Factors in body functions and structures dimension

Previous studies examined factors in body function and structures dimension such as child’s behavior problems, executive functioning skills, and sensory processing abilities relating to parenting stress were described as follows:

A vast amount of research examined the relationship between child’s behavior problems and parenting stress in mothers of children with ASD. Hastings (2003) found that the behavior problems of 18 autism children aged 8-17 years old was significantly associated with their maternal stress. Hastings et al. (2005) also found that the behavior problems of 48

preschoolers with autism were positively correlated with their maternal stress. The behavior

problems not only strongly positively predicted maternal stress and accounted for 37% of the variance, but also were the significant and only predictor of the maternal stress. Konstantareas and Homatidis (1989) found that autistic child’s self-abusive behavior was the best predictor of stress for mothers, followed by hyperirritability and age. Thus greater parenting stress in mothers associated with self-abusive behaviors, hyperirritable mood and older children.

Dumas et al. (1991) found that significantly higher levels of parenting stress in mothers of children with autism were associated with behavior intensity and mothers’ depressive symptoms. Tomanik (2004) investigate 60 mothers of children with PDD which aged 2 to 7 found that both child’s aberrant and adaptive behavior significantly predicted scores on the Parent Distress subscale and accounted for 32% of the variance in maternal stress. Matthew (2010) also found general difficulties with social skills and behavior problems among children with high functioning ASD were associated with higher parenting stress. However, Estes et al.

(2009) found that a stronger relationship between maternal parenting stress and child problems behaviors in the developmental delay group than in the ASD group. Estes et al.

(2009) explained that it may be additional factors such as SES, parental education, life events, spousal relationship quality, social support, and quality of education and intervention services for children had influence on parents. Konstantareas and Papageorgiou (2006) noted that higher child activity, lower flexibility, lower quality of mood, the greater the autism child’s rhythmicity in daily habits, the less rhythmicity in sleep, and the greater level in task

orientation had significantly fair to moderate positive correlation with maternal stress. In sum, general activity level and mood, along with the CARS symptom severity scores accounted for 53.6% of the total variance in maternal stress. Davis and Carter (2008) also found that ASD children’s social relatedness and dysregulation were the unique predictors of mothers’ overall parenting stress.

As for the executive functioning skills, Epstein et al. (2008) reported that among 38 mothers of school age children with Asperger’s syndrome, 92.1% rated their children as having clinically elevated levels of executive dysfunction, which were significantly correlated with mother’s total stress level.

With regard to sensory processing abilities, Konstantareas and Homatidis (1989) found that mothers of 44 children with ASD below 12-year-old were more stressed by their

children’s near-receptor preoccupations such as smelling, licking and rubbing. Epstein et al.

(2008) also reported that mothers found 82.6% of their school aged children with Asperger’s syndrome had clinically significant levels of sensory sensitivity, and it had significant correlation with mother’s total stress level. Furthermore, 78% of children according to mothers and 60% of children according to fathers had significant difficulties with sensory sensitivity. And significant relationship was noted between parenting stress and executive functioning skills or sensory processing abilities.

2.5.2 Factors in activity and participations dimension

Previous studies examined factors in activity and participations dimension such as language abilities and adaptive behavior functioning related to parenting stress were reviewed as follows:

With respect to language abilities, Konstantareas and Papageorgiou (2006) found that mothers of non-verbal children reported significantly greater stress than mothers of the verbal children. There was a negative relationship between level of functioning and total maternal stress, with the lower-functioning children being more stressful for their mothers.

Regarding adaptive behavior functioning, Honey et al. (2005) found that children’s adaptive behavior functioning measured by the VABS was significantly correlated with the stress of mothers of preschooler children with ASD, and those who had higher VABS scores reported less stress. However, Peters-Scheffer et al. (2012) found that no associations between maternal stress and children’s adaptive behavior. The difference may be because a higher proportion of participants with moderate to profound intellectual disabilities in

Peters-Scheffer et al.’s study than in Honey et al.’s study.

2.5.3 Factors in environmental dimension

Regarding child’s placement, Holroyd et al. (1975) found that mothers of

institutionalized autistic children scored higher than mothers with children at home on a few

of stress scales, and these mothers also reported more problems related to the severity of the child’s problems subscale in the Questionnaire on Resources and Stress (QRS). However, Hastings (2003) concluded that high proportion of children not living with their families did not influence parental stress or mental health. Mori et al. (2009) found that parenting stress decreased slightly when parents expected that the child would be in services such as residential care, or hospital care.

About socioeconomic status, Phetrasuwan and Miles (2009) found that mothers with lower education levels and income reported higher overall parenting stress, and mothers with higher overall or symptoms-related parenting stress reported more depressive symptoms and lower levels of well-being.

As for the family and community resources, Konstantareas and Homatidis (1989) found that mothers’ stress was negatively correlated with the degree of support they felt they had received. Honey et al. (2005) found that there were significant correlations between mothers’

stress and the helpfulness of informal social support such as acquiring social support coping, and positive reframing coping. More helpful social support sources and more use of the coping strategy were associated with lower stress level. However, Matthew (2010) found that social support didn’t moderate any of the other variables’ effect on parenting stress.

But other environmental factors such as parents raising concerns for the child’s behavior or development at an earlier age, the father less involved in parenting, parents with a positive

family history of psychiatric disorders, parents expecting a heavier dependency from the child in adult life were related to higher stress levels (Mori, et al., 2009).

2.5.4 Factors in personal dimension

With regard to age, Holroyd et al. (1975) found that four of the seven families in the younger group than none of six families in the older group were rated low stress from the study in 29 families with autistic children aged 1-18 years old. However, Osborne and Reed (2010) collected 138 parents with ASD children aged 2-year-6-month-old to 16 years old found that parental stress of the youngest age group (2- to 3-year-old) was significantly higher than three older age groups (4-6, 7-11, above 12-year-old), parental stress significantly

reduced as age increased. The discrepancy may perhaps be due to the larger sample size and larger percent (94%) completed by fathers in Osborne and Reed’s study. Besides, significant higher score in the BAS general cognitive ability score was noted in the two older groups (86-88) than in the two younger groups (57-65).

2.5.5 Factors in health condition dimension

With regard to the subtypes of ASD, Tobing and Glensick (2002) found that mothers of children with autism (n=22) reported significantly more total stress on the PSI than

PDD-NOS group (n=19). For PDD-NOS group, a significant positive correlation between

children’s age and their severity of impairment and between children’s impairment and mothers’ child-related stress were noted. But no significant relations were found between children’s severity of impairment and the various maternal stress scores in the autism group.

Tobing and Glensick explained that the statistical significance might be due to small sample size reduce statistical power and limit the study’s findings. Baker-Ericzén et al. (2005) also found that child’s cognitive functioning and symptoms of autism significantly predicted and accounted for 41% of the variance of maternal child-related stress while ASD children entering an early intervention program. But only social interaction score in Gulliam Autism Rating Scale (GARS) was a significant independent predictor of maternal stress. Mori et al.

(2009) found that mothers of Asperger’s syndrome reported significantly higher levels of parental stress than mothers of autism children. Rao and Beidel (2009) also found that parents of school age children with high function autism had significantly higher scores on the total parenting stress than the parents of children without disorder.

As to the severity of ASD, Hastings et al. (2005) found that mothers of 48 preschooler children with autism reported the severity of autism symptoms was significantly positively correlated with stress ratings, as well as the findings presented by Honey et al. (2005) that parents of children with more severe symptoms of autism reported more stress. Hoffman et al.

(2009) found that Children’s stereotyped behavior and social interaction scores were related to both child and parent domain Stress, but communication scores were not. Matthews (2010)

found that the general symptomatology for high functioning ASD was a significant predictor of parenting stress and explained 21% of the variance in parenting stress, but not all of the individual symptom variables were significant predictors.

2.6 Limitation of the previous studies

A review of the studies examining the factors related to the parenting stress in mothers of children with ASD showed several limitations as follows:

(1) Nearly a quarter of previous studies adopted participants with a wide age range (Bouma &

Schweitzer, 1990; Hastings, 2003; Hoffman, et al., 2009; Holroyd, et al., 1975; Koegel, et al., 1992; Konstantareas & Homatidis, 1989; Konstantareas & Papageorgiou, 2006; Lecavalier, et al., 2006; Osborne & Reed, 2010; Tobing & Glensick, 2002; Wolf, et al., 1989). Since

demands at different developmental stage are different, results of studies using participants from a wide age range may not be applicable to children at a specific age range such as preschoolers.

(2) Few studies (n=7) adopted preschoolers with ASD. None of them considered possible factors from the entire scope of the ICF-CY. These studies only included factors from one to four dimensions when investigating the factors associated with parenting stress (Table 2).

CHAPTER 3

PURPOSE AND HYPOTHESIS

3.1 The purpose and hypothesis of this study

The purpose of this study was twofold: (1) to investigate the factors related to the parenting stress in mothers of preschoolers with ASD using the ICF-CY framework by considering the potential factors from all dimensions of the ICF-CY, such as health condition, body function and structures, activities and participation, personal and environmental factors, and (2) to investigate the significant predictors of parenting stress in mothers of preschoolers with ASD. The knowledge of the predictors of the parenting stress in mothers of preschoolers with ASD can inform clinicians’ decision making processes to set effective goals and

appropriate treatment plans, and it also can help the government make suitable polices. Thus, our hypothesis was the potential factors from all dimensions of the ICF-CY were

hypothesized to be associated with parenting stress in mothers of preschoolers with ASD.

CHAPTER 4

METHODS

4.1 Participants

Eighty-nine 3- to 6-year-old children were recruited from developmental centers,

pediatric rehabilitation clinics, and child psychiatry and rehabilitation departments of general hospitals in Taiwan. The inclusion criteria included: (1) Children were diagnosed with autistic disorder, Asperger’s disorder, and PDD-NOS by child psychiatrist based on criteria in the DSM-IV-TR. (2) Children’s age was 3- to 6-year-old. (3) Children’s mother agreed to participate and gave the informed consent. The exclusion criteria include: (1) Children who had sensory limitations such as blindness, deafness, and severe motor limitations which hindered adequate testing were be excluded. (2) Children’s mother who can not communicate in Mandarin or Taiwanese was being excluded.

4.2 Measures (Table 3) Health condition:

The measures were chosen following the definition of each domain in the ICF-CY.

According to the ICF-CY, health condition is defined in terms of disease and severity of disease (WHO, 2007). Thus, both child’s diagnosis of ASD and its severity as measured by Childhood Autism Rating Scale (CARS) were the independent variables.

Activity and Participation dimension:

Communication (d310-d369) is defined as general and specific features of

communicating by language, signs and symbols, including receiving and producing messages, carrying on conversations, and using communication devices and techniques (WHO, 2007).

Thus, the Chinese Psychoeducational Profile-third edition (PEP-3) Expressive Language (EL) which measure a child’s ability to express himself or herself by speaking or gesturing and Receptive Language (RL) subtests which measures a child’s ability to understand spoken language (Fu, et al., 2010) through observation by researchers in evaluation room will be represented as children’s communication in activity dimension. Besides, the Vinland Adaptive Behavior Scale-Chinese version (VABS-C) Communication domain which evaluates the receptive, expressive, and written communication skills of the child (Wu, Chang, Lu & Chiu, 2004) through observation by their parents in home will be represented as participation in communication in children with ASD.

In ICF-CY, mobility (d410-d489) is defined as moving by changing body position or location or by transferring from one place to another (WHO, 2007). Therefore, the CPEP-3 Fine Motor (FM) and Gross Motor (GM) domain which assess children’s ability to control different parts of their bodies (Fu, et al., 2010) through researchers’ observation in evaluation room will be represented as children’s motor in activity dimension, and the VABS-C motor

domain which evaluated gross and fine motor skills (Wu, et al., 2004) through parents’

observation in home will be represented as participation in motor. In ICF-CY, daily living skills included self-care (d510-599), domestic life (d610-669) and community, social and civic life (d910-d999). Self-care (d510-599) is defined as caring for oneself, washing and drying oneself, caring for one’s body and body parts, dressing, eating and drinking, and looking after one’s health (WHO, 2007). Domestic life (d610-669) is defined as carrying out domestic and every day actions and tasks (World Health Organization, 2007). Community, social and civic life (d910-d999) is defined as actions and tasks required engaging in organized social life outside the family, in community, social and civic areas of life (WHO, 2007). Therefore, the VABS-C Daily Living Skills domain that measures personal behavior as well as domestic and community interaction skills (Wu, et al., 2004) will be represented as participation in daily living skills. In ICF-CY, play is labeled as recreation and leisure (d920) and is defined as engaging in any from of play, recreational or leisure activity (WHO, 2007).

Thus, the VABS-C Play and Leisure Time subdomain which measures how children play and use the their leisure (Wu, et al., 2004) will be represented as participation in play skills.

Copying (d130) in basic learning which is defined as imitating or mimicking as a basic component of learning, such as copying, repeating a facial expression, a gesture, a sound or the letters (WHO, 2007) is measured by the CPEP-3 Visual-Motor Imitation (VMI) subtest which assesses children’s ability to imitate visual and motor tasks (Fu, et al., 2010).

In ICF-CY, socialization is labeled as interpersonal interactions and relationship (d710-d799) and is defined as carrying out the actions and tasks required for basic and complex interactions with people in a contextually and socially appropriate manner (WHO, 2007). Thus, the VABS-C Socialization domain which measures children’s play and leisure time, interpersonal relationships, and various coping skills (Wu, et al. 2004) through parents’

observation in home will be represented as participation in socialization.

Body function/structure dimension:

In body functions dimension of the ICF-CY, intellectual functions (b117) are defined as general mental functions, required to understand and constructively integrate the various mental functions (WHO, 2007) and are measure by the CPEP-3 Cognitive Verbal/Preverbal (CVP) subtest which measures children’s cognition and verbal memory (Fu, et al., 2010).

Moreover, in the ICF-CY, attention functions (b140) which are defined as specific mental functions of focusing on an external stimulus or internal experience for the required of time (WHO, 2007). Emotional functions (b152) which are defined as specific mental functions related to the feeling and affective components of the processes of the mind (WHO, 2007) are measured by the Child Behavior Checklist 1.5-5 which measures children’s emotional

problems such as Emotionally Reactive, Anxious/Depressed, Somatic Complaints, and withdrawn and behavior problems such as Attention Problems (Chen, Huang & Chao, 2009).

Dispositions and intra-personal functions (b125) in the ICF-CY which are defined as

disposition to act or react in a particular way, characterizing the personal, behavioral style of an individual that is distinct from others (WHO, 2007) are measure by the Behavior Style Questionnaire-Chinese version (BSQ-C) which measures children’s temperament such as Activity level, Rhythmicity, Approachability, Adaptability, Response intensity, Mood, Persistence, Distractibility, and Threshold (Hsu, 2006). Sleep function (b134) which are defined as general mental functions of periodic, reversible and selective physical and mental disengagement from one’s immediate environment accompanied by characteristic

physiological changes (WHO, 2007) are measured by items related to sleep problems in the information questionnaire. In ICF-CY, perceptual functions (b156) in mental functions which are defined as recognizing and interpreting sensory stimuli (WHO, 2007), and sensory functions and pain (b210-b289) which are defined as the functions of the sense, seeing, hearing, tasting and the sensation of pain (WHO, 2007) are measured by the Short Sensory Profile-Chinese version (SSP-C) which measures children’s responses to sensory events in everyday life (Tseng & Cheng, 2008). Emotional functions (b152) which are defined as specific mental functions related to the feeling and affective components of the processes of the mind (WHO, 2007) are measured by the CPEP-3 Affective Expression (AE) subtest which measures the degree to which the child displays appropriate affective responses (Fu, et al., 2010). Global psychosocial functions (b122) in global mental functions which are defined as

general mental functions that lead to the formation of the personal and interpersonal skills needed to establish reciprocal social interactions (WHO, 2007) are measured by the CPEP-3 Social Reciprocity (SR) subtest which measures the social interactions between the child and others (Fu, et al., 2010).

Environmental factors:

With regard to the environmental factors, it is defined as the physical, social and

attitudinal environment in which people live and conduct their lives (WHO, 2007). In services, systems and polices (e510-e599), social dimension of the environmental factors, services are defined as providing benefits, structured programs and operations designed to meet the needs of individuals, systems are defined as administrative control and organizational mechanisms and are established by governments, and policies are defined as rule, regulations, conventions and standards established by governments (WHO, 2007). Thus, the social economic status (SES), the types, frequency and duration of the treatment in information questionnaire are represented as the social dimension of the environmental factors. Attitudes (e410-e499), the attitudinal dimension of the environmental factors, are defined as observable consequences of customs, practices, ideologies, values, norm, factual beliefs and religious beliefs (WHO, 2007). Therefore, the Parenting Stress Index-short Form which measure parenting stress based on the interrelationship between the child’s and the parents’ characteristics (Weng, 2003), the

positive Affect Index (PAI) which evaluated mother’s perceptions of positive affect with their children (Bengtson, 1990) are represented as the attitudinal dimension of the environmental factors.

Personal factors:

In ICF-CY, personal factors that are defined as contextual factors related to the individual (WHO, 2007) such as age and gender are measured by basic information questionnaire.

The measures selected according to the ICF-CY framework were listed as follows:

4.2.1. Measures administered directly to the child

4.2.1.1. Chinese Psychoeducational Profile-third edition (CPEP-3; Fu, et al., 2010) The CPEP-3 was translated from the Psychoeducational Profile-third edition (PEP-3, Schopler, Lansing, Reichler & Marcus, 2005). The PEP-3 is a standardized, norm-referenced scale, specifically designed for children with ASD, aged from 2 years to 7.5 years, to assist clinicians or educators in planning treatment or educational programs (Schopler, et al., 2005).

The PEP-3 consists of 172 items, which are combined to form 10 subtests [cognitive

verbal/preverbal (CVP), expressive language (EL), receptive language (RL), fine motor (FM), gross motor (GM), visual-motor imitation (VMI), affective expression (AE), social reciprocity (SR), characteristic motor behaviors (CMB), and characteristic verbal behaviors (CVB)] and

3 composites (communication, motor, and maladaptive behavior)(Schopler, er al., 2005).

Higher score indicated better performance or less maladaptive behaviors (Schopler, er al., 2005). The internal consistency ranges form 0.92 to 0.98 for the subtests and from 0.92 to 0.95 for the composites (Fu, et al., 2010). The inter-rater reliability ranges form 0.57 to 0.94

Higher score indicated better performance or less maladaptive behaviors (Schopler, er al., 2005). The internal consistency ranges form 0.92 to 0.98 for the subtests and from 0.92 to 0.95 for the composites (Fu, et al., 2010). The inter-rater reliability ranges form 0.57 to 0.94