reactions along with a feeling of being devalued by society. A previous study has
documented that in Chinese families, having a child with disability may impose particular
stress on the mothers, which may reflect negatively on their family, and affect their status
and relationships within the extended family and the larger societal circles (Ow & Katz,
1999).

A substantial disability study suggests that caregiver’s quality of life is associated
with caregivers’ socio-demographic backgrounds (Chou et al., 2006), family income
(Wang, Tumbull, Summers, Little, Poston, Mannan, & Tumbull, 2004), caregiver’s age
(Reilly & Conliffe, 2002), the severity of disability of the child (Chou et al., 2006;
Walden, Pistrang, & Joyce, 2000; Wang et al., 2004), caregiver‘s state of health , positive
appraisal of their role, subjective burden, and social support (Chou et al., 2006; Lim &
Zebrack, 2004). Across a range of studies, there has been strong evidence documenting
the unique emotional and physical demands heaped upon parents raising a child with a
chronic condition or disability (Bruce, Schultx, Smymios, & Schultz, 1994; Flortzn &
Findler, 2001; Warfield, Krauss, Hauser-Cram, Upshur, & Shonkoff, 1999). It is
noteworthy that caregiving is unlike an intermittent event that comes and goes; it is a
situation exerting permeable pressure and transforming the caregiver’s life. Thus, the
enduring role strains associated with long-term parenting of a child with disability
inevitably takes a toll on the caregivers’ psychological well-being (Greenberg. Seltzer,
Krauss, & Kim, 1997). Moreover, the environmental factors such as inadequate services,
limited accessibility and unfriendly atmosphere to caregivers and their child with
disability also impose negative outcomes on caregiver’s quality of life (Rosenfield, 1997;

Struening, Perlick, Link, Hellman, Herman, & Strey, 2001). As a result, understanding

caregiver’s quality of life involves many aspects of investigations to get a comprehensive
picture.

Stress or burden has been dominant in the caregiver research regarding the
relationship between caregiving and caregiver’s health for decades; however, social
support and coping mechanism are two important family resources that serve as buffers
for caregiver’s stress or burden to the extent that they impact his/her perception of quality
of life. Researchers (Essex, Seltzer, & Krauss, 1997; Heller & Factor, 1993; Tausig, 1992)
confirmed that the involvement of a social support network significantly mitigates
psychological distress among parents of children with disabilities. Therefore, it is
predictable that higher level of participation in social activities would be associated with
greater life satisfaction among caregivers. Previous studies reported that parents of
children with autism benefit from various intervention services and group support, in low
level of distress, relieve anxiety and depression, and enhance Overall perceived mental
health and well-being (Shu, Hsieh, & Li, 2002; Tonge, Brereton, Kiomall, Mackinnon,
King, & Rinehart, 2006), and increasing competence in managing child problematic
behaviors (Schreibman, 2000, Achreibman & Anderson, 2001, Shields, 2001). However,
research findings indicate that informal support seems to be more strongly related to
caregivers’ well-being than does formal support (Seltzer & Krauss, 1989; Smith, F ullmer.
Tobin, 1994). It is noted in the models of family adaptation that the ability of parents to
access appropriate support services will both help the family cope with the child’s needs
and also reduce disability-related problems for the child and family (Singer, Irvin, Irvine,
Hawkins, Hegreness, & Kackson, 1993). Nevertheless, Todd & Shean (1996b) offered

some insights into limitations of formal support services for parents, and conclude that

support services need to adopt a “more rounded view” of parents if effective help is to be
provided to them (p.40). In line with the above authors’ arguments and long-held views,
researchers (Nolan, Grant, & Keady, 1996) argued that families are their own experts in
possessing a “particularistic knowledge” about their own circumstances and repertoires
for dealing with things. It is recognized that Taiwanese parents of children with
disabilities tend to use religious beliefs as a coping mechanism to adapt to the reality of
rearing their children. Considering Chinese cultural aspects, religion may give meaning
to having a child with a disability by providing a framework for explaining
non-normative events.

Parents are obligated to care for their child with disability. Recently, in a series of
studies on the impact of disability on the parents’ well-being and family’s life as a whole,
the findings showed that families of children with disabilities demonstrate a great degree
of strength, articulating the positive contributions of disability on family experience
(Bayat, 2007; Scorgie & Sobsey, 2000; Taunt & Hastings, 2002). As caregivers, they
develop a unique set of beliefs and pathways associated with their caregiving efforts that,
in turn, become the fundamental framework to appraise their caregiving and are
important determinants of their psychological well-being. Lawton, Kleban, & Moss
(1989) used the term “caregiving appraisal” to describe “all cognitive and affective
appraisals and reappraisals of the potential stressors and the efficacy of one‘s coping
efforts” (p.61). This definition of appraisal incorporates relatively objective and
empirically verifiable beliefs (e.g., about what the recipient is capable of doing and the
social support that is available), as well as subjective feelings (e. g., concerns about the

recipient’s condition and the quality of available support). Hence, a dysfunctional

caregiving relationship can be predictive to the extent the caregiving burden impacts the
caregivers’ behavior. It is worth examining how caregiving has affected the lives of
caregivers and understanding how caregivers interpret events and link. them to certain
outcomes being critical in interventions that effectively reduce stress.

Children with Autism Spectrum Disorder (ASD) are characterized with a varying
degree of impairment in communication skills, social interactions, and cognitive
functions (CDC, 2006); their challenges require considerable human, material, and
emotional cost, and formal help is often insufficient, imposing the burden of care on the
core family. It is well documented that the demands placed on parents caring for a child
with autism contribute to a higher overall incidence of parental stress, depression, anxiety
and adversely affects family functions and marital relationships compared with parents of
children with other intellectual, developmental, or physical disabilities (Dunn,
Slomkowski, & Beardsall, 2001; Ylm, Moon, Rah, & Lee, 1996). As indicated in research,
in most cases, mothers become the primary caregivers and the main support of a child
with autism, and they experience burden and stress (Howlin, Goode, Hutton, & Rutter,
2004). However, fathers are typically less involved in the day-to-day care of their child
with disability even when the mother is in a paid employment (Hastings, 2003; Roach,
Orsmond, & Barratt, 1999; Willoughhby & Glidden, 1995). In fact, researchers have
confirmed that mothers of children with autism are more likely to suffer from depression
than mothers of children with intellectual disability (ID) and mothers with typically
developing children (Bristol, Gallagher, Holt, 1993; Olsson & Hwang, 2001; Yirmiya &
Shaked, 2005) and this has an intensive impact on their quality of life.

Most studies on caregivng research were done in Western countries. Although. some

Eastem-based research has consistently documented a handful of emotional and physical
effects on caregivers of children with mental retardation, cerebral palsy, Down Syndrome
and chronic illness patients; little attention has been paid to the effects that life-long
caregiving has on the quality of life of parents with children having autism. Recently,
researchers have become aware of the importance in studying the well-being of parents of
children with autism; however, the samples were limited to those receiving governmental
services in southern Taiwan, and the sample size is small. Therefore, it is worthwhile
investigating the caregiving effects on caregivers’ quality of life within the autism
population in Taiwan. This study will involve caregivers (not restricted to mothers) and

will make a meaningful contribution to literature in the social sciences.

Purpose of the Study

The primary purpose of this study was to investigate and predict the quality of life
among caregivers of children with autism in Taiwan in terms of family stressors, family
coping resources, and caregiving appraisal, employing cross-sectional data to depict the
phenomenon. This study also examined four dimensions of caregivers quality of
life-physical health, psychological health, social relationship and environment. Several
predictor variables included: 1.) Family Demographic Variables including caregiver’s age,
education level, marital status, employment status, and family annual income and ; 2)
Family Stressors including parental stress, the severity of child behavioral problems, and
social stigma; 3) Family Coping Resources consisting of informal social support, formal

social support and religious coping; and 4) Caregiving Appraisals indicating positive

appraisal about caregiving satisfaction, and negative appraisal about caregiving burden.
Measures used in this study were intended. to provide a comprehensive picture of
caregiver’s quality of life within a multisystemic model. Within such a model, caregiver’s
quality of life was examined from an individual, dyadic (i.e., relationship with the target
child), familial, extrafamilial, and community level. Specific instruments were selected

based on how pertinent they were to the areas assessed and their psychometric properties.

Research Questions

Six research questions were addressed in this study and listed below:

1. Are family stressors, identified by parents of children with autism, related to parental
caregiving appraisal and quality of life among parents of children with autism in
Taiwan?

2. What effects do family stressors and family coping resources have on parental
caregiving appraisal?

3. Do family coping resources moderate family stressors on the quality of life of parents
having children with autism in Taiwan?

4. Does parental caregiving appraisal mediate the relationships between family stressors
and family coping resources on the quality of life?

5. What are the factors that predict quality of life of parents who have children with
autism in Taiwan?

6. Are family demographic variables related to the quality of life of parents with

children with autism in Taiwan?

Hypotheses

This study tested the following hypotheses:

H01. Parental demographic variables are not related to the quality of life among
Taiwanese caregivers of children with autism.

Hal. Parental demographic variables are related to the quality of life among Taiwanese
caregivers of children with autism.

H02. Family stressors (parental stress, severity of child behavioral problems, and social
stigma) and the caregiver’s quality of life measured by the four dimensions (physical
health, psychological health, social relationship, and environment) would not be mediated
by the intervening variables (positive and negative caregiving appraisals).

Ha2. Family stressors (parental stress, severity of child behavioral problems, and social
stigma) and the caregiver’s quality of life measured by the four dimensions (physical
health, psychological health, social relationship, and environment) would be mediated by
the intervening variables (positive and negative caregiving appraisals).

H03. Family stressors, family coping resources, and caregiving appraisal 0n the quality of
life of parents having children with autism in Taiwan.

Ha3. There is effect of family stressors, family coping resources, and caregiving appraisal

have an effect on the quality of life of parents having children with autism in Taiwan.

Assumptions

1. The role of caregiving influences Quality of Life of parents of children with autism in

Taiwan.

2. The Taiwanese parents are actively seeking resources to help raising their children
with autism.

3. Although the society is changing, Taiwanese parents of children with autism still
perceive their children’s disabilities as the determinant of their quality of life.

4. Parents will respond honestly to questions about their child-related stressors, their
perceptions of caregiving, their family resources regarding social networks, coping
mechanisms, available community services, and the impact of existing special

education policies.

Theoretical Framework

The conceptual framework for predicting the role ofcarcgiving appraisal and quality
of life of parents who have children with autism was generated from three major sources:
Family Ecosystem Theory (Bubolz & Sontag, 1993), Patterson’s Family Adjustment and
Adaptation Response (FAAR) Model (Patterson, 2002), and a contextual and theoretical
model developed by Dilworth-Anderson and Anderson (1994). The proposed model for
this study includes the following variables: Family stressors (the severity of child
behavioral problem, parental stress, and social stigma), family coping resources (religious
coping, informal social support, and formal social support), caregiving appraisal (positive

and negative caregiving appraisal), and quality of life.

Family Ecosystem Theory

Family ecosystem is a subsystem of human ecology ( Bubolz & Sontag. 1993) that

10

emphasizes the interactions between families and environments. The family ecosystem
has three basic elements: (1) Organisms: These are the family members. (2)
Environments: Including natural, human-built environments, and social-cultural
environments. (3) Family organization: Family functions to transform energy in the form
of information into family decisions and actions. Hence, the family is seen as a system,
with boundaries between it and other systems; emphasizing the interactions between
families and conditions surround them. In their elaborate Human Ecology Theory, Bubolz
& Sontag (1993) proposed that the individual was a product of cooperation between the
environment and organismal heredity and suggested that a science be developed to study
organisms in their environment. Later, they outlined family ecosystem as being composed
of three organizing concepts: humans, their environment, and the interactions between
them. The humans can be any group of individuals dependent on the environment for
their subsistence. The environment includes the natural /physical environment, which is
made up of the atmosphere, climate, plants, and microorganisms that support life.
Another environment is social-cultural environment including community, languages,
laws, norms, cultural values, and so on. The environment can also be built by humans,
which includes roads, machines, shelter, material goods and all these constructed.
sustenance. As Sontag and Bubolz (1993) discussed, embedded in the natural and
human-built environments is the social-cultural environment, which includes other
human beings; cultural constructs such as language, law, and values; and social and
economic institutions such as our market economy and regulatory systems. The
ecosystem interacts at the boundaries of these systems as they interface, but it may also

occur within any part of an ecosystem that causes a change in or acts upon any other part

11

of the system. Change in any part of the system affects the system as a whole and its
other subparts, creating the need for adaptation of the entire system, rather than minor
attention to only one aspect of it.

From the Family Ecosystem Theory point of View, the family is recognized as the
fundamental human system made up of different subsystems. It is also understood that
family members are joined in a network of pathways over materials, information, and
other forms of potential energy, in interaction with their environments (Griffore &
Phenice, 2001). Family ecosystem is characterized with its dynamic interaction,
purposive organizations; each family has its own preferred states, goals, and outcomes
(Paloucci, 1977). As a result, in response to the internal or external environmental
changes, family members may change their values, rules, and goals to achieve their
optimal quality of life (Bubolz & Sontag, 1993). Employing Family Ecosystem Theory
allows us to see how a change in one component of the system affects the other
component, which in turn affects the initial component. The application of the systems
perspective has particular relevance to the study of the family as families are comprised
of individual members who share a history, have some degree of emotional bonding, and
develop strategies for meeting the needs of individual members and the family as a group
(Anderson & Sabatelli, 1999). To date, individuals and family function as a whole will
involve a process of adaptation and resources allocation/reallocation to ensure their
survival and the extent to which improves their quality of life. Family Ecosystem
Theory is useful for us in understanding the complexity of families, as well as the

interactive patterns that underlies the family interactions.

Family Resilience Theory

Family resilience theory has its roots in the family stress and coping literature
(Patterson, 2002). Of the models that have emerged, Patterson’s Family Adjustment and
Adaptation Response (FAAR) Model (2002) is useful for understanding how competent
family functioning emerges as a product of family relational processes. The FAAR Model
“emphasizes the active processes families engage in to balance family demands with.
family capabilities as these interact with family meanings to arrive at a level of family
adjustment or adaptation” (Patterson, 2002b, p. 236). The family’s perception of the
situation is a crucial link in developing competence (resilience) or vulnerability (risk).
The unique perspectives and collective experiences of an individual family member also
influence the family’s perception of the situation. Thus it is important in the current study
to understand the participating families’ perceptions of their life with a special needs
child, and how the interactions with each ecological system determine families’ abilities

to adjust or adapt to the chronic stress of rearing a child with special needs.

Contextual Model

The study about the effects of caregiving experiences on caregivers’ quality of life
requires a holistic understanding of social, cultural, and psychological contexts in which
caregiving takes place. Adapted from Revenson’s (1990) contextual model,
Dilworth-Anderson & Anderson (1994) Dilworth-Anderson & Anderson (1994) proposed
that the well-being of caregivers can be predicted as a function of the ecological niche.
The ecological niche consists of five interdependent and overlapping systems or levels.

These contextual levels range from macro-sociolcultural factors to micro-individual

variables. Together, these contextual variables are postulated as being interrelated to
explain the complexity of quality of life. (1) The sociocultural context including cultural
characteristics and socioeconomic characteristics serves an overarching macro-level
perspective under which all other contextual levels are embedded in. (2) The
interpersonal context demonstrates that the caregiving takes place in the relational
context which involves individual caregiver, family, and friends to function as a
collective activity. (3) The situational context refers to the proximal environment of the
caregiver. It involves factors that are directly related to the activities of caregiving, along
with other demands confronting the caregiver. (4) The temporal context denotes the time
in the caregiver’s life cycle that caregiving duties begins. (5) The last is the personal
context. The individual characteristics play an important role on the caregivers’
well-being. According to Dilworth-Anderson & Anderson (1994), except the caregiver’s
physical health, personal context encompasses individual attitudes and beliefs about the
caregiving role, the coping strategies and resources of the caregiver, and expectations
regarding caregiving responsibilities.

Guided by Bubolz & Sontag’s (1993) Family Ecosystem theory, Patterson’s family
resilience theory, and Dilworth-Anderson & Anderson’s contextual model, the conceptual
model used for this study is based on the proposition that parents’ caregiving appraisal
mediates the effects of the severity of child behavioral problems and parental stress on
parents’ quality of life. In addition, family coping resources including formal social
support, informal social support and religious coping mechanism exert direct influences
as well as Operate as moderators on parents’ quality of life. Family demographic variables

served as control variables and were not the central focus of this model.

The model is illustrated in Figure 1.

Note: demographic variable serves as background information.

15

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Conceptual Definition Variables

Definitions of variables in the Conceptual Model are presented here. The operational
definition of variables will be addressed in the instrumentation section in Chapter three.

Quality of Life

 

Quality of life is conceptualized as the extent to which basic needs met and values
are realized. It indicates caregiver’s subjective perception toward the satisfaction of
his/her physical well-being, emotional/spiritual well-being, material well-being,
interpersonal relationships, and environmental relationships.

FamilLStressors

Family stressors in this study refer to the severity of child’s behavioral problem and
its effect on caregiving and perceived social stigma experienced by caregivers as the
family primary stressors.

Family Coping Resources

 

The family resources refer to the formal, informal social supports and religious
coping mechanism which parents employ to help them deal with caregiving demands.

Caregiving Appraisal

 

In this study, caregiving appraisal refers to parents’ any cognitive and affective
evaluation of his/her caregiving experience as satisfied or burdened.
Demographic Information

The demographic variables of interest in this study were: parent’s age, parent’s

education level, parent’s employment status, monthly family income, parents’ marital

status, gender of child with autism, severity of child with autism, number of

children/family members, and religion.

18

CHAPTER 2

REVIEW of the LITERATURE

This chapter is organized into three sections. Section one provides an overview of
quality of life literature. Section two discusses the research examining variables related to
the caregiver’s quality of life. It focuses on three major factors: (1) family stressors
including the severity of child’s behavioral problem, parental stress and social stigma. (2)
caregiving appraisal, and (3)family coping resources including religious coping. informal

and formal social support.

The Definition of Subjective Quality of Life

Life satisfaction and psychological well-being have been a central focus in the
research however, the increasing interest in study on quality of life outperforms these two
constructs due to expanding the scope of study cannot be overlooked. The definition of
quality of life varies in terms of research interest and its application. There are ways to
subsume quality of life in accordance with the research interests; two distinct domains in
gerontological research are pervasively studied: one is health-related quality of life
(HRQOL); the other, nonhealth or environment-based quality of life (Spilker & Revicki,
1999). Health-related quality of life (HRQOL) relates to specifically an individual’s
subjective evaluation about his/her own satisfaction on health-related domains. In 1997,
Albert proposes four domains of health-related quality of life and these domains manifest
typical outcomes in medical and social science research. They are: (1) functional status

(e.g., whether individual is able to mange a household, use the telephone), (2) mental

l9

health or emotional well-being (e.g., depressive symptoms, positive affect), (3) social
engagement (e.g., involvement with others, engagement in activities), and (4) symptom
states (e.g., pain, fatigue). However, nonhealth-related quality of life is characterized by
both the natural and social constructed environment (i.e., economic resources, housing,
air and water quality, and community stability) and personal resources (i.e., the capacity
to form friendships, finding satisfaction in spiritual or religious life). Rapkin &
Schwartz (2004) contend that subjective process of appraisal is the key role which affects
the observed quality of life outcomes and the individuals may change how they appraise
quality of life over time. Hence, the individual is the qualified one who can judge
his/her quality of life based on his/her unique experiences (Eklund & Backstrom, 2005;
Ferrans, 1996).

After reviewing key literature on disability, Felce and Perry (1995) developed a
three-element model of quality of life, namely; quality of life conditions, subjective
feeling of well-being, and personal values and aspirations. The three components interact
with each other in dynamic ways and are subject to be influenced by the external factors.
In their view, quality of life is defined as an overall general well-being that comprises
objective descriptors and subjective evaluations of physical, material, social, and
emotional well-being together with the extent of personal development and purposeful
activity, all weighted by a personal set of values. They suggest that domains of quality of
life can be classified as (1) physical well-being (i.e., health, fitness, and physical safety);
(2) Material well-being (i.e., finance, income, meals, food, transportation, quality of
living environment), (3) social well-being (i.e., interpersonal relationships between

family members, extended family members, and friends), (4) development and activity

20

(i.e., competence, productivity, education, and contribution), (5) emotional well-being
(i.e., affect, mood, satisfaction, fiilfillment, and religious faith). In addition, emphasizing
the multidimensionality in the model of quality of life, Raphael, Renwick, Brown, &
Rootman (1996) propose a model of quality of life with three domains: being, belonging,
and becoming. Each domain consists of three dimensions. This model is particularly
strong on the interaction between the personal, interpersonal, and environmental aspects
of people’s lives, and the grth in the “becoming” domain, which itself focuses on an
individual’s goals, hopes and aspirations and highlights the importance of the stress on
“possibilities” in the definition of quality of life. Similarly, Branston, Heflinger, &
Bickman (2005) propose that quality of life is influenced by personal and environmental
factors and their interactions, has the same components for all people, and is enhanced by
self-determination, resources, purpose in life, and a sense of belonging. It is evident that
the roadmap of quality of life is paved with taking both objective well-being and
subjective well-being into account in conducting disability research.

Ample evidence from family caregiving studies document how caring for family
members with disabilities or illness can impact multiple aspects of caregiver’s lives
(Pisula, 2003; Morimoto, Schreiner, & Asano, 2003). Furthermore, researchers articulate
that the caregiver’s quality of life is also influenced by other existing environmental
stressors, stress appraisal, coping methods, and social support (Goode, Haley, Roth, &
Ford, 1998; Lim & Zebrack, 2004; Schieve, Blumberg, Rice, Visser, & Boyle, 2007;
Vedharh, Shanks, Anderson, & Lightman, 2000). After reviewing 22 of the most
commonly used quality of life indexes from around the world, researchers found that

most indexes were not based on a tested conceptual model of quality of life (Hagerty.

21

Cummins, Ferriss, Land, Michalos, Peterson, Sharpe, Sirgy, & Vogel, 2001). Inspired by
system-theory approach, they propose a System Theory Structure of Quality of Life
Model that contains three parts: inputs (e.g., environmental factors, public policy,
throughputs (e.g., individual choices), and outputs (e.g., happiness, survival, and
contribution). This model suggests that individual’s conditions (e.g., marriage status,
number of children, educational level, personal health, and expectation standards) operate
between/within the systems to the extent that impact the outcomes. Although scholars
have different points of view regarding domains of quality of life, most researchers
generally agree that quality of life is multidimensional, subjective, and relating to a state
of physical, psychological, social, and spiritual well-being. Substantial studies document
that concepts of quality of life for caregivers encompass family burden (Greenberg et al.,
1993; Sales, 2003), family function, stress, emotional distress (Lecavalier, Leone, &
Wiltz, 2006; Lim & Zebrack, 2004), depression (Dreer & Elliott, 2007), mental health
(Hastings & Brown, 2002; Shu, Lung, & Huang, 2002; Shu & Lung, 2005),
psychological well-being (Chou et al., 2006), and life satisfaction (Glozman, 2004;
Grant, Pamcharan, Mcgrath, Nolan, Keady, 1998). Therefore, clarifications of the factors
that contribute the outcome (quality of life) need further examination.

Given the trends in the development of a model for quality of life, we can conclude
there is increasing agreement that quality of life is conceptualized as a multi-dimensional
construct; is virtually subjective, individual perceives the various core dimensions
differently, the value attached to each core dimension varies across one’s life (Cummins,
1997; Haas, 1999a; Hagerty et al., 2001; Hawthorne et al., 1999; Janse et al., 2004; Felce

and Perry, 1995; Schalock, 2000). However, attending to the cross-cultural aspects of

22

quality of life is critical; in developing its quality of life instrument, the World Health
Organization (WHO 1997a) QOL Group established an international expert review panel
that identified 3 defining characteristics (subjective, multidimensional, and individuals
perceptions of both positive and negative dimensions) of quality of life. In accordance to
the characteristics of this study, the definition and model of World Health Organization

(WHO 1997a) Quality of Life (QOL) is suitable for measuring caregiver’s quality of life.

Family Stressors and Parents’ Quality of Life
Parental stress and the severity of child ’s behavioral problems

Family stressors can be defined as real life events that happen to a family which
cause imbalance between the demands on the family and the family's ability to meet
those demands which subsequently may stimulate coping strategies in response to the
stressors. In the study of families with special needs children, stressors are conceptualized
as being external to the individual and are typically measured by the degree of disability
and demands ensuing from the care recipient (Hastings, 2003; Lawton, Moss, Kleban,
Glicksman, & Rovine, 1991). Through the lens of Social Model of Disability, parents of
children with disabilities not only have to strive for the acceptance from societal
discourse bust also have to cope with the struggles resulting from ambivalent
expectations for their beloved ones. Researchers (Mak, Ho, & Law., 2007; Schieve et al.,
2007) have identified that children with autism entail developmental problems such as
language delay, repeated compulsory behaviors, challenges in communicating, and lack
of community understanding which may impose long-term treatment needs and

additional stressors to their parents as well as family as a whole. Specifically, the

23

complex and unpredictable care demands for a child with autism can impacts multiple
aspects of a caregiver’s life including marriage, career, lower perceived parenting
competence, anxiety, depression, physical health, psychological health, social life, and
stress (Bishop, Richler, Cain, & Lord, 2007; Gray, 1993, 1994; Norton & Drew, 1994;
Rodrigue, Morgan, & Geffken, 1990).

Not surprisingly, functional limitations and behavioral problems in a child with
disabilities would act as stressors. It is well-known that many families who have young
children with special needs experience greater levels of stress than families with children.
who do not have special needs (McCubbin, 1989; Dyson, 1991). In the light of the stress
studies, Hastings (2003) suggested that the stresses and difficulties of caring for a child
with an emotional disability are reflected in the ways that caregivers report their daily
lives are affected by their child problems. Even if the family manages to meet the
increased demands placed in the family system that result from caring for a child with
special needs, the family is more susceptible to other sources of stress such as in the
marital relationship and parenting behaviors (Floyd & Zmich, 1991); disruptions in
family life (Hastings, 2003), inflation, unemployment, demands on time, emotional
energy, financial resources, and limited socialization opportunities (Able-Boone &
Stevens, 1994) as well as restriction of career opportunities (McCubbin, 1989;
Able-Boone & Stevens, 1994). Previous research also demonstrated that unemployed
individuals generally report more depression, anxiety, social isolation, and low
self-esteem than employed individuals (Feather, 1990). Thus, psychological effects of
caring for a child with autism impose on the caregiver’s need which must be addressed.

Peterson (1987), talking about the stressors these families face. states:

24

....additional expenses and financial burdens; actual or perceived

stigma; heightened demands on time as a result of caretaking requirements
for the child; difliculties with basic caretaking tasks such asfeeding, bathing,
dressing; decreased time for sleep; social isolation from friends, relatives,
neighbor; reduced time for leisure or personal activities; difficulties in
managing childis behaviors; interference with routine domestic
responsibilities; and general feelings of pessimism about the future. (pp.
422-423)

As indicated in the above statement, the caregiving task leads to caregivers" stressors
that entail physical demands, social isolation, and spiritual needs. These stressors are
exacerbated since prior social supports, such as friends and extended family members are
often unsure of how to help and may avoid becoming involved altogether (Baily et al.,
1994; Powers, 1993; Shu & Lung, 2005). However, Struening et al. (1995) found lower
levels of depression among parents of adults with mental illness who received support
from other family members with caregiving tasks.

With the characteristics of Family Ecosystem Theory, researchers articulate that
having a child with a disability may be significantly challenging to family relationships,
and the unique combination of impairments associated with autism and related disorders
impose a high risk of psychological difficulties for family members (Baronet, 2003;
Holroyd, 2003; Seltzer et al., 1991). Moreover, caregivers are likely to orchestrate their
daily life activities around the child with disability the extent to which they neglect other
family members’ needs (e.g., spouse, non-disabled child) to care for the child with

disabilities. As a result, social relations within a family can be affected. It is notable that

25

regular exposure to negative emotions and conflict and the accompany distress may also
undermine an individual’s well-being (Baronet, 2003; Bishop et al., 2007; Lam &
Mackenzie, 2002; Mak et al., 2007). Other factors have been identified to associate with
caregiver’s stress are: socio-demographic factors such as age, gender, education level,
and financial status of both caregivers (Haley et al., 1987; Pearlin et al., 1990).

In contrast to above findings, some researchers contend that having a child with
autism is not necessarily detrimental to the caregivers’ psychological well-being and
marital relationships. Recently, Scorgie & Sobsey (2000) have found a series of positive
transformations existing among parents of children with disabilities. Several meaningful
transformations include new roles, self-gain or the extension of existing traits, and
improvements in relationships with a range of people from those in the family to
friendships. In the similar vein, mothers of children with autism report having a close
mother-child relationship, coping very well with parenting tasks, not so angry with their
child as compared to mothers of typical children (Haley, Gitlin, Wisniewski, Mahoney.
Coon, Winter, Corcoran, Schinfeld, Ory, 2004; Hastings, Kovshoff, Ward, Espinosa,
Brown, Remington, 2005; Montes & Halterman, 2007). Parenting can be rewarded by
being able to share ideas with one’s child; however, parents with a child with autism are
less likely to have such rewards than their counterparts even though they report they cope
with parental stressors very well (Montes & Halterman, 2007; Schieve et al., 2007).
Factors associated with mother’s remarkable resilience while they look after their
children with autism are unclear and need to be further identified.

Social Stigma

It is recognized that parental hopes for a good life for children with disabilities

26

crosses cultures. Unfortunately, there is an increasing trend that health, beauty, and
independence are highly valued nowadays. Therefore children with disabilities literally
bear the negative valued traits within the society. Having a child with disability is thought
to arise from something that parents had done, especially the mother or her side of family.
Thus, shame and blame associated with mothers may generate an invisible stressor which
will jeopardize the quality of life among caregivers of children with disabilities. In
addition, central to the Chinese tradition, the importance to preserve family name is
deemed as an obligation of each generation. However, a child with disability can never
become a right and proper person to carry on this duty (Holroyd, 2003). Oftentimes
parents of children with disabilities not only combat the intricating of caregiving issues
but also encounter the stigma resulting from public perceptions (e.g., status reduction,
role restriction) and reactions (e.g., friendship refusal, community rejection) to
individuals with disability. For instance, previous study has shown that the majority of
community respondents report negative attitudes toward people with an identified
disorder (Gray, 1993). Stigma can be defined as a mark or flaw due to a personal or
physical characteristic that is viewed as socially unacceptable. The expectation and actual
experience of stigmatization can result in persistent depression (Link et al., 1997),
impairment in social relationship (Perlick et al., 2000), and quality of life (Rosenfield,
1997). Green (2003) conducted a study regarding the stigma and the lives of families of
children with disabilities. The findings indicate that perceptions of individuals with
disabilities are devalued and discriminated against (stigmatized) by others which increase
maternal distress (subjective burden). It is suggested that informed, understanding, and

supportive communities are needed in which parents and children with disabilities can

27

develop rewarding interpersonal relationships with members of the community
(Struening et al., 2001). These relationships would enhance the quality of the lives of
caregivers (parents), children with disabilities, and involved community residents. In
Chinese culture, the majority holds negative attitudes towards individuals with
disabilities therefore, it would be worthy to examine the devaluation and discrimination

experienced by parents to the extent that impact their quality of life.

Caregiving Appraisals and Quality of Life

Studies have found that attitudes, concerns, perceptions, and appraisals are
significant predictors of psychological well-being for caregivers of family members with
disabilities (Holroyd, 2003; Miltiades & Pruchno, 2002; Pruchno, Patrick, & Burant.
1997). In line with the above findings, Shu & Lung, (2005) report that caregivers’
subjective well—being has an effect on their quality of life. According to Gray (2003),
mothers were more likely to claim that their child’s autism had profoundly impacted their
emotional well-being. Despite the long-term provision of daily care activities to a child
with disability which imposes negative outcomes of well-being of the caregiver (Penning.
1995); researchers report that positive perceptions held by the caregiver can indeed lead
to a better quality of life for the family as a whole (Gupta & Singhal, 2004, 2005 ).
Lawton and colleagues (1991) defines “subjective caregiving burden” as the “perception
of psychological distress, anxiety, depression, demoralization, and generalized loss of
personal freedom attributed directly to caregiving”. Caregiving satisfaction, on the other
hand, is the perceived benefit of providing care and represents positive affect received

from caregiving. Recently, researchers increasingly found that the relationship between

28

parents and their child with disability is ambivalent (Brinchmann, 1999; Taunt &
Hastings, 2002). As a result, caregivers may report both negative parental and family
outcomes such as parenting stress and positive outcomes such as life satisfaction at the
same time.

Despite a wide range of disability studies there are concerns in finding that
caregivers (most of whom are mothers) experience more stress, guilt, and other negative
emotions. Orsmond et al., (2006) conducted a quantitative study to examine factors
associated with mother-child relationship quality among adolescents and adults with
autism and found that positive mother-child relationship exists across multiple measures.
These positive aspects of mother-child relationship, expressed by mothers toward their
adult child with autism is associated with greater maternal Optimism, more positive
psychological and physical well-being (Greenberg et al., 2004) and in terms of well-being
related to their caregiver role (Pruchno, 2003). In addition, recent studies document that
caring for a child with disability can be a source of family closeness or family unity (Behr,
Murphy, Summer, 1992; Stainton & Besser, 1998). It has been well-documented that
positive perceptions of raising a child with disability include: personal growth, increased
family closeness, raised sensitivity to others, less focus on materialism, and increased
opportunities to expand one’s social and political activities and contacts (Grant,
Pamcharan, Mcgrath, Nolan, Keady, I998; Greer, Grey, & Mcclean, 2006; Scorgie &
Sobsey, 2000; Scorgie et al., 1999; Stainton & Besser, 1998; Taunt & Hastings, 2002).
Research emphasizing individual’s adaptation reveals that caregivers, with or without
outside help, can change their priorities, modify their lifestyle, and reorganize their

schedules to set up a household routine that gets needed tasks done (Schall, 2000;

29

Warfield et al., 1999). A body of research has confirmed that caregivers of individuals
with disabilities report satisfaction and reward in their caregiving duties (Bulger,
Wansersman, & Goldman, 1993; Greenberg et al., 1993; Hastings et al., 2005). In
addition, previous studies indicate that having a child with special needs is not primarily
a story of “gloom and doom” for every family (Hastings et al., 2005; Mak et al., 2007). In
fact Barnett and colleagues (2003) report that many parents raising children with chronic
health conditions and developmental disabilities report high levels of satisfaction and
enjoyment of their role. Bristol et al. (1993) found that in spite of dramatic differences in
the levels of severity of the children’s disabilities, and in the levels of spousal support, the
families who had children with disabilities and families who did not, had similar scores
on measures of family functioning. Therefore, it is plausible that particular caregiving
experiences may have different implications for quality of life depending on whether or
not caregivers report having caregiving satisfaction. Several studies have confirmed that a
mother’s subjective perception of mothering influences how she defines herself and her
meaning of life (Bishop et al., 2007; Greenberg et al., 2004; Shu et al., 2001).

Over the years, various terms such as stress, distress, caregiver burden, caregiver
strain, have been studied in caregiving studies which denote the demands, difficulties,
responsibilities, and negative psychicological consequences of caring a family member
with special needs (Brannan et al., 1997; Baronet, 2003; Holroyd, 2003; Seltzer et al.,
1991; Taylor-Richardson, Heflinger, Brown, 2006). Research has identified several areas
of caregiver strain, including financial strain, conflict between family members, effect on
family life, effect on physical and mental health of the caregivers, and limitations on time.

personal freedom, and privacy (Schene, 1990, Strawbridge et al., 1997). Caring for a

30

child or adult with intellectual disability is associated with a higher level of family burden
(Chou et al., Duvdevany & Abboud, 2003; Greer et al., 2006). The ongoing disability
alongside the maladaptive behaviors often lead parents to think that they are supposed to
be informed by effective strategies or resources to cope with the situation (Lazarus &
F olkman, 1984). Through the lens of ecosystem theory, researchers (Aneshensel, Pearlin,
Mullan, Zarit, Whitlatch, 1995) conceptualized caregiving stress as the intersection of
care recipient’s demands, external enviromnent, and caregivers internal state. Thus, the
more demands and obstacles that exist; the more likelihood the caregivers will appraise
the caregiving as a negative effect. Given the characteristics of Chinese culture,
disabilities are seen by many families as the result of something the parents and often the
mother (or her side of the family), have done, and thus, they are blamed to be responsible
for the child’s well-being (Holroyd, 2003). Therefore, it is not surprised that caregivers
(often the mothers) of child with disability will experience tremendous negative effects
on their psychological, mental, and physical well-being.

In sum, the caregiving appraisals are affected by the stressors and resources
available to the caregivers. Caregiving is a normal part of being the parent of any young
child, however, providing a high level of care required by a child with long-term
functional limitations can become burdensome and may impact upon both the physical
and psychological health of the caregiver (Raina et al., 2004). Due to caregiving overload.
caregivers are more likely to have health problems, depression, anxiety, psychosomatic
symptoms, and role strains that impact their caregivers’ quality of life than caregivers of

typical children.

31

Family Coping Resources and Quality of Life

Family resources play an important role in family adjustment and adaptation to the
extent they influence the quality of life of caregivers (Duvdevany & Abbooud, 2003;
Garwick et al., 1998; McCubbin , Thompson, & McCubbin, 1996). The presence of
family resources such as formal social support, informal social support, and religious
coping styles in times of need can serve as a buffer, or protective factor for the caregiver
to rebound from the stressors (Bailey et al., 1994; Chiu, 2002; Dunn, Burbine, Bowers, &
Tantleff-Dunn, 2001; Siege], Revises, Houts, & Mor, 1991). Family stress model
addresses the parental perceptions of internal and external resources as crucial factors in
mitigating stress (Pearline et al., 1990; Patterson, 2002). A recent study has confirmed
that internal as well as external resources are particularly critical when raising a child
with developmental disabilities (Duvdevany & Abbound, 2003). Social support in the
present study is defined as the active participation of “significant others” in caregiving
effort to manage stress. There have been increasing studies emphasize social support,
both formal and informal, as an external resource which provides tangible and emotional
support to parents of children with special needs children to the extent of reducing stress
resulting from caregiving (Chou et al., 2006; Gupta & Singhal, 2005; Hanson & Hanline,
1990; Ow, Tiong, & Goh, 2004). These two kinds of support affective and instrumental
assistance provide a “lift-ups” for parents; in turn, they can manage the daunting demands
to support their child with special needs. Given that children with autism commonly live
at home with their families, parents (usually mothers) are their primary caregivers. In
terms of seeking pattern of assistance for the primary caregivers, the available

enlistments support general go with immediate family first, followed by the other

32

relatives, friends and neighbors, and finally formal social support (Ow et al., 2004). This
is particularly true in Asian culture.
Inform! Social Support

Informal social support includes support from a spouse, sibling of disable child,
extended family, neighbors, friends, or religious workers. Although the chronic nature
associated with the stress of raising a child with special needs often affects marital
relationships at their weakest points (Bishop et al., 2007; Schieve et al., 2007), such as
decreased marital quality and increased divorce rates; researchers have confirmed that the
importance of marital relationship/ spousal support is associated with better personal and
marital adaptations among families with young developmentally disabled boys (Trute &
Hiebert-Murphy; 2002) and life satisfaction among parents of children with autism
(Milgram & Atzil, 1988). Family social support can be thought of as an important
resource originating from persons outside the family including support from relatives,
friends, and community institutions (McCubbin et al., 1996). By emphasizing
self-reliance/self-sufficiency, the family is deemed as a material and. an emotional
resource within the context of a Chinese culture; as a result, the responsibilities of family
members to provide care for special needs relatives saliently outweigh the formal
assistance (Chiu, 2002, 2004; Lam & Mackenzie, 2002; Shu et al., 2001). This can
explain why many parents express they need to outlive their child with disability when
considering the caregiving issues. Given that the nature of long lasting sibling
relationship in the family, brothers and sisters of children with special needs will share
many of concerns that their parents experience (Dunn et al., 1994); they also may act in

the surrogate parental role to look after their siblings with disabilities. Presumably,

33

nondisable sibling’s assistance and support can significantly reduce parents’ level of
stress which may contribute to the quality of life of caregivers with children with
disability. Although limited research has been done regarding the instrumental support
from nondisabled siblings, relative research shows maternal well-being, morale, and
health are associated with increased levels of sibling involvement in the family (Seltzer et
al., 1991). In the consideration of family social support, grandparent support has been
classified as instrumental or emotional and both are predictive of parent’s psychological
adjustment and family well-being while raising a child with disability (Findler, 2000;
Hastings, 1997; Mirfin-Veitch et al., 1997; Trute, 2003). An association between having
higher numbers of people in the household and lower caregiving strain has been found by
Heflinger & Taylor-Richarson (2004); this may be due to the caregiver’s feeling they
have more informal social support (Duvdevany & Abboud, 2003) and thus more
assistance with day-to-day childcare responsibilities. Researchers indicate that families
rely more on informal social support rather than formal social support services for their
adult children with disabilities (Molasion et al., 1995). Moreover, families perceive that
by using the available community services implies they have failed in their roles as
caregivers (Roberto, 1993). One study reports that parents of children with disabilities
seem to prefer emotional support (Trute, 2003).

Although informal social support from spouse, other family members, and friends
have beneficial effects on the quality of life among caregivers of children with autism,
empirical research regarding the relationship between caregiving and quality of life has

shown mixed results.

34

Formal Social Support

Formal social support refers to the support received from the govemment (e.g.,
Individualized Education Plan), service agencies (eg., respite care), professionals (e.g.
child behavioral management skills, referral) or self-help groups (eg., information
sharing). Previous studies have shown the effectiveness of social support on reducing
caregiver stress and burden (Greenberg et al., 1997; Gray, 1994; Heller & Factor, 1993;
Lefley, 1997; McCubbin et al., 1996). Given the variety of symptoms of autism spectrum
disorders, there is no single strategy that can be applied to all children, which, in turn
highlights the importance of providing adequate social support to caregivers of children
with autism. In his qualitative study, Gray (1994) reports the most common strategy that
parents employ for coping with children with autism is to rely on services provide by
various agencies. Along these lines, Chan and Sigafoos (2001) review studies of the
effects of utilizing respite care on parental stress indicating respite care significantly
improves mother’s coping skills and reduces mother’s stress resulting in general
improvement on quality of life. Heller and Factor (1991) found that caregivers reporting
low social support and a high number of unmet service needs (i.e., formal supports) were
more likely to perceive higher caregiving burden. Support groups are particularly
effective in assisting families of children with disability against stress and depressive
symptoms because the members of the groups “understand the pain, know the system, are
aware of resources, and are educated about the condition” (Greenberg et al., 1997; Lefley,
1997; Shu & Lung, 2005). The support and education offered by these groups may
provide family caregivers a new perspective on their caregiving experience since they

feel they are on the same boat. Thus, participating in a social support can reduce social

35

isolation, learn advocacy skills, become more confident in caregiving, and serve as an
important source of enhancing caregiver’s adaptive coping. Professional advice on
managing difficult behaviors is vital for parents of children with autism. Parents wish to
be kept informed and consulted about their child’s treatment (Shields, 2001; Tonge et al.,
2006) when dealing with day-to-day challenges. However, the utilization and
accessibility of community resources and the social support systems outside the
caregiver’s home are identified as the greatest unmet needs among parents of children
with intellectual disability (Lewellyn, McConnell, & Bye, 1998). It is plausible that
family resources both the social and spiritual aspect of religious participation are
positively related to buffer the effects on the parent’s stress level.
Religious Coping

Coping and stress have received widespread attention in the recent years both in the
psychology literature and in the media. Religious coping involves the extent to which
people turn to matters of religion or spirituality to cope with stressful life events (Koenig,
McCullough, & Larson, 2001; Pargament, Ensing, Falgout, Olsoen, Reilly, & Haitsma,
1990; Pargament, Smith, Koenig, & Perez, 1998). It is noted that religiosity as a system
of beliefs and practices may include internal and external forms of religious activity, such
as prayer or attendance at religious services (Koenig et al., 2001). The individual thus
fosters closeness to the sacred and makes meaning out of it through attending the
religious practices. Hence, researchers (Gilidden, Kiphart, Willoughby, & Bush, 1993;
Rogers-Dulan, 1998) suggest that religion/spirituality appears to be associated with
caregiving appraisals, in other words, religion/spirituality may serve as a resource in the

live of caregivers. Moreover, researchers have documented a positive association

36

between strength of religious beliefs and informal caregiver’s well-being (Burgener, 1994;
Rabins, Fitting, Eastham, & Fetting, 1990). In a study of mother-child relations, Pearce
and Axinn (1998) found a positive association between mother’s reports that religion was
important to them and the quality of the mother-child relationships. A large body of
literature on coping indicates that religious coping plays a critical role in buffering human
relationships that are inevitably strained by the everyday caregiving realities and
disfranchised by the family obligation (Chang, Noonan, & Tennstedt, 1998; Kaye &
Robbinson, 1994; Miltiades & Pruchno, 2002; Salts, Denham, & Smith, 1991).
Previous study (Gray, 1994) also confirms that religion and participating in religion
organizations are the most important coping strategies for parents of children with autism.

Religion can contribute to the coping process through facilitation and adaptation and
be a product of the coping process leading to both positive and negative outcomes.
Positive religious coping is likely to link to positive outcomes because it involves a sense
of spirituality, a trust relationship with god, a belief that life holds meaning, and a sense
of connectedness with others. People with proactive or positive coping style see risks,
demands, and opportunities in the far future, but they do not appraise these as threats,
harm, or loss. In the similar vein, Greenglass et al., (1999b) argue that proactive coping
behavior can uplift the subject from fully-occupied by the current situations toward
purposeful future orientation. They will make efforts to build up general resources that
facilitate the achievement of challenging goals and promote personal growth. On the
contrary, negative religious coping represents a less trusting relationship with god, a
tenuous or threatening view of the world, and a religious or spiritual struggle in the

search for meaning; as a result the individual will experience negative outcomes

37

(Pargament et al., 1998). Researchers examine the relation between religiosity and shame
and guilt conclude that religious subjects “were more prone to guilt and reported higher
feelings of empathy, which could be party due to their higher levels of guilt” (Luyten et
al., 1998). In echo with the above finding, one study shows that mothers of children with
autism tend to use self-blame as a coping strategy which imposes a negative effect on
caregivers’ psychological well-being (Randall & Parker, 1999).

Religion is an integral part of Taiwanese culture. There is a saying, “There are gods
watching you”. Fearing the gods in heaven is always emphasized in Taiwanese culture.
Thus, a pervasively adopted Chinese folk belief, yin-guo (cause and effect), predominates
in the majority of Taiwanese people. Not surprisingly, self-blame as a commonly adopted
coping behavior by Taiwanese mothers can be attributed to negative religious coping.
Adopting yin-guo as a practical coping mechanism to appraise caregiving burden can
exert ambivalent effects on caregiver’s quality of life. Hsu & Shyu (2003) report that
Taiwanese caregivers would like to perceive heaw family caregiving as a kind of effect
(to repay the caregiver’s debt to the receiver) or a kind of cause (to accumulate blessings
thereafter). Thus, Taiwanese caregivers are likely to desensitize the overwhelming
caregiving tasks to the extent of impacting their willingness to seek support or to being
aware of their own well-beings.

According to the above literature review, there is a great heterogeneity in the
subjective experiences of caregivers and that the role is not appraised uniformly. Some
parents cope extremely well with this challenge and are able to maintain a sense of
personal well-being. Other parents perceive the caregiving as a burden that may

undermine their quality of life. It is worthwhile to study the variance of perceptions of

38

what constitutes quality of life among Taiwanese caregivers of children with autism by
examining the effect of family stressors (i.e., parental stress, severity of the child, and
social stigma) and family coping resources (i.e., religious coping, formal and informal

social support).

39

CHAPTER 3

RESEARCH DESIGN and METHODS

This chapter presents research design and methods consisting of five sections.
First, the sample information is provided. Second, the research design for investigating
research questions including a rationale for choosing a mixed research design, followed
by information regarding the instruments. The fourth section presents the data collection

procedures. Finally, in the fifth section, the plan for the data is provided.

Sample

The sample for this study was selected from parents of elementary school age
children with autism in Taiwan. Three hundred and forty five primary caregivers of
children with autism participated in this study. The investigator contacted the Autism
Society of Taiwan to get its branches (i.e., autism associations all over the different cities
in Taiwan), as well as the Department of Education to identify the population. The
returning rate was 37.8%. Of the caregivers who returned the questionnaires, 56 copies
were not qualified in the study because their children were either in the kindergarten or in

middle school.

Research Design for the Present Study
This study investigated factors associated to the quality of life among caregivers of
children with autism and the relationship with proposed mediator-caregiving appraisal.

The study was a cross-sectional and correlational design. Quantitative method gave a

40

broad, generalizable set of findings by obtaining responses from many people at one time.
For example, in this study, the main purpose of the survey was to investigate caregivers’
satisfaction regarding quality of life and to identify factors that influenced their quality of
life. And the survey was geared at examining how well the caregivers perceived their
quality of life in terms of physical health, psychological health, social relationships and
environment. The units of analysis in this study were the caregivers of elementary school

children with autism.

Instrumentations

There were five sets of instruments used in this study. They included: 1. The
WHOQOL-BREF Taiwan version (Yao et al., 2002). 2. Family Stressors: Family Impact
Questionnaires (Donenberg, G & Baker, 1993), Scales of Independent Behavior-Revised
(Bruininks et al., 1996) and Social Stigma. 3. Family Coping Resources Questionnaires:
Formal Social Support, lnforrnal Social Support and Religious Coping (Pargament et al.,
1990). 4. Caregiving Appraisal: positive appraisal and negative appraisal, and 5.
Demographic information questionnaire. Copies of the instruments are provided in

Appendix I.

1. WHOQOL-BREF Taiwan version

The 26—item WHOQOL-BREF has been recognized as a sound cross-culturally valid
assessment of QOL. There are two additional appropriate culture-related items (face love
and food satisfaction) were added by Taiwanese scholars (Yao et al., 2002). This

WHOQOL-BREF Taiwan version has been utilized to measure quality of life in various

4]

population groups including primary caregivers of adults with intellectual disabilities,
elderly caregivers of grandchildren and victims of earthquake disaster as well as general
healthy population (Yao et al., 2004). For the present study, the investigator added 6
questions from the original long version of WHOQOL to the survey. Parents’ quality of
life will be examined through this set of questions which contains four domains: physical,
psychological, social relationships, and environmental aspects. Parents (primary)
caregivers were asked how he/she felt about his/her quality of life over last two weeks on
a 5-point Likert scale format (i.e., Very dissatisfied/poor/disagree =1, Dissatisfied/poor
/disagree=2, Neither dissatisfied/poor/disagree nor satisfied/good/agree=3, Satisfied/good
/agree=4, and Very satisfied/good/agree=5). Sample statements are: “In general, how
would you evaluate your quality of life?” “Are you satisfied with your personal
relationships? Do you feel your life has meaning?

Do you feel respected/face saved by others? Are you satisfied with your living
conditions?” Higher scores indicate that parents perceived their quality of life is good;
lower scores indicate a poor quality of life which parents experience.

2. Family Stressors

 

Family stressors were measured by a combination of parenting stress (the impact of
autistic child on the caregivers), the severity of child’s behavioral problems, and social

stigma.

Parental Stress

 

Parenting stress was measured by Family Impact Questionnaire (F IQ) (Donenberg &
Baker, 1993). The F IQ is a 48-item Likert-type questionnaire on which parents indicate

the impact that behaviors by a specific child have on them and their family in terms of

42

different areas of family functioning. Two general questions subscales were excluded.
The rest of questions asked parents to respond on the following subscales with the titles:
(1)“ Your feelings and attitudes about your child (items 1-15 items)” , (2) “The impact of
child on your social life” (items 16-25), (3) “The financial impact of your child” (items
26-32), These items were evaluated on a 5-point scale: Not at all=0, Somewhat =1,
Medium = 2, Somewhat much =3, and very much=4. Parents/caregivers were asked
to record the ntunber of the response choice that best described their situation in terms of
how things have been in general for them with reference to their child. Higher scores
indicate greater levels of the dimension being assessed.

Severity of Child ’3 Behavioral Problems

 

The 8-item of severity of child’s autism behavior was adapted from Bruininks et al.’s
scale (1996) to assess the degree of severity of the child’s autism behaviors. Parents/
Caregivers responded to the following behaviors: hurtful to self, hurtful to others,
destructive to property, disruptive behavior, unusual or repetitive habits, socially
offensive behavior, withdrawal or inattentive behavior, and uncooperative behaviors.
Sample statements were: Does (child’s name) injure his/her own body---for example,
by hitting self, banging head, scratching, cutting or puncturing, biting , rubbing skin,
pulling out hair, picking on skin, biting nail, or pinching self? The scale employs a
5-point Likert-type response format (i.e., Not serious, not a problem = 0, Slightly serious,
a mild problem= 1, Moderate serious, moderate problem= 2, Very serious, a severe
problem =3, Extremely serious, a critical problem = 4 ) . A total score was computed
and a higher score indicates higher degree of severity of the child’s behaviors.

Social Stigma The 12-item self-report questionnaire was used to assess parental

 

43

beliefs about discrimination against their children with disabilities, experience of
rejection/stigma. The questionnaire was modified from the Devaluation-Discrimination
Scale (Link et al., 1991) with two additional questions relevant in a Chinese society.
The following instruction was given before the 12 statements: Please read the statements
listed below and for each statement please indicate to what extent each of the following
you think best fits your perceptions. Please use the following scale to record your
answers: Strong disagree = 1, Disagree =2, Neither disagree nor agree = 3, Agree = 4,
Strongly agree = 5. Higher scores indicate a stronger sense of discrimination toward
their children that parents/ caregivers believe existing in the society .
3. Family Coping Resources Questionnaires

Family coping resources construct was measured by the combination of formal
social support, informal social support, and religious coping mechanism. The investigator
created social support quantitative questionnaire based on a careful literature review on
the effect of social support on the families of children with special needs including autism.
To distinguish the impact of social support which parents/caregivers generally possess or
employ, this questionnaire was divided into two parts: informal social support and formal
social support.

Informal and Formal Social support

The 10-item informal social support scale consists of three support factors can be
found to exist in one’s immediate environment. Three support factors are: family
members (i.e., spouse, well sibling, and grandparents), neighbors, and friends or
colleague. Another 5-item formal social support scale also consists of three factors (i.e.,

professionals, formal services, and social organizations). Parents were asked to indicate

44

what kind of supports they receive to help them deal with their child and the degree of
helpfulness regarding a specific type of support on 6-point Likert scale responses. The
responses range from not available (0) to extremely helpful (5). A total score was created
by computing the mean of the ten items. Higher scores indicate that parents/caregivers
perceive larger amount of informal social support they possess.

Religious Coping

Religious coping was adopted from the Religious Coping Activities (Pargament et
al., 1990) which investigated the extent to which people turn to cope with stressful life
events. Given the majority population believe in Buddhism, three items of this scale were
purged because they exclusively deal with Christian tradition. The Spirituality Based
Coping (trusting god for protection and turn in to him for guidance) consists of 10 items
were used to examine the caregiver’s religious coping mechanism. In the present study,
participants responded to items in terms of the degree to which they employed in the
coping pr00ess of having a child with autism. Each item was rated on a 5-point
Likert-like scale ranging from not at all (1) to a great deal (5). The investigator added
four items related to Taiwanese folk believes to depict the uniqueness of Taiwanese
caregiver’s religious coping mechanism. For example, “Burned offering/incense to
ancestors to protect me from suffering”. Higher scores indicate that parents/caregivers
employed larger amount of religious coping resources.

4. CaregivingAppraisals

 

Caregiving appraisals was adapted from Lawton et al (2000), which talks about
some feelings the caregivers might be having in caring for the child. The investigator

modified some items related to Chinese culture and developed additional 8 items to

45

describe the indifferent or alienated feeling which parents/caregivers might hold toward
the child with autism. This scale was divided into two aspects: positive caregiving
appraisal, and negative caregiving appraisal. Sample questions were: "I found that taking
care of my child gives a new meaning to my life”. “I feel that my social life has suffered
as a result of caring for my child". The participants were asked to indicate how they feel
on a 5-point Likert scale format (i.e.,Strongly disagree =1, Disagree = 2, Neither disagree
nor agree =3, Agree a little =4, Strongly agree = 5). Individual subscale score was
computed by adding the items of that specific aspect. Higher scores reflect that
parents/caregivers feelings toward caregiving issues in terms of the specific aspect.

5. Demographic Information Questionnaire

The participants were asked to provide information regarding their age, sex, child’s
autism type, child’s birth order, child’s sex, child’s age, total family members living
together, participant’s educational level, marital status, partner’s educational level,

employment status, monthly family income, and affiliation of religion.

Instruments Translation
To achieve semantic and conceptual equivalence, except the established Chinese
version of quality of life, all measurements were translated into Chinese using the
independent forward and back-translation approach (Brislin, 1970), by which a bilingual
researcher translated the scales into Chinese, with another independent bilingual
researcher (the investigator) translating the Chinese back into English. The two versions
were then checked for consistency and all discrepancies were discussed and reconciled by

two translators, who are all bilingual in Chinese and English. More information on the

46

instruments will be discussed in the next section.

Data Collection Procedure

The unit of analysis is the primary caregivers (mothers or fathers) with elementary
school children with autism. The investigator collected the data from March-02 to
April-28 in 2008. Prior to data collection, a description of this study and the data
collection instruments were reviewed by the Institute of Research Board. In Taiwan,
children with autism must first be assessed and diagnosed by clinical psychologist or
physician in order to receive services in the community. As the characteristics of special
needs population entail low participation in research, the participants’ information was
obtained through two methods. One method was from the local department of education
in the local government to get which elementary school provides services to children with
autism then the investigator asked special education teachers’ willingness to distribute
surveys to their students. The other method was from local autism chapters or from local
autism foundations, I asked them to help me send out the surveys to their members. A
self-administrated questionnaire, a consent form and a stamped addressed envelop were
distributed by mail. The primary caregivers (mothers or fathers) were given the following
written measures: a demographic information questionnaires and instruments created to
measure parents’ quality of life, family stressors, family coping resources including
formal social support, informal social support, and religious coping and caregiving
appraisals. Two data sources were collected. One of the data sources was written-survey
responses from parents/caregivers that were analyzed quantitatively. The other one data

sources were the writing statements from three open-ended questions. The consent form

47

informed the parents about the purpose of the study, and provides information regarding
parents’ rights as participants. A copy of consent letter is provided in the Appendix II.

Given the low returning rate among the studies of special needs population, the
investigator went to five cities to give a speech which addressed the important issues
about raising a child with autism. The five cities are Taipei, Hsin-Chu, Taichung,
Kaohsiung, and Yilang; they literally represent the whole Taiwan Island. Through this
effort, the investigator was able to collect sufficient data for this study.

Data Analysis

Quantitative Analyses

 

Survey data were analyzed in five steps. First, reliability analyses including
Cronbach alpha and inter-subscale correlations were conducted to test the internal
reliability of each measure. The investigator created new measures by adding items or
adapted measures from various resources.

The second step involved computing descriptive statistics by using the Statistical
Package of the Social Science (SPSS) version 15.1 to determine the distributional
characteristics of each variable including the mean, standard deviation, skewness, and
kurtosis. This enabled the investigator to get detailed information about the sample, such
as to learn general facts about the predictor variables, as well as to identify the overall
quality of life among the participants.

In addition, zero-order correlations among variables were examined. Zero-order
correlations were calculated to determine the extent of associations among predictor
variables (ie. family stressors, family coping resources, and caregiving appraisal), and the

outcome variable (parents’ quality of life).

48

Next, after these statistics were examined and the variables were organized into
constructs, a multiple regression analysis was run for two purposes: (I) to examine which
of the predictor variables were related to quality of life of parents of children with autism,
(2) to determine which of the unrelated predictor variables should be deleted from the
path analysis. Finally, path analysis was used to analyze the relationships among
variables and to determine which of the predictor variables have a direct or indirect effect
on the parents’/caregivers quality of life: physical, psychological, social and
environmental aspects.

This study also investigated the effects of the proposed mediator (caregiving
appraisal) and moderator (family coping resources) on the quality of life. Therefore,
mediation testing and moderation testing were conducted to assess the effects of mediator
and moderator.

Testing mediation

 

Specifically, the investigator adopted Judd and Kenny’s (1981) approach to assess
the mediation of caregiving appraisal on the outcome variables (i.e., four dimensions of
quality of life). This approach involved the use of three regressions to assess the
relations of predictors, mediators, and outcomes. In the first step, the investigator
examined the relationships among predictors (i.e., parental stress, severity of the child,
and social stigma) to each dimension of caregivers’ quality of life. In the second step,
the investigator examined the relations between predictors and mediating variables
(positive caregiving appraisal and negative caregiving appraisal). In the final step. the
investigator regressed the four dimensions of quality of life to both the predictors and

mediators. If the resulting association between predictors and outcome equals 0.00 after

49

including the mediator, then full mediation is found. Partial mediation is determined
when adding the mediating variable results in a reduction in the association between the
predictors and the outcomes.
Testing moderation

Based on the literature review, religious coping, informal and formal social support
were treated as a moderator in this model, thus, the investigator examined if the proposed
variables moderated the effects of predictors (i.e., parental stress, severity of the child,
and social stigma). The following 9 interaction terms were created for the analyses:
parental stress interacts with religious coping, severity of child behvaior,interacts with
religious coping, social stigma ineracts with religious coping, parental stress interacts
with informal social support, severity of child behavior interacts with, informal social
support, social stigma interacts with informal social support, parental stress, interacts
with formal social support, severity of child,behavior interacts with formal social support,
social stigma interacts with formal social support.

The following chart summarized the data analyses used in the study:

 

Research questions (Q) or Hypotheses (H) Method used

 

Testing the internal consistency of the Reliability analyses

measures used in the study

 

 

 

 

Q2, and H1 Descriptive statistics
Q1 and Q6 Correlation

Q3, Q4, Q5 Multiple regression
H2 and H3 Path analysis

 

 

 

50

Chapter 4

RESULTS of DATA ANALYSIS

In this chapter, the results of the data are reported. First, the reliability analyses of
the instruments are described. Then, characteristics of the sample and the descriptive data
are reported, followed by the bivariate analyses. Next the results from preliminary
regression analyses are reported. Finally, a path analysis for each aspect of caregiving

appraisal on parents’/caregivers’ quality of life assessed in this study is presented.

Reliability Analyses

The internal consistency of the measures was computed using Cronbach’s Alpha.
The following criteria were used to determine whether or not an item should be retained
or deleted from a scale. If the alpha was larger than .7 and there was no specific item that
had an extremely low corrected item—total correlation, then all items were kept in the
measure. If the alpha coefficient were less than.7, the investigator examined what the
alpha would be if a specific item was deleted from the scale; if that specific item lowed
the alpha, it was deleted from the scale. Using this criterion, 3 items from physical heath
and 2 items from Family Impact on Social life were deleted.

Quality of life was measured by four dimensions: physical health, psychological
health, social relationship, and environment. Family stressors were treated as a construct
which included three domains: parental stress, severity of child, and social stigma.
Parental stress was measured with feelings and attitudes toward child, impact on social
life, and financial impact. The other construct, family coping resources, included

religious coping, formal social support and informal social support. Caregiving appraisal

5]

was measured with positive caregiving appraisal and negative caregiving appraisal.

Table 1 Items Deleted from the Scales

 

 

Subscale Deleted Items
Physical Health 14, 15, 23
Family Impact on Social Life 18, 22

 

After deleting these items, most of the scales had an acceptable level of internal
consistency.

Table 2 shows the alpha coefficients for the various scales.

52

Table 2 Internal Consistency of the Scales Using Cronbach’ Alpha

 

Physical Health
Psychological Health

Social Relationship
Environment

Feelings and Attitudes toward Child
Impact on Social Life
Financial Impact

Severity of Child’s Behavior
Social Stigma

Religious Coping

Informal Social Support
Formal Social Support
Positive Caregiving Appraisal

Negative Caregiving Appraisal

.68

.83

.75

.83

.76

.92

.93

.76

.98

.95

.98

.98

.85

 

53

Demographic Characteristics of the Sample

About 82% of the respondents were female caregivers. The age of the caregivers
ranged from 28 to 57 years of age with a mean age of 41.1 years (SD=4.6). The majority
of caregivers had completed some college education, 29.2% were two-year college
graduates and 25.3% were university graduates. Ninety one percent of the caregivers
were in their first marriage. Regarding their employment status, 41% of the caregivers
reported as being homemakers, and 35.8% worked full time.

In terms of monthly family income, the majority of respondents were in the middle
class category (NTS category in Taiwan the range of NT$ 40,001-60,000 to NT$
80,001-100,000), according to Directorate-General of Budget, Accounting and Statistics,
Executive Yuan, 2007. When asked about their religion, 36.1% of the caregivers reported
that they worshiped their ancestors only, 17.4% were Buddhists, 13.2 % were Christians,
and 13.5% had no particular religion. Household size varied, with 46% of the homes
having four members and 18.8% of the respondents reporting five family members.

The age of children with autism in this study ranged from 6-14 years of age with a
mean age of 9.8 years (SD =2.1). The children in this study were predominantly male

(85.6 %). As for the birth order, the majority of them were first born.

54

Table 3 Descriptive Statistics of Demographic Variables

 

N=270 Mean/percentage
Sex of Caregivers

Male 41 15.1 %
Female 221 81.5 %
Age of Caregivers 260 41.1
Sex of Child

Male 23] 85.6 %
Female 39 14.4 %
Age of Child 270 9.8
Child Birth Order

First Born 137 - 50.7 %
Second Born 107 38.9 %
Third Born 18 6.3 %
Fourth Born 3 1.0 %
Others 2 0.7 %
Educational Level of Caregivers

Primary School 4 1.7 %
Middle School 13 4.5 %
High School 79 29.5 %
Two-Year College Graduate 78 29.2 %
University Graduates 70 25.3 %
Graduate School and Above 23 8.0 %
Marital Status

Married 251 91.0 %
Separated, Divorced or Widowed 11 5.2 %
Remarried l 0.3 %
Single 3 1.0 %
In a Committed, Live-in Relationship 2 1.0 %
Employment Status

Homemaker 112 41.0 %
Part-Time Employee (1-20 hours per week) 36 13.2 %
Part-Time Employee (21-30 hours per week) 19 6.9 %
Full Time Employee (240 hours per week) 97 35.8 %
Monthly Family Income

NT$ 20,000 and under 14 5.2 %
NT$ 20,001 — 40.000 47 17.3 %

55

SD

4.55

2.14

Table 3 Continued

 

NT$ 40, 001 — 60,000 68 25.1 %
NT$ 60,001 — 80,000 51 18.8 %
NT$ 80,001 - 100,000 35 12.9 %
NT$ 100,001 — 120,000 21 7.7 %
NT$ 120,001- 140,000 5 1.8 %
NT$ 140,001 and above 16 5.9 %
Total Family Members

2 persons 3 1.7 %
3 persons 37 13.9 %
4 persons 125 45.8 %
5 persons 51 18.8 %
6 persons 32 11.1 %
7 persons 10 3.5 %
8 persons 2 0.7 %
9 persons 2 0.7 %
Religious Background _
Buddhism 47 17.4%
Taoism 26 9.0%
Yi- Kwan Tao 2 1.0%
Christianity 38 13.2%
Folk Beliefs 2 2.8%
No Particular Religiosity but Worship Ancestors 99 36.1%
No Religious Belief 7 13.5%

 

*NT : New Taiwan Dollars

O 1 US dollars = 33Taiwanese dollars

56

Descriptive Statistics for the Concepts

The following concepts were examined: (1) the four dimensions of Quality of Life,
(2) parental stress, (3) the severity of the child, (4) social stigma, (5) religious coping, (6)
informal social support, (7) formal social support, and (8) caregiving appraisal.

To better represent the population, efforts were made to include as many cases in the
analyses as possible. Therefore, for each scale, a subject would be included in the
analysis as long as more than half of the questions in that scale were answered (Little and
Rubbin, 1987). For each participant, the mean of the items that they responded to for each
scale was used as the total score for that measure. Using this criterion, the investigator
was able to include 270 cases in the analyses. A summary of the descriptive statistics can

be found in Table 4.

57

 

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58

Note: The range for each concept is 1-5, except the range for * informal and formal social
support is 1-6
Each variable is described in greater detail in the following section
Predictor Variables
Family Stressors

Family stressors existing among caregivers of children with autism were divided
into severity of child’s problematic behaviors and parental stress resulting from the
feelings towards child, impact on family social life and family finance. The correlation
among feelings towards child, impact on family social life and family finance were r= .55.
p< .01 (N=270), and r =.24, p<.01 (N=270) respectively; and the correlation between the
impact on family social life and family finance was moderate (r =.40, p<.01, N=270).
These measures constituted the family stressor construct.
Parental Stress

Parental stress was measured by three dimensions: feelings toward child, impact on
social life, and financial impact. With regard to parental feelings toward child, caregivers
had a mean score of 2.89. On the social impact measures, caregivers had a mean score of
2.39 on a 5-point scale indicating that caregivers, on average agreed that their child had
impacted their social life in a moderate way. Among the items assessed, the item with the
highest mean score was “I feel tenser when my family goes out in public because I am
worried about his/her behaviors.” (mean=2.87) and the item with the second highest
mean score was “I participate less in community activities because of my child’s
behaviors” (mean=2.62). The third highest mean score was “My child interferes more

with my opportunity to spend time with friends” (mean = 2.57). Another noteworthy

59

score was the mean for “My child’s behavior embarrasses me in public more (mean =
2.35). From the perspective of Chinese culture, this would be a source of stress regarding
“face”. I will discuss this more in-depth in the next chapter.

With regard to the family financial impact, caregivers had a mean score of 2.79 on a
5-point scale indicating that rearing a child with autism did impact on the family finance
to some degree. Among the items assessed, the item with the highest mean score was
“The cost of raising my child is more” (mean = 3.23). The second highest mean score
was “The cost of educational and psychological services is more” (mean = 3.02). It is
noteworthy that the lowest mean score was “The cost of home alternations and/or fixing
and replacing items in the home is more” (mean = 2.33).

Severity of Child Behavioral Problems

Among the severity of child’s problematic behavior measures, caregivers had a
mean score of 2.02 on a five-point scale (possible range was 1-5) indicating that
caregivers agreed that child behavior is a mild to moderate problem assessed in this study
to some degree. Among the items assessed, caregivers reported that withdrawal or
attentive behavior (mean = 2.71), unusual or repetitive behavior (mean = 2.47), social
offensive behavior (mean = 2.15), and disruptive behavior (mean = 2.02) are the most
salient problems in this sample.

Social Stigma

There were 12 items in total used to measure social stigma. Caregivers had a mean
score of 2.86 on a 5-point scale, indicating that, to some degree, caregivers perceived
medium social stigma from the environment towards their children with autism. Among

the items assessed, the highest mean score was 3.27 which characterized the following

60

two items “Most people think less of a person who has autism” and “Most people do not
blame the parents for the autism of their children”. The item with second highest mean
score was “Most people look down on someone who has autism” (mean = 3.22). When
comparing autism with physical illness, “Most people feel that having autism is worse
than having physical disability or chronic illness” (mean = 2.73). Caregivers perceived
having a child with autism is mildly worse than having physical disability or chronic
illness.

Family Coping Resources

The concept of family coping resources was divided into three subscales-religious
coping, informal and formal social support. On the religious coping measures, caregivers
had a mean score of 2.60 on the 5-point scale indicating that, to some degree, caregivers
employ religious based coping skills quite a bit. Among the items assessed, the highest
mean score was “Realizing that God was trying to strengthen me” (mean = 3.14).

“Took control over what I could and gave the rest to God” (mean = 3.09) was the second
highest score. “My faith showed me different ways to handle the problem” (mean = 2.87)
and “Found the lesson from God in the event” (mean= 2.87) were other statements that
caregivers indicated as religious coping mechanisms.

The perception of helpfulness of informal social support had a mean score of 3.38
on a 6-point scale. Among the items assessed, “spouse/ partner” (mean =4.65) and
“non-disabled sibling” (mean = 4.40) stood out as very helpful whenever the caregivers
were in need. Followed by “parent support groups” (mean = 3.52) and “relatives or other
extended family members” (mean =3.44). However, “help from friends” cannot be

ignored, the mean score was 3.29.

61

The mean score for the perception of helpfulness of formal social support received
by the caregivers was 4.62 on a 6-point scale indicating that the Taiwanese caregivers’
perception of formal social support was more toward the positive end. Among the items
assessed, “children’s school teacher/ therapist” had the highest mean score (5.01 ).
“child care provider” (mean = 4.79) and “Child Individualized Education Program”
( mean = 4.74) were perceived moderately helpful.

Caregiving Appraisal

Caregiving appraisal refers to the degree to which caregivers evaluate their feelings
pertaining to caregiving issues. This variable was divided into two subscales-positive and
negative caregiving appraisals. Caregivers had a mean score of 3.71 on a 5-point scale of
positive caregiving appraisal indicating that, on average caregivers agreed the
experiences of taking care of a child with autism were positive. Among the items
assessed, the highest mean score was “Because of taking care my child, I have become
more empathic with parents of child with disability” (mean = 4.48). The second highest
mean score “Taking care of my child has made me feel closer to my child” (mean = 4.03).
Another noteworthy statement was “I found that taking care of my child gives a new
meaning to my life” (mean = 3.90).

On the concept of negative caregiving appraisal, caregivers had a mean score of 2.77
on a 5-point scale indicating that parents neither agree nor disagree with that the
caregiving process was negative. Among the items assessed, the highest mean score was
“I do not have enough time for myself because of taking care of my child” (mean = 3.34).
Similar appraisal about prioritizing time allocation, the second highest mean score was “I

don’t have enough time for other family members (e.g., spouse, other child(ren)) because

62

of taking care of my child with autism” (mean = 3.18). A valuable statement pertaining to
this study was “Taking care of my child is the way to repay what I owed him/her in the

previous life” (mean = 2.40).

Outcome Variables

Quality of Life of caregivers was measured by four aspects: physical health,
psychological health, social relationship, and environment. Due to the low reliability of
physical health subscale, three items were deleted from the original subscale; leaving four
items measuring caregivers’ physical health. Caregivers had a mean score of 3.24 on a
5-point scale indicating that the Taiwanese caregivers are moderately satisfied with their
physical health. Sixty eight percent of the caregivers reported they were satisfied with
their health (mean = 3.42). The mean score for “How satisfied are you with the sleep?”
was 2.84, indicating that they were neither dissatisfied nor satisfied with the sleep they

had gotten. [Notez “health” in Chinese is generally perceived as physical health]

On the concept of psychological health, caregivers had a mean score of 3.31
indicating that caregivers were, on average, satisfied with their psychological health.
Among the items measured, the highest score was “Do your personal beliefs give
meaning to your life?” (mean = 3.60). The second highest score was “Do you feel your
life has any meaning? (mean= 3.59). The third highest score was “Can you accept your
appearance?” (mean= 3.55). The lowest mean score was “Do you often have negative
feelings (for examples, depression, despondency, anxiety, anguish)?” (mean= 2.85)
indicating that the Taiwanese caregivers had experienced negative feelings to some

degree.

63

There were six items used to measure caregivers’ social relationship. Caregivers had
a mean score of 3.27 indicating that caregivers, on average, were satisfied with their
social relationship. Among the items assessed, the highest score was “Are you satisfied
with the support you get from your friends?” (mean = 3.47). “Are you satisfied with your
personal relationships?” (mean= 3.37) and “ Are you satisfied with the support you get
from your family members?” (mean= 3.37) were similarly assessed (second highest).
The lowest score was “Do you feel respected/face saved by others?” (mean= 2.67)
indicating that caregivers didn’t feel respected or face saved by others to some degree.

Environment relationship was assessed by 9 items. The mean score was 3.32,
indicating that caregivers in Taiwan were moderately satisfied with their environment.
There were two highest scores: “Are you satisfied with the transportation you use?”
(mean = 3.57) and “Are you usually able to get the food you like to eat?” (mean = 3.57) .
The second highest was “Is it convenient for you to get the daily information you need?”
(mean=3.51). The third highest score was “Are you satisfied with your living conditions?
(mean = 3.36). The lowest score was “Do you have enough money for whatever you
need?”

Correlations among Variables

Spearrnan’s correlation matrices were created to determine the relationships among
the predictor variables (Table 5), and among the outcome variables (Table 6); the
relationships between the demographic variables and the predictor variables (Table 7); the
relationships between the demographic variables and the outcome variables (Table 8);
and the relationship between the predictors and the outcome variables (Table 9). In order

to obtain statistic significance, Cohen’s (1988) interpretation of the magnitude of a

64

correlation was used. A correlation greater than .5 was considered large; a correlation
that ranges from .3 to .5 was considered moderate and; .1 to .3 was considered small.
Most correlations among variables in this study were small to moderate in
magnitude. However, the following correlations were considered large: the correlations
between psychological health and environment (r =.67, p< 0.01), the correlations between
quality of social relationship and environment (r =.57, p<.01), the correlations between
parental stress and positive caregiving appraisal (r = -.60, p<.01), the correlation between
parental stress and negative caregiving appraisal (r =.67, p < 0.01), and the correlation

between positive and negative caregiving appraisal (r = -.51, p<.01).

65

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Table 8 Correlation Matrix between Demographic Background Variables and
Outcome Variables

 

 

Physical Health Psychological Social Environment
Health Relationship

Age -.04 .02 .16** -.01
Educational -.06 .03 -.02 .15*
Level
Marital .07 .03 -08 -.04
Status
Employment .13* .16** .13* .l6**
Status
Family .01 .18** .25** .37**
Income

 

Correlation is significant at the .05 Ievel*(two-tailed); at the 0.01 Ievel** (two-tailed)

69

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Correlations among the Predictor Variables

Among the predictor variables, two correlations were considered having large
magnitude. Respondent caregivers who perceived greater level of parental stress also
perceived lower level of positive caregiving appraisal experience (r = -.60, p<.01) and
higher level of negative caregiving appraisal experience (r =. 67, p<.01)). Moreover,
parental stress showed positive and moderately significant correlations with severity of
the child’s behavioral problems (r =.43, p<.01)) and social stigma (r =.42, p<.01). In other
words, caregivers who had a child with more severe behavioral problems, perceived
higher level of social stigma, and appraised more negative feelings toward their
caregiving reported greater level of parental stress. However, parental stress was
negatively and significantly related to informal social support (r = -.17, p<.01), and
formal social support (r = -.20, p<.01). More informal and formal social supports were
associated with lower level of parental stress.

Respondent caregivers who had a child with more severe behavioral problems not
only perceived greater level of social stigma (r =. 42, p<.01) but also were more likely to
appraise the caregiving as negative (r =.35, p<.01). In addition, there were small negative
correlations among severity of the child behavioral problems and positive caregiving
appraisal (r = -.19, p<.01) in a significant way.

Caregivers who perceived greater level of social stigma tended to appraise less
positive caregiving experience (r = -.37, p<.01) and more negative caregiving experience
(r =. 46, p<.01). There was also a small and negative correlation between social stigma
and informal social support (r = -.12, p<.05).

In terms of religious coping, two small and positive correlations were significantly

71

found among informal social support and (r =.16, p<.01) and positive caregiving
appraisal (r =.16, p<.01). No significant correlations were found among religious coping
and other the predictor variables. Caregivers who perceived greater helpfulness of
informal social support also reported greater helpfulness of formal social support (r =. 48,
p<.01) and were more likely to report positive caregiving appraisal (r =.34, p<.01).
There was a significant negative correlation between informal social support and negative
caregiving appraisal (r = -.19, p<.01). Those caregivers with greater helpfulness of formal
social support tended to report more positive caregiving appraisal (r =. 39, p<.01).
There were significant small and negative correlations between formal social support and
negative caregiving appraisal (r = -.12, p<.05). Not surprisingly, positive caregiving
appraisal was significantly found to be largely correlated with negative caregiving
appraisal (r = -.51, p<.01). It showed the more positive caregiving the caregivers
appraised, the less negative caregiving feelings they experienced.
Correlations among Outcome Variables

All the outcome variables were correlated with each other. The Taiwanese caregivers
reported that their physical health had significantly moderate positive relations with
psychological health (r =. 44, p<.01) and environment (r =.44, p<.01); and had
significantly small positive relationship with social relationship (r =.24, p<.01). To be
noted, respondent caregiver’s psychological health had a large positive, correlation with
social relationship (r =.56, p <01) and environment (r =.67, p <.01). Caregiver also
reported a positive and large association between their social relationship and their
environment (r =.57, p <.01) in a significant way. In other words, caregivers with better

social relationship and more satisfactory environment reported having better physical and

72

psychological health
Correlations among the Demographic Variables and Predictor Variables

Most of the significant correlations among the demographic variables and the
predictors fell with caregiver’s educational level and age. Caregiver’s education level
correlated with parental stress (r =.16, p< 0.01), social stigma (r = .15, p<.0.05), religious
coping (r =.20, p<0.01) and negative caregiving appraisal (r = .17, p<.01). Caregiver’s
age had small and negative correlations among formal social support (r = -.18, p<0.01)
and negative caregiving appraisal (r= -.l4, p<0.05). Marital status, employment status
and family income didn’t correlate with other predictors in any significant way.
Correlations among the Demographic Variables and Outcome Variables

Caregiver’s employment status had small positive correlations with all four outcome
variables: physical health (r =.13, p<.05), psychological health (r =.16, p<.01), social
relationship (r =.l3, p<.05), and environment (r =.16, p<.01). Family income had
moderate positive correlations with environment (r =.37, p<.01), and small positive
correlations among caregiver’s psychological health (r =.18, p<.01) and caregiver’s social
relationship (r =.25, p<.01). Caregiver’s age positively correlated with caregiver’s social
relationship (r =. 16, p< .01) in a small magnitude. Also, caregiver’s education level had a
small positive correlation with caregiver’s satisfaction with enviromnent (r =.15, p<.05).
However, caregiver’s marital status had no significant correlations among all the outcome
variables.
Correlations between the Predictor Variables and the Outcome Variables

In this study, parental stress, social stigma, and negative caregiving appraisal

negatively correlated with all four outcome variables from small magnitude to moderate

73

magnitude. Moreover, positive caregiving appraisal positively correlated with all four
outcome variables from small to moderate magnitude, too. Caregivers who perceived
their caregiving as greater negative experiences were more likely to be dissatisfied with
the four dimensions of their quality of life: physical health (r = -.30, p<.01),
psychological health (r = -.47, p<.01), social relationship (r = -.42, p<.01), and
environment (r = -.36, p < .01). It showed that respondent caregivers with more negative
caregiving appraisal were more likely to report being less satisfied with their quality of
life. In terms of caregiver’s positive caregiving appraisal, moderate correlations were
found between caregiver’s psychological health ((r =. 47, p<0.01) and social relationship
(r =. 36, p<.01); in addition, there were small positive correlations among caregiver’s
positive caregiving appraisal and caregiver’s physical health (r =.19, p<.01) and
caregivers satisfaction about environment ( r =. 27, p<.01).

Not surprisingly, parental stress had moderate negative correlations among
caregiver’s psychological health (r = -.46, p< .01), caregiver’s social relationship (r = -.36,
p<.01), and caregiver’s satisfaction about environment (r =. -.30, p<.01), and nearly
moderate negative correlations with caregiver’s physical health (r = -.29, p<.01).
Caregivers who perceived greater levels of informal social support had moderate positive
correlations with social relationship (r =. 37, p<.01), and small correlations among
caregiver’s physical health (r =.l6, p<.01), caregiver’s psychological health (r =.27,
p<.01) and caregiver’s satisfaction about environment (r =.20, p<.01).

Social stigma was found to have significant and negative correlations with outcome
variables: physical health (r =. -24, p<.01), psychological health (r =.-22, p<.01). social

relationship (r = -.20, p<.01) and environment (r= -.19); however the coefficients were all

74

small in the magnitude. Although severity of child behavior only had small negative
correlations with psychological health (r = -.14, p<0.01)) and environment (r = -.15,
p<0.01), it indicated that caregivers perceived the greater levels of severity of their
child’s behavior would lead to less satisfaction with their psychological health and
enviromnent. Formal social support had small positive correlations with caregiver’s
physical health (r =.14, p<.05), caregiver’s social relationship (r =.21, p<.01), and
caregiver’s social relationship (r =.19, p<.01). One surprising result was that religious
coping only slightly correlated with caregiver’s psychological health (r .14, p<.05). No
other correlations with other outcome variables were found. (This will be discussed in

detail in the next chapter).

75

Multiple Regression Analysis

Multiple regression analyses (stepwise method) were conducted to determine which
of the predictor variables were correlated to caregivers’ quality of life. All the eight
proposed predictor variables were regressed upon each outcome variable, and the results
are presented in Table 10. Parental stress and negative caregiving appraisal were
significant predictors of caregivers’ physical health. Four variables were significant
predictors of caregivers’ psychological health when other predictors were controlled:
parental stress, religious coping, positive caregiving appraisal, and negative caregiving
appraisal. Two variables were associated with caregivers’ social relationship: informal
social support and negative caregiving appraisal. In addition, informal social support and
negative caregiving appraisal were also significant predictors of caregivers’ satisfaction
with their environment. Table 10 showed that severity of child’s behavioral problem and
social stigma were unrelated to all of the four outcome variables at the 99% confidence
level. This regression analysis served as a preliminary analysis, and three variables
(severity of the child’s behavior, social stigma, and formal social support) were excluded

from the path analysis.

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Path Analysis

After examining the results of the preliminary regression analyses, the results of the
path analysis were examined. The path analysis required a series of steps. First, all the
demographic variables were entered as exogenous variables and the predictive variables
as endogenous variables. Secondly, all the predcitor variables were entered as exogenous
variables and the outcome variables were entered one at a time as endogenous. Lastly, the
outcome variables were entered one at a time as endogenous variables while all the
demographic and the predictor variables were entered as exogenous variables. Only
respondents who had valid scores for all of the variables in the analysis were included in
the path analysis. The number of cases included in the analysis was 270.

The demographic variable, marital status was dropped from the path analysis based
on the preliminary bivariate analyses showing that the correlations between the marital
status and all four outcome variables were less than .10. Predictor variables, severity of
child’s behavior, social stigma and formal social support that were unrelated to all the
four outcomes in the preliminary regression analysis were also excluded from the
analysis in order to obtain a parsimonious model.

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Table 14 Significant Path Coefficients (Standardized beta) between Family Stressors,
Family Coping Resources, and Caregiving Appraisal

 

 

Positive Caregiving Negative Caregiving
Appraisal Appraisal
Parental Stress -.52*** 55*“
Social Stigma -.12* .20***
Religious Coping .18***
Informal Social .10* -.10*
Support
Formal Social 23*”
Support

 

Correlation is significant at the .05 Ievel*(two-tailed); at the 0.001 level ***
(two-tailed)

83

Testing Moderation

Moderator: Religious Coping

The first moderator, religious coping, and its interaction terms with three predictors
were added to the regression analyses to determine if religious coping moderated parental
stress, severity of the child’s behavior, and social stigma to the extent that would affect
the four dimensions of quality of life. The overall model for psychological health with the
moderator (religious coping and parental stress) was significant (R2=.25), F (4, 266)
=22.11, p<0.001. The results showed that the interaction of religious coping and parental
stress ([3: .23, P<0.001) was significantly associated with the caregivers’ psychological
health. No significant interaction of religious coping and parental stress was found that
affected caregivers’ physical health, social relationship, and environment. The next model
for psychological health with interaction of religious coping and severity of the child’s
behavior was significant (R2 =.24), F (4, 266) =20.70, p<0.001. The results showed that
the interaction of religious coping and severity of the child’s behavior ([5: .22, P<0.05)
was significantly associated with the caregivers’ psychological health. And the model for
caregivers’ psychological health with the interaction of religious coping and social stigma
was also significant (R2 =.24), F (4,266) =21.32, p<0.001. The results showed that the
interaction of religious coping and social stigma (B: .19, P<0.001) was significantly
related to caregivers’ psychological health. In summary, the main effects of the three
predictors on the caregivers’ psychological health could be seen as reflections of the
underlying interactions.

Moderator: Informal Social Support

84

The same procedure was repeated with the second moderator- informal social
support as the first one. Informal social support interacts with parental stress as the
second interaction term was added to the analyses. The effects of moderations
significantly associated among caregivers’ psychological health, social relationship, and
environment. The overall model for psychological health with the moderator (informal
social support * parental stress) was significant (R2=.24), F (4, 266) =21.48, p<0.001.
The results showed that the interaction of informal social support and parental stress
(B: .21, P<0.001) was significantly associated with the caregivers’ psychological health.

The overall model for caregivers’ social relationship with the moderator (informal
social support *parental stress) was significant (R2 =.23), F (4, 266) =19.39, p<0.001.
The results showed that the interaction of informal social support and parental stress
(B= .36, P<0.001) was significantly associated with the caregivers’ social relationship.

The overall model for caregivers’ satisfaction towards environment with moderator
(informal social support * parental stress) was significant (R2 =.11), F (4, 266) =8.31,
p<0.001. The results showed that the interaction of informal social support and parental
stress ([3: .15, P<0.05) was significantly associated with the caregivers’ satisfaction
toward environment. Given the findings, it is noteworthy that informal social support
interacts with parental stress to the extent that impacted the main effects on caregivers’
psychological health, social relationship and satisfaction toward environment.

Then, the testing of interaction between informal social support and severity of child
was conducted to see if there was any moderation effect existed in caregivers’ quality of
life. No significant association was found between the interaction of informal social

support and severity of the child’s behavior or caregivers’ physical health. However. the

85

overall model for psychological health with moderator, informal social support * severity
of the child’s behavior, was significant (R2 =.24), F (4, 266) =20.54, p<0.001. The results
showed that the interaction of informal social support and severity of the child’s behavior
([3: .24, P<0.05) was significantly associated with the caregivers’ psychological health.
Caregivers’ social relationship with moderator (informal social support * severity of the
child’s behavior) was significant (R2 =.22), F (4, 266) =18.24, p<0.001. The results
showed that the interaction of informal social support and severity of the child’s behavior
([3: .45, P<0.001) was significantly associated with the caregivers’ social relationship.
This finding may be plausible to support why severity of the child’s behavior itself was
not a significant predictor for caregivers’ quality of life in the previous regression
analysis (Table 13). The overall model for caregivers’ satisfaction towards environment
with moderator (informal social support * severity of the child’s behavior) was significant
(R2 =.11), F (4, 266) =8.51, p<0.001. The results showed that the interaction of informal
social support and severity of the child’s behavior ([3= .22, P<0.05) was significantly
associated with the caregivers’ satisfaction towards environment.

Lastly, assessing the effects of interaction of informal social support and social
stigma on four dimensions of caregivers’ quality of life was performed. No significant
association was found between the interaction of informal social support and social
stigma or caregivers’ physical health. The overall model for psychological health with
moderator (informal social support * social stigma) was significant (R2 =.25), F (4, 266)
=21.64, p<0.001. The results showed that the interaction of informal social support and
social stigma (B: .2], P<0.05) was significantly associated with the caregivers’

psychological health.

86

With respect to the model for caregivers’ social relationship with moderator
(informal social support * social stigma) was significant (R2=.23), F (4, 266) =19.39,
p<0.001. The results showed that the interaction of informal social support and social
stigma (B: .34, P<0.001) was significantly associated with the caregivers’ social
relationship.

The overall model for caregivers’ satisfaction towards environment with moderator
(informal social support * social stigma) was significant (R2 =.12), F (4, 266) =8.62,
p<0.001. The results showed that the interaction of informal social support and social
stigma ([3= .16, P<0.05) was significantly associated with the caregivers’ satisfaction
towards environment. In brief, informal social support moderates the effects of the three
predictors on the caregivers’ psychological health, social relationship, and environment.
Moderator: Formal Social Support

The third moderator, formal social support, was examined for its interactions among
parental stress, severity of child behavior , and social stigma and the effects of the three
predictors on caregivers’ four dimensions of quality of life. The overall model for
psychological health with moderator (informal social support * parental stress) was
significant (R2=.23), F (4, 265) =19.54, p<0.001. The results showed that the interaction
of formal social support and parental stress ([3: .16, P<0.05) was significantly associated
with the caregivers’ psychological health. No significant association was found between
the interaction of formal social support and parental stress and other dimensions of
quality of life.

Examined next were the models of interaction of formal social support and severity

of child behavior problems on the caregivers’ quality of life. The overall model for

87

psychological health with moderator (formal social support * severity of the child) was
significant (R2=.23), F (4, 265) =19.28, p<0.001. The results showed that the interaction
of formal social support and severity of the child ([3= .23, P<0.05) was significantly
associated with the caregivers’ psychological health.

With respect to the model for caregivers’ social relationship with moderator (formal
social support * severity of the child) was significant (R2=.15), F (4, 266) =11.49,
p<0.001. The results showed that the interaction of formal social support and severity of
the child ([3: .22, P<0.05) was significantly associated with the caregivers’ social
relationship. However, the moderator (formal social support *severity of the child) didn’t
exert significant effect either on the caregivers’ physical health or their satisfaction
toward environment.

The last step involved the effects of interactions of formal social support and social
stigma on the four dimensions of caregivers’ quality of life. Surprisingly, only the model
for psychological health with moderator (formal social support * social stigma) was
significant (R2=.23), F (4, 265) =19.4l, p<0.001. The results showed that the interaction
of formal social support and parental stress ([3: .15, P<0.05) was significantly associated
with the caregivers’ psychological health. No significant association was found between
the interaction of formal social support and social stigma and other dimensions of quality

oflife.

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Testing Mediation

According to Baron and Kenny (1986), mediation testing involved three steps. Step 1
described two predictive stressors (i.e., parental stress and social stigma) on the outcome
variable of caregiver’s quality of life. Step 2 showed two predictive stressors on the
mediators (i.e., positive and negative caregiver’s caregiving appraisal), and Step 3
indicated two predictive stressors and the mediators on the outcome variable of
caregiver’s quality of life. For Step 1, the regression analysis for caregiver’s physical
health was significant (R2=.10), F (3, 267) =9.71, p<.001. It showed parental stress ([3:

-.26, P<0.001) and social stigma (B: -.13, P<0.05) were significantly associated with

caregivers’ physical health. Next, the regression analysis for caregiver’s psychological
health was significant (R2=.21), F (3, 267) =24.02, p<.001. It showed high level of
parental stress ([3= -.26, P<0.001) was significantly predictive of caregiver’s
psychological health. The regression analysis for caregiver’s social relationship was
significant (R2=.14), F (3, 267) =13.93, p<.001. The high level of parental stress ([3: -.36,
P<0.001) was related to caregiver’s social relationship. Lastly, the regression analysis for
caregiver’s satisfaction towards environment was significant (R2=.10), F (3, 267) =9.31,
p<.001. Not surprisingly, parental Stress (B: -.26, P<0.001) was related to caregiver’s
satisfaction towards environment.

In regards to the two predictive variables on the mediator, Step 2 showed the
regression analysis for caregiver’s positive caregiving appraisal was significant (R2=.38),

F (3, 267) =54.37, p<.001. It showed that parental stress ([3: -.57, P<0.001) and social
stigma (B= -.l4, P<0.01) were significantly associated with caregivers’ positive

caregiving appraisal. The regression analysis for caregiver’s negative caregiving

90

appraisal was significant (R2=.50), F (3, 267) =84.48, p<.001. It showed that parental
stress ([3: .55, P<0.001) was significantly predictive of caregiver’s negative caregiving
appraisal.

Step 3 conducted the adding of the mediator to predictive variables on the
caregiver’s quality of life. The regression analysis for caregiver’s physical health was
significant (R2=.12), F (5, 265) =6.87, p<.001. It showed that when parental stress ([3:

-.l8) and social stigma (B: -.09) were reduced to insignificance substantially on

caregivers’ physical health, evidence providing that full mediation was found (Baron &
Kenny, 1986). Next, the regression analysis for caregiver’s psychological health was
significant (R2=.31), F (5, 265) =23.23, p<.001. However, it showed that when parental
stress (B= -.18, P<.05) was reduced to predict caregiver’s psychological health, partial
mediation was confirmed (Baron & Kenny, 1986). For caregiver’s social relationship, the
regression analysis was significant (R2=.21), F (5, 265) =14.22, p<.001. Again, when
parental stress ([3: -.09) was reduced to insignificance relating to caregiver’s social
relationship, evidence providing full mediation was found. Lastly, the regression analysis
for caregiver’s satisfaction towards environment was significant (R2=.14), F (5. 265)
=8.64, p<.001. Not surprisingly, when parental stress ([3: -.06) was also substantially
reduced to insignificance with caregiver’s satisfaction towards environment, evidence

providing once again that full mediation was found.

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In the current study, five background variables (i.e., caregiver’s age, educational
level, marital status, employment status, and family income), six predictors (i.e., parental
stress, severity of the child, social stigma, religious coping, informal social support and,
formal social support), and two mediators (i.e., positive caregiving appraisal, and
negative caregiving appraisal) were proposed to explain the variance in quality of life.
The significant path coefficients were summarized in Tables 11, 12, and 13.

For physical health, the total variance explained by the path model (R square)
was .17 with an F value for the overall model of 3.69 (p<0.01). Caregiver’s employment
status and parental stress significantly predicted caregiver’s physical health. With
regard to psychological health, the total variance explained by the path model (R square)
was .40 with an F value for the model of 11.57 (p<.001). Family income, parental stress,
religious coping, positive caregiving appraisal, and negative caregiving appraisal
significantly predicted caregiver’s psychological health. It showed that caregivers with
higher family income, less level of parental stress, greater positive caregiving appraisal,
and less negative appraisal were more satisfied with their psychological health.

With respect to social relationship, the total variance explained by the path model (R
square) was .36 with an F value for the model of 9.73 (p<.001). Family income,
education level, informal social support, and negative caregiving appraisal significantly
predicted caregiver’s social relationship. To be more specific, caregivers who had higher
education level, higher family income, greater level of informal social support, perceived
their caregiving as less negative, and was more satisfied with their social relationship.

In terms of environment, the total variance explained by the path model (R square)

was .30 with an F value for the model of 7.61 (p<.001). Only family income and negative

93

caregiving appraisal significantly predicted satisfaction with the environment. In other
words, caregivers who had higher family income, and perceived their caregiving as less
negative were more satisfied with their environment.

In addition, the results of path analysis also showed the effects of the demographic
variables on other variables. Caregiver’s educational level had direct positive effect on
parental stress, religious coping and negative effect on negative caregiving appraisal.
Caregiver’s age had direct negative effect on formal social support; and family income
had direct negative effect on caregiver’s negative caregiving appraisal. The effect showed
caregivers who had had higher education level were more likely to report higher level of
parental stress, to employ religious coping mechanisms, and to experience greater
negative caregiving appraisal. Respondent caregivers with higher family income were
more likely to report less negative caregiving appraisal. It seemed that the older the

caregivers the less satisfied they were with the social support provided.

94

CHAPTER 5

DISCUSSION and CONCLUSIONS

This chapter is divided into three parts. The first part presents a summary and
discussion of the findings. The second part presents the limitations of this study. The third

and final part presents the implications of the findings and directions for future research.

Summary of the Findings and Discussions

In this first section, findings pertaining to the research questions are summarized and
discussed. In addition, discussion of path analysis results, the picture of Taiwanese
caregiver’s quality of life and the cultural interpretation of these results are included at
the end of this section.

Research Question 1

Are family stressors, identified by caregivers of children with autism, related to
parental caregiving appraisal and quality of life among parents of children with autism in
Taiwan?

As the results showed in Table 5 and Table 9, Taiwanese caregiver’s_quality of
life_was significantly related to higher level of parental stress and they perceived the
demands of child care as a less positive but greater negative experience, which suggested
that they might feel parenting a child with autism was a burden as well as perceiving
parenting as less rewarding. Caregivers articulated that their social lives were hindered by
taking care of their children (p.59). The outcomes were consistent with studies which
suggested that the parents of a child with disabilities experienced greater stress and would

report a negative caregiving appraisal (Able-Boone & Stevens, 1994; Gray, 1994; Norton

95

& Drew, 1994; Rodrigue et al., 1990). Parental stress also was significantly associated
with less satisfaction with the four dimensions of quality of life. This finding echoed
substantial studies which documented the associations between parental stress and
various domains of caregiver’s quality of life (Dreer & Elliott, 2007; Greenberg et al.,
1993; Hastings & Brown, 2002; Lecavalier et al., 2006; Lim & Zebrack, 2004; Pisula,
2003; Shu et al., 2002; Shu & Lung, 2005). It reflected the importance of attending to
issues that undermine the caregiver’s quality of life.

With respect to the severity of child’s behavioral problems, there were slightly
negative associations between a child’s behavioral problems and positive caregiving
appraisal. However, moderate positive associations were found between a child’s
behavioral problems and negative caregiving appraisal. The severity of the child‘s
behavioral problems slightly correlated with caregiver’s satisfaction about their
psychological health and satisfaction towards the environment. Taiwanese caregivers
reported less participating social activities due to concerns about their child’s unexpected
' behaviors in public (p.59). This result corresponded with numerous studies indicating the
severity of child behavioral problems produced subsequent parental stress and that
different perceptions of caregiving appraisal also had an impact on the carcgiver’s quality
of life (Baronet, 2003; Bishop et al., 2007; Lawton et al., 1991; Mak et al., 2007; Schieve
et al., 2007). Drawing evidence from Chapter Four, caregivers reported they experienced
much tension due to the child’s behaviors when the family was out in the public (p.60).
Given the characteristics of autism, impairments in communication and relationship are
very pervasive in children. Therefore, it is suggestive that managing a child’s behavioral

problems is detrimental to a caregiver’s psychological health as well as satisfaction with

96

their environment.

Generally speaking, social stigma shown towards a child with a disability as well as
his/her family can generate a tangible stress on parents. The results showed caregivers
who perceived greater social stigma were more likely to report a less positive caregiving
appraisal and greater negative caregiving appraisal. It is also noteworthy that caregivers
who experienced a greater level of social stigma tended to report less satisfaction with the
four aspects of caregiver’s quality of life. In addition, parents indicated that people think
less of a person who has autism and people look down at person with autism as indicated
with the two highest scores on Social Stigma measure (p.60). From this finding, it might
be plausible that Taiwanese caregivers are deeply affected by the viewpoints of others in
society regarding their child with autism (Chou & Palley, 1998; Chou et al., 2006; Green,
2003; Link et al., 1997; Perlick et al., 2001; Rosenfield, 1997; Struening et al., 2001); this
concern for societal affirmation is deeply ingrained in the Chinese culture. Not
surprisingly, Taiwanese caregivers who held this perception would be less satisfied with
their quality of life.

Research Question 2
What effects do family stressors and family coping resources on parental caregiving
appraisal?

This study investigated Taiwanese caregiver’s perceptions of family stressors and
coping resources on their caregiving appraisal and the extent of influence on their quality
of life. The results showed that the proposed family stressors and family coping resources
accounted for 50% of the variance on the positive caregiving appraisal with an F ratio of

43.64, p<.001. Specifically, among these predictors, parental stress and social stigma had

97

direct negative effects on Taiwanese caregiver’s positive appraisal and family coping
resources had direct positive effects on the Taiwanese caregiver’s positive caregiving
appraisal. Although the findings confirmed previous studies on parental stress and social
stigma as being a natural part of raising a child with autism or other disability (Mak et al.,
2007; Rodrigue et al., 1990; Schieve et al., 2007), parents sometimes reported remarkable
gain from caregiving experiences, high satisfaction and enjoyment of their role when
there was the presence of available family resources (Barnett et al., 2003; Duvdevany &
Abbound, 2003; Schieve et al., 2007). To be noted, caregivers (parents) reported
spouse/partner and non-disable sibling(s) are the most helpful informal resources for
them when encountering the unexpected caregiving demands (p.61). Although slightly
negative associations were found between the child’s behavioral problems and positive
caregiving appraisal; surprisingly, the severity of a child’s behavioral problems had no
significant influence on caregiver’s positive caregiving appraisal. Indeed, when taking the
child’s mean age (9.8 years old) into consideration, it might reflect that the rigorous
demands associated with parenting a child with autism could have decreased for the
caregivers due to regular schooling for this age children and the cumulative influence of
the caregiver’s cognitive mediation may have contributed to the finding.

_ With respect to the negative caregiving appraisal, family stressors and family coping
resources accounted for 49% of the variance in the negative appraisal. It was noteworthy
that only parental stress and social stigma had a strong impact on Taiwanese caregiver’s
negative appraisal regarding the caregiving experience. All other predictors had no
significant impact on the negative appraisal. In other words, parental stress and social

stigma played an important role on the Taiwanese caregivers’ negative caregiving

98

appraisal (Green 2003; Link et al., 1997; Perlick et al., 2000; Rosenfield, 1997).
Surprisingly, family resources seemed to not be a significant influence in the Taiwanese
caregiver’s evaluation regarding a negative appraisal. And the severity of a child‘s
behavioral problems again had no significant impact on a negative caregiving appraisal.
This specific result does reflect the deep influence of Chinese culture on the caregiver’s
perceptions towards caregiving issues. Personal belief intertwines with cultural influence
the extent to impact caregivers’ evaluation towards care demands. Therefore, Taiwanese
caregivers perceived taking care of their child as an obligation regardless of the severity
of child behavioral problems.

Research Ouestion_3_

Do family coping resources moderate family stressors on the quality of life of parents
having children with autism in Taiwan?

The first moderator, religious coping, and its interaction with three predictors served
as a buffer to alleviate the impact of: parental stress, the severity of the child’s behavioral
problems, and the influence of social stigma on Taiwanese caregiver’s psychological
health, even though the effects were small. This finding supported prior research which
indicated the importance of religious coping on caregiver’s psychological well-being
(Burgener, 1994; Rabins et al., 1990). However, no significant moderator-predictor
interaction effects were found to associate with caregiver’s physical health, social
relationships, and satisfaction toward environment. It is noteworthy that Taiwanese
caregivers were most likely to perceive caregiving as an obligation when practicing
Confucian teaching. In addition, mixing the belief from Buddhism and Taoism, the

caregivers presumably perceived taking good care of their child was not only performing

99

a responsibility but also repaying the caregiver’s debt to the receiver or hopefully, to
accumulate blessings thereafter. Although the majority of the caregivers in this study
were not Buddhists or Taoists, they might be heavily influenced by these beliefs since
Buddhism and Taoism are most two prevalence beliefs. Given the highest percentage of
the participants claimed that they have no particular religiosity and only worshiped
ancestors, this result might indicate these caregivers believe the ancestors would naturally
bless offspring. Not surprisingly, the caregiver’s personal belief played an important role
on interpreting the meaning of rearing a child with autism. Thus, the psychological aspect
of quality of life outweighed other aspects.

Taiwanese caregivers’ psychological health, social relationships and satisfaction
towards their environment were the reflections of informal social support (moderator)
and the moderator-predictor interaction products. The results showed informal social
support interacted with parental stress, severity of the child’s behavioral problems, and
social stigma to exert a tremendous impact on the Taiwanese caregiver‘s quality of life.
It might also support the reason that the severity of the autistic symptoms in the child
_ itself was not a significant predictor of the caregivers’ quality of life. In other words,
informal social support was the critical resource which a caregiver could employ to buffer
the stressors resulting from rearing a child with autism. This finding was consistent with
previous research (Chiu, 2004; Lam & Mackenize, 2002; Shek & Cheung, 1990)
highlighting the uniqueness of the Chinese culture. One of the characteristics of the
Chinese culture is self-sufficiency; caregivers would rather seek help from an informal
support system such as spouse, extended family members, and friends than from sources

of formal assistance. Moreover, they perceived using formal support as a failure in their

100

role as caregivers (Roberto, 1993).

In regards to the moderator, formal social support, a small moderation effect on the
Taiwanese caregiver’s psychological health was found among three interaction products
of the predictor and the moderator. Given that the reality of formal social support is still a
noticeable unmet need for caregivers of many families with special needs children
(Llewelly et al., 1999), this finding confirmed the importance of formal social support.
As mentioned above, although Taiwanese caregivers preferred informal social support to
buffer their stressors; however, the influence of formal social support cannot be

undervalued.

Research Question 4
Does caregiving appraisal mediate the family stressors on Taiwanese caregiver’s quality
of life?

As shown in mediation test, the findings showed that parental stress was mediated
by positive and negative caregiving appraisal which, in turn, affected the four dimensions
of caregiver’s quality of life. To be more specific, even though there were stressors, the
caregiver’s subjective perceptions of caregiving would primarily influence how he/she
defined his/her quality of life (Shu et al., 2001). In addition, social stigma was mediated
by positive and negative caregiving appraisal to the extent that it had an impact on the
caregivers’ physical health. Thus, social stigma could be seen as an external stressor
which impacted the caregiver’s physical health indirectly. This finding also supported
previous studies indicating that the caregiver’s quality of life was also influenced by other
existing environmental stressors, stress appraisal, and coping methods (Goode et al., 1998;

Lim & Zebrack, 2004; Schieve et al., 2007; Vedharh et al., 2000). No mediations were

101

found between social stigma and the caregivers’ psychological health, social relationships,
and environment. There were no associations between the severity of child’s behavioral
problems and the mediator, and no associations among the four dimensions of caregivers’
quality of life. Although this finding was contrary to previous research indicating that
child’s behavioral problems would contribute to parental stress (Hastings, 2003; Raian et
al., 2004), such external pressures did not automatically lesson the caregiver’s quality of
life. In fact, whether or not a situation is personally stressful appears to be based on one’s
own unique experience, the caregiver’s appraisal of family stressors associated with
caregiving, the caregiver’s coping mechanism, and the helpfulness of social support.
Caregiving appraisal served as a filter to purge the challenging stress, therefore,
caregiver’s subjective process of appraisal played an important role on judging his/her
quality of life (Eklund & Backstrom, 2005; Ferran, 1996; Rapkin & Schwartz, 2004).
Research Ouestiojn§

What are the factors that predict the quality of life of parents having children with autism
in Taiwan?

In this study, the caregiver’s quality of life was divided into four dimensions (i.e.,
physical health, psychological health, social relationship and enviromnent) regarding
satisfaction, or agreement. As shown in Table 10, parental stress and negative caregiving
appraisal affected Taiwanese caregiver’s physical health. This finding supported
researchers’ proposition (Chou et al., 2006). Along with previous studies (Green et al.,
2004; Pruchno, 2003; Shu & Lung, 2005), parental stress, religious coping, positive
caregiving appraisal and negative caregiving appraisal significantly predicted caregiver’s

psychological health. To be more specific, Taiwanese caregivers with a high level of

l 02

parental stress and a high level of negative caregiving appraisal reported less satisfaction
with their psychological health; however, caregivers who employed religious coping
mechanisms and appraised a higher level of positive caregiving experienced more
satisfaction with their psychological health. In addition, lower levels of negative
caregiving appraisal were indicated if the Taiwanese caregiver’s social relationships were
perceived as satisfactory. Also, a greater utilization of informal social support and a lower
level of negative caregiving appraisal could effectively predict the Taiwanese caregivers’
satisfaction towards their environment.

Among eight predictors, the severity of the child’s behavioral problems, social
stigma, and formal social support were not significantly related to Taiwanese caregivers’
quality of life as measured with the four dimensions. Results of this study failed to
support a direct association between the symptomatic behaviors of the child and
caregivers’ quality of life. It is possible that the range of the severity of child’s behaviors
were from mild to moderate (M =2.01, SD = 4.76, N=270), which, in turn, affected the
caregivers’ quality of life in less significant ways. From the bivariate correlation analyses,
the correlations among social stigma and the four dimensions of quality of life were small
in magnitude. As discussed in the previous questions, caregivers were deeply concerned
about the viewpoints of others regarding their children with autism, however, with the
mediation of caregiving appraisal they were still satisfied with their quality of life.
Moreover, given that the term autism in the law was only recently introduced in the
Handicap Welfare Act of 1990 in Taiwan. Society as a whole may be not infomied
enough about autism to raise awareness to the extent that it would reduce prejudice

towards children with autism. When taking Confucianism into consideration, Confucian

103

teaching is not only a philosophy, and a religion, it is also a way of life which has
influenced Chinese people over many centuries. It cannot be forgotten that Confucian
teaching emphasizes that to despise people with disabilities is inappropriate in human
relationships. As a result, the finding that the Taiwanese caregivers’ quality of life was not
significantly affected by social stigma can shed a light on the Chinese culture, which at
times holds a negative perspective about disabilities. It was noted in this study, that
caregivers only encountered mild to moderate child behavioral problems. This low level
of severity affected the caregiver’s decision to use less formal social support, which in
tum, affected the caregivers’ perception regarding the usefulness of formal social support.
This finding was also consistent with. the previous research that found formal social
support was less strongly related to caregiver’s well-being than informal social support
(Seltzer & Krauss, 1989; Smith et al., 1994). It might be also true even for those families
with severe behavior issues because self-sufficiency is long rooted in the Chinese people.

Research Question 6

Are family demographic variables related to the quality of life of parents with children
with autism in Taiwan?

As shown in Table 8 and Figure 2, older caregivers tended to have better social
relationships, however, as the caregivers increased in age they tended not to perceive
formal social support as useful to them when dealing with their child’s issues. To be
noted, the higher the caregiver’s education level, the more satisfied the caregivers were
with their environment. Furthermore, the caregiver’s educational level was also a
significant predictor of parental stress, religious coping, and negative caregiving appraisal.
Namely, caregivers with a higher level of education reported higher levels of parental

stress and a negative caregiving appraisal and they would be more likely to use religious

104

beliefs to cope with the stress. Taiwan has an invisible caste system with scholars on the
top, farmers second, workers third and businessmen last. It is still salient in Chinese
culture that the child’s personal academic achievement affects the value and honor of the
whole family and their ancestors. Presumably, embedded in a highly academic oriented
culture, parents of children with autism were aware that their child cannot meet this
expectation, thus affecting the parental stress. As a result, they choose not to have a
specific religiosity but to worship ancestors only. Also, caregivers with a higher education
often have a greater household income, which might lessen their financial burden in
providing care for their children. [Note: not shown in the Tables].

It was noteworthy that the caregiver’s employment status had a small positive
correlation with all four aspects of quality of life. The result corresponded with previous
research and suggested that caregivers who perceived they were engaging in meaningful
work away from home and who maintained career opportunities were critical to
caregivers’ quality of life (McCubbin, 1989; Able-Boone & Stevens, 1994). It seemed
that caregivers who worked more hours weekly reported greater satisfaction with their
quality of life in the four domains.

In addition, family income had a moderate relationship with environment, and small
relationship with psychological health and social relationships, except physical health.
Regression analysis also showed that family income also was a significant predictor of
the caregiver’s psychological health, social relationships and environment in a positive
way. Several components of the quality of life, particularly the satisfaction of material
needs, were dependent on the income of the family and the balance of family

expenditures (Bubolz & Whiren, 1984; Able-Boone & Stevens, 1994). Thus, it is no

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doubt that family income was relevant to Taiwanese caregivers’ quality of life.
Surprisingly, no significant correlations were found among marital status and the
four aspects of the caregiver’s quality of life. However, marital status significantly related
to informal social support. This finding confirmed previous research indicating spousal
support is a critical source of caregiving process and caregiver’s life satisfaction
(Milgram & Atzil, 1988; Trute & Hiebert-Murphy, 2002). In contrast to high divorce rate
(80%) in the United States among parents of children with autism (Autism Society of
America), an astounding finding was that 91% of the caregivers in this sample are still in
their first marriage (Table 3). The low divorce rate (5.2%) cannot be overlooked.
There are several possible explanations about this finding. First of all, Taiwanese
caregivers, influenced by Confucian teachings, might abide with one of the"Five Cardinal
Relationships is husband and wife”, which highlights the desirable norm for spousal
interaction. Confucian’s teaching for a couple emphasizes mutual respect of each others
and the husband cannot abandon his wife for any reason. Secondly, “regard for face” (Ho,
1976) is extremely important in this culture; divorce is a disgrace and would be criticized
by society. It is possible if a husband divorced his wife, he would encounter difficulty in
getting a promotion at his job or finding a new one. Thirdly, parents have to go through
the process of accepting their child with autism which seems to be the major cause of
marital discord among special needs families. However, Taiwanese caregivers perceive
raising the child as an obligation no matter what the child’s condition is, hence, a child
with autism doesn’t shatter the marriage as easily. Finally, marital satisfaction may be
good and the marriage stable prior to the presence of the child with autism; therefore,

strong bonds between the husband and wife uphold the marital relationship. In brief,

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although the Chinese family structure may be influenced by the Western culture, the
Chinese family core values continue to exert a strong bond between parents. However, a

child with disabilities still takes a toll on familial relationships.

Hypotheses
This study tested the following hypotheses:

Hol: Parental demographic variables are not related to the quality of life among
Taiwanese caregivers of children with autism.

Hal: Parental demographic variables are related to the quality of life among Taiwanese
caregivers of children with autism.

Among the five demographic variables (i.e., caregiver’s age, education level, marital
status, employment status, and family income), findings from the analysis support
caregiver’s employment status (B = .13, t= 2.02, p<.01) effect on caregiver’s physical
health, employment status (B = .11, t= 1.9], p<.05) also marginally was related to
caregiver’s psychological health. However, family income was associated with
caregiver’s psychological health, social relationships, and satisfaction about the
environment. The results were 8 = .17, t= 2.82, p<.01; B = .25, t= 3.96, p<.001; [3 = .37,
t= 5.56, p<.001 respectively. The caregiver’s age, education level, and marital status

influence on the caregiver’s quality of life were not supported by the findings.

H02: The relationship between family stressors (parental stress, severity of child, and
social stigma) and the caregiver’s quality of life as measured with four dimensions
(physical health, psychological health, social relationship, and environment) would
not be mediated by the intervening variables (positive and negative caregiving
appraisal).

Ha2: The relationship between family stressors (parental stress, severity of child, and

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social stigma) and the caregiver’s quality of life as measured with four dimensions
(physical health, psychological health, social relationship, and environment) would
be mediated by the intervening variables (positive and negative caregiving
appraisal).

Based on the meditation testing (Table 16, page 91), the effects of parental stress and
social stigma were mediated by positive and negative caregiving appraisal the extent to
impact caregiver’s physical health. The testing model was found significant (R2=0.12), F
(5, 265) =6.87, p<.001. Mediation effects reduced dramatically to non-significant from
B: -.26, p<0.001 for parental stress and B: -.13, p<0.05 for those concerned about social
stigma to B: -.18 for parental stress and B: -.09 for those concerned about social stigma,
the p-values were non-significant. Therefore, full mediation was found regarding the
effects of mediators on caregiver’s physical health. In regard to the caregiver’s
psychological health, the model was also significant (R2 =. 31), F (5, 265) = 23.23,
p<.001. However, the effects of parental stress decreased on caregiver’s psychological
health from [3= -.47, p<.001 to B: -.17, p<.05. The evidence of partial correlation was
confirmed.

The overall model for the caregiver’s social relationships were significant (R2=.2l). F
(5,265) =14.22, p<.001. The relationship between the parental stress and the caregivers’
social relationships were reduced substantially from B: -.36, p<.001 to B= -.09. The
p-value was not significant when positive and negative caregiving appraisal were added
into the analysis, providing evidence for full mediation. Regarding to caregiver’s
satisfaction toward environment, the model was also significant (R2=.14), F (5,265)

=8.64, p<.001. The result indicated the effects of parental stress were reduced

significantly from B: -.26, p<.001 to [3= -.06. The p-value is not significant, and a full

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mediation for this model was confirmed. Among the three stressors, the hypothesis test
supports parental stress was mediated by positive and negative caregiving appraisal on
the four dimensions of caregivers’ quality of life. The mediation effect of social stigma
was also a significant influence on the caregiver’s physical health, only for the severity of

child’s behavioral problems, no significant mediation was found.

H03. There is no effect of family stressors, family coping resources, and caregiving
appraisal on the quality of life of parents having children with autism in Taiwan.

Ha3. There is effect of family stressors, family coping resources, and caregiving appraisal
on the quality of life of parents having children with autism in Taiwan.

The regression analysis showed that parental stress ([3: -.18, p<.05) and negative
caregiving appraisal (B= -.l9, p<.05) had negative effects on caregiver’s physical health.
There was a 13.4% of the variance on this model of caregiver’s physical health (p<.001).
In terms of caregiver’s psychological health, the model accounted for 33% of the
variance (p<.001). Parental stress ([3: -.21, p<.05), religious coping (B: .13, p<.05),
positive caregiving appraisal ([3= .18, p<.05), and negative caregiving appraisal (B: -27,
p<.001) had significant effects on this outcome. Informal social support ([3: .30, p<.001)
and negative caregiving appraisal (B: -28, p<.001) had significant effects on caregiver’s
social relationships. For caregiver’s satisfaction toward environment, informal social
support ([3: .14, p<.05) and negative caregiving appraisal ([3: -24, p<.05) were
significant predictors, there was approximately 16% variance in the caregiver’s
satisfaction toward environment. The results showed that the severity of the child’s
symptoms, social stigma, and formal social support didn’t have significant effects on four

dimensions of caregiver’s quality of life.

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Conclusions

In general, Taiwanese caregivers of children with autism reported satisfaction in their
quality of life. The role of caregiving appraisal significantly mediated the effects of
parental stress on the four dimensions of Taiwanese caregivers’ quality of life. In addition,
the effect of social stigma was mediated by the caregiving appraisal to impact the
caregivers’ physical health, but not other dimensions. To be noted, psychological health
stood out as the caregiver’s major concern among the four aspects of quality of life. Not
surprisingly, parental stress that was associated with a negative caregiving appraisal
resulting in the caregivers’ poorer psychological health. However, employing religious
coping and appraising caregiving as a positive experience increased Taiwanese
caregivers’ satisfaction towards their psychological health. Taiwanese caregivers reported
that as a result of their experiences with an autistic child they had a deeper appreciation
about the meaning of life and a deeper respect for others. This finding was not only
consistent with previous studies but also reflected the influence of Chinese culture.

Confucianism is a central part of Chinese culture which dominates Taiwanese
caregiver’s beliefs and values. Embedded in this culture, parental roles have been based
on Confucian philosophy, which orchestrates ethical teachings for human relationships.
In this cultural paradigm, it is an obligation to rear one’s own child no matter what the
child’s condition is. According to Confucianism, there are "Five Cardinal Relationships:
those between ruler and minister, father and son, husband and wife, elder and younger
brothers, and friends. Of these five relationships, each participant is required to set their
will on the path of duty. Following Confucian teaching in family life, a parent should

behave like a parent, a child like a child, an elder like an elder, a youth like a youth, a

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husband like a husband, and a wife like a wife, and then the conduct of the household is
correct. Although parents reported that parental stress and experienced social stigma due
to the severity of child’s behavioral problem (Table 5), Taiwanese caregivers of child with
autism appear willing to conform to the norms and perceived the severity of child's
behaviors as a natural part of parenting.

However, having a child with autism could be made more difficult because of the
concept of “Keeping Face” which has been long rooted in Chinese people’s mind. In
addition, exposing personal or familial difficulties in public is considered as “losing face”
and it is considered an inappropriate act in Chinese culture; therefore, seeking
professional help as a way out of resolving individual problems is not a desirable method.
This might be why Taiwanese caregivers were very reluctant to request formal social
support such as professional counseling or special education services when dealing with
stressors associated with caregiving. Furthermore, Chinese cultural beliefs about
adversity also provide some insights to this study, especially combing the results from
qualitative data. There are several sayings to be considered which play an important
role on the caregivers’ evaluation of their quality of life such as, “Zhi Zu chang le” (a
contented person is always happy), “Hao chou ming sheng cheng”(whether a life is good
or bad depends on fate). As one parent shared her thoughts regarding the meaning of her
child in her life, she said, “If I didn’t have this child I might not comprehend the process
and the meaning of life deeply, even though I might not feel helpless and hopeless about
life, I have learned how to treat others with sympathy and face things with humility”
(Note: this statement quotes from the qualitative document but not analyzed in this

dissertation). Nevertheless, Taiwanese caregivers were prone to experience poor

11]

psychological health due to the stresses of caregiving and had mixed feelings. However,
overall they still felt meaning to their irreplaceable caregiving role.

In regards to social relationships, Taiwanese caregivers were satisfied with the
informal social support from family members such as spouse, grandparents, non-disabled
sibling(s), and friends. Echoing with a previous study (Molasion et al., 1995), caregivers
preferred using informal social support rather than formal social support. They tended not
to want to bother others outside the family and tried to resolve problems within the
family as much as possible. It is understandable caregivers who were less satisfied with
their social relationships would perceive raising the child with autism as having a
negative impact. They reported the caregiving duties restricted his/her social life, and
they had more quarrels with other family members.

For Taiwanese caregivers, it seemed that physical health and accessible environment
were not the focus when they evaluate their quality of their lives. However, parental
stress did result in poor health-related quality of life. Meanwhile a caregiver’s satisfaction
with accessible environment was influenced by the negative caregiving appraisal.
However, physical health and the accessibility of environment were not significant
indicators of Taiwanese caregivers’ quality of life.

To be noted, those who had high educational levels were also more likely to employ
religion as coping mechanism. Most participants in current study were non-religious or
only worshiped ancestors. In Taiwan, the majority of Taiwanese believe in Buddhism, in
this study, the composition of non-religious (16.5 %) and “only worship ancestors (36.1%)
caregivers” constituted more than half of the sample (52.5%). Contrary to the

pervasiveness of Buddhism religiosity in Taiwan, only 17.4 % of the caregivers

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proclaimed themselves as Buddhist. Presumably, some aspects of Buddhism, such as
difficulties in life coming as a punishment for committing evil deeds in this life or a
previous life (karma), might lead to a caregiver’s psychological pain or guilt to some
degree. On the contrary, Christians perceive children are a heritage from the GOD.
Therefore, taking care of a child with autism is an opportunity to experience GOD’s grace.
This finding is worth further study to examine the complexity of religious beliefs and
their effects on Taiwanese caregivers’ quality of life.

Limitations

There were several limitations in this study. One salient limitation of this
cross-sectional study was the inability to assess how the felt burden of caregivers’
influences on quality of life may change over time since the data was collected only at
one point. The investigator was interested in caregiver’s perceptions towards their quality
of life. However, the many dimensions in quality of life are subject to change as the
objective environments change. Therefore, using longitudinal design may minimize the
disadvantage of cross-sectional study.

A second limitation of this study was that the use of self-reporting instruments may
bias the interpretation of data. All the predictor variables discussed in this study were
about how primary caregivers (most of them were mothers) think, feel and how they
perceive their quality of life. This set of variables is best examined through honest
self-reports. Although the self-reporting instrument has its strength in terms of providing
information, there are weaknesses related to using them as well. For example, caregivers
may not be aware of certain aspects of their evaluation about their quality of life; and

subjects may vary in their subjective interpretation of questions. In addition, giving an

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appearance that things are going well (even if they were not) is likely to occur,
particularly, under the pressure of “keeping face” in Chinese culture. One parent said,
"Families should live together no matter how hard lives are, because we are in the same
boat. We would never abandon or give up hope on my child, because he is my precious
one. I never had the thought of putting him in any kind of residential care.” However, this
parent further said, “My view of life has become more pessimistic. I am more vulnerable
and timid.” (Note: quote from qualitative data). Another issue pertaining to the instrument
is this methodology of appraisal is from a Western country. These Westemized
instruments may not capture the essence of Taiwanese caregivers’ true situation.

A third limitation of this research relates to using a single source of data. There might
be problems with shared method variance and its possible distortion of the results
(Machida, Taylor, & Kim, 2002). Quality of life is a multidimensional construct so the
view point of other family members or service providers may contribute to the
understanding of caregiver’s subjective evaluation of his/her own quality of life.
However, getting information from service providers or professionals to analyze parents’
quality of life would be extremely difficult. Therefore, only the self appraisal submitted
by primary caregivers of children with autism was used in this study.

A fourth limitation of this research was the gender distribution of the caregivers of
children with autism. Given that the majority of participants were mothers (47 male
caregivers and 233 female caregivers); the findings couldn’t reflect if there were gender
differences regarding the caregiving appraisal on the quality of life. Finally, in regard to
the sample in this study, the participants were volunteers who appeared to be middle class

and report having children whose behaviors were not severe. Previous research

”4

suggested that people who did not participate in research tend to differ systematically
from those who participated (Cox, Rutter, Yule & Quinton, 1977). Therefore, the
generalization of these findings may not be applied to parents of children with other types
of disabilities and the results cannot be generalized to parents living outside of Taiwan;
nor to the general population of families in Taiwan who have children on the autism
spectrum disorders.

Implications

In this study, negative caregiving appraisal, parental stress, and the availability of
informal social support were found to be the three factors that were most predictive of a
Taiwanese caregivers’ quality of life. In other words, how caregivers appraised their
caregiving experiences and the helpfulness of informal social support significantly
influenced their quality of life. It implied that the stress associated with taking care of a
child with autism may contribute to caregivers’ negative appraisal. However, if informal
social support could be readily available, this would increase the caregivers’ satisfaction
towards their quality of life.» Since the family is the vital resource for the caregivers when
dealing with the stressors related to caregiving issues, it will be valuable to strengthen
family bonds to formulate a strong support network within the family and its nested
environment as well.

The findings of this study indicated that developing cognitive intervention program
which focus on how caregivers appraise their caregiving situation, both in terms of
positive satisfaction/gain and negative burden/stress, as well as increasing available
family coping resources, could help empower caregivers, thus, improving their quality of

life. This is significant because the moderating effects of family resources could result in

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lower levels of parental stress, as well as diminish the effects of child’s behavioral
problems regardless of their severity, and reduce the effect of social stigma on the
caregivers’ quality of life.

Cultural values play an important role on an individual’s interpretation of stressful
events. Chinese culture values include collectivism, conformity to norms, emotional
self-control, humility, filial piety, and family recognition through achievement. Culture
influences on caregiver’s evaluation of quality of life may be best studied by using mixed
methodology to capture the real voices of participants. Given the low divorce rate in this
study, future research should examine how caregivers of children with special needs are
able to maintain marriage and support positive sustainable family relationship. The
information glean the uniqueness of Taiwanese couple coping with the stressors resulting
from having a child on autism spectrum disorders may contribute to their counterparts in
other countries.

Reflections on the data collection procedures

I was invited to speak at the annual meeting of Autism Society of Taiwan where I
shared my interest in conducting this research. I took the chance to spread the word that
I might need the Society’s help to distribute the surveys to their members. Not
surprisingly, most of the executives and presidents of autism associations and foundations
warned me the return rate would be very low. I was told that in previous years, families
of children with autism weren’t willing to participate in any study due to the limited
resources available to them and the little actual help they could receive. Parents are
possibly weary from caring for their child and hold bitterness or a negative perception

towards researchers to some degree. So I decided to send out 900 copies of surveys

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instead of the original quantity of 600 that I intended in my proposal. Then I went to
several cities to give a speech to parents of children with autism to raise their awareness
about my study. I was surprised that some autism associations directly assigned who
should fill out the surveys for the convenience of completing researcher’s request. They
didn’t send out surveys to some families they thought wouldn’t answer my questionnaires.
However, the Kaohsiung Autism Association and Star Children Foundation were familiar
with me due to my former work for them. They were extremely supportive and both the
director and president made an extra effort carry out the research. They called their
members family by family and emphasized the importance of my study. The president
of Star Children Foundation told me some caregivers (most of them were mothers)
rejected the concept directly by saying, “My life is overwhelming enough for me to deal
with daily issues, and I don’t have the desire and time to this extra work”. I suspect it is
possible that my study sample has bias of homogeneity on middle class families. This
possibly influenced my results and findings. Including those low Social Economic
Status (SES) families in the similar studies will be a challenge and deserves researchers’

future attention.

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Appendixes

Appendix 1

1. WHOQOL-BREF Taiwan Version (Yao et al., 2004)

Please indicate how you feel about your. quality of life over last two weeks on a 5-point
Likert scale format (1: not satisfied at all /very poor; 2= dissatisfied/ poor; 3: neither
dissatisfied/poor nor satisfied/good; 4=satisfied/ good; and 5=very satisfied/ good).

1. In general, how would you evaluate your quality of life?

2. In general, are you satisfied with your health?

3. How satisfied the sleep you get?

4. Are you satisfied with your ability to perform routine daily activities?

5. Are you satisfied your working ability?

6. Are you satisfied with yourself?

7. Are you satisfied with your personal relationships?

8. Are you satisfied with the support you get from your friends?

9. Are you satisfied with your living conditions?

10. Are you satisfied with convenient it is for you to get medical services?

11. Are you satisfied with your transportation you use?

12. Do you feel your life has meaning?

13. Do you feel respected/face saved by others?

14. Do you need medical treatment to cope with your daily life?

15. To what extent do you feel that your pain hinders you in doing what you need to do?

16. Do you enjoy your life?

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17. Do you have the opportunity to take leisure time?

18. How safe do you feel in your daily life?

19. Do you live in a health environment (e.g., pollution, climate, noise, transportation)?
20. Can you accept your appearance?

21. Is it convenient for you to get the daily information you need?

22. Do you have enough money for whatever you need?

23. Do you have enough energy for your daily life?

24. How good is your ability to concentrate?

25. How is your ability to get around?

26. Are you usually able to get the food you like to eat?

27. Do you often have negative feelings (for examples: depression, despondency, anxiety,
anguish)?

28. Are you satisfied with your sexual life?

29. Are you satisfied with the support you get from family?

30. Are you able to get support from your spouse (or partners)?

31. Is the quality of your environment sufficient for your needs?

32. Do your personal beliefs give meaning to your life?

33. To what extent do your personal beliefs give you the strength to face difficulties?
Note: [ Item 13 and 26 are related to Taiwanese culture, face love, and food satisfaction,
added from the original WHOQOL-BREF by Yaoet a1. (2004). Item 25, 32 and 33 are

adapted from the original WHOQOL. ]

2. Family Stressors: Family Impact Questionnaire and Child-related stressors:

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Family Impact Questionnaire (FIQ) (Donenberg & Baker, 1993)

Being a parent can be difficult, and children have different effects on the family. We
would like to know what impact your child has had on your family compared with the
impact other children his/her age have on their families. The following questions attempt
to understand children’s impact on different areas of family functioning. Please circle the
number of the response choice that best describes your situation in terms of how things

have been in general for you with reference to your child.

Not at all=l , somewhat=2, medium =3, somewhat much=4. very much=5
Your feelings and attitudes about your child

1. My child is more stressful.

2. I enjoy the time I spend with my child more.

3. My child brings out feelings of frustration and anger more.

4. My child brings out feelings of happiness and pride more.

5. When I am with my child, I feel less effective and competent as a parent.
6. It is easier for me to play and have fun with my child.

7. My child’s behavior bothers me more.

8. My child makes me feel more loved.

9. I feel like I am working alone in trying to deal with my child’s behavior.
10. My child makes me feel more energetic.

1 1. I feel like I could be a better parent with my child.

12. My child makes me feel more confident as a parent.

13. I feel like I should have better control over his/her behavior.

14. My child does what I tell him/her to do most of the time.

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15. I feel like I know how to deal with my child’s behavior most of the time.

The impact of your child on your social life

Compared with children and parents with children the same age as my child. ..

16. My child’s behavior embarrasses me in public more.

17. My family avoids social outings more (e. g., public events, restaurants) because of
his/her behavior.

18. It is more difficult to find a baby-sitter to stay with him/her.

19. My family visits relatives and friends less often than I would like to because of my
child’s behavior.

20. My child interferes more with my opportunity to spend time with friends.

21. I feel tenser when my family goes out in public because I am worried about his/her
behavior.

22. I need to explain my child’s behavior more.

23. I participate less in community activities because of my child’s behavior.

24. I have guests over to our house less often than I would like to because of my child’s
behavior.

25. I take my child shopping and on errands less.

[question 18 and 22 were deleted due to lower the reliability of this scale]

The financial impact of your child

26. The cost of raising my child is more.

27. The cost of child care is more.

28. The cost of food, clothes, and/or toys is more.

29. The cost of home alternations and/or fixing and replacing items in the home is more.

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30. The cost of medication, medical care, and/or medical insurance is more.
31. The cost of educational and psychological services is more.

32. The cost of recreational activities (e.g., music, swimming, gymnastics) is more.

Child related stressors: Problem Behaviors

Instructions

Some of the following behaviors are common at certain ages and are not of concern.
Sometimes they cause a problem. If an individual does not exhibit problem behaviors in a
category, check “No” and score the item “Not serious” (0) for severity. If you check
“Yes”, describe the major problem and check its severity on a five-point Likert scale:
1=Not serious; not a problem, 2=Slightly serious; not a problem, 3=Moderately serious; a
mild problem, 4=Very serious; a severe problem, and 5=Extremely serious; a critical
problem.

1. Hurtful to Self

Does (name) injure his/her own body--—for example, by hitting self, banging head,
scratching, cutting or puncturing, biting , rubbing skin, pulling out hair, picking on skin,
biting nail, or pinching self?

0 No

0 Yes. If yes, describe the major problem:
Severity: How serious is the problem usually caused by this behavior? (C heck one)

2. Hurtful to others
Does (name) cause physical pain to other people or to animals—--for example, by hitting,
kicking, biting, pinching, scratching, pulling hair, or striking with an object?

Severity: How serious is the problem usually caused by this behavior? (C heck one)

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3. Destructive to property

Does (name) deliberately break, deface, or destroy things---for example, by hitting,
tearing, or cutting, throwing, burin, or making or scratching things?

Severity: How serious is the problem usually caused by this behavior? (Check one)

4. Disruptive Behavior

Does (name) interfere with the activities of others—for example, by clinging, pestering or
teasing, arguing or complaining, picking fights, laughing or crying without reason,
interrupting, or yelling or screaming?

Severity: How serious is the problem usually caused by this behavior? Ccheck one)

5. Unusual or Repetitive Habits

Does (name) have any unusual behaviors that he/she may do over and over---for example,
pacing, rocking, twirling fingers, sucking hands or objects, twitching (nervous tics),
talking to self, grinding teeth, eating dirt or other objects, eating too much or too little.
staring at an object or into place, or making odd faces or noises?

Severity: How serious is the problem usually caused by this behavior? (Check one)

6. Socially Offensive Behavior

Does (name) behave in ways that are offensive to others-«for example, talking too loudly,
swearing or using vulgar language, lying, standing too close or touching others too much,
threatening, talking nonsense, spitting at others, picking nose, belching, expelling gas,
touching genitals, or urinating in inappropriate places?

Severity: How serious is the problem usually caused by this behavior? (Check one)

7. Withdrawal or Inattentive Behavior

Does (name) have difficulty being around others or paying attention---for example,

keeping away from other people, expressing unusual fears, showing little interest in
activities, appearing sad or worried, showing little concentration on a task, sleeping too
much, or talking negatively about self?

Severity: How serious is the problem usually caused by this behavior? (Check one)

8. Uncooperative Behavior

Does (name) have any behavior that is uncooperative---for example, refusing to obey, do
chores, or follow rules; acting defiantly or pouting; refusing to attend school or go to
work; arriving late at school or work; refusing to take turns or share; cheating; stealing;
or breaking laws?

Severity: How serious is the problem usually caused by this behavior? (Check one)
Social stigma

Please read the statements listed below and for each statement please indicate to what
extent each of the following you think best fits your perceptions. Please use the following
scale to record your answers:

Strongly disagree=1, Disagree=2, Neither disagree nor agree =3, Agree: 4, and Strongly
agree: 5

1. Most people would accept my child with autism as a close friend.

2. Most people think that my child with autism is dangerous and unpredictable.

3. Most people feel that having autism is worse than being physical disability or chronical
illness.

4. Most people look down on someone who has autism.

5. Most people think less of a person who has autism.

6. Most people think family of a child with autism is a sign of curse resulting from

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immoral doing at previous life.

7. Most people in my community would rather not be friends with families that have a
child with autism living with them.

8. Most people look down on families that have a child with autism living with them.

9. Most people believe their friends would not visit them as often if a member of their
family having autism.

10. Most people treat families with a child who has autism in the same way they treat
other families.

11. Most people do not blame parents for the autism of their children.

12. Most people would rather not visit families that have a child who has autism.
[Question 1 will be coded the opposite way]

4. Family Coping Resources: Family Social Support and Religious Coping

Religious Coping Activities Scales

Please read the statements listed below and for each statement please indicate to what
extent each of the following was involved in your coping with the event. Please use the
following scale to record your answers:

Not at all=1, Somewhat= 2, Moderate = 3, Quite a bit=4, and a great deal=5

Spiritual Based Coping

1. Trusted that God would not let anything terrible happen to me.

2. Experienced God’s love and care.

3. Realizing that God was trying to strengthen me.

4. In dealing with the problem, I was guided by God.

5. Took control over what I could and gave the rest to God.

125

6. My faith showed me different ways to handle the problem.

7. Accepted the situation was not in my hands but in the hands of God.

8. Found the lesson from God in the event.

9. God showed me how to deal with the situation.

10. Used my faith to help me decide how to cope with the situation.

11. Provided help to other members in the same religious association/church.

12. Accumulated charitable and pious deeds by donation or claim oneself as god’s child.

[Note: 11 & 12 are related. to Taiwan’s folk belief]

13. Focused on the after life rather than the problems of this world. [ For this question, I
change the words associated Taiwanese beliefs ]

14. Burned offering/incense to ancestors to protect me from suffering [Taiwanese folk
belief].

Family Social Support

Many families of young children with disabilities have needs for information or support.

We would like to know what support might be helpful to you while dealing with the

demands from your child. Please indicate how helpful each sources is to you or your

family.

Not available = 1, Not at all helpful=2, A little bit helpfu1= 3, Moderate helpful=4, Very

helpful=5, Extremely helpful=6

Informal social support

1. Child’s grandparents

2. Spouse/ partner

3. Non-disable sibling (if the child with autism is the only child then skip this one)

126

4. Our relatives/ extended family members

5. Our friends

6. Our neighbors

7. Co-workers/colleague

8. Parent Groups

9. Social groups/clubs

10. Faith based organization

Formal social support

11. Children’s school teacher/ therapist

12. Child care provider

13. Professional counselor (e.g., psychologist, social worker, psychiatrist)

14. Professional services (e. g., workshop related to parenting issues)

15. Child’s Individual Education Program

4. Caregiving Appraisal (Caregivng Appraisal will be adapted from Lawton et a1
(2000)

Now we’re going to talk about some feelings you may be having in caring for your
(child). For each statement, please tell me if you agree a lot, agree a little. neither agree

nor disagree. disagree a little. or disagree a lot.

Please indicate how you feel have been on a 5-point Likert scale format (1: Strongly
disagree, 2=disagree a little, 3= neither agree nor disagree; 4=agree a little;

5=agree a lot)

Positive Appraisal

1. I get 5 sense of satisfaction from taking care of my (child).

1.

2.

Taking care of my child has made me feel closer to my child

I found that taking care of my child gives a new meaning to my life

1 can deal with my child’s difficult behaviors well

My family has become closer because of taking care of my child

I feel that I really enjoy being with my child

I am satisfied with my way oftaking care of my child

I am happy about gaining caregiving skills through taking care of my child

Because of taking care my child, I become more empathic with parents of child with
disability.

I learned lot knowledge about advocating for child with disability due to take care of

my child.

Negative appraisal

—
a

b)

I do not have enough time for myself because oftaking care ofmy child

My physical condition is not good because of taking care of my child

I don’t have enough time for other family members (e.g., spouse, other child(ren))
because oftaking care of my child

I feel uncomfortable about having friends come over my house because ofmy child
Taking care ofmy child gives me a trapped feeling

Taking care of my child is the way to repay what I owed him/her in the previous life

I feel that 1 don’t have confidence to deal with my child's difficult behaviors

128

8.

9.

I feel that my social life has suffered as a result ofcaring for my child

My family /relative have more quarrels because ofearegiving to my child

10. I don’t have time to spend in recreational activities

Demographic Information

1.

2.

Please indicate your age?

 

What is the birth order of this child with autism? (1) First born (2) Second born (3)

Third born (4) Fourth born (5) Others

 

Please indicate the gender of this child with autism? (1) Male (2) Female

Please indicate the number of family members live in the households

 

Please indicate your educational level:
(1) primary school
(2) middle school
(3) high school
(4) two-year college graduate
(5) university graduate

(6) graduate school and above

* Number of years is not used as a measure of education level in Taiwan

6. Please indicate your current relationship status:

(1) Married

. (2) Separated, divorced or widowed
(3) Remarried
(4) Single

(5) In a committed, live-in relationship

129

If you are not currently married, Please proceed to question number 8
7. Please indicate your spouse’ 5 educational level if you are married:
(1) primary school
(2) middle school
(3) high school
(4) two-year college graduate
(5) university graduate
(6) graduate school and above
8. Please indicate your employment status:
(1) Homemaker
(2) Part-time employee (1-20 hours per week)
(3) Part-time employee (21-30 hours per week)
(4) Full time employee (40 hours or more per week)
9. Does your work have different shifts other than regular business hours (8am-5pm)?

(1) Yes. (Indicate the shift: ) (2) No.

 

10. Please indicate your family monthly income:

Under NT 20,000 dollars

 

NT 20,001 — 40.000 dollars

 

NT 40, 001 — 60,000 dollars

 

NT 60,001 —- 80,000 dollars

 

NT 80,001 - 100,000 dollars

 

NT 100,001 — 120,000 dollars

 

NT 120,001- 140,000 dollars

 

130

Above NT 140,001 dollars

 

0 NT : New Taiwan Dollars
O 1 US dollars = 31 Taiwanese dollars

11. Please indicate your religious belief:

 

 

 

 

 

 

 

1. Buddhism

2. Taoism

3. Yi- Kwan Tao

4. Christianity

5. Catholic

6. No particular religiosity but worship ancestors
7 No religious belief.

8 Folk beliefs

 

131

References

Able-Boone, H. & Stevens, EA. (1994). Family dynamics and coping after a child’s
intensive care nursery experience: Implications for early intervention.
Infant-Toddler Intervention, 4, 161-172.

Albert, SM. (1997). Assessing health-related quality of life in chronic care populations.
In J. Teresi, M.P. Lawton, D. Holmes, & M. Ory (Eds) Measurement in elderly
chronic care populations (New York: Springer).

Anderson,S. & Sabatelli, R. (1999). Family interaction: A multigenerational
developmental perspective. (2nd Ed.). Needham Heights, MA: Allyn & Bacon.

Aneshensel C. S., Pearlin, 1.. 1.. Mullan, J. T., Zarit, S. 11., Whitlatch, C. .1. (1995).
Profiles in C aregiving: The Unexpected (fil‘areer. San Diego, Academic Press. Inc.

Asian Culture Brief: China (2001) Vol. 2 Issue 2

Baily, D.,Wolfe, D. M., & Wolfe, C. R. (1994). With a little help from our friends: Social
support as a source of well-being and of coping with stress.
Journal of Sociology and Social Welfare, 21 (2), 127—152.

Baker,B. L., Blacher, J., Kopp, C. B., & Kraemer, B. (1997). Parenting children with
mental retardation. In N. W. Bray (Eds): International review of research in
mental retardation, Academic Press, San Diego.

Bamett,D., Clements, M.; Kaplan-Estrin, M.; Fialka, J., (2003) Building new
dreams-supporting parents’ adaptation to their child with special needs. Infants
and Young Children, 16 (3), 221-233.

Baron, R. M., & Kenny, D. A. (1986). The moderator-mediator variable distinction in
social psychological research: Conceptual, strategic, and statistical considerations.
Journal of Personality and Social Psychology, 5, 1173—1182.

Bamet, A.M. (2003). The impact of family relations on caregivers’ positive and negative
appraisal of their caretaking activities. Family Relations, 52 (2), 137-142.

Bayat, M. (2007). Evidence of resilience in families of children with autism.
Journal of Intellectual Disability Research, 51 (9), 702-714.

Behr, S. K., Murphy, D. L. & Summer, .1. A. (1992). User’s Manual: Kansas Inventory of
Parental Perceptions (KIPP). Lawrence: University of Kansas, Beach Centre on
Families and Disabilities.

Bishop, S.L., Richler, J ., Cain, A. C., & Lord, C. (2007). Predictors of perceived negative
impact in mothers of children with autism spectrum disorder.
American Journal on Mental Retardation, 12 (6), 450-461.

Blaine, B. E. (2000). The psychology of diversity: Perceiving and experiencing social
difference. Mountain View, CA: Mayfield Publishing.

Bramston, P., Chipur, H., & Pretty, G. (2005). Conceptual principles of quality of life an
empirical exploration. Journal of Intellectual Disability Research, 49, 728-733.

Brannan, A. M., Heflinger, C. A., Bickman, L. (1997). The Caregiver Strain
Questionnaire: Measuringthe impact if the family of living with a child with
serious emotional disorders.

Journal of Emotional and Behavior Disorders, 5 (4), 212-222.

Brinchmann, B. S. (1999). When the home becomes a prison: Living with a severely
disabled child. Nursing Ethics, 13 7

Brislin, R. W. (1970). Back-translation for cross-cultural research.
Journal of Cross-Cultural Psychology 1, 185-216.

Bristol, M., Gallagher, J., & Holt, K. (1993). Maternal depressive symptoms in autism:
Response to psychoeduactional behavior intervention.
Rehabilitation Psychology, 38, 3-10.

Browne, G & Bramston, P. (1996). Quality of life in the families of young people with
intellectual disabilities. Aust N Z J Mental Health Nursing, 5, 120-130.

Bruce, E. J., Schultx., C.L., Smymios, K. X.,& Schultz, NC. (1994). Grieving related to
development: A preliminary comparison of three age cohorts of parents of
children with intellectual disability.

British Journal of Medical Psychology, 67, 37-5 2

Bruininks, R. H., Hill, B. K., Weaherman, R. F., & Woodcock, R. W. (1986). Inventory
for Client and Agency Planning (ICAP). Allen, TX: DLM Teaching Resources.

Buboz, M. & Sontag, M. S. (1993). Human Ecology Theory. In P. Boss, W. Doherty, R.
LaRossa, W. Schumm, & S. Steinmetz (Eds) Sourcebook of family theories and
methods: A contextual approach. New York: Plenum.

133

Bulger, M. W., Wandersman, A., & Goldman, C. R. (1993). Burdens and gratifications of
caregivng: Appraisal of parental care of adults with schizophrenia.
The American Journal of Orthopsychiatry, 63 (2), 255-265.

Burgener, S. (1994). Caregiver religiosity and well-being in dealing with Alzheimer’s
dementia. Journal of Religion and Health, 33, 175-189

Chan, J. B., & Sigafoos, J. (2004). Does respite care reduce parental stress in families
with developmental disabled children?
Child and Your Care Forum, 30 (5), 253-263.

Chang, B., Noonan, A. E. & Tennstedt, S. L. (1998). The role of religion/ spirituality in
coping with caregiving for disable elders. The Gerontologist ,3 8, 467-470

Chiu, M. Y. L. (2002). Formal and informal help-seeking of Chinese families in Hong
Kong new town. Journal of Social Work and Social Policy, 6, 221-240.

Chiu, M. Y. L. (2004). Why Chinese women did not seek help: A cultural perspective on
the psychology of women. Counseling Psychology Quarterly, 17, 155-166.

Chou, Y. C., Lin, L.C., Chang, A.L., Schalock, R. (2006). The quality of life of family
caregivers of adult with intellectual disabilities in Taiwan.
Journal of Applied Research in Intellectual Disabilities, 18, 17-26.

Chou, Y. C. & Palley H. A. (1998). The impact of having a child with developmental
disabilities on the family in Taiwan: Cultural context review.
Social Development Issues, 20, 35-52.

Cox, A., Rutter, M., Yule, W., & Quinton, D. (1977). Bias resulting from missing
information: Some epidemiological findings.
British Journal of Preventive and Social Medicine, 31, 131-136.

Cummins, R. A. (1997a). Assessing quality of life. In R. I. Brown (Ed.), Quality of life
for people with disabilities.“ Model, research, and practice (pp. 116-150).
Gheltenham, UK Stanley Thomes.

Dreer, L. E., & Elliott, T. R. (2007). Family caregivers of persons with Spinal Cord Injury:
Predicting caregivers at risk for probable depression.
Rehabilitation Psychology, 52 (3), 351-357

Dunn M, Burbine T, Bowers C, Tantleff-Dunn, S (2001). Moderators of stress on parents
of children with autism. Community Mental Health Journal, 37, 39-52.

Dunn, J ., Slomkowski, C. & Beardsall, L. (1994). Sibling relationship from the preschool

period through middle childhood and early adolescence.
Developmental Psychology, 30, 315-324.

134

Duvdevany, I., & Abboud, S. (2003). Stress, social support and well-being of Arab
mothers of children with intellectual disability who are served by welfare services
in northern Israel. Journal of Intellectual Disability Research, 47, 264-272.

Dyson, L. (1991). Families of young children with handicaps: Parental stress and family
functioning. American Journal on Mental Retardation, 95, 623-629.

Eklund, M & Backstrom, M (2005). A model of subjective quality of life for outpatients

with schizophrenia and other psychoses.
Quality of Life Research, 14(4), 1 157-1168

Essex, E. L., Seltzer, M. M., & Krauss, M. W. (1997). Residential transitions of adults
with mental retardation: Predictors of waiting list use and placement. American
Journal on Mental Retardation, 101, 613-629.

Feather N. T. (1990). The psychological impact of unemployment. New York,
Springer-Verlag.

Felce, D., & Perry, J. (1995). The extent of support for ordinary living provided
in staffed housing: The relationship between staffing levels, resident
characteristics, staffzresident interactions and resident activity patterns.
Social Science and Medicine, 40(6), 799-810.

F errans, C .E. (1996). Development of conceptual model of quality of life.
Scholarly Inquiry for Nursing Practice, 10(3), 293-304.

F indler, L. S., (2000). The role of grandparents in the social support system of mothers
with physical disability. Families in Society, 81, 370-381.

Flortzn, V., & F indler, L. (2001). Mental health and marital adaptation among mothers of
children with cerebral palsy. American Journal of Orthopsychiatry. 71, 358-367.

Floyd, J. F. & Zmich, D. E. (1991). Marriage and the parenting partnership: Perceptions
and interactions of parents with mentally retarded and typically developing
children. Child Development, 62, 1434-1448.

Garwick A. W., Kohrman, C. Wolman, C. & Blum, R. W. (1998). Families’
recommendations for improving services for children with chronic conditions.
Archives of Pediatrics and Adolescent Medicine, 152, 440-448.

Gildden. L. M.m Kiphart, M. J., Willoughby, J. C., & Bush, B. A. (1993). Family
functioning when raising children with developmental disabilities. In A. P.
Tumbull, J. M. Patterson, S. K. Behr, D. L., Murphy, J. G Marguis, & M J.
Blue-Banning (Eds), Cognitive coping, families, and disability (pp. 183-194).
Baltimore, Brookes.

135

Glozman J. M. (2004). Quality of life of caregivers.
Neuropsychology Review, 14 (4), 183-196.

Goode, KT., Haley, WE., Roth, DL., and Ford, GR. (1998). Predicting longitudinal
changes in caregiver physical and mental health: A stress process model.
Health Psychology, 17,190-198.

Grant, G., Pamcharan, P., Mcgrath, M., Nolan, M. & Keady, J. (1998). Rewards and
gratifications among family caregivers: Towards a refined model of caring and
coping. Journal of Intellectual Disability Research, 42, 58-71.

Gray, D. E. (1993). Perceptions of stigma: the parents of autistic children.
Sociology of Health & Illness 15, 102-120.

Gray, D. E. (1994). COping with autism: stress and strategies.
Sociology of Health and Illness, 16, 275-300.

Gray, D. E. (2003). Gender and coping: The parents of children with high functioning
autism. Social Science and Medicine, 56, 631-642.

Green, S. E. (2003). “What do you mean what’s wrong with her?”: stigma and the lives of
families of children with disabilities. Social Science & Medicine 57, 1361-1374.

Greenberg, J. S., Greenley, J. R., McKee, D., Brown, R., & Griffin-France”, C. (1993).
Mothers caring for an adult child with schizophrenia.
Family Relations, 42, 205-211.

Greenberg J. S., Seltzer M.M., & Greenley, J. R. (1993). Aging parents of adults with
disabilities: The gratifications and frustrations of later-life caregiving. The
Gerontologist, 33 (4), 542-550.

Greenberg J. S., Seltzer M.M. Krauss M. Y. & Kim H. (1997). The differential effects of
social support on the psychological well-being of aging mothers of adults with
mental illness or metal retardation. Family Relations, 46, 383-394

Greenberg J. S., Seltzer M.M., Krauss M. W., Chou, R. J ., & Hong, J. (2004). The effect
of quality of the relationship between mothers and adult children with disabilities:
The mediating role of optimism.
American Journal of Orthopsychiatry, 74, 14-25

Greer, F. A., Grey, 1. M., & Mcclean, B. (2006). Coping and positive perceptions in Irish
mothers of children with intellectual disabilities.
Journal of Intellectual Disabilities, 10, 231-248.

Griffore, R. J. & Phenice, L. A. (2001). The language of human ecology: A general
systems perspective. Kendall/ Hunt Publishing Company.

136

Guethmundsson, OO, Tomasson, K (2002). Quality of life and mental health of parents of
children with mental health problems. Nord Journal of Psychiatry 56, 413-417.

Gupta, A., & Singhal, N. (2004). Positive perceptions in parents of children with
disabilities. Asia Pacific Disability Rehabilitation Journal, 15, 22-35.

Gupta, A., & Singhal, N. (2005). Psychosocial support for families of children with
autism. Asia Pacific Disability Rehabilitation Journal, 16, 62-83.

Guralnjck, M. J ., (Eds). (1997). The eflectiveness of early intervention.
Brookes, Baltimore.

Hakan T., Halil U., F iliz T., & Siren K. (2004). Quality of life of primary caregivers of
children with cerebral palsy: a controlled study with Short Form-36 Questionnaire.
Developmental Medicine & Child Neurology 46, 646-648

Hagerty, M. R., Cummins, R. A., F erriss, A. L., Land, K., Michalos, A.C., Peterson, M.,
Sharpe, A., Sirgy, M J ., &Vogel, J. (2001). Quality of life indexes for national
policy: Review and agenda for research.

Social Indicators Research, 55 (1), 58-70.

Haley, W.E., Gitlin, L. N., Wisniewski, S. R., Mahoney, D. F., Coon, D. W., Corcoran, M.,
Schinfeld, S., & Ory, M. (2004). Well-being, appraisal, coping in
African-American and Caucasian dementia caregivers: Findings from the REACH
study. Aging and Mental Health, 8, 316-329.

Hanson M. J ., & Hanline M. F. (1990). Parenting a child with disability: A longitudinal
study of parental stress and adaptation.
Journal of early Intervention, 14, 234-248.

Hastings R. P. (1997). Grandparents of children with disabilities: A review. International
Journal of Disability, Development and Education, 44, 329-340.

Hasting, R. P. & Brown, T. (2002). Behavior problems of children with autism, parental
self-efficacy, and mental health.
American Journal on Mental Retardation, 107(3), 222-232.

Hastings R. P. (2003). Child behavior problems and partner mental health as correlated of

stress in mothers and fathers of children with autism.
Journal of Intellectual Disability Research, 47, 231-23 7.

Hastings, R.P., Kovshoff, H., ward, N. J ., Espinosa, F. D., Brown, T., Remington, B.
(2005). Systems analysis of stress and positive perceptions in mothers and fathers
of preschool children with autism.

Journal of A utism and Developmental Disorders, 35, 63 5-644.

137

Haas, B. K. (1999a). A multidisciplinary concept analysis of quality of life.
Western Journal of Nursing Research, 21(6), 728.

Hawthorne G, Richardson J, & Osborne R. (1999). The Assessment of Quality of Live
(AQoL) Instrument: A psychometric measure of health-related quality of Life.
Quality Life Research 8 (3), 209-224.

Heflinger,C. A., & Taylor-Richardson, K. D. (2004). Caregiver strain in families of
children serious emotional disorders: Does relationship to child make a difference?
Journal of Family and Social Work, 8(1), 27-45.

Heller T., & Factor, A.(1993). Aging family caregivers: Support resources and changes in
burden and placement desire.
American Journal on Mental Retardation, 98, 417-426.

Heru, AM., Ryan, CE., & Vlastos, K., (2004). Quality of life and family functioning in
caregivers of relatives with mood disorders.
Journal of Psychiatry Rehabilitation, 28, 67-71.

Ho, D. Y. F. (1976). On the concept of face. American Journal of Sociology, 81, 867-884.
Hodapp, R.M., Dykens, E.M., Evans, D. W., & Merighi, J. R. (1992). Maternal emotional

reactions to young children with different types of handicaps.
Developmental and Behavioral Pediatrics, 13, 118-123.

Holahan, C. J., & Moos, R. H.(1982). Social support and psychological distress: A
longitudinal analysis. Journal of Abnormal Psychology, 90, 365-370.

Holroyd, E. E. (2003). Chinese cultural influences on parental care-giving obligations
toward children with disabilities. Qualitative Health Research, 13, 4-19.

Homby, G., & Ashworth, T. (1994). Grandparents’ support for families who have children
with disabilities. Journal of Child and Families Studies, 3, 403-412.

Howlin P, Goode S, Hutton, J ., Rutter M (2004). Adult outcome for children with autism.
Journal of Child Psychology Psychiatry 45, 212-229

Hsu, H.C., & Shyu, Y. I. L. (2003). Implicit exchanges in family caregiving for frail
elders in Taiwan. Qualitative Health Research, 13, 1078-1093.

Janse, A.J., Gemke, R.J., Uiterwaal, C.S., Tweel, I van der., Kimpen, J .L., and Sinnema,
G. (2004) Quality of life: Patients and doctors don't always agree: a meta-analysis.
Journal of Clinical Epidemiology, 57(7), 653 - 661.

Judd, C.M., & Kenny, D. A. (1981). Process analysis: Estimating mediation in treatment
evaluations. Evaluation Review, 5, 602-619.

138

Kaye, J ., & Robinson, K. M. (1994). Spirituality among caregivers.
Journal of Nursing Scholarship, 26, 218.

Koenig, H. G, McCullough, M. E., & Larson, D. B. (2001). Handbook of religion and
health. Oxford: University Press.

Kleinman, A. (1994). Health andsocial change in international perspective. Boston,
Mass: Harvard University Press.

Lam, L. W. & Mackenzie, A. (2002). Coping with a child with Down’s Syndrome: The
experiences of mothers in Hong Kong. Qualitative Health Research 12, 223-237.

Lawton MP, Kleban MH, Moss M, (1989b). Measuring caregiving appraisal.
Journal of Gerontology, 44 (3), 61-71.

Lawton, M. B, Moss, M., Kleban, M. H., Glicksman, A., & Rovine, M. (1991). A
two-factor model of caregving appraisal and psychological well-being.
Journal of Gerontology: Social Sciences, 46, 181-189.

Lazarus, R. S., & Folkman, S. (1984). Stress, appraisal and coping. Springer Publishing
Company, New York.

Lecavalier, L., Leone, 8., & Wiltz, J. (2006). The impact of behavior problems on
caregiver stress in young people with autism spectrum disorders.
Journal of Intellectual Disability Research, 50, 172-183

Lefley, H. (1997). Synthesizing the family caregiving studies: Implications for service
planning, social policy, further research. Family Relations, 46, 443-450.

Lewellyn, G, McConnell, D. & Bye, R. (1998). Perception of service needs by parents
with intellectual disability, their significant others and their service. Research in
Developmental Disabilities, 19, 245-260.

Little, R. J. A. and D. B. Rubin (1987). Statistical analysis with missing data. John Wiley
& Sons, New York.

Lim, J W., & Zebrack, B. (2004). Caring for family members with chronic physical
illness: A critical review of caregiver literature.
Health and Quality of Life Outcomes, 2, 50-62

Link, B. G, Struening, E. L., Neesetodd, S. (2001). The consequences of stigma for the
self-esteem of people with mental illnesses.
Psychiatric Services, 52, 1621- 1626.

139

Mak, W. 8., Ho, A.H. Y., Law, R. W. (2007). Sense of coherence, parenting attitudes and
stress among mother’s of children with autism in Hong Kong.
Journal of Applied Research in Intellectual Disabilities, 20, 157-167.

McCubbin, MA. (1989). Family stress and family strengths: A comparison of single-and
two-parent families with handicapped children.
Research in Nursing & Health, 12, 101-110.

McCubbin, H., Thompson, A., & McCubbin, M. (1996). Family Assessment: Resiliency,
coping, and adaptation-inventories for research and practice. Madison. WI:
University of Wisconsin System.

Maehida, S., Taylor, A. R., & Kim, J. (2002). The role of maternal beliefs in predicting
home learning activities in Head Start families. Family Relations, 51,176—184.

Milgram, N. A., & Atzil, M. (1988). Parenting stress in raising autistic children.
Journal of A utism and Pervasive Developmental disorders, 19 (3), 415-424.

Miltiads, H., & Pruchno, R., (2002). The effects of religious coping on caregiving
appraisals of mothers of adults with developmental disabilities.
The Gerontologist, 42 (1), 82-91.

Mirfin-Veitch, B., Bray, A., & Watson, M. (1997). “We’re just that sort of family”:
Intergenerational relationships in families including children with disabilities.
Family Relations, 46, 305-311.

Molasion, V. A., Black, M. M., Sachs, M. L., & Smull, M. W. (1995). Services for adult
family members with mental retardation: Perceptions of accessibility and
satisfaction. Mental Retardation, 33 (3), 181-185.

Monte, G, & Halterman, J. (2007). Psychological functioning and coping among mothers
of children with autism: A population-based study.
Pediatrics, 119 (5), 1040-1046.

Morimoto, T., Schreiner, A., & Asano, H. (2003). Caregiver burden and health-related
quality of life among Japanese stroke caregivers. Age and Aging, 32, 218-223.

Nolan, M., Grant, G, & Keady, J. (1996). Understanding family care: A
Multidimensional model of caring and coping. Open University Press,
Buckingham.

Norton, P. & Drew, C. (1994). Autism and potential family stressors.
The American Journal of Family Therapy, 22, 67-76.

Olsson, M, Hwang C (2001) Depression in mothers and fathers of children with
intellectual disability. Journal of International Disability research, 45, 535-543.

140

Orsmond, G I., Seltzer, M. M., Greenberg, J. S., & Krauss, M. W. (2006). Mother-child
relationship quality among adolescents and adults with autism.
American Journal on Mental Retardation, 111, 121-137.

Ow, R. & Katz D. (1999). Family secrets and the disclosure of distressful information in
Chinese families. Families in Society 80, 620-628.

Ow, R., Tiong, N., & Goh, S. (2004). Diverse perceptions of social support: Asian
mothers of children with intellectual disability.
Families in Society, 85, 214-220.

Pargament, K. 1., Ensing, D. S., Falgout, K., Olsoen, H., Reilly, B., & Haitsma, H. Van.
(1990). God helps me: Religious coping efforts as predicators of the outcomes to
significant life events. American Journal of Community Psychology, 8, 793-825.

Pargament, K. 1., Smith, B. W., Koenig, H. G, & Perez, L. (1998). Patterns of positive
and negative religious coping with major life stressors.
Journal for the Scientific Stuay of Religion, 37, 519-543.

Patterson, J. M. (2002). Integrating family resilience and family stress theory.
Journal of Marriage and Family, 64, 349-360.

Patterson, J. M. (2002b). Understanding family resilience.
Journal of Clinical Psychology, 58(3), 233-246.

Pearce, L. D., & Axinn, W. (1998). The Impact of Family Religious Life on the quality of
Mother-child Relations. American Sociological Review, 63, 810-828.

Penning. M. J. (1995). Cognitive impairment, caregiver burden, and the utilization of
home health services. Journal of Aging and Health, 7, 233-253.

Perlick, D. A., Rosenheck, R. A., Clarkin, J .F. (2001). Adverse effects of perceived
stigma on social adaptation of persons diagnosed with bipolar affective disorder.
Psychiatric Services, 52, 1627-1632.

Pearline, L. I., Mullan, J. T., Semple, S. J., and Skaff, M. W. (1990). Caregiving and the
stress process: An overview of concepts and their measures.
Gerontologist, 34, 538-594.

Pisula, E. (2003). Parents of children with autism-review of current research.
Archives of Psychiatry and Psychotherapy 5, 51-63.

Powers, L. E., (1993). Disability and grief: From tragedy to challenge. In G. H. S. Singer
& L. E. Powers (Eds). Families, disability, and empowerment: Active coping
skills and strategies for family interventions (pp. 119-148). Baltimore, MD:
Brookes.

141

Pruchno, R. A., Patrick, J .H., Burant, C.J. (1997). African American and White mothers
of adults with chronic disabilities: Caregiving burden and satisfaction.
Family Relations, 46, 335-346.

Pruchno, R. A. (2003). Enmeshed lives: Adult children with developmental disabilities
and their aging mothers. Psychology and Aging, 18, 851-857.

Rabins, P. V., Fitting, M. D., Eastham, J., & Fetting, J. (1990). The emotional aspect of
caring for the chronically ill. Psychosomatics, 31, 331-336.

Randall, P. E. & Parker, J. (1999). Supporting the families of children with autism.
Chichester: John Wiley, 1999

Raina, P., O’Donnell, M., Schwellnus, H., Rosenbaum, P., King, G Brehaut, J., Russell,
D., Swinton, M., King, S., Wong, M., Walter, S. D., & Wood, E. Caregiving
process and caregiver burden: Conceptual models to guide research and practice.
BMC Pediatrics, 4, 1-13

Raphael, D., Renwick, R. Brown, I. & Rootman, I. (1996). Quality of life indicators and
health: Current status and emerging conceptions.
Social Indicators Research, 39, 65-88.

Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality- of -1ife
appraisal: Implications of findings from studies of response shift.
Health and Quality of Life Outcomes, 2, 14-26.

Reilly K. O. & Conliffe C. (2002). Facilitating future planning for aging adults with
intellectual disabilities using a planning tool that incorporates quality of life
domains. Journal of Gerontological Social Network, 37, 105-119.

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, 422-436.

Roberto, K. A. (1993). Family caregivers of Aging Adults with disabilities, in The Elderly
Caregiver, K. A. Roberto (Ed), Sage Publishing, Newbury Park, California,
pp.3-18, 1993.

Rodrigue. J. R., Morgan S. B., Geffken, G (1990). Families of autistic children:
Psychological functioning of mothers.

Journal of Clinical Child Psychology, 19 (4) , 371-379.

Rogers—Dulan, J. (1998). Religious Connectedness among Urban African American
Families Who Have a Child with Disabilities. Mental Retardation, 36, 91-103.

142

Rogerson, R., Findlay, A., Paddison, R. & Morris, A. (1996). Class, consumption and
quality of life. Progress in Planning, 45, 1-66

Rosenfield, S. (1997). Labeling mental illness: the effects of received services and
perceived stigma on life satisfaction. American Sociological Review, 62, 660-672.

Sales, E. (2003). Family burden and quality of life.
Quality of Life Research, 12, 33-41.

Salts, C. J., Denham, E., & Smith, T. A. (1991). Relationship Patterns and Role of
Religion in Elderly Couples with Chronic Illness.
Journal of Religious Gerontology, 7, 41-54.

Sandler, A. G, Warren, S. H., Raver, S. A. (1995). Grandparents as a source of support for
parents of children with disabilities: A brief report.
Mental Retardation, 33, 248-250.

Schal, C. (2000). Families perspectives on raising a child with autism.
Journal of Child and Family Studies, 9 (4), 409-423.

Schalock, R. L. (2000). Three decades of quality of life.
Focus on Autism and Other Developmental Disabilities, 15, 116-127.

Schene, A. H. (1990). Objective and subjective dimensions of family burden.
Social Psychiatry and Psychiatric Epidemiology, 25 (6), 289-297.

Schieve, L. A., Blumberg, S. J ., Rice, C., Visser, S. N. & Boyle, C. (2007). The
relationship between autism and parenting stress. Pediatrics, 119, 114-121.

Schopler, E. Reichler, R. J. & Renner, B. R. (1988). The Childhood Autism Rating Scale.
Western Psychological Services, Los Angeles, CA.

Schreibman L (2000). Intensive behavior/psychoeducational treatments for autism:
research needs and future directions.
Journal of A utism and Developmental Disorder; 30,3 73-3 78.

Schreibman, L & Anderson, A (2001). Focus on integration: the future of the behavior
treatment of autism. Behavior Therapy, 32, 619-632.

Scorgie, K. & Sobsey, D. (2000). Transformational outcomes associated with parenting
children who have disabilities. Mental Retardation, 38, 195-206.

Scorgie, K., wilgosh, L. & Mcdonald, L. (1999). Transforming partnerships: Parent life

management issues when a child has mental retardation. Education and Training
in Mental Retardation and Developmental Disabilities, 34, 395-405.

143

Seltzer, M. M. & Krauss, M .W. (1989). Aging parents with adult mentally retarded
children: family risk factors and sources of support.
American Journal of Mental Retardation 94 (3), 303-312.

Seltzer, G., Begun, A., Seltzer, M., & Krsuss, M. (1991). Adults with mental retardation
and their aging mothers: Impact of siblings. Family Relations, 40, 310-317.

Seligarn, M. (1991). Grandparents of disabled children: Hopes, fears, and adaptation.
Families in Society, 72, 147-152.

Shek, D. T. L. & Cheung, C. K. (1990). Locus of coping in a sample of Chinese working
parents: Reliance on self or seeking help from others.
Social Behavior and Personality, 18, 327-345.

Shields, J. (2001). The NAS EarlyBird Programme: partnership with parents in early
intervention. National Autism Society. 5, 49-56.

Shrout, P. E., & Bolger, N. (2002). Mediation in experimental and nonexperimental
studies: New procedures and recommendations.
Psychological Methods, 7, 422-445.

Shu, B. C., Hsieh H. C., Hsieh S. C., & Li S. M. (2001). Toward an understanding of
mothering: the care giving process of mothers with autistic children.
Journal of Nursing Research 9, 203-213.

Shu, B. C., Lung F. W. & Huang, C. (2002). Mental health of primary family caregivers
with children with intellectual disability who receive a home care programme.
Journal of Intellectual Disability Research, 46, 257-263.

Shu, B. C., & Lung F. W. (2005). The effect of support group on the mental health and
quality of life for mothers with autistic children.
Journal of Intellectual Disability Research, 49, 47-53.

Siegel, K., Revises, V. H., Houts, P. & Mor. V. (1991). Caregiver burden and unmet
patient needs. Cancer, 68, 1131-1140.

Singer, G H. S., Irvin, L K., Irvine, B., Hawkins, N. E., Hegreness, J ., & Jackson, R.,
(1993). Helping families adapt positively to disability: Overcoming
demoralization through community supports. In G H. S. Singer & L E. Powers
(Eds), Families, Disabilities, and Empowerment (pp. 67-83). Baltimore, MD.:
Paul H. Brookes Publishing Co.

Smith, G C., Fullmer, E. M. & Tobin, S. (1994). Living outside the system: an
exploration of older families who do not use day programs. In M M. Seltzer, M.
W. Krauss & M. P. Janicki (Eds) Life Course Perspective on Adult and Old Age.
American Association on Mental Retardation, Washington DC.

144

Spilker, B., and Revicki, D. A. (1999) “Taxonomy of Quality of Life.” In Quality of life
and Pharmacoeconomics in Clinical Trials. Edited by B. Spilker. Philadelphia:
Lippincott-Raven, 1999. Pages 25—32.

Stainton, T. & Besser, H. (1998). The positive impact of children with an intellectual
disability on the family. Journal of Intellectual and Developmental Disability 23,
57-70

Stocker, C. M. (1994). Children’s perceptions of relationships with siblings, friends, and
mothers: Compensatory process and links with adjustment.
Journal of Child Psychology and Psychiatry, 35, 1447-1459.

Strawbridge, W. J ., Wallhagen, M. L., Shema, S. J ., & Kaplan, G. A. (1997). New burdens
or more of the same? Comparing grandparent, spouse, and adult-child caregivers.
The Gerontologist, 37 (4), 505-510.

Struening, E. L., Perlick, D. A., Link, B. G, Hellman, F., Herman, D., & Strey, J. A.
(2001). The extent to which caregivers believe most people devalue consumers
and their families. Psychiatric Services, 52 (12), 1633-1638

Taunt, H. M. & Hastings, R. P. (2002). “Positive impact of children with developmental
disabilities on their families: A preliminary study. Education and Training in
Mental Retardation and Developmental disabilities 37, 410-420

Tausig, M. (1992). Caregiver network structure, support, and caregiver distress.
American Journal of Community Psychology, 20, 81-96.

Taylor-Richardson, K. D., Heflinger C. A., & Brown, T. N. (2006). Experience of strain
among types of caregivers responsible for children with serious emotional and
behavioral disorders. Journal of Emotional and Behavior Disorders, 14(4),

157-168.

Todd, S. & Shearn J. (1996b). Time and the person: the impact of support services on the
lives of parents of adults with intellectual disabilities.
Journal of Applied Research in Intellectual Disabilities 9, 40-60.

Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006).
Effects on parental mental health of an Education and Skills Training Program for

parents of young children with autism: A randomized controlled trial.
Journal of A merican Academy of Child and Adolescent Psychiatry, 45, 561-569.

Trute, B. & Hiebert-Murphy, D. (2002) Family adjustment to childhood developmental

disability: A measure of parent appraisal of family impacts.
Journal of Pediatric Psychology, 27 (3), 271 -280.

145

Tryte, B. (2003). Grandparents of children with developmental disabilities:
Intergenerational support and family well-being. Families in Society, 84, 119-126.

Vacca, J ., & Feinberg, E. (2000). Rules of engagement: Imitating and sustaining a
relationship with families who have mental health disorder.
Infant & Young Children, 13, 51-57.

Vedhara, K., Shanks, N., Anderson, S., & Ligthman, S. (2000). The role of stressors and
psychosocial variables in the stress process: A study of chronic caregiver stress.
Psychosomatic Medicine, 62,3 74-3 8.

Walden S., Pistrang N. & Joyce T (2000). Parents of adults with intellectual disabilities:
quality of life and experiences of caregivng.
Journal of Applied Research in Intellectual Disabilities, 13, 62-76.

Wang M., Tumbull A. P., Summers J., Little T. D., Poston D. J., Mannan H., & Tumbull
R. (2004). Severity of disability and income as predictors of parents’ satisfaction
with their family quality of life during early childhood years.

Research & Practice for Persons with Severity Disabilities, 29, 82-94.

Warfield, M.E., Krauss, M.W., Hauser—Cram, P., Upshur, C.C. & Shonkoff, J .P. (1999).
Adaptation during early childhood among mothers of children with disabilities.
Developmental and Behavioral Pediatrics, 20, 9-16.

Willoughby J. C. & Glidden L. M. (1995). Fathers helping out: Shared child care and
marital satisfaction of parents of children with disabilities.
American Journal on Mental Retardation, 99, 399-406.

Yim SY, Moon HW, Rah UW, & Lee IY (1996). Psychological characteristics of mothers
of children with disabilities. Yonsei Medical Journal, 37, 380-400.

Yirmiya N, Shaked M (2005). Psychiatric disorders in parents of children with autism: A
meta analysis. Journal of Child Psychology Psychiatry 46, 69-83.

146

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