1 POSITIVE PERCEPTIONS AS A MODERATOR OF PARENTING STRESS AND FAMILY FUNCTIONING AMONG PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER By SHELBY A. RUDD A THESIS PRESENTED TO THE GRADUATE SCHOOL OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE UNIVERSITY OF FLORIDA 2013
2 2013 Shelby A. Rudd
3 ACKNOWLEDGMENTS I would like to thank my family for their continual support and encouragement throughout these last two years. Their encouragement helped me throughout this process. I thank my friends and coworkers, especially Steph e nie and Taylor, for constantly nudging me towards the finish line. I would also like to thank Tyler, who sparked my passion for the Autism community and inspired this work. I would like to thank Larry Forthun and Heidi Radunovich for providing the opportunity to work with them as well as Greg Valcante with the University of Florida Center for Autism and Related Disabilities (CARD). The CARD staff was very helpful during this process. I would like to thank them for helping me with this learning experience.
4 TABLE OF CONTENTS page ACKNOWLEDGMENTS ................................ ................................ ................................ .. 3 LIST OF TABLES ................................ ................................ ................................ ............ 6 LIST OF FIGURES ................................ ................................ ................................ .......... 7 LIST OF ABBREVIATIONS ................................ ................................ ............................. 8 ABSTRACT ................................ ................................ ................................ ..................... 9 CHAPTER 1 INTRODUCTION ................................ ................................ ................................ .... 11 Purpose Statement ................................ ................................ ................................ 15 Research Question ................................ ................................ ................................ 16 Hypotheses ................................ ................................ ................................ ............. 16 2 REVIEW OF LITERATURE ................................ ................................ .................... 18 Autism Spectrum Disorders ................................ ................................ .................... 18 ASD and Parenting Stress ................................ ................................ ...................... 19 Family Stress Theory/Double ABC X Model ................................ ........................... 24 Stress and Functioning ................................ ................................ ........................... 27 Stress, Functioning, and Positive Perceptions ................................ ........................ 32 Conclusion ................................ ................................ ................................ .............. 36 3 METHODS ................................ ................................ ................................ .............. 38 Research Design ................................ ................................ ................................ .... 38 Sample ................................ ................................ ................................ .................... 38 Instrumentation ................................ ................................ ................................ ....... 39 The Parental Stress Scale ................................ ................................ ................ 39 KIPP: Kansas Inventory of Parental Perceptions ................................ ............. 41 The Family Assessment Device ................................ ................................ ....... 42 Procedure ................................ ................................ ................................ ............... 44 Analysis ................................ ................................ ................................ .................. 44 4 ANALYSIS ................................ ................................ ................................ .............. 47 Moderation ................................ ................................ ................................ .............. 51 Happiness ................................ ................................ ................................ ........ 51 Gr owth ................................ ................................ ................................ .............. 52 Closeness ................................ ................................ ................................ ......... 53
5 Post hoc Analysis ................................ ................................ ................................ ... 53 Happiness as a Mediator ................................ ................................ ........................ 56 Closeness as a Mediator ................................ ................................ ........................ 56 Growth as a Mediator ................................ ................................ .............................. 56 5 SUMMARY AND CONCLUSIONS ................................ ................................ .......... 58 Purpos e of Research ................................ ................................ .............................. 58 Results ................................ ................................ ................................ .................... 58 Discussion ................................ ................................ ................................ .............. 60 Implications ................................ ................................ ................................ ............. 67 Limitations ................................ ................................ ................................ ............... 70 Conclusion ................................ ................................ ................................ .............. 71 APPENDIX A CONSENT FORM ................................ ................................ ................................ ... 72 B SEVERITY CHECKLIST ................................ ................................ ......................... 74 C FAMILY ASS ESSMENT DEVICE ................................ ................................ ........... 76 D PARENTAL STRESS SCALE ................................ ................................ ................. 78 E KANSAS INVENTORY OF PARENTAL PERCEPTIONS ................................ ....... 80 F DEMOGRAPHIC FORM ................................ ................................ ......................... 83 REFERENCES ................................ ................................ ................................ .............. 85 BIOGRAPHICAL SKETCH ................................ ................................ ............................ 90
6 LIST OF TABLES Table page 4 1 Results of Bivariate Correlations Between All Variables ................................ ..... 49 4 2 Results of Hierarchical Regression Analyses Testing for Happiness as a Moderator ................................ ................................ ................................ ........... 52 4 3 Results of Hierarchical Regression Analyses Testing for Growth as a Moderator ................................ ................................ ................................ ........... 52 4 4 Results of Hierarchical Regression Analyses Testing for Closeness as a Moderator ................................ ................................ ................................ ........... 53 4 5 Results of Each Step of Regression Analysis to Test for Mediation ................... 55
7 LIST OF FIGURES Figure page 1 1 The Double ABC X model. ................................ ................................ ................. 13 3 1 Demographic Characteristics ................................ ................................ .............. 40
8 LIST OF ABBREVIATIONS ASD Autism Spectrum Disorder CARD Center for Autism and Related Disabilities. DSM Diagnostic and Statistical Manual of Mental
9 Abstract of Thesis Presented to the Graduate School of the University of Florida in Partial Fulfillment of the Requirements for the Degree of Master of Science POSITIVE PERCEPTIONS AS A MODERATOR OF PARENTING STRESS AND FAMILY FUNCTIONIN G AMONG PARENTS OF CHILDREN WITH AUTISM SPECTRUM DISORDER By Shelby A. Rudd August 2013 Chair: Larry Forthun Major: Family, Youth, and Community Science s With the increase in prevalence of Autism Spectrum Disorders (ASD), understanding the stress that parents of children with ASDs face and how that stress impacts the family unit has become increasingly more important. This study used the Double ABC X model (McCubbin, Sussman, & Patterson, 1983) as a theoretical guide to understanding the relationship between parenting stress and family functioning, and how positive perceptions interact with that relationship. The research question guiding do positive parental perceptions of the child function as a moderator 2) negative negative relationship with ve a significant negative
10 The participants in this study consisted of 66 parent s who attend support groups and family functioning were measured using survey ins truments. To answer hypothesis 1 through 4, bivariate correlations were run. To test hypothesis 5, multiple regression analysis was conducted. Bivariate correlations did not show support for hypothesis 1, showing that there was not a significant relations hip between parent stress and ASD severity. Bivariate correlations supported hypothes e s 2, 3, and 4. Multiple regression was run to test hypothesis 5, which showed that positive perceptions were not significant moderators mily functioning. The findings of the post hoc analysis revealed that parenting stress and family functioning w ere perception of children being a source of happiness and fulfillment showed partial mediation, and the perception of the children being a source of family strength and closeness showed full me diation. These findings are important in understanding the impact of positive perceptions on parenting stress and family functioning, having implications for future research, intervention approaches, and support group settings for parents of children with ASDs.
11 CHAPTER 1 INTRODUCTION Autism Spectrum Disorders, or ASDs, have become increasing prevalent in the United States, impacting about 1 in every 88 children and impacting boys five times more than girls (CDC, 2012; Lord & Bishop, 2010; Phetrasuwan & Miles, 2008; Manning et al., 2011). It has also increased in prevalence worldwide, crossing all ethnic, racial, social, and cultural barriers (Phetrasu wan & Miles, 2008). ASDs are diagnosed based on the criteria found in the Diagnostic and Statistical Manual of Mental Disorders, Text Revision (DSM IV TR) and the International Classification of Disease 10 (ICD 10) (CDC, 2012; Lord & Bishop, 2010). The Aut ism Spectrum currently consists of a broad range of disorders, varying in severity and symptoms, including Autistic disorder, Disorder Not Otherwise Specified (PDD NOS) (K ayfitz, Gragg, & Orr, 2010). The onset of ASD typically occurs prior to age three, impacting three specific developmental domains: social interaction, communication, and restricted, repetitive, and stereotyped patterns of behavior (American Psychiatric As sociation, 2000). ASD symptoms vary in range of severity, from mild to severe (Phetrasuwan & Miles, 2008; Itzchak, 2007). Children with ASDs may also have unusual fears, anxieties, sleep difficulties, or exhibit other maladaptive behaviors (Manning, Wainwr ight, & Bennett, 2011). Compared to families of typically developing children, and families with children with other developmental disabilities, families with children with an ASD often face complicated stressors and unique challenges in understanding and working with these children. Parents are more likely to be socially isolated and experience depression (Manning et al., 2011). Parents are also more likely to face economic challenges, while
12 also having to reduce the number of hours at work or quit their j obs to take care of their child (Lord & Bishop, 2008). As a result, parents of children with ASD have higher stress levels (Manning et al., 2011; Abbeduto et al., 2004; Sivberg, 2002; Dumas, Wolf, Fisman, & Culligan, 1991), which lead to lower levels of fa mily adaptation and functioning. For instance, one study found that family stress contributed significantly to maternal depression and poor family adaptation (Bristol, 1987). The Double ABC X model, shown in Figure 1 1 ( McCubbin, Sussman, & Patterson, 1983 ) response to crisis. It focuses on three pre crisis components: the initial stressor event, Liehr, 2003) The initial stressor event is an event which has the potential to change the how they interact correspond to how prepared the family is for a crisis (Smith & Liehr, 200 3). Once the crisis has occurred, the model proposes that family adaptation is predicated on the stressor event (a), how the family perceives the event (both c and C), the crisis (x), the resources surrounding that family (existing and new) (both b and B), and the pile up from the stressors (A)(McCubbin, Sussman, & Patterson, 1983). An important component of this model is how the family perceives the stressor, which may impact how they use their resources, how the stressors pile up, and how they adapt toget her (McCubbin et al., 1983). For example, if a family, upon learning their child is diagnosed with an ASD, believes that the situation is hopeless, they may
13 not explore the resource options they might have, and thus they may enter crisis mode. Figure 1 1 The Double ABC X model. up of stressors including: more financial other children, work, maintaining relationships, etc. If the parents continue with a negative perception, they may not have effective coping strategies, and may not seek enough support and resources to assist them. Therefore, their overall adaptation can suffer. Whereas, if they would have had more positive beliefs diagnosis, they may have been more proactive with their resources, have problem focused coping strategies, leading to reduced stress, all contributing to a better overall adaptation. In addition, some families may enter a point of post crisis, being unable to cope with the original stressor, which would cause a need for an intervention. The intervention would address how the family copes with the stressor and how to promote greater adaptation. While the pile up stressors may not be able to
14 change, such as economic challenges or other complications that come along with the stressor, other aspects of family life represented in the model could be addressed to the stressor (both c and C). Although it may be difficult for a parent to avoid a pile up of stressors when caring for a child with ASD, parents can choose among a variety of alternative perceptions. It has been shown through previous studies that parental stress is strongly associated with a negative definition or perception of the situation (Saloviita, then stress may be reduced (Saloviita et al., 2003). Saloviita et al. (2003) found that the would be the especially because it is changeable. Based on these findings, this research will focus on positive parenting the relationship between parenting stress and family adaptation. According to the Double ABC X model (Figure 1 1 adaptability in that positive perceptions may protect against stressors. Parental perceptions, as originally defined in the Double ABC X model, refer to the meaning that parents assi gn to the stressor event (Manning et al., 2010). However, as stressors continue to pile up over time, parental perceptions of the specific stressor event (e.g., child diagnosis with autism) may lead to more general cognitive beliefs about their child with autism. If those cognitive beliefs are negative, then parental stress associated with caregiving may lead to greater maladaptation. If the beliefs are positive, then parental
15 stress may have less of an influence on family maladaptive processes. For the pur pose her/his child with an ASD as being a positive contributor to their family. This definition of ld with an ASD being a source of fulfillment and happiness; having a positive influence upon them, being a source of personal growth; and a positive impact on the family, being a source of closeness and strength (Hastings, Allen, McDermott, & Still, 2002; Behr, Murphy, & Summers, 1992). For this research, positive perceptions will be examined as a moderator variable. direction and/or strength of the relation between an indepe ndent or predictor variable the intervening variable has on the relationship between the independen t and dependent variables. This study focuses on positive perceptions as a moderator in the have a significant impact, a potential point of intervention will be highlighted. Purpose Statement Parenting children with ASDs involves a un ique set of challenges, and can involve extreme levels of stress (Manning et al., 2010). According to the Double ABC X Model, the interaction between the pile up stressors and perception, coping, and resources helps to determine if there is successful fami ly adaptation (bonadaptation) (McCubbin et al., 1983). Some research has found that families with children who have ASDs show poorer adaptation, less flexibility, and less warmth and connection within the family system (Higgins, Bailey, & Pearce, 2005). Pa renting these children can cause stress
16 ABC X model predicts that If the family is unable to adapt, the o utcome of their functioning as a family can suffer. key component to understanding how families with children with ASDs are able to successfully function. Researc h Question The following research question guided perceptions of the child function as a moderator between parental stress and the Hypotheses The Double ABC X Model proposes that stress and cognitive beliefs play a role relationships between variables, t he following hypotheses were tested: Hypothesis 1: ASD severity. Hypothesis 2: negative relationship with the Hypothesis 3: negati ve relationship with the Hypothesis 4: positive
17 Hypotheses one through four test whether the variables are theoretically related to one another, consistent with the Double ABC X model. The final hypothesis tests for moderation. Hypothesis 5:
18 CHAPTER 2 REVIEW OF LITERATURE This study focuses on the parents of children with Autism Spectrum Disorders, and how positive perceptions may encourage family adaptability by buffering against parental stress. The purpose of this study is to focus on the interactions between parental perceptions, parental stress, and family functioning, using the Double ABC X model as the theoretical framework. Autism Spectrum Disorders ASDs are now a common set of developmental disorders (Lord & Bishop, 2010). For childre n to be diagnosed with Autistic Disorder, according to the DSM IV TR, deficits in social interaction need to include at least two of the following: (a) impairments involving nonverbal behaviors (e.g. eye to eye gaze, facial expressions), (b) failure in dev eloping relationships with peers, appropriate according to their development level, (c) lack of spontaneous seeking to share things with others (e.g. interests, achievements) (American Psychiatric Association, 2000). Deficits in communication need to inclu de at least one of the following: (a) delays, or lack of, spoken language, (b) impairments in the ability to hold conversations with others, (c) stereotyped and repetitive use of language and/or idiosyncratic language, (d) impairments in make believe or so cial imitative play (according to development level) (American Psychiatric Association, 2000). Also, deficits in restricted, repetitive, and stereotyped patterns of behavior need to include at least one of the following: (a) preoccupation, abnormally inten se or focused, with one or more stereotyped and restricted interests, (b) inflexibility involving specific, nonfunctional routines or rituals, (c) motor mannerisms which are stereotyped and repetitive (e.g., hand or finger flapping), (d) preoccupation with
19 objects/parts of objects (American Psychiatric Association, 2000). These criteria are and Pervasive Developmental Disorder Not Otherwise Specified. PDD NOS is also Syndrome and PDD NOS typically outnumber those with Autistic Disorder, almost 2 to 1 (Lord & Bishop, 2010). The causes of ASDs are unknown; however, there are several risk factors and characteristics that are associated with children who are on the spe ctrum. In sets of identical twins, it has been found that if one child has an ASD, then about 36 to 95% of the time, the other will be likewise affected (CDC, 2012). Also, parents with a child with an ASD has a 2 18% chance of having another child who is a lso affected (CDC, 2012). Children born to older parents also have a higher risk for ASDs (CDC, 2012). Also, it is common for ASDs to co occur with other developmental diagnoses, as well as psychiatric, neurologic, chromosomal, and genetic disorders (CDC, 2012). Environmental risk factors have been found to be linked to a higher risk of ASDs. For instance, prescription drugs if taken during pregnancy, valproic acid and thalidomide, are linked to ASD (CDC, 2012). Certain vaccines and infections before and a fter birth have been studied; however, there have not been conclusive results (CDC, 2012). ASD and Parenting Stress Parental stress associated with parenting a child with Autism Spectrum Disorders has been shown to be higher than parental stress of parents of children with other developmental disabilities and parents of typically developing children (Wolf, Noh,
20 Fisman, & Speechley, 1989; Dunn, Burbine, Bowers, & Tantleff Dunn, 2001; Manning et al., 2011). For example, a longitudinal study conducted by Estes et al. (2009) evaluated seventy four mothers and their children of preschool age, 51 of those children being diagno sed with an ASD, and 23 having developmental delays (DD) without Autism. The ASD group and DD group were matched based on non verbal mental age (Estes et al., 2009). Parents were administered measures of parenting stress, psychological distress, problem be haviors, and adaptative functioning. The first analysis was to determine whether mothers of children with ASDs and mothers of children with DD differed on levels of stress (Estes et al., 2009). Using T tests to compare the two groups, they found that moth ers of children with ASDs displayed significantly higher levels of parental stress than mothers of children with DDs (Estes et al., 2009). Mothers of children with ASDs also showed higher levels of psychological distress, determined by higher mean scores o f depression and anxiety (Estes et al., 2009). When examining the differences in child problem behaviors and daily living skills, they found that children with ASDs had higher levels of problem behaviors and lower levels of daily living skills, compared to children with DDs (Estes et al., 2009, p. 383). Results indicated that child behavior problems and parenting stress diagnosis and daily living skills were not significa psychological distress (Estes et al., 2009). This study adds to the body of knowledge supporting higher stress levels in parents of children with ASDs compared to parents of children with other developmental disabilit ies and parents of typically developing
21 children. More specifically, the higher stress levels are associated with problem Other studies have also shown a relationship between parental stress and the presence of children with ASDs in the family A study by Kasari and Sigman (1997) examin ed child interactions. They hypothesized that less responsive adult child interactions would be present with children of a more difficult temperament (Kasari & Sigman, 1997). The also expected that parental stress would be greater among parents/caregivers of children who, during adult child interactions, were least responsive (Kasari & Sigman, 1997). The study included 28 children with autism, 26 children with mental retardation, and 28 typically developing children (Kasari & Sigman, 1997). The measures of the study included the a) Autism Behavior Checklist, which includes 57 items describing symptoms of autism; b) the Behavior Style Questionnaire, containing 100 items focusing on temperament; c) the Parenting Stress Index, examining two domains of parenting st ress, child characteristics and parent characteristics; and d) adult child interactions, an observational measure (Kasari & Sigman, 1997). Results of an ANOVA found that parents perceived their children with Autism as more temperamentally difficult than c hildren with Down syndrome and non disabled children (Kasari & Sigman, 1997). Parents of children with Autism also reported higher ASD characteristics (Kasari & Sigman, 1997). Scores of parenting stress were hig hly correlated to scores of difficult temperament (Kasari & Sigman, 1997). Also, as predicted, caregivers of children with
22 Autism who perceived their child as having a more difficult temperament were observed as less engaged with their child and experience d more stress (Kasari & Sigman, 1997). Overall, this study found that parents of children with Autism have higher levels of stress and also perceive their children as more difficult compared to parents of children without Autism. Furthermore, parenting str ess may be in response to the level of engagement the parent has with the child. To further examine the association between parental stress and child ASD, Davis and Carter (2008) conducted a study on parents and toddlers. Similar to the previous studies, the researchers wanted to examine the relationship between Autistic symptoms, associated problems and behaviors, and parenting stress. However, they also wanted to examine how parents experience stress when they are adjusting to the new diagnosis and wheth er there were differences in stress levels between mothers using the Beck Anxiety Inventory (BAI; Beck et al., 1988) and the Center for Epidemiologic Studies Depression I nventory (CES D; Radloff, 1977), respectively. Parenting stress was assessed using the Parenting Stress Index Short Form (PSI SF; functioning using the Autism Diagnostic Observa tion Schedule Generic (ADOS G; Lord et al., 2000), the Autism Diagnostic Interview Revised (ADI R; Lord et al., 1994), the Mullen Scales of Early Learning (Mullen, 1995), and the Infant Toddler Social Emotional Assessment (ITSEA; Carter & Briggs Gowan, 200 6). Results added to the previous body of knowledge by highlighting that parental stress is high for parents of toddlers with Autism. This assessment of parenting stress
23 occur red during the initial diagnosis period differing from the previous research st udies. Mothers and fathers were not significantly different in stress levels and the views of their child relationship is the most stressful domain of parenting (Davis & Carter, 2008). Also, the mo st consistent predictor of parenting stress was a delay in social skills (Davis & Carter, 2008). While some differences in predictors of stress were found between mothers and fathers, overall, parenting stress was both high and consistent among both mother s and fathers of toddlers with Autism (Davis & Carter, 2008). Similar to the previous research studies mentioned, parenting stress is found to be associated with a child characteristic; skill deficit. Also, unlike the previous studies mentioned, this study assessed parenting stress during the Carter, 2008). In my research, I will be using the Paren tal Stress Scale (PSS), which aims to measure the stress levels experienced as a result of being a parent (Lessenberry & Rehfeldt, 2004). This measure is easy to administer, due to the short length, and score, as well as being significantly correlated with scores of more widely used measures, including the PSI (Lessenberry & Rehfeldt, 2004). The PSS measures a variety of emotions and role satisfaction, similar to the PSI (Berry & Jones, 1995). This scale can be used with parents of children with development al disabilities and behavioral problems effectively; having the ability to isolate the stress associated with the parenting role and examining that stress (Lessenberry & Rehfeldt, 2004). The PSS has advantages over other measures of parenting stress in tha t it measures the specific
24 construct of stress, while the PSI has been criticized for not doing so adequately (Berry & Jones, 1995). Family Stress Theory/Double ABC X Model Previous research has found an association between parenting stress and the child diagnosis of ASD and associated characteristics. Family Stress Theory suggests that a stressor not only impacts the parents (Estes et al., 2009; Kasari & Sigman, 1997; Davis & Carter, 2008), but also may be associated with less adaptive family functioni ng. Family Stress Theory is a middle range theory that was developed by Reuben Hill, after began as the ABC X family crisis model, which focused on three components: a stressor (Smith & Liehr, 2003). These components interact to determine how prepared a family is for a crisis (Smith & Liehr, 2003). The theory later evolved to examine t he revised model, known as the Double ABC X model, includes the original components of the stressor event, family resources, and perceptions of stressor, and added the up of stressors, the perception of the pile up of stressors, and how the family adapts (see Figure 1 1 p. 13 ) (McCubbin, Sussman, & Patterson, 1983). Adaptation, for the purpose of this research, is defined as how well a family unit can maintain homeostasis/balance within the system (McCubbin, Sussman, & Patterson, 1983). T ability to adapt in times of crisis. First, it is assumed that families experience stressor events as a normal and natural part of life (Smith & Liehr, 2003). Second, each fam ily
25 member and unit as a whole has the ability to function and is capable of growth and (Smith & Liehr, 2003). Third, each family develops unique functions and cap abilities that foster growth, development, and protection in times of stress, which then leads to that families are able to give as well as take away from their com munity relationships and resources (Smith & Liehr, 2003). Lastly, when families are forced to change due to a stressor event, the functions of that family work towards recovering from this change and restore stability (Smith & Liehr, 2003). Although all f amilies have the ability to respond to crisis in adaptive ways, not all families adapt well to stressors. Maladaptation, according to Family Stress Theory, is es in terms of managing resources and having adequate coping skills levels of stress, negative perceptions of the child with ASD, inadequate coping skills, and lack of adequat e resources (Ramisch, 2010). Based on the Double ABC X model, an important component that differentiates adaptive from maladaptive family outcomes to stressors is the perceptions of the stressor (or pile up of stressors). When stressors are perceived more contributor of the family, the family has a higher chance of healthy adaptation. When having more negative characteristics/problem behaviors, maladaptation could be a result.
26 For example, Manning, Wainwright, and Bennett (2011) conducted a study of families with ASD children using The Double ABC X model. The researchers sought to assess the impact of Autism s everity, child problem behaviors, family resources, and cognitive reframing on parental stress and family adaptability. The study was conducted on a racially diverse group of participants (Manning, et al., 2011). Reframing, in this cognitive appraisal strategy that can lead to positive affect by Family adaptation was measured using the Relationship Dimension subscale of the Family Environment S cale (FES) (Dunst et al., 1984), and parental stress was assessed using the Parenting Stress Index Short Form (Abidin, 1995). Regression equations predicting family functioning and parental distress included the following predictor variables: family incom e, stress, autism severity, child behavior severity, informal support, coping variables, reframing, and subjective social status (Manning et al., 2011, p. 326). For family functioning and parenting distress, the variables in the model explained 28 percent and 46 percent of the variance, respectively (Manning et al., 2011, p. 327). Results specific to coping by relying on friends and family, and subjective social status were significant predictors of family functioning (Manning et al., 2011). Results also showed reframing to be a significant predictor of family functioning and parenting distress (Manning et al., 2011). Reframing was found to lead to parents having positive perceptions of their chil adaptability and lower levels of parenting stress (Manning et al., 2011). Overall, this y
27 positive family adaptation, if perceptions are more positive (Manning et al., 2011). Stress and Functioning ASD diagnosis has been found in numerous research studies (Estes et al., 2009; Kasari & Sigman, 1997; Davis & Carter, 2008). According to t he Double ABC X model, the original and pile (Smith & Liehr, 2003). It is hypothesized in this study that as parental stress increases, adaptation decreases (maladaptation), an inverse r elationship. Previously conducted research has supported this relationship between parental stress and overall adaptation. Bristol (1987) conducted a study focusing on the effectiveness of the Double ABC X model and its ability to predict successful family adaptation in families of children with Autism. She home rating of family ned the various components of the Double ABC X model and the contribution to successful family adaptation. The components included the severity of the autism, the pile up stressors, the cohesion of the family, the extent of social support, the externalizat ion of blame, the perception of the stressor, and how the family copes (Bristol, 1987, p. 471). Bristol (1987) tested four hypotheses. The first hypothesis was that the Double ABC X model would be able to predict successful adaptation in families of child ren with Autism (Bristol, 1987, p. 471). The second hypothesis was that more successful
28 adaptation would be predicted by greater family cohesion, greater accessibility to informal and formal support regarding the child with autism, and better patterns of c oping (Bristol, 1987, p. 471). The third hypothesis stated that there would be a negative relationship between successful adaptation and the pile up stressors; maternal self 1987, p. 471). The fourth hypothesis tested that the pile up stressors, resources, perceptions, and coping style would account for more variance, rather than the severity Forty five bi ological mothers of children with autism participated in this longitudinal study. Self report questionnaires were completed, followed by a scheduled home visit, when structured interviews took place. The measures included the following: the Child Autism Ra ting Scale (CARS), used to measure the stressor severity of the assess the pile up of family stressors, particularly the limitations on the family caused by m; the cohesion subscale of the Family Environment Scale, to assess the cohesion of the family; the Carolina Parent Support Scale, used to measure the Inventory for Parents used to assess coping patterns in dealing with the stress of their having a child with Autism (Bristol, 1987). Successful adaptation was measured by focusing on three f actors: depressive symptoms, martial satisfaction, and in home family adaptation (Bristol, 1987, p. 476). Depressive symptoms of the mothers were measured by the Center for Epidemiologic Studies Depression Scale. Martial
29 satisfaction was measured by the Sh ort Martial Adjustment Test, and in home family adaptation was measured by the Home Quality Rating Scale. Results indicated that the Double ABC X model is effective in examining the adaptability of a family with a child with Autism, with the stressor(s), resources, and had better coping styles, more adequate sources of informal support, and who reported happier marriages, also reported more successful adaptation (Br istol, 1987). The family stressors/pile up stressors, were found to contribute to martial adjustment, in home ratings of adaptation, and most highly influenced the prediction of maternal depression (Bristol, 1987). Negative perceptions also affected the fa perceptions, rather than the severity of the Autism (Bristol, 1987). Overall, while severity was not a significant predictor of functioning, stress, self b lame, and negative perceptions were found to be significant negative predictors of family adaptation, as assumed by the Double ABC X model (Bristol, 1987). This study supports the use of the Double ABC X having a child with Autism, and the factors that contribute to this adaptation (Bristol, 1987). Rao and Beidel (2009) examined parental stress, sibling adjustment, and family functioning and the impact that HFA has on those family factors (Rao & Beidel, 2 009, p. 439). The sample consisted of parents and siblings of 15 male children with HFA, and parents and siblings of 14 male children without a disorder, which was the control group (Rao & Beidel, 2009). Parents of children with HFA were administered an in terview; the Autism Diagnostic Interview Revised (ADI R), to measure symptoms associated with
30 DSM IV autism diagnostic criteria; the Parenting Stress Index, to measure parental stress; the Family Environment Scale, to measure family functioning; the Sympto m Checklist 90 Revised, to measure psychological problems; the Short Form 36, to measure physical and mental health; the Piers Concept Scale, to measure sibling adjustment; and finally, the Child Behavior Checklist, to assess child b ehavior problems (Rao & Beidel, 2009). Results indicated that, when comparing HFA increased parenting stress (Rao & Beidel, 2009). Total behavioral problems of the child we re also higher among children with HFA (Rao & Beidel, 2009). In addition, parents of control families (Rao & Beidel, 2009, p. 447). Similar to previous research studies, th ese results highlights the coexistence of stress and family adaptation, with the increased levels of stress and the lower levels of functioning occurring more in families of children with ASDs. The previous research studies have looked at the correlational relationship between parenting stress and family functioning, while Tonge et al. (2006) conducted a study which examines the casual relationship using an intervention study. Tonge et al. (2006)conducted a randomized controlled study, looking at the influe based parent education and behavior management (PEBM) training intervention on the mental health and adjustment of parents with preschool children recently diagnosed a diagnosis of autistic disorder, and their parents, with a total sample number of 103 parents, participated in the study (Tonge et al., 2006). The parent measures included the
31 following: the General Health Questionnaire, to measure parental mental health ; the Parenting Stress Thermometer, a measure of a general level of stress; and the Family Assessment Device (FAD), specifically the general functioning scale, measuring family function (Tonge et al., 2006). These measures were taken pre and post treatmen t, and at a 6 month follow up. The child measures included the following: the Developmental Behaviour Checklist Autism Screening Algorithm, a parent completed questionnaire of Revised, anothe r developmental measure specifically for children with Autism (Tonge et al., 2006). Participants were assigned to three different groups, the PEBM group, the PEC group (Parent Education and Counseling), and a control group. The PEBM group received a manual based education, also focusing on behavior management skills, based on multiple interventions and behavioral techniques, and treatment sessions (Tonge et al., 2006, p. 563). The PEC group included educational materials, same as the PEBM group; however, no skills training or homework were given (Tonge et al., 2006). The nonintervention control group only received three 6 month assessments (Tonge et al., 2006). Tonge et al. (2006) found that parents in the intervention groups, both the PEBM and PEC, benefit ed from an improvement of overall mental health, over a long period of time. This includes a reduction in stress, anxiety, and depression (Tonge et al., 2006). Furthermore, family functioning also showed improvement in both intervention groups, et al., 2006, p. 568). This study highlights the use of an intervention on families of children with ASDs, targeting a reduction in stress and an improvement in family
32 functioning. Also, this study showed that the improvement of overall mental health, including stress, may contribute to or coexist with an improvement in family functioning. The previous research has found the association between parenting stress and family functioni ng to be significant for families of children with ASDs (Bristol, 1987; Rao & Beidel, 2009). Parenting stress was found to be a significant negative predictor of family functioning (Bristol, 1987). Also, when using an intervention method targeting overall mental health of the parents, including stress, family functioning has been found to improve (Tonge et al., 2006). Therefore, the relationship between parenting stress and family functioning for families of children with ASDs is found to be an important ar ea of focus in aiming to improve family functioning for these families. Stress, Functioning, and Positive Perceptions The Double ABC X model illustrates the relationship that perceptions play on the relationship between the stressors and family functioning (Manning et al., 2011). In this research, it is hypothesized that, in the relationship between stress and adaptation, positive perceptions play the role of a moderator, or a protective factor. Positive parental perceptions have been found to be linked to fulfillment in parenting, sense of personal strength, family closeness, and sense of personal growth (Behr, Murphy, & Summers, 1992; Hastings et al., 2002). Therefore, the definition of the stressor event, in order to be positive, involves positive feelings studies have focused on the relationships between stress, adaptation, and perceptions. Saloviita, Italinna, Leinonen (2003) used of th e Double ABC X model to guide at the predictive power of family demands, family resources, and the family definition of
33 the situation (perception), on parental stress ( Saloviita et al., 2003). The sample included 1,115 cases, with children from 1 to 10 years old, and both of their parents (Saloviita et al., 2003). Resources and Stress, Friedrich Edition, which measures parental stress by focusing on four independent factors: Parent and Family Problems, Pessimism, Child Characteristics and Physical Incapacitation (Saloviita et al., 2003). They also looked at family demands, family adaptiv the stressor (Saloviita et al., 2003). Overall, the results indicated that parental stress was more highly predicted by how the parents defined their situations (perceptions), and their various resour the most important component that explained stress (Saloviita et al., 2003). For mothers, it was the perceived social acceptance of the child (Saloviita et al., 2003). These negative perceptions of the situation were the highest predictors of parental stress (Saloviita et al., 2003). Theref ore, perceptions impact the level of parental stress, with negative perceptions associated with higher levels of parental stress. Also, since the original trying to i In another study, Hastings et al. (2005) focused on the relationships between the child, spousal, and parent variables, looking at stress and perceptions, and overall
34 psychological functioning in families of children with ASDs. They expected to find 1) that maternal stress would be related to the mental health of their partner and the behavio ral characteristics of their child, 2) that the behavior problems of the child predict maternal stress, rather than the adaptive functioning of the child, and 3) that paternal stress her by the mental health of the mother (Hastings et al., 2005). They also looked at positive perceptions of the parents about their child, yet did not have enough previous research to make any predictions. Participants included parents (48 mothers and 41 fathers) of pre school children with autism. Six measures were used in this research; the Parent Report version of the Vineland Adaptive Behavior Scale Survey form to measure a daptive behavior in four domains: Socialization, Communication, Daily Living Skills, and Motor Skills; The Autism Screening Questionnaire to measure the severity of autistic symptoms; the tal health; the Questionnaire on Resources and Stress Friedrich short form to measure parenting stress; and the Kansas Inventory of Parental Perceptions to measure positive perceptions, using the Positive Contributions scale. Results indicated that mater nal stress was related to behavior problems in the being (Hastings et al., 2005). Overall, positive perceptions were identified; with mothers having more positive perc eptions than fathers (Hastings et al., 2005). Positive perceptions were measured using the Positive Contributions scale, which consists of
35 items focusing on the positive impact that the child has on the parent (Hastings et al., 2005). The maternal positiv e perceptions were not predicted by either child or paternal variables, thus being determined by variables that were not measured in this study (Hastings et al., 2005). Paternal positive perceptions, on the other hand, were negatively predicted by maternal depression (Hastings et al., 2005). Therefore, for fathers, positive perceptions are impacted by similar variables that impact paternal stress (Hastings et al., 2005). This aids in my research by identifying positive perceptions of parents of children wit h Autism, the differences between mothers and fathers, and what those perceptions are or are not linked to for both. Similarly, a study by Hastings, Allen, McDermott, & Still (2002) looked at the associations between parental positive perceptions related factors identified as negative (such as stress and difficulty of care) and positive (such as parenting efficacy). They also looked at whether or not positive perceptions of mothers were associated with coping strategies which focus on the positive reframing of the stressor (Hastings et al., 2002). Forty one mothers (39 biological, 2 foster) of children with intellectual disabilities participated in this study. The data was collected using self report questionnaires, with five sections: demographics, care demands for the children, family support, family coping strategies, and three subscales from the KIPP scale (Kansas Inventory of Parental Perceptions). These three subscales, to measure positive perceptions, included: source o f happiness and fulfillment subscale, source of personal growth and maturity scale, and the source of strength and family closeness scale (Hastings et al.,
36 perceptions s cores (Hastings et al., 2002), the authors found that reframing coping strategies was a significant predictor of all three positive perception domains (Hastings stress a nd parenting characteristics (Hastings et al., 2002). The findings of this study highlight the importance of intervention strategies which target an increase in positive perceptions, su ch as reframing, in order to support coping with the stressors (Hastings et al., 2002). Conclusion The overview of literature has highlighted the symptoms of ASDs and parenting stress associated with those symptoms, the relationship between stress and t he overall functioning of the family, and how parenting perceptions might play a role. Past research as shown that parenting stress was higher in families of children with Autism, compared to families of typically developing children, while the family func tioning of families with children with ASDs was more restricted. Despite these findings, positive perceptions have also been identified in parents of children with ASDs, and it may have functioning. The Double ABC X model has been found to be an effective framework when looking at the adaptability of families of children with ASDs. Using the Double ABC X model, it was found that reframing the situation (perceptions) was important in inf luencing adaptability (Manning et al., 2011). Negative perceptions have been found to be the highest predictor of parental stress (Saloviita et al., 2003). However, positive perceptions in parents of children with ASDs have been identified in previous rese arch, being highly related to factors such as parental stress and self efficacy (Saloviita et al., 2003; Hastings et al., 2005; Hastings et al., 2002).
37 The purpose of my study is to evaluate the relationship between parental stress and adaptation, and how positive perceptions may act as a protective factor, in parents of children on the Autism Spectrum. Based on previously conducted research, and the assumptions of the Double ABC X model and Family Stress Theory, I am predicting that parental stress has a significant negative adaptation. I am also predicting that the association between parental stress and family
38 CHA PTER 3 METHODS Research Design This study used a non experimental, cross sectional design. The design was non experimental because the independent variables could not be manipulated (Belli, 2008). This design was cross sectional because it took place at on e point in time, examining the correlation between two or more variables (Belli, 2008; DeVaus, 2001). make conclusions beyond the data collected and to test hypothes 111). The theoretical population for the study were families with at least one child with an ASD. The accessible population was families with at least one child with an ASD in central Florida attending CARD (Center for Autism and Relat ed Disabilities) support groups and meetings. Sample Autism and Related Disabilities). Only 66 participants returned their questionnaires with si gned consent forms; therefore, only data of those 66 participants were used. This was a nonprobability and purposive sample because it was not a random selection of participants and the sample was specific to the population of study (Trochim, 2006). Data w as collected from support group participants in the fall of 2012 and spring of 2013. Questionnaires were distributed to any participant willing and consenting to participate. While attendance is not consistent in the groups, the participants of the support groups consisted of a diverse group of parents/guardians of children with an
39 ASD. The only qualifying characteristic of participating in this research was having a child with an ASD. Dr. Greg Valcante, the director of the UF CARD, assisted me in contactin g the leaders of the groups and arranging my meeting with these support groups, including the Gainesville, Orlando, and Ocala, Florida groups. The group consisted of 66 parents, 51 females and 15 males, ranging from ages 20 to 70, with the mean age being 43.9. Their children consisted of 49 males and 16 females (1 missing gender), ages ranging from 3 to 29, with the mean age being 11.5. For parents, ethnicities consisted of Caucasian (66.7%), Hispanic (18.2%), Asian (4.5%), Black (4.5%), and Multiracial (6 .1%). The child sample ethnicities consisted of Caucasian (66.7%), Asian (4.5%), Hispanic (12.1%), Black (3.0%), Multiracial (9.1%), and other (1.5%). The average annual household income (s ee demographic table, Figure 3 1 ) had a median range of 50,000 74, 999. The most commonly reported degree (34.8%) (see Figure 3 1 ). For the education of the child (see Figure 3 1 ), the most reported category was public school (63.6%). Fort y three of the parents were married, and 23 parents were single, which included divorced, separated, widowed, and other. Instrumentation The Parental Stress Scale The Parental Stress Scale was designed to measure a general sense of parental stress (Berry & Jones, 1995). This measure consists of 18 items, generated to capture 465 466). This measure taps into emotional variables, such as anxiety and guilt, role
40 satisfaction, and the concept of viewing the experience of being a parent as rewarding, by looking at intimacy and satisfaction with the child (Berry & Jones, 1995). Overall, Figure 3 1. Demographic Characteristics
41 when compared to the widely used PSI to assess its validity, this measure was significantly positively correlated to PSI scores (Berry & Jones, 1995). om this point response format, ranging from Strongly Agree to Strongly Disagree. K IPP: Kansas Inventory of Parental Perceptions The Kansas Inventory of Parental Perceptions was designed to measure the parental perceptions of parents of children with special needs (Behr, Murphy, & Summers, 1992, p. 5). The KIPP is divided into four doma ins including: Positive Contributions, Social Comparisons, Causal Attributions, and Mastery/Control (Behr et al., 1992, p. 5). Since this research was targeting positive perceptions, only the Positive Contributions subscale was used. The domain includes fo ur subscales: Source of Happiness and Love, Family Strength and Closeness, Personal Growth and Maturity, Pride and Cooperation, and Learning through Experience with Special Problems in Life (Behr et al., 1992, p. 11). Three of the subscales were used to ta positive perceptions, which were viewing their child as a source of Happiness and Fulfillment, Family Strength and Closeness, and Personal Growth. Research has used he subscales of McClean, 2006, p. 239).
42 the reliability of the KIPP. The The Source of Happiness and Fulfillment subsc correl APGAR measures family satisfaction, with viewing the family as nurturing and supportive (Behr et al., 1992). The Strength and Closeness subscale was significantly correlated with this measure. Therefore, participants who reported their child as contributing to their family being stronger and close also reported greater family satisfaction (Behr et al., 1992). 31). The response format for these items consists of a four point scale, ranging from Strongly Disagree, Disagree, Agree, and Strongly Agree. To score these items, the responses were assigned numerical values (SD=1, D=2, A=3, SA=4) (Behr et al., 1992). Then, means for each subscale were calculated (Behr et al., 1992). Higher scores have been found to be associated with stronger parental perceptions (Behr et al., 1992, p. 18). The Family Assessment Device The Family Assessment Device was designed to measure family functioning by gathering information on different dimensions of the family system (Eps tein, Baldwin, &
43 Bishop, 1983). The development of the FAD was based on the dimensions of the McMaster Model of Family Functioning (MMFF) (Epstein et al., 1983). This model aims to describe the organizational and structural dynamics of the family, includin patterns of transactions among family members which have been found to distinguish dimensions of the model include problem solving, communication, roles, affect ive responsiveness, affective involvement, and behavior control, all of which come into play to determine the level of health in families (Epstein et al., 1983). If a family has lower levels of communication and problem solving, their health as a family ma y suffer. The FAD is made up of 7 subscales. Six of the subscales measure the six dimensions of the MMFF, while the seventh subscale, the General Functioning scale, the General Functioning scale assesses the overall sense of family functioning, it was of crisis was .890, slightly lower than reported in the literature (.92; Epstein e t al., 1983). The response format for these items consists of a four point scale, ranging from Strongly Disagree, Disagree, Agree, and Strongly Agree. To test for validity of the FAD, it was compared with two other family measures, FACES II and the Family Unit Inventory, and validity correlations were significant (Ridenour, Daley, & Reich, 1999).
44 Procedure CARD support groups were identified in Gainesville, FL, Ocala, FL, and Orlando, FL. Dr. Valcante, the director of UF CARD, described the study to suppor t group leaders and asked for their permission to allow data collection prior to the planned support group. All agreed to support the data collection with their groups. I visited each group meeting, and introduced the research. Parent support group members were informed about the purpose of the study and invited to participate in the study. For those who agreed to participate, I provided a consent form, obtaining active consent. I also informed the participants that 1) participation is completely voluntary, and they can cease to participate at any point, 2) their names and responses will not be linked, keeping their identity confidential, 3) there will be no action if someone refuses to participate, and 4) there will be no incentives for participating. This study was approved by the IRB before beginning IRB protocol number 2012 U 1011 The three instruments, plus a demographic form, was handed out to willing participants, who were asked to fill out the instruments, put them back in the env elopes, and return them to me at the end of their meeting. Analysis In analyzing this data, correlations between the variables were examined. 121). Correlations between two variables, such as stress and family function, being bivariate correlations, were examined (Pallant, 2005). Through interpreting the correlations between the variables, the direction of the relationship was explored, being p ositive/negative (Pallant, 2005). Correlations are on a scale from 1 to +1, the closer to 1 indicating a stronger relationship (Pallant, 2005).
45 r with strong relationships being from .50 to 1.0 (+/ ), a medium relationship being from .30 to .49 (+/ ), and a small relationship being from .10 to .29 (+/ ) (Pallant, 2005). This value, r will be significant at a p value of less than .05 (Nardi, 2006). Bivariate correlations were used to answer the following p relationship between one continuous dependent variable and a number of independent wer several types of research questions, including whether a predictor variable is able to predict the dependent variable when another independent variable is being controlled for (Pallant, 2007). How much of the variance in the dependent variable that can be explained by the independent variable is shown using multiple regression analysis independent variable being assessed in terms of what it adds to the prediction of the all adaptation, when parental positive perceptions are a The variables were entered in blocks, which were predetermined, starting with the control variables (Pallant, 2005). The control variables in this analysis was the
46 demographic variab les; gender of parent, gender of child, marital status, and the age of the child. The next block consisted of the main effect variables. The main effect variables in this analysis were parental stress (coded as Pstress) and the different types of positive perceptions (Happiness and Fulfillment, Family Strength and Closeness, and Personal Growth). The last block consisted of the interaction terms. The interaction terms will consists of 2 way interactions between the main effect variables in the analysis. The dependent variable was family functioning (coded as HFunctioning). Values were considered significant with a p value of less than .05 (Nardi, 2006).
47 CHAPTER 4 ANALYSIS The previous chapter discussed how the data was collected and how the two hypothese s would be tested. This chapter will discuss the results of the bivariate correlations and moderation described in Chapter 3. The first research question was answered by looking at bivariate correlations. The second research question was answered by modera tion determined by regression. Table 4 1 shows the results of the bivariate correlations. Using SPSS data analysis r ). A strong relationship is represented by a coefficient between .50 to 1.0 (+/ ), a medium relationship between .30 to .49 (+/ ), and a small relationship between .10 to .29 (+/ ) (Pallant, 2005). Statistical significance was set at a p value of less than .05 (Nardi, 2006). It was found that the only significa nt relationship that a demographic variable has personal positive growth than males according to this study. H1 positive severity. Table 4 1 also provides evidence against support for hypothesis 1, which predicted that parental stress has a significant positive relationship with the severity of 4 1 there was not a significant relationship between parent ing stress and severity, r (66)= .060, ns.
48 H2 negative overall adaptive functioning. The second hypotheses predicted that parental stress has a significant negative
49 Table 4 1. Results of Bivariate Correlations Between All Variables Bivariate Correlations Variable 1 2 3 4 5 6 7 8 9 10 1. 1.0 2. .039 1.0 3. .135 .094 1.0 4. Marital Status .169 .025 .066 1.0 5. Severity of ASD .046 .132 .162 .182 1.0 6. Parent Stress .067 .043 .292* .053 .060 1.0 7. Happiness .082 .039 .238 .037 .050 .594** 1.0 8. Strength/ Closeness .143 .129 .179 .092 .089 .523** .738** 1.0 9. Growth .291* .127 .089 .010 .008 .375** .504** .621** 1.0 10. Family Functioning .075 .110 .041 .128 .127 .485** .415** .572** .213 1.0 denotes p<.05, ** denotes p<.01
50 relationship between .30 to .49 (+/ ), and a small relationship between .10 to .29 (+/ ) (Pallant, 2005). Statistical significance was set at a p value of less than .05 (Nardi, 2006). Table 4 1 summarizes the correlation coefficients between the variables used in this study, including demographic variables. As shown in Table 4 1, there was a negative correlation between parent stress and family functioning, r (66)= .485, p < .01, representing a m edium effect (Pallant, 2005). H3 negative cognitive beliefs. Table 4 1 also provides evidence in support of hypothesis 3, which predicted that parental stress has a significant negativ e perceptions (happiness, closeness, growth). As shown in Table 4 1, there was a negative correlation between parent stress and happiness, r (66)= .594, p < .01, representing a strong effect (Pallant, 2005). There was a negative correlation between parent stress and closeness, r (66)= .523, p < .01, representing a strong effect (Pallant, 2005). There was a negative correlation between parent stress and perso nal growth, r (66)= .375, p < .01, representing a medium effect (Pallant, 2005). H4 positive relationship Table 4 1 provides evidence in partial sup port of hypothesis 4, which predicted positive relationship As shown in Table 4 1, there was a positive correlation between happiness and family functionin g, r (66)= .415, p < .01, representing a medium
51 effect (Pallant, 20 05). There was also a positive correlation between closeness and family functioning, r (66)= .572, p < .01, representing a strong effect ( Pallant, 2005) Growth and family functioning had a positive correlation, but it was not significant r (66)= .213, ns (Pallant 2005) H 5 In my f ifth this, hierarchical regression was run. Moderation In Block 1, the demographic variables were entered ; gender of parent, gender of child, marital status, and the age of the child. Block 2 consisted of parental stress (Pstress) and a perception variable (i.e. Happiness, Growth, or Closeness). The interaction effect (Pstress a perception variable) was ent ered in Block 3. The dependent variable was family functioning (coded as HFunctioning). Happiness Table 4 2 summarizes the statistical analysis with Happiness as the moderator. Block 1 (model 1) included the demographic variables. The model was not signif icant, F (4, 56)= .471, Adjusted R 2 = .037, ns The Block 2 variables included parenting stress and happiness. After the Block 2 variables were entered, the adjusted R2 was .184; R 2 change= .233, F (6, 54)= 3.256, p <.05. After the Block 3 variables were e ntered, the interaction between parent stress and happiness, the adjusted R 2 was .171; explaining 17.1 per cent of the variance, R 2 change= .002, F (7, 53)=2.772, p<.05. The coefficient for the interaction term was not significant, = .277, ns
52 Table 4 2. Results of Hierarchical Regression Analyses Testing for Happiness as a Moderator Step 1 Step 2 Step 3 Variables SE SE SE .156 .151 .120 .135 .110 .138 .111 .142 .125 .126 .130 .127 Marital Status .078 .131 .094 .117 .097 .118 .005 .009 .007 .009 .007 .009 Parental Stress .439* .190 .056 .950 Happiness .174 .124 .439 .657 Parent Stress x Happiness .111 .269 R 2 .033 .266 .268 *denotes p<.05 Growth Table 4 3. Results of Hierarchical Regression Analyses Testing for Growth as a Moderator Step 1 Step 2 Step 3 Variables SE SE SE .156 .151 .139 .142 .126 .143 .111 .142 .125 .129 .142 .131 Marital Status .078 .131 .081 .118 .058 .121 .005 .009 .005 .009 .006 .009 Parental Stress .591* .179 .152 .817 Growth .007 .105 .563 .605 Parent Stress x Growth .249 .267 R 2 .033 .239 .251 *denotes p<.05 Table 4 3 summarizes the statistical analysis with Growth as the moderator. Block 1 (model 1) included the demographic variables. The model was not significant, F (4, 56)= .471, ns The Block 2 variables included parenting stress and growth. After the Block 2 variabl es were entered, the adjusted R 2 was .155; R 2 change= .206, F (6, 54)= 2.828, p<.05. After the Block 3 variables were entered, the interaction between parent stress and growth, the adjusted R 2 was .152; explaining 15.2 per cent of the variance, R 2 change= .012, F (7, 53)=2.542, p<.05. The inte raction effect in Block 3 was not significant, with a value of .705, ns
53 Closeness Table 4 4 Results of Hierarchical Regression Analyses Testing for Closeness as a Moderator Step 1 Step 2 Step 3 Variables SE SE SE .156 .151 .062 .126 .046 .129 .111 .142 .181 .117 .196 .120 Marital Status .078 .131 .054 .108 .052 .108 .005 .009 .006 .008 .007 .008 Parental Stress .286 .168 .328 .900 Closeness .428* .125 .868 .645 Parent Stress x Closeness .183 .264 R 2 .033 .374 .380 denotes p<.05 Table 4 4 summarizes the statistical analysis with Growth as the moderator. Block 1 (model 1) included the demographic variables. The model was not significant, F (4, 56)= .471, ns The Block 2 variables included parenting stress and closeness. After the Block 2 var iables were entered, the adjusted R 2 was .305; R 2 change= .342, F (6, 54)= 5.384, p<.001. After the Block 3 variables were entered, the interaction between parent stress and closeness, the adjusted R 2 was .298; explaining 29.8 per cent of the variance, R 2 c hange= .006, F (7, 53)=4.640, p<.001. The int eraction effect in Block 3 was not significant, with a value of .457, ns Post hoc Analysis Because a moderating effect of parental positive perceptions on the relationship between parental stress and family f unctioning was not supported in the research analysis, mediation was tested for follow up analysis. Mediation of the positive perception variables was assessed because the relationships between parenting stress, the positive perception variables, and famil y functioning was significant (see Table 4 1 ). Mediation could not occur without the variables being significantly related. Mediation
54 happens when the independent/predictor variable (X) has a significant association with the mediator variable (M), and M ha s a significant association with the dependent/ criterion variable (Y); thus after controlling for M, the relationship between X and Y is reduced or is no longer significant (Kenny, 2013a). Complete mediation would involve variable X no longer having an ef fect on variable Y, after variable M is controlled for (Kenny, 2013a). Partial mediation happens when there is still an effect on variable Y from X, but after controlling for variable M, the effect is reduced, but not to zero (Kenny, 2013a). Testing for me diation was conducted using multiple regression. Positive perceptions were analyzed as mediation variables, as supported by the Double ABC X model (see Figure 1 1, p. 13 ). Table 4 5 shows the results of the mediation analysis. The relationship between the predictor (X) to mediator (M) is in the first column, mediator (M) to outcome (Y) in the second column, predictor (X) to outcome (Y) in the third column, and the predictor (X) to ou tcome (Y) when the mediator (M) is controlled for is in the fourth column. The and Standard Error ( ( SE)) is reported. Columns 3 and 4, displaying the relationship between X and Y, and that relationship when the mediator (M) is controlled for, are the pr imary focus of the table, displaying mediation. The sobel test was conducted, and the purpose is to test whether a mediator carries the influence of an independent variable to a dependent variable (Preacher, 2013). The sobel test is an approximate estimate of the standard error of the paths from the independent variable to the mediator and the mediator to the dependent variable (Kenny, 2013). The demographic variables are entered into Block 1 of each model and the model was not significant, F (4, 56)= .471, ns
55 Table 4 5. Results of Each Step of Regression Analysis to Test for Mediation Predictor to Mediator Mediator to Outcome Predictor to Outcome Predictor to Outcome (mediator controlled for) (SE) (SE) (SE) (SE) Sobel (se) R 2 Happiness (positive perception) PS to HAP .597** (.166) HAP to FF .417** (.104) PS to FF .476** (.154) PS to FF .350* (.190) 2.677** (.093) .266 Strength and Closeness (positive perception) PS to CL .543** (.152) CL to FF .579** (.107) PS to FF .476** (.154) PS to FF .228 (.168) 2.981** (.105) .374 Personal Growth (positive perception) PS to GR .491** (.200) GR to FF .241 (.099) PS to FF .476** (.154) PS to FF .471** (.179) 1.729(.068) .239 and (SE) reported for each variable; *denotes p<.05, ** denotes p<.01; PS = Parenting Stress; HAP= Happiness; FF= Family Functioning; CL=Closeness; GR=Growth. When looking at the relationship between Parenting Stress (predictor) and Family Functioning (c riterion), the Block 2 variable was entered, parenting stress. Th e adjusted R 2 was .170, R 2 change= .206, F (5, 55)= 3.455, p<.05. The model was significant, with the value of .476, p<.01.
56 Happiness as a Mediator As shown in Table 4 5 all three variab les were significantly related to one another, a requirement for testing mediation. The path from Parenting Stress (PS) to Happiness (HAP) was statistically significant ( = .597), as was the path from PS to Family Functioning (FF) ( = .476). The path from HAP to FF was also statistically significant ( = .417). To demonstrate mediation, both PS and HAP were entered into a regression equation simultaneously, each predicting FF. The resulting model was significant, R 2 = .266, F (6, 54)= 3.256, p<.05, with the path from PS to FF remaining significant ( = .350), but at a reduced value (change = .126), suggesting partial mediation. The post hoc sobel test confirmed that the indirect relationship between PS HAP FF was significant. Cl oseness as a Mediator The path from Parenting Stress (PS) to Closeness (CL) was statistically significant ( = .543), as was the path from PS to Family Functioning (FF) ( = .476). The path from CL to FF was also statistically significant ( = .579). To test for mediation, both PS and CL were entered into a regression equation simultaneously, each predicting FF. The resulting model was significant, R 2 = .374, F (6, 54)= 5.384, p<.01, with the path from PS to FF not remaining significant ( = .228) suggest ing full mediation. The post hoc sobel test confirmed that the indirect relationship between PS CL FF was significant. Growth as a Mediator The path from Parenting Stress (PS) to Growth (GR) was statistically significant ( = .491), as was the path fro m PS to Family Functioning (FF) ( = .476). The path
57 from GR to FF, however, was not statistically significant ( = .241). Therefore, GR was not a significant mediator, also shown by the post hoc sobel test between PS GR FF (see Table 4 5 ).
58 CHAPTER 5 SUMMARY AND CONCLUSIONS Purpose of Research Parents of children with ASDs face unique challenges and higher levels of parenting stress than found in parents of typically developing children or children with other developmental disabilities (Mann ing et al., 2011). According to the Double ABC X model of family stress, a distressing event can lead to poor family adaptability, and this relationship can be influenced by the intervening variable of cognitive beliefs. Also, families of children with ASD s have shown lower levels of functioning, which, in part, beliefs are another component of the Double ABC X model, predicting that perceptions of the stressor situation have an impact on the level of functioning. Therefore, the purpose of this research was to examine the relationship between parenting stress and family functioning, and how this relationship is affected by the intervening variable of the beliefs, in this case positive perceptions. Positive perceptions, for the source of fulfillment and happiness; having a positive influence upon them, being a source o f personal growth; and a positive impact on the family, being a source of closeness and strength (Hastings, Allen, McDermott, & Still, 2002; Behr, Murphy, & Summers, 1992). Results Using the Double ABC X model to guide this research, relationships between the constructs of the model were examined. These constructs were the stressor (a, A), perceptions (c, C), and overall family functioning (see Figure 1 1 pg. 13 ). The stressor
59 he positive stress. This hypothesis was not supported; there was not a significant relationship between parent stress and severity. This finding implies that the degree of severity of the disorder has little impact on the stress of the parent. The Double ABC X model also focuses on the impact of parenting stress on family adaptation and functioning. This relationship was tested in Hypothesis 2. As predicted, parenting stress was negatively associated with family functioning. Therefore, as parental stress increased, family functioning decreased. This is important because parents of children with ASDs have been shown to have higher levels of parenting stress than parents of typically developing children or children with other developmental disorders (Manning et al., 2011). These higher stress levels are associated with experiencing lower levels of functioning. In addition, the Double ABC X model suggests that parental perceptions are a component which plays a role in the relationship betwe en parenting stress and family functioning, which is tested in this research. Perceptions, whether negative or positive, which contribute to how the family functions (McCub bin et al., 1983). Positive a significant negative coded as Happiness, Closeness, and Growth). This h ypothesis was supported in the research. There was a statistically significant negative correlation between parent stress and happiness, and parent stress and closeness, both having a strong effect based on
60 stically significant negative correlation between parent stress and personal growth, having a medium effect (Pallant, 2005). versa. It was also hypothesized that posi tive perceptions would have a significant positive relationship with family functioning. This was partially supported in the research. There was a significant positive correlation between happiness and family functioning, and between closeness and family f unctioning However, g rowth and family functioning had a positive correlation, but it was not significant. In the final hypothesis, hierarchical regression analysis was run to test whether amily functioning. This hypothesis was not supported by the research, as the analysis indicated that none of the perception variables were significant moderators of the relationship between parental stress and family functioning. These findings led to a po st hoc analysis family functioning. The test for mediation found that happiness and closeness positive perceptions served as mediators between parenting stress and famil y functioning. Growth was not a significant mediator. Discussion Parenting stress among parents of children with ASDs has been found to be high (Estes et al., 2009; Davis & Carter, 2008). This study examined whether or not stress was related to the severi finding is consistent with previous research, finding that the severity of the ASD was not related to par enting stress (Bristol, 1987; Estes et al., 2009); however, these findings
61 surrounding the impact of ASD severity on parents have been inconsistent in the literature (Pisula, 2011). For instance, some studies have identified child problem behavior severity identified as both internalizing (depressed and anxious) and externalizing (aggressive and noncompliant) behaviors, as being a significant contributor to parenting stress (Rao & Beidel, 2009). These problem behaviors could overlap with the severity of th e ASD, making it a challenge to differentiate between the two. Estes et al. (2009) measured both symptoms specific to ASDs (e.g. deficits in communication, socialization, daily living skills, and motor skills) and problem behaviors (e.g. irritability, soci al withdraw, stereotypic behavior, non compliance, inappropriate However, Davis and Car and emotional functioning, found that the delay in social skills and problem behaviors (including internalizing and externalizing) were significantly related to parenting stress. Therefore, an i nconsistency occurs in the literature. Severity may not have been well assessed in this study due to the composition of the sample; consisting only of parents of children with ASDs. Without a control group of parents of typically developing children, the i mpact of the severity of the ASD is difficult to gauge. Also, this study did not measure child problem behaviors along with symptom severity, limiting our understanding of what child characteristics associated with their ASD could impact parenting stress. assessed in this study. Previous research studies have supported the significant
62 influence of parenting stress on family functioning (Bristol, 1987; Rao & Beidel, 2009; Tonge et al., 2006). A significant finding of this study was the relationship between parenting stress and family functioning, being both consistent with the previous literature and the Double ABC X model. More specifically, in this study, the PSS (Berry & Jones loneliness), role dissatisfaction, and the experience of being a parent as unrewarding (Berry & Jones, 1995). Family functioning, as measured by the General Functioning Scale (Ep stein et al., 1983), gauged the overall health of the family. The results suggest negative emotions, role dissatisfaction, and unrewarding feelings, the presence of t hese distressing symptoms in the parent is associated with the overall health of the family. As summarized previously, parents with children with ASD report greater parenting stress than parents of children with other developmental disabilities (Manning et al., 2011). Although comparisons with parents with non ASD children were not a part of this study, it can be assumed that the study participants were experiencing similar amounts of parenting stress. When distressed, parents may experience greater depress ion (Bristol, 1987; Tonge et al., 2006; Manning et al., 2011) and poorer parent child communication (Kasari & Sigman, 1997; Davis & Carter, 2008), which have been associated with poorer family functioning (Bristol, 1987; Rao & Beidel, 2009). As illustrated in the Double ABC X model, perceptions have been found to be an intervening variable in the relationship between parenting stress and family functioning. important component explaining responses to stress. Negative perceptions of the
63 situation were the highest predictor of parental stress (Saloviita et al., 2003). In another study, Hastings et al. (2002) found that positive perceptions, for mothers, were significantl y related to less stress and greater parental self efficacy. Furthermore, Manning et al. (2011) found that positive perceptions were associated with better family adaptability and lower levels of parenting stress. The significant link between stress and pe rceptions is incorporated in the Double ABC X model. The Family Stress and Coping theory is comprised of family demands, family capabilities, and the appraisals they assign to their situation (Patterson, 2002). Family demands include stressors, family stra ins, and disruptions in daily life (Patterson, family does in response to the demands (Patterson, 2002). Risk factors, such as stress, can result from the family deman ds, and protective factors need to come into play to impact how the family responds, which leads to family adjustment (Patterson, 2002). (Patterson, 2002). In hope s to restore balance in the family unit when facing stressors, changing cognitive beliefs is crucial for good family adjustment (Patterson, 2002). With perceptions ca n buffer this effect. For instance, a component of parental stress is negative emotions (depression, guilt, anxiety) which can emerge in the presence of their caregiving demands. This reaction can emerge, influencing the meaning that is assigned to the dem ands, fueling negative perceptions. However, if those negative emotions are decreased, the negative perceptions would decrease, or as the cognitive beliefs are changed to more positive, the negative emotions may become less
6 4 influential, decreasing parental stress. According to this theoretical framework, the process of being able to adapt to major stressors, such as the child being diagnosed with a disorder, involves a change in prior cognitive beliefs (Patterson, 2002). Furthermore, this view emphasizes th to the meaning that is assigned to the situation, and the capability to manage stress (Patterson, 2002). Parental perceptions have also been found to be significantly linked to the nction appropriately following a stressor event. Bristol (1987) found that negative parenting perceptions had a significant inverse relationship with the perceptions rather tha n severity of the ASD. In another study, Manning et al. (2011) examined reframing, a strategy which can lead to the development of more positive perceptions, as a predictor of family functioning. They found that the reframing leads to parents having positi support more positive family adaptation (Manning et al., 2011). The current study found similar results, that each of the positive perceptions had a significant positive relationship with f amily functioning; as one increased, so did the other. While previous studies have examined the moderating effect of perceptions, none have examined the moderating effect of positive perceptions on the relationship between parenting stress and family func tioning. Research has studied similar variables as moderators of the relationship between parenting stress and various outcomes, specifically of parents of children with developmental disabilities, including ASDs. For example, Blacher and Baker (2007) foun
65 problems on parental stress in families of children with mental retardation (Blacher & Baker, 2007). Similarly, Dunn, Burbin e, Bowers, and Tantleff Dunn (2001) found that social support significantly moderated the relationship between stressors and the negative outcome of isolation (Dunn et al., 2001). Distancing as a coping style was also a significant moderator in the relatio nship between stressors and the negative outcome Therefore, this research adds to t he existing body of knowledge by looking at the moderation effect of positive perceptions on the relationship between parenting stress and family functioning, and finding that none of the three perceptions were significant moderators. The moderation effect may not have been significant for a couple of reasons, including the sample size. The lower sample size may be a statistical issue, not generating enough statistical power for significant interactions. These specific positive perceptions also may not act as protective factors between parenting stress and family functioning; however, other variables may be explored in the future, such as coping styles and social support (Dunn et al., 2001). Furthermore, moderation may not have been significant due to the hi gh associations between each of the positive perception variables as parenting stress (see Table 4 1 p. 4 9 ). Since moderation does not take into account the relationships between the predictor and intervening variable, these variables when highly linked are unable to separate in the analysis, leading to problems (Kenny, 2013). However, since the variables were so highly associated, mediation was completed as a post hoc analysis.
66 The post hoc analysis examined the mediating effect of positive perceptions on the relationship between parenting stress and family functioning. If mediation occurs, the relationship between the predictor and criterion variables should be reduced because of the mediating variable (Kenny, 2013). Because those three positive perceptio ns were not significant moderators, they were tested as mediators on the relationship between parenting stress and family functioning. Previous research has being. For instance, Hast ings and Brown (2002) examined self efficacy of parents of children with Autism and found that self efficacy was a significant mediator of the relationship perceptions of t heir child as a source of fulfillment and happiness served as a partial a source of personal growth was not a significant predictor of family functioning, that perception variable was not a significant mediator on the stress and functioning relationship. As previously discussed, parenting stress is determined by the presence of negat ive emotions, role dissatisfaction, and unrewarding feelings specific to parenting, between parenting stress is significant with the cognitive belief that the child is a s ource of happiness and fulfillment, and a source of family strength and closeness. Therefore, if the presence of negative emotions, role dissatisfaction, and unrewarding feelings are high, the cognitive beliefs that a child is source of happiness or streng th and closeness
67 health; if those beliefs are increased, family functioning may increase. The causal order of these variables aligns with the Double ABC X model, and these findings are specific to parents of children with ASD. Implications This research study has some implications for the future for families of children with ASDs. With the high levels of parenting stress that parents of children with ASDs experience (Manning et al., 2010), and the impact of the stress on how well the family functions, protecting the functioning of the family is an important focus area. This study looked at the association of positive perceptions on the relationship between the stressors of having a child with an ASD, and how the family functions, as illustra ted by the Double ABC X model. For the relationship between parenting stress and family functioning, key components involved in the measurement of those variables were identified. The parenting stress measure (PSS) assessed emotional variables (guilt, anx iety, and loneliness), role dissatisfaction, and the concept of viewing the experience of being a parent as unrewarding (Berry & Jones, 1995). The family functioning scale (General Functioning Scale; Epstein et al., 1983), gauged the overall health of the family. Therefore, negative emotions, role satisfaction, and rewarding feelings may be targeted in future research and intervention approaches, as those components are related to overall family health. The association between parenting stress and family functioning was not therefore suggest that the three positive perceptions (happiness, closeness, and
68 growth) do not serve as protective factors for the relationship between parenting stress and family functioning, specifically for families of children with ASDs. The small sample size of the study could contribute to this finding. Also, due to the high associations between each of the positive perception variables and parenting stress, this finding could have occurred, as moderation does not take into account the relationships between the predictor and intervening variables. The findings of the post hoc analysis revealed that parenting stress and family functioning wer perception of the children being a source of happiness and fulfillment showed partial mediation, and the perception of the children being a source of family strength and closeness showed fu ll mediation. The perception of the child being a source of personal growth was not a mediator, due to the relationship between that perception and family functioning not being significant. These findings provide a target for components of parenting stress and perceptions to focus on in order to improve how the family functions. By focusing on the reduction of parenting stress, the presence of positive parental perceptions could increase. Furthermore, the two positive perceptions that were found to be signi ficant mediators in the study, perceiving the child as a source of fulfillment and happiness and a source of closeness and strength, can be the focus of improving family functioning. Future research can further build on this study by examining other poten tial moderating variables for the relationship between parenting stress and family functioning. For instance, reframing as a coping strategy which leads to forming positive perceptions could be explored as a moderator, along with various other coping
69 mecha nisms in order to offer protective factors for families of children with ASDs (Dunn et al., 2001). Resources, another component in the Double ABC X model, could also be examined in a moderating role, such as social support (Dunn et al., 2001), specifically in the relationship between stress and functioning. This study is also beneficial for intervention approaches and support group settings, which was how the data for this study was gathered. Support groups which aim to target reducing parenting stress can also focus on promoting overall family health, by being a parent of a child with an ASD. From a social learning perspective, intervention strategies for reducing stre ss could include coping skills training, which involves relaxation techniques, and problem solving skills training, which involve strategies on how to deal with incoming conflicts (Kilpatrick & Holland, 2006). These strategies could help parents reduce str ess by tapping into the components that make up the stress. For instance, if parents learn relaxation techniques, the anxiety they feel (negative emotion) associated with parenting could be reduced. Since this study could not target the causal relationshi p between parenting stress and positive perceptions, it may be that targeting positive perception could also lead to a reduction in parenting stress. The Double ABC X model outlined the causal relationship presented here, however, future research could exp lore the direction of the relationship between parenting stress and positive perceptions, using a longitudinal method instead of a cross sectional. However, what this study can imply is that positive perceptions predict family functioning, while also impac ting the relationship between parenting stress and family functioning. Specifically the two perceptions found to be
70 significant mediators should be focused on in intervention strategies. Positive reframing coping strategies which focus on the beliefs that the child is a source of both happiness and family strength could be beneficial in promoting a more positive functioning for the families, allowing families to interact in healthier ways (Kilpatrick & Holland, 2006). Limitations One limitation of this st udy is the use of nonrandom selective sampling, strictly targeting parents of children with ASDs, and gathering the sample from established support groups. Another limitation is the sample size, being smaller than the ideal sample size for survey research. Also, survey research, unless conducted with ideal conditions, does not produce findings that can be generalized to the population (Sills & sample participants, ensure tha t everyone in the population has an equal chance in participating in the sample, and have everyone included in the sample respond to the survey (Sills & Song, 2002). Therefore, because the current research sample is non representative and nonrandom, the f indings cannot be generalized to the population (Sills & Song, 2002). Another limitation with survey research is the likelihood of social desirability in the they think th ey should in order to look better (Trochim, 2006). Since the surveys will be confidential, this may be less of a problem in this research; however, it is a common bias that occurs when using survey research (Trochim, 2006). This sample was comprised of s upport group participants only participating in the CARD groups. Bias could be introduced, based on the sample being made up of people who already have chosen to participate in a support group. These parents may
71 already have higher positive perceptions due to the time they have spent with their support group, which was not controlled for, potentially creating a bias in the sample. Conclusion The purpose of this study was to examine parenting stress among parents of children with ASDs, and the impact of p arenting stress, as well as positive parental perceptions, on family functioning. According to the Double ABC X Model, the interaction between the pile up stressors and perceptions help to determine if there is successful family adaptation (McCubbin et al. 1983). Guiding this research was the perceptions are not significant moderators b functioning. Moderators serve as intervening variables, which affect the strength of relationship between the independen t and dependent variables. Post hoc analysis, however, determined that positive perceptions are significant mediators between parental stress and family functioning. After controlling for the mediator variable the relationship between the independent and dependent variable can be reduc ed or is no longer significant. This occurred when controlling fo r both the happiness and the family strength /closeness parent perception variable s This research aids in our understanding of the role that both parental stress and positive perceptions of parents of children with ASDs may play in determining the s ability to function.
72 APPENDIX A CONSEN T FORM
74 APPENDIX B SEVERITY CHECKLIST (Adapted from a questionnaire taken from the Center for Autism and Related Disabilities at UF) Please answer the following questions based on the behaviors of your child with an Autism Spectrum Disorder. Answer each question by placing an ( x ) to indicate either a Yes or No response. 1. Does the child do things to injure himself or herself? Yes___ No___ 2. Does the child do things to injure others? Yes___ No___ 3. Have y Yes___ No___ 4. Has the child ever been hospitalized because of behavior? Yes___ No___ 5. Has the child been suspended or sent home from school because of behavior? Yes___ No___ 6. Does the child speak to communicate? Yes___ No___ 7. Does the child use phrases or sentences to communicate? Yes___ No___ 8. Does the child use single words to communicate? Yes___ No___ 9. Can the child communicate to indicate Yes and No? Yes___ No___ 10. Can the child communicate to ask for help? Yes___ No___ 11. Does the child seek social interaction? Yes___ No___ 12. Does the child respond to their name? Yes___ No___ 13. Do sensory problems interfere with activities for daily living?
75 Yes___ No___ 14. Does the child use the po tty during the day? Yes___ No___ 15. Does the child feed him/herself with utensils? Yes___ No___
76 APPENDIX C FAMILY ASSESSMENT DEVICE (Epstein, Baldwin, & Bishop, 1983) Instructions: This assessment contains a number of statements about families. Read each statement carefully, and decide how well it describes your own family. You should answer according to how you see your family. For each statement, there are four (4) possible responses: Strongly Agree : Check this box if you feel that the statement descr ibes your family very accurately. Agree : Check this box if you feel that the statement describes your family for the most part. Disagree : Check this box if you feel that the statement does NOT describe your family for the most part. Strongly Disagree : Check this box if you feel that the statement does NOT describe your family at all. Try not to spend too much time thinking about each statement, but respond as quickly and as honestly as you can. If you have difficulty, answer with your first reaction. Please be sure to answer every statement and mark all your answers in the space provided next to each statement. Strongly Agree Agree Disagree Strongly Disagree 1. Planning family activities is difficult because we misunderstand each other. 2. In times of crisis we can turn to each other for support. 3. We cannot talk to each other about the sadness we feel. 4. Individuals are accepted for what they are. 5. We avoid discussing our fears and concerns. 6. We can express feelings to each other. 7. There are lots of bad feelings in the family.
77 8. We feel accepted for what we are. 9. Making decisions is a problem for our family. 10. We are able to make decisions about how to solve problems. 11. 12. We confide in each other.
78 APPENDIX D PARENTAL STRESS SCALE (Berry & Jones, 1995) Instructions: This assessment contains a number of statements describing feelings and perceptions about the experience of being a parent. Read each statement carefully, and decide how well it describes your own experience being a parent. For each statement, there are four (4) possible responses: Strongly Agree : Check this box if you feel that the statement describes your experience very accurately. Agree : Check this box if you feel that the statement describes your experience for the most part. Disagree : Check this box if you feel that the statement does NOT describe your experience for the most part. Strongly Disagree : Check this box if you feel that the statement does NOT describe your experience at all. Please be sure to answer every statement and m ark all your answers in the space provided next to each statement. Strongly Agree Agree Disagree Strongly Disagree 1. I am happy in my role as a parent. 2. if it was necessary. 3. Caring for my child(ren) sometimes takes more time and energy than I have to give. 4. I sometimes worry whether I am doing enough for my child(ren). 5. I feel close to my child(ren). 6. I enjoy spending time with my child(ren). 7. My child(ren) is an important source of affection for me.
79 8. Having child(ren) gives me a more certain and optimistic view for the future. 9. The major source of stress in my life is my child(ren). 10. Having child(ren) leaves little time and flexibility in my life. 11. Having child(ren) has been a financial burden. 12. It is difficult to balance different responsibilities because of my child(ren). Please be sure to answer every statement and mark all your answers in the space provided next to each statement. Strongly Agree Agree Disagree Strongly Disagree 13. The behavior of my child(ren) is often embarrassing or stressful to me. 14. If I had it to do over again, I might decide not to have child(ren). 15. I feel overwhelmed by the responsibility of being a parent. 16. Having child(ren) has meant having too few choices and too little control over my life. 17. I am satisfied as a parent. 18. I find my child(ren) enjoyable.
80 APPENDIX E KANSAS INVENTORY OF PARENTAL PERCEPTIONS (Berry & Jones, 1995) Instructions: This assessment contains a number of statements describing the effects you believe your child has had on you and other members of your family. Read each statement carefully, and decide much you agree or disagree with each statement. The st atements are divided into parts. Each part begins with a different sentence at the top of each section. For example, the first section begins with: My Child _________ Is: All the statements in the first section complete this sentence. The blank space afte r the think only of your child with an ASD when you answer each statement. You DO NOT have to write down the name of your child in the blank. For each statement, there are four (4) possible responses: Strongly Agree : Check this box if you feel that the statement describes your experience very accurately. Agree : Check this box if you feel that the statement describes your experience for the most part. Disagree : Check this box if you feel that the statement do es NOT describe your experience for the most part. Strongly Disagree : Check this box if you feel that the statement does NOT describe your experience at all. Please be sure to answer every statement and mark all your answers in the space provided next to each statement. My Child_______ Is: Strongly Agree Agree Disagre e Strongly Disagre e 1. the reason my life has better structure. 2. why I am a more responsible person. 3. 4. responsible for my learning patience.
81 5. fun to be around. 6. kind and loving. Please be sure to answer every statement and mark all your answers in the space provided next to each statement. I Consider My Child ______ To Be: Strongly Agree Agree Disagree Strongly Disagree 1. the reason I am more productive. 2. the reason I budget my time better. 3. the reason I am able to cope better with stress and problems. 4. very affectionate. The Presence of My Child_____________: Strongly Agree Agree Disagree Strongly Disagree 1. cheers me up. 2. is very uplifting. 3. makes us more in charge of ourselves as a family. 4. helps me take things as they come. The Presence of My Child_____________: Strongly Agree Agree Disagree Strongly Disagree 1. I am grateful for each day.
82 2. our family has become closer. 3. I am more sensitive to family issues. 4. I have learned to adjust to things I cannot change. 5. I have many unexpected pleasures. 6. I am more accepting of things.
83 APPENDIX F DEMOGRAPHIC FORM Tell us about yourself and your family. ID #:__________ 1. What is your gender? ____ Male ____ Female 2. How old are you? ______ 3. What is your current marital status? ____ Divorced ____ Separated ____ Married ____ Widowed ____ Single ____ Other 4. How would you classify yourself? ____ Middle Eastern/Arab/North African ____ Asian (South Asian/East Asian) ____ Native Hawaiian/Pacific Islander ____ Black/African American/Afro Caribbean ____ Caucasian/White ____ Hispanic/Latino/Spanish ____ Indigenous or Aboriginal ____ Multiracial ____ Would rather not say ____ Other: ___________________ 5. How would you classify your child? ____ Middle Eastern/Arab/North African ____ Asian (South Asian/East Asian) ____ Native Hawaiian/Pacific Islander ____ Black/African American/Afro Caribbean ____ Caucasian/White ____ Hispanic/Latino/Spanish ____ Indigenous or Aboriginal ____ Multiracial ____ Would rather not say
84 ____ Other:___________________ 6. What is the gender of your child with an ASD? ____ Male ____ Female 7. How old is your child? _____ 8. What would you say is your average annual household income (include all sources of income)? ___ 0 10,000 ___ 10,000 19,999 ___ 20,000 34,999 ___ 35,000 49,999 ___ 50,000 74,999 ___ 75,000 99,999 ___ 100,000 149,999 ___ Over 150,000 ___ Would rather not say 9. Describe your education: ___ Less than High School ___ Graduated High School/GED ___ Some College/Special Training ___ Graduated Colleg 10. What type of school does the child attend? ___ No school ___ Home school ___ Public school ___ Private school ___ Charter school
85 REFERENCES Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M., Orsmond, G., & Murphy, M. (2004). Psychological well Down syndrome, or Fragile X syndrome. American Journal on Mental Retardation, 109 237 254. Abi din, R. R. (1990). Parenting Stress Index / Short Form Lutz, FL: Psychological Assessment Resources, Inc. Abidin, R. R. (1990). The parenting stress index short form test manual. Charlottesville: Pediatric Psychology Press. American Psychiatric Associatio n. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC: Author. Baron, R. M., & Kenny, D. A. (1986). The moderator mediator variable distinction in social psychological research: Conceptual, strategic, and sta tistical considerations. Journal of Personality and Social Psychology, 51 (6), 1173 1182. Beck, A. T., Epstein, N., Brown, G., & Steer, R. A. (1988). An inventory for measuring clinical anxiety: Psychometric properties. Journal of Consulting & Clinical Psy chology, 56 893 897. of parental perceptions. The University of Kansas 1 39. Belli, G. (2008). Nonexperimental quantitative research. In Research Essentials: An Introdu ction to Designs and Practices (ch. 4). Retrieved from http://media.wiley.com/product_data/excerpt/95/04701810/0470181095 1.pdf Blacher, J., & Baker, B. L. (2007). Positive impact of intellectual disability on families. American Journal on Mental Retardati on, 112 (5), 330 348. Bristol, M.M. (1987). Mothers of children with autism of communication disorders: Successful adaptation and the double ABC X model. Journal of Autism and Developmental Disorders, 17 (4), 469 486. Carter, A. S., & Briggs Gowan, M. J. ( 2006). Manual of the infant toddler social emotional assessment. San Antonio: Harcourt Assessment. Davis, N. O. & Carter, A. S. (2008). Parenting stress in mothers and fathers of toddlers with autism spectrum disorders: Associations with child characteristics. Journal of Autism and Developmental Disorder, 38 1278 1291. de Vaus, D. (2001). Research design in social r esearch Los Angeles, CA: SAGE.
86 Dumas, J.E., Wolf, L.C., Fisman, S.N., Culligan, A. (1991). Parenting stress, child behavior problems, and dysphoria in parents of children with autism, down syndrome, behavior disorders, and normal development. Exceptionali ty, 2 (2), 97 110. Dunn, M. E., Burbine, T., Bowers, C. A., & Tantleff Dunn, S., (2001). Moderators of stress in parents of children with autism. Community Mental Health Journal, 37 (1), 39 52. Dunst, C. J., Jenkin, V., & Trivette, C. M. (1984). Family support scale: Reliability and validity. Journal of Individual, Family and Community Wellness, 1 45 52. Epstein, N. B., Baldwin, L. M., & Bishop, D. S. (1983). The McMaster family assessment device. Journal of Marital and F amily Therapy 9 (2), 171 180. Estes, A., Munson, J., Dawson, G., Koehler, E., Zhou, X., & Abbott, R. (2009). Parenting stress and psychological functioning among mothers of preschool children with autism and developmental delay. Autism, 13(4), 375 387. Fis cher, J. & Corcoran, K. J. (2007). Measures for clinical practice and research: Couples, families, and children. New York: Oxford University Press, Inc. Itzchak, B. (2007). Cognitive behavior and intervention outcome in young children with autism. Research Developmental Disabilities, 29 (5). Greer, F. A., Grey, I. M., McClean, B. (2006). Coping and positive perceptions in Irish mothers of children with intellectual disabilities. Journ al of Intellectual Disabilities, 10 (3) 231 248. Haskett, M. E., Ahern, L. S., Ward, C., & Allaire, J. C. (2010). Factor structure and validity of the parenting stress index short form. Journal of Clinical Child & Adolescent Psychology, 35 (2), 302 312. Hastings, R. P., Allen, R., McDermott, K., & Still, D. (2002). Factors related to positive perceptions in mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities, 15 269 275. Hastings, 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., Kovshoff, H., Ward, N. J., Espinosa, F., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive percepti ons in mothers and fathers of pre school children with autism. Journal of Autism and Developmental Disorders, 35 (5), 635 644.
87 Higgins, D., Bailey, S., & Pearce, J. (2005). Factors associated with functioning style and coping strategies of families with a c hild with an autism spectrum disorder, Autism, 9 125 137. Kasari, C. & Sigman, M. (1997). Linking parental perceptions to interactions in young children with autism. Journal of Autism and Developmental Disorders, 27 (1), 39 57. Kayfitz, A. D., Gragg, M. N. & Orr, R. R. (2010). Positive experiences of mothers and fathers of children with autism. Journal of Applied Research in Intellectual Disabilities, 23 337 343. Kenny, D. A. (2013a). Mediation. Retrieved from http://davidakenny.net/cm/mediate.htm Kenny, D. A. (2013b). Moderator variables: Introduction. Retrieved from http://davidakenny.net/cm/moderation.htm Kilpatrick, A. C., & Holland, T. P. (2006). Working with families: An integrative model by level of need (4 th ed.). Boston, MA: Pearson. Lavee, Y., McCubbin, H. I., Patterson, J. M. (1985). The double ABC X model of family stress and adaptation: An empirical test by analysis of structural equations with latent variables. Journal of Marriage and Family, 47 (4), 811 825. 993). Sourcebook of marriage and family evaluation. New York: BRUNNER/MAZEL, INC. Lessenberry, B. M., & Rehfeldt, R. A. (2004). Evaluating stress levels of parents of children with disabilities. Council for Exceptional Children, 70 (2), 231 244. Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. S., Pickles, A., & Rutter, M. (2000). The autism diagnostic observation schedule generic: A standard measure of social and communication deficits associated with the spectrum of autism. J ournal of Autism and Developmental Disorders, 30 205 223. Lord, C., Rutter, M., & LeCouteur, A. (1994). Autism diagnostic interview revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental di sorders. Journal of Autism and Developmental Disorders, 24 659 685. Lord, C. & Bishop, S. L. (2010). Social policy report: Autism spectrum disorders diagnosis, prevalence, and services for children and families. Sharing Child and Youth Development Knowledge, 24 (2), 1 27.
88 Manning, M. M., Wainwright, L., & Bennett, J. (2011). The double ABC X model of adaptation in racially diverse families with school age children with autism. Journal of Autism and Developmental Disorders, 41 320 331. McCubbin, H., I., Sussman, M. B., & Patterson, J. M. (1983). Social stress and the family: Advances and developments in family stress theory and research Binghamton, NY: The Haworth Press. Mullen, E. M. (1995). The Mullen early learning scales. MN. AGS: Circle Pines. Nardi, P. M. (2006). Interpreting data: A guide to understanding research Boston, MA: Pearson Education, Inc. Pallant, J. (2005). SPSS survival manual (2 nd ed.). Chicago, IL: Open University Press. Patterson, J. M. (2002). Integrating family resilience and family stress theory. Journal of Marriage and Family, 64 (2), 349 360. Phetrasuwan, S. & Miles, M. S. (2008). Parenting stress in mothers of children with autism spectrum disorders. JSNP, 14 (3), 157 165. Pisula, E. (2011). Parenting stress in mothers and fathers of children with Autism Spectrum Disorders. In M. Mohammadi (Eds.), A comprehensive book on Autism Spectrum Disorders (pp. 87 106). Croatia: InTech. Preacher, K. J. (2013). Calculation for the sobe l test. Retrieved from http://quantpsy.org/sobel/sobel.htm Radloff, L. S. (1977). The CES D scale: A self report depression scale for research in the general population. Applied Psychological Measurement, 1 385 401. Rao, P.A. & Beidel, D.C. (2009). The impact o f children with high functioning autism on parental stress, sibling adjustment, and family functioning. Behavior Modification, 33 (4), 437 451. Ridenour, T. A., Daley, J., & Reich, W. (1999). Factor analysis of the family assessment device. Family Pr ocess, 38 (4), 497 510. Rogers, H. & Matthews, J. (2004). The parenting sense of competence scale: Investigation of the factor structure, reliability, and validity for an Australian sample. Australian Psychologist, 39 (1), 88 96. Saloviita, T., Italinna, M., & Leinonen, E. (2003). Explaining the parental stress of fathers and mothers caring for a child with intellectual disability: A double ABC X model. Journal of Intellectual Disability Research, 47(4/5), 300 312.
89 Sills, S. J. & Song, C. (2002). Innovations in survey research: An application for web based surveys. Social Science Computer Review, 20 (1), 22 30. Sivberg, B. (2002). Family syst em and coping behaviors. Autism, 6 (4), 397 409. Smith, M. J., & Liehr, P. R. (2003). Middle range theory for nursing New York, NY: Springer Publishing Company, Inc. Tonge, B., Brereton, A., Kiomall, M., Mackinnon, A., King, N., & Rinehart, N. (2006). Ef fects on parental mental health of an education and skills training program for parents of young children with autism: A randomized controlled trial. American Academy of Child and Adolescent Psychiatry, 45 (5), 561 569. Trochim, W. M. K. (2006). Research m ethods knowledge base. Retrieved from http://www.socialresearchmethods.net/kb/index.php Twoy, R., Connolly, P. M., & Novak, J. M. (2007). Coping strategies used by parents of children with autism. Journal of the American Academy of Nurse Practitioners, 19 251 260. Wolf, L. C., Noh, S., Fisman, S. N., & Speechley, M. (1989). Brief report: Psychological effects of parenting stress on parents of autistic children. Journal of Autism and Developmental Disorders, 19 (1), 157 166. Zaidman Zait, A., Mirenda, P., Z umbo, B. D., Wellington, S., Dua, V., & Kalynchuk, K. (2010). An item response theory analysis of the parenting stress index short form with parents of children with autism spectrum disorders. Journal of Child Psychology and psychiatry, 51 (11), 1269 1277.
90 BIOGRAPHICAL SKETCH Shelby Rudd graduated from the University of Florida in 2 011 with a Bachelor of Science degree in f amily, y outh, and c ommunity s ciences with a minor in e ducation. In the summer of 2013, she received her Master of Science from the University of Florida in f amily, y outh, and c ommunity s ciences. Shelby plans to pursue a career working in Kenya with children who are orphaned.