Adolescent coping and family functioning in the family of a child with autism
Table of Contents Dedication ii Acknowledgements iii List of Appendices vi Abstract vii Introduction 1 Chapter 1 Coping with a Sibling with Autism 33 Chapter 2 Adolescent Perception of Family Functioning 65 Chapter 3 Relationship of Coping, Family Functioning, Self-Concept, and Satisfaction with Sibling Relationship 91 Discussion 122 Appendices 143 v
List of Appendices Appendix A Measures 144 Appendix B Subject Recruitment Letter 160 Appendix C Consent/Assent Forms 162 Appendix D Figures 171 Appendix E Tables 173 VI
ABSTRACT Adolescent Coping and Family Functioning in the Family of a Child with Autism by Sally J. Vliem Co-Chairs: Carol J. Loveland-Cherry and Kristy Kiel Martyn Autism is on the rise at an alarming rate. Autism impacts all members of a family • including siblings. There is much research that examines the etiology of autism but there is little research that explores, from the sibling perspective, what it is like to have a sibling with autism. There are studies that examine coping and the perception of family functioning from the parent perspective, but there are few studies that examine coping and perception of family functioning from the adolescent perspective. The Resiliency Model of Family Stress, Adjustment, and Adaptation (McCubbin & McCubbin, 1993) guided this exploratory, correlational study. The purpose of this study was to examine the coping strategies used by adolescent siblings of children with .autism and to examine how these coping strategies influence their perception of family functioning. Qualitative data were collected to help inform the quantitative results. Adolescents 11-21 years of age were recruited through the Interactive Autism Network and completed the measures online via Survey Monkey. The most commonly used coping strategy, as measured by A- COPE, for adolescents in this study was seeking diversion. Females more frequently than vii
males used the coping strategies developing social support, investing in close friends, and relaxing. The younger adolescents used an increased number of and more varied coping strategies than older adolescents. The adolescents perceived that their families functioned in the unhealthy range on five of the seven subscales on the Family Assessment Device with no statistically significant differences between males and females or between age groups on perception of family functioning. Path analysis using multiple regression revealed significant negative relationships between coping strategies, self-concept, satisfaction with the sibling relationship, and family functioning and explained 44.2% of the variance in the proposed model. The results of this study provide a better understanding of the complexities that adolescents who have siblings with autism encounter. Further research is needed to explore additional factors that influence family functioning including examining family functioning with adolescents with typically developing siblings. The development of coping strategies in children and adolescents also needs further exploration. vm
1 Introduction The prevalence of autism is on the rise at an alarming rate. Although the diagnosis of autism has been described in the medical literature since the 1940's, the increasing prevalence of autism has brought the disease to the attention of healthcare providers, scientists, and the public. The prevalence of autism has increased from 1 in 166 in 2003 to 1 in 150 today (ASA. 2009). This significant rise in the number of children with autism is creating not only an economic burden on society but also a national health crisis (ASA). Autism is a medical condition that impacts an entire family. While there are studies that examine coping strategies and family functioning in parents and school age siblings of children with disabilities, very little research examines family functioning and coping strategies used by adolescents who have a sibling with a disability. Even fewer studies examine coping strategies and family functioning in siblings of children with autism. The studies that examine the concepts of coping and family functioning report inconsistent findings as to the impact on siblings of living with a brother or sister with a disability or chronic illness. Since the diagnosis of autism is on the rise, it is imperative that nurses understand experiences of adolescents who have siblings with autism including their coping strategies and perception of family functioning.
2 Purpose and Specific Aims While much research is directed at finding a cause for autism, there is limited research examining the coping strategies used by adolescent siblings when there is a child with autism in the home. There is also limited information regarding how adolescents who have a sibling with autism perceive that their family functions. The purpose of this exploratory, correlational study was to examine the coping strategies used by adolescent siblings of children with autism and to examine how these coping strategies influence their perception of family functioning. In addition, the self concept of the adolescent was examined to explore the relationship among self concept and coping strategies that are used by the adolescent. This research study lays a foundation for future intervention research aimed specifically at adolescents and their family to promote positive coping strategies and a healthy, positive perception of family functioning. The specific aims along with related research questions and hypotheses include: Aim 1. Explore, from the adolescent perspective, the experience of being in a family with a child with autism. Research Question 1.1: What are the experiences described by adolescents of living in the family with a child with autism? Aim 2. Determine coping strategies used by adolescents who have a sibling with autism. Research Question 2.1: What coping strategies do adolescents who have a sibling with autism use as assessed by the Adolescent Coping Orientation for Problem Experiences (A-COPE)?
3 Research Question 2.2: Do adolescent males use different coping strategies than adolescent females when they have a sibling with autism when measured using A-COPE? Hypothesis 2.1: Younger adolescents use fewer coping strategies compared to older adolescents as measured by A-COPE. Aim 3. Determine how adolescents with siblings with autism perceive their family functioning. Research Question 3.1: How do adolescents who have a sibling with autism perceive that their family is functioning as measured by the Family Assessment Device (FAD)? Research Question 3.2: Do the perceptions of family functioning of adolescents who have siblings with autism differ by age and gender? Aim 4. Determine the predictive ability of the proposed model (see Appendix D) Research Question 4.1: How do the variables of coping strategies, perception of family functioning, self concept, and satisfaction with the sibling relationship relate to each other for adolescents who have siblings with autism? Format for Dissertation The dissertation consists of a three article format. The first article discusses the concept of coping and explores the coping strategies that are used by adolescents who have a sibling with autism. The second article explores the adolescent perception of family functioning when there is a child with autism in the family. In the third article, the proposed model is tested to ascertain if the age and gender of the adolescent influences
4 their coping strategies, self concept, and satisfaction with the relationship with their sibling with autism. The model examines the influence of the adolescent's self concept and satisfaction with their sibling relationship to determine if they influence the coping strategies that adolescents use. The model also tests how these variables impact the adolescent's perception of family functioning. The constant comparative method of analysis was used to identify common themes related to: 1) what adolescent siblings of children with autism are coping with and how they are coping; 2) how this influences their self-perception; 3) how this influences their relationship with their sibling with autism; and 4) how this influences their perception of family functioning. The qualitative data are infused throughout the results sections as they relate to the three chapters. An exploratory, correlational design with a convenience sample of 97 adolescents 11-20 years old who are siblings of children with autism addressed the specific aims of this study. An exploratory design was necessary as there are few research studies examining coping from the adolescent perspective or how these adolescents perceive family functioning. The study was designed to have a power of at least 80% with an alpha of .05 to detect a moderate (.30) correlation as described by Polit (1996). The siblings were recruited from the Interactive Autism Network (IAN) Community web site which is part of the Krieger Institute (www.ianproject.org). The IAN allows researchers to recruit study subjects on their community web site with proper Human Subjects Internal Review Board (HSIRB) permission as well as a letter from the doctoral school of study.
5 Review of the Literature Autism was first described by Kanner in 1943. He presented the cases of 11 children whom he believed had a new syndrome that was distinct from the assigned diagnosis of schizophrenia (Gallagher, et al. 2003; Rau, 2003). Kanner's autistic children displayed behaviors that demonstrated deficits in social interaction and communication skills that are now recognized as hallmark deficits of autism (Brimacombe, Xue, & Parikh, 2007; Rau, 2003; Rosen, Yoshida, & Croen, 2007). Males are more frequently affected with autism than females with a ratio of 4.3:1 (ASA, 2009). Although it is believed that autism crosses all races and ethnicities, little is known about the prevalence rates of autism by race and ethnicity (Newschaffer et al. 2007). Newschaffer et al. reported that a study conducted in California found that the prevalence rate was higher in children with black mothers, lower in children with Mexican born mothers, and comparable among children with white, Asian, and U.S. born Hispanic mothers. Schieve, Rice, and Boyle (2006) have reported that autism rates are comparable in black and white children and lower in Hispanic children. While much research has been directed at finding a cause for autism, there is limited research examining the coping strategies used by family members when there is a child with autism in the home; even less is known regarding how adolescents who have a sibling with autism perceive that their family functions. In this chapter, a review of the literature is be presented by first describing the challenges of living with a sibling with autism, the importance of the sibling relationship, the sibling outcomes when living with
6 a child with a disability, and the developmental considerations of the adolescent siblings. The concept of coping is discussed as it relates to the relevant stages of cognitive development of adolescents. More focused attention is devoted to what the literature reveals about coping strategies employed by the families affected by autism and chronic illness. Finally, the concept of family functioning is explored as well as an explanation of the theoretical framework that guided this study. Challenges of living with a child with autism in the family. Families face many challenges when living with a child with a disability. Parents of a child with autism, face numerous challenges including, the burden of caring for the child, the physical toll that this care entails, the financial burdens due to one parent staying home as caregiver, the effects of social isolation, and marital strain (Dumas, Wolf, Fisman, & Culligan, 1991; Gray, 1998; Hodgkinson & Lester, 2002; Krulik et al. 1999; Melnyk, Feinstein, Moldenhouer, & Small, 2001; Scorgie & Sobsey, 2000). Due to the nature of the disorder and the behaviors that the children display, parenting a child with autism is a demanding task. Children with autism display inappropriate social behavior, act aggressively towards themselves or others, engage in repetitive, self stimulatory behaviors, have erratic sleep patterns, show marked decrease in language, communication and affection, and 75-80% exhibit cognitive delays (Gray; Rau, 2003; Tomanik, Harris, & Hawkins, 2004). Parents also report challenges in teaching basic life skills to their
7 children with autism as well as protecting them from danger and preparing them for adult life (Dyches, Wilder, Sudweeks, Obiakor, & Algozzine, 2004). Children also face challenges when living with a sibling with autism. A qualitative study conducted by Hutton and Caron (2005) found that parents try to help siblings deal with having a sibling with autism in several ways. Parents reported that they tried to educate the siblings about autism, spend time with the unaffected sibling away from the child with autism, involve siblings in the therapy for the autistic child and protected unaffected siblings from harm if there was a threat of danger by the sibling with autism. The Autism Society of America (2007) reports that siblings of children with autism report the following sources of stress: embarrassment around peers; jealousy regarding the amount of time that parents spend with the sibling with autism; frustration when they do not get a response from the sibling with autism when attempting to interact with them;- being the target of aggressive behaviors; attempting to make up for the deficits of the sibling with autism; concern for parent's stress and grief; and concern over their role in future care giving. Importance of the sibling relationship. Sibling relationships are among the most important, dynamic and long lasting relationships that a child will have and lay the foundations for peer and adult relationships (Cox, Marshall, Mandleco, & Olsen, 2003; Dellve, Cernerud, & Hallberg, 2000; Hamama et al. 2000; Harris & Glasberg, 2003; Lobato, Faust, & Spirito, 1989;
8 McHale & Gamble, 1987; McHale & Gamble, 1989; Rodrigue, Geffken, & Morgan, 1993). Cox et al. reported that by the time children are one year of age, they have spent more time interacting with their siblings than their fathers. The longevity of the sibling relationship is unparalleled in any other relationship. These longitudinal relationships influence not only the cognitive, affective, and social skills, but also the development of a positive self concept of the siblings. The sibling relationship has a significant impact on child socialization and makes it possible to express feelings and to experience friendships, loyalty, rivalry, and support (Harris & Glasberg, 2003; Verte, Roeyers, & Buysse, 2003). It is in this relationship that children learn new roles of teacher, caregiver or leader for younger or less capable siblings (McHale & Gamble, 1987), With the changing structure of the family in which single parent and dual wage earner households continue to increase, the sibling relationship is even more important. Siblings rely more on each other in single parent families, as well as in families in which both parents work outside the home (Morrison, 1997). Children with disabilities are surviving longer and are more likely to receive care in the home rather than in an institution. This increases the likelihood that siblings will be impacted by living each day with a sibling with a disability (Cox et al. 2003). The care that children with autism need is ongoing. As parents age, siblings become a likely source of care for the child with autism which can cause anxiety in the adolescent who is able to look toward the future and anticipate potential caregiving responsibilities (Harris & Glasberg, 2003).
9 Sharpe and Rossiter's (2002) meta-analysis of siblings of children with chronic illness concluded that more methodologically sophisticated studies of siblings of children with disabilities are needed. For example, many studies rely on parent reports (i.e. proxy data) of sibling feelings, although the literature is clear that parents are not always aware of the siblings' feelings (Gallo, Breitmayer, Knafl, & Zoeller, 1991; Gallo & Szychlinski, 2003; Guite, Lobato, Kao, & Plante, 2004; Hamama et al., 2000; Hayes, 1997; Sharpe & Rossiter, 2002). The sibling relationship is filled with both conflict and companionship in the best of circumstances. One solution is to ask the siblings directly about their relationship with their sibling with a disability rather than rely on proxy informants (i.e. parents). Further examination of the influence of living with a child with a disability from the well sibling's perspective would add to the body of knowledge. Sibling outcomes when living with a child with a disability. Research findings on the impact of living with a sibling with a disability are contradictory. Further, specific studies that examine the impact of autism are especially scarce. Expanding the audience to siblings of children with disabilities revealed that, as with the siblings of children with autism, there are negative as well as positive effects on children who have a sibling with a disability. The negative effects of having a sibling with a disability include higher risk for depression (Cox et al. 2003; Gupta & Singhal, 2006; Kaminsky & Dewey, 2002; Mascha & Boucher, 2006; McHale & Gamble, 1987), anxiety (McHale & Gamble, 1987), decreased self esteem (Dyson, 1999; McHale &
10 Gamble, 1987), isolation and feelings of loneliness (Dellve et al. 2000; Glasberg, 2000; Gupta & Singhal; Sloper, 2000), loss of parental attention (Dyson, 1999; Gupta & Singhal; Leonard, 1991; McHale & Gamble, 1987; Rodrigue et al. 1993), changes in family roles, structure, and activities including more caretaking roles (Dyson, 1999; Gupta & Singhal; Leonard, 1991; Mascha & Boucher, 2006; McHale & Gamble, 1987; Rodrigue et al., 1993), feelings of guilt and shame (Gupta & Singhal; Rodrigue et al. 1993), maladjustment (Cox et al. 2003), behavior problems (Cox et al. 2003; Verte et al. 2003), embarrassment surrounding the sibling's behaviors (Gupta & Singhal; Mascha & Boucher, 2006) and worries and anxieties related to the disabled sibling's welfare (Mascha & Boucher, 2006; McHale & Gamble, 1987). On the other hand, other studies reveal that there are some positive aspects that children who have a sibling with a disability display including a positive self concept (Kaminsky & Dewey, 2002; Mates, 1990; Rodrigue et al. 1993), enhanced caretaking skills (Mates, 1990), increased sympathy, empathy, and compassion (Sharpe & Rossiter, 2002; Sloper, 2000), personal maturation (Mascha & Boucher, 2006; McHale & Gamble, 1987; Sloper, 2000), and increased family cohesion (Sloper, 2000). Given the contradictory nature of these findings, further study is needed to explore the influence of living with a sibling with a disability such as autism.
11 Developmental considerations and siblings. Adolescence is a complex time. Adolescent lives are filled with challenges ranging from normative challenges of arguing with parents or breaking up with a significant other to challenges of dealing with chronic stressors such as poverty or living with a sibling with autism (Harris & Glasberg, 2003; Patterson & McCubbin, 1987; Skinner & Zimmer- Gembeck, 2007). Rodrigue et al. (1993) reported that having a sibling with autism is more difficult than having a sibling with any other disability. When examining siblings' responses to living in a family with a disabled child, the psychosocial and cognitive developmental status of the sibling needs to be considered. According to Erikson, adolescents, between 12 and 18 years of age, are developing a sense of identity (Hockenberry, Wilson, & Winkelstein, 2005). Adolescents are beginning to see themselves as individuals who are unique with their own personal identities. A sense of belonging to or being accepted by a group is an essential prelude to developing a personal identity. As adolescents develop their identity, they often separate from their families. In high school, adolescents are spending less time with family and more time with peers. After high school graduation, adolescents typically leave home to either attend college or begin a job. Having a sibling with a disability makes the developmental task of separating from the family extremely difficult as the adolescent feels guilty about leaving the remainder of the family to care for the sibling with a disability (McHugh, 2003). Adolescents may choose to spend more time at home and attend a college or obtain work near to their home.
12 Cognitive development also plays an important role in the adolescent's understanding the dynamics of a family with a child with autism. Adolescents who are 11 years of age and older are in the formal operations stage according to Piaget (Hockenberry et al. 2005). They are able to think beyond the present and can imagine a sequence of events (Hockenberry et al. 2005), such as who will take care of their sibling with autism when their parents no longer can. Adolescents in this stage also wonder what others think of them and believe that everyone is focusing on the same things they are-themselves and their activities (Bastable, 2006). This imaginary audience has influence over the adolescent and explains in part why adolescents are self conscious. Having a sibling with autism who does not conform to the accepted norms of society can be a source of embarrassment (E. Mellem, personal communication, March 8, 2006) for the adolescent sibling who is trying to fit in with their peers. Adolescents in the formal operations stage also believe that they are invincible which leads to risk taking behaviors. This normal phase of development coupled with the potential for risks related to living with a sibling with autism such as increased incidence of depression, isolation, and anxiety, increase the need to be vigilant about recognizing that these children may need additional support and guidance (Bastable, 2006; Cox et al. 2003; Dellve et al., 2000; Glasberg, 2000; Gupta & Singhal, 2006; Kaminsky & Dewey, 2002; Mascha & Boucher, 2006; McHale & Gamble, 1987; Sloper, 2000)). Glasberg's (2000) research (based in the psychosocial and cognitive development of Erikson and Piaget) indicates that siblings of different ages (5-17 years) had different
13 understandings regarding their sibling with autism. Glasberg found that children of all ages had lower levels of cognitive sophistication when discussing illness. In Glasberg's study, 5% of 11-17 year olds reported that they had never heard autism or Asperger's Syndrome as their sibling's diagnosis. This is in contrast with the 90% of parents who predicted that their child would be familiar with the diagnostic terms autism or Asperger's suggesting that there is a difference between telling and understanding when working with children who have a sibling with autism or other disabilities. Despite the fact that the adolescents in Glasberg's study were not cognitively sophisticated, they were able to evaluate the implications of having a sibling with autism and to envision future issues related to having a sibling with autism. All adolescents, those from families with or without children with disabilities, display a range of reactions from maturity in some situations to childlike behavior in others (Hockenberry et al. 2005). As adolescents become older, they develop control of their emotions and can approach situations more calmly and rationally (Hockenberry et al. 2005). This often results in more mature discussions regarding what they are thinking and feeling in response to having a sibling with autism. The ability to have more mature discussions makes exploring the coping strategies and perception of family functioning appropriate for the adolescent population.
14 Development of coping. Coping strategies are generally believed to develop during childhood and become more sophisticated as the child matures. However, children's coping strategies are not well understood or studied from a developmental perspective (Glasberg, 2000; Hamama et al., 2000; Lerner & Benson, 2003; Ryan, 1989). There are several reasons for the difficulty in studying the development of coping. First, there is no clearly identified theory for examining coping in children or adolescents (Ryan, 1989). Second, the majority of the studies that examine coping and children have not focused specifically on coping as it relates to the development of coping strategies, that is to say, within the context of the child's continued emotional and cognitive growth and change. Third, most of this literature uses the stress and coping model and applies it to the child who has a disabled sibling without taking into account the child's developmental level (Houtzager et al., 2004). As children mature cognitively and emotionally they are better able to problem solve and channel their emotions. Accordingly, the coping strategies that children use are dependent on age and developmental level, as well. Skinner and Zimmer-Gembeck (2007) reviewed studies that examined age differences or changes in coping responses to stress. Transition periods for coping were identified including: late childhood to early adolescence (10-12); early and middle adolescence (12-16); and middle and late adolescence (16-22). Between the ages of 5-7 and 8-12 years, the most rapid development of coping occurred. During the younger years, coping is carried out by
15 using direct action and enlisting the help of others as needed. This trend of seeking help from others continues as children move into adolescence. As children reach middle childhood and their cognitive development progresses, they are able to use more sophisticated techniques for coping such as distraction, delay, and problem solving, either independently or with guidance from others. By adolescence, children's cognitive development should be in formal operations, enabling adolescents to more effectively problem solve and to regulate their coping responses and anticipate future implications of decisions. Adolescents are also able to determine which adults will be best able to help them in a given situation (Skinner & Zimmer-Gembeck, 2007). Coping is shaped in part by social relationships and contexts. Children's coping abilities develop in part by socialization and exposure to others who provide models of coping. Parents and other social supports may either be stressors themselves or may strive to buffer children from repeated stressors. Parents are also instrumental in role modeling both constructive and unconstructive strategies for coping (Skinner & Zimmer-Gembeck, 2007; Zimmer-Gembeck & Locke, 2007). Ryan (1989) stated that "both adaptive and maladaptive coping strategies are learned behaviors and can be acquired, changed, or eliminated" (p. 111). Future research needs to examine how children's coping strategies shape their social relationships, as well as the impact that those coping strategies have on their development into adulthood (Clarke, 2006).
16 Coping with autism and chronic illness. Coping is a complex phenomenon that is not fully understood particularly for families of autistic children. Although a plethora of literature examines parental coping in a variety of pediatric populations, information specific to siblings of children with childhood autism is limited. Much of the research relies on the definition of coping set forth by Lazarus and Folkman (1984) who defined coping as the "constantly changing cognitive and behavioral efforts to manage specific external and or internal demands that are appraised as taxing or exceeding the resources of the person" (p. 141). Gray (1998) examined parental coping and autism using an ethnographic approach with 33 parents whose children attended an autistic center in Australia. Coping strategies that were used by the parents in this study included: reliance on services provided by agencies (autism center, special schools); support of family members; religion (which gave a sense of meaning and purpose to the event of having a child with a disability); engaging in individually based strategies that either allowed them respite from their child's condition or afforded them a sense of mastery and/or self worth; and limiting social activities that put the family in an uncomfortable position. With the exception of this ethnographic study, the literature on coping strategies of parents with autistic children is limited. There are, however, several studies that examine parental coping among children with other chronic disabilities such as congenital heart disease (Tak & McCubbin, 2002), Down Syndrome (Lam & Mackenzie, 2002), cystic fibrosis