Quality of Life among Adolescents with Juvenile Rheumatoid Arthritis

Parenting and autonomy were examined as psychosocial predictors of quality of life among adolescents with juvenile rheumatoid arthritis (JRA). Twenty-four adolescents diagnosed with JRA and their parents participated in the study. Adolescents and parents were interviewed separately to assess the child’s general and JRA-related autonomy, parenting style of parent(s), and the child’s general and JRA-specific quality of life. Significant correlations were found between general autonomy and worse general quality of life and general autonomy and better JRA quality of life among older adolescents (13 to 16 years). Authoritative and authoritarian parenting styles were associated with better general and JRA quality of life among younger adolescents (10 to12 years). Parent-child relationship and parental care were also significantly related to better general quality of life. Thus, parenting appears to be especially important to the quality of life for younger adolescents and autonomy appears to be especially important to the quality of life for older adolescents. JRA Quality of Life 3 Quality of life among adolescents with juvenile rheumatoid arthritis Juvenile rheumatoid arthritis (JRA), an autoimmune disease, is one of the most common rheumatic disorders of childhood. JRA is loosely defined as "arthritis beginning before the age of 16 years.” As the most prevalent form of arthritis in children, it affects about 71,000 100,000 children in the United States alone (Arthritis Foundation, 1999). The disease is characterized by inflammation of and around the joints. Such inflammation can cause mild to severe swelling, heat, and pain, resulting in weakness, decreased motor activity, and reduced coordination. JRA can also lead to altered growth in the localized areas of affliction as well as in overall physical development. Three types of JRA have been identified and characterized as distinct from other rheumatic diseases: polyarticular, pauciarticular, and systemic (Cassidy & Petty, 2001). The number and type of joints affected as well as the presence or absence of high spiking fever within the first six months of illness onset distinguish among the three. Polyarticular onset JRA affects about 30 percent of the diseased population and is defined by the presence of five or more affected joints. Most often the smaller joints, such as those of the fingers and hands, are affected by polyarticular JRA, but weight-bearing joints (i.e., knees, hips, ankles, feet, neck and jaw) also can be affected. Girls are three times as likely as boys to be affected by polyarticular JRA. Pauciarticular or oligoarticular JRA, the most prevalent form of JRA accounting for about half of the cases, affects four or fewer joints and is accompanied by low-grade inflammation. This type of JRA affects girls five times as often as boys. Systemic onset, the most severe and rare form of JRA, is characterized not only by arthritis, but also by a high spiking fever (39 C or higher) that occurs once or twice daily during onset and then less frequently JRA Quality of Life 4 throughout childhood. Effects of systemic JRA are not limited to arthritic symptoms; it may include chills and often a rash. In contrast to polyand pauciarticular JRA, systemic onset JRA equally affects girls and boys. While JRA often improves or remits at puberty, there is no cure for any type of the disease. Therefore, treatment plans focus on alleviation of symptoms. The treatments for JRA often have considerable side effects. For example, methotrexate can cause ulcers throughout the gastrointestinal tract. Steroids may cause fluid retention resulting in weight gain. Fortunately, there are ways to reduce or alleviate some of the physical side effects from medications used to treat JRA. However, there are more subtle psychosocial impacts of this disease that medical regimens do not address. For example, social development may be impaired due to the inability of some children afflicted with the disease to participate in sports activities. Appreciation of the impact of this disease on children and adolescents should include not only an examination of the physical hardships, but also the psychosocial consequences of JRA and its treatment. The physical and psychological effects of JRA may be difficult at any age, but they present even more significant challenges for adolescents. Adolescence is a particularly critical time to study JRA because the needs of adolescents to establish a sense of independence may conflict with taking care of a chronic illness. The rigor of the JRA treatment regimen may place an extra burden on adolescents who are trying to become more independent from their parents in their social relationships, activities, and in the responsibility they take for their illness. There are also significant psychosocial concerns associated with having to deal with a chronic illness at a young age. JRA may pose physical limitations, be associated with pain, and affect body image, all of which JRA Quality of Life 5 may impact on adolescents’ physical, emotional, social, and academic functioning—in other words, their quality of life. Past research in the area of quality of life among children with JRA is limited in at least three important ways. First, medical investigators typically focus on disease-related predictors (e.g., severity) rather than psychosocial predictors of quality of life. Disease severity is not always related to quality of life. For example, in one study no significant differences in social, emotional, or behavioral functioning were discovered between children evaluated to have moderate to severe disease versus mild disease according to a pediatric rheumatologist (Noll, Kozlowski, Gerhardt, Vannatta, Taylor, & Passo, 2000). The finding that greater emotional distress of the child and family is related to higher reported pain also supports the notion that psychosocial predictors of quality of life ought to be evaluated (Ross, Lavigne, Hayford, Berry, Sinacore, & Pachman, 1993). It is not clear whether disease severity or psychosocial factors are the cause of pain reports. It is important to understand the predictors of pain because parent-child pain reports are often used as a measure of disease severity. An assessment of quality of life, independent of clinically defined disease severity, may yield a more accurate representation of the adolescent’s social, emotional, and physical functioning. Second, psychosocial research on quality of life among children with JRA has often spanned a broad age range, 7 to 15 years in one study (Schanberg et al., 2000) and 6 to 17 years in another (Berry, Hayford, Ross, Pachman, & Lavigne, 1992). There are several methodological concerns that arise when employing participants of such an expansive age range. One methodological limitation of these studies is that parents report on behalf of younger children and older children report on behalf of themselves. The JRA Quality of Life 6 data are combined and the source of the data (parent vs. child) is not given any consideration. This approach can be problematic due to the finding that adults often rate children's behavioral and emotional problems as more severe than do children themselves (Handwerk, Larzelere, Soper, & Friman, 1999). Assessment over such a broad age range is also problematic because psychosocial variables that are relevant for one age group may not be relevant for another age group. For example, family cohesion is more predictive of health outcomes among younger than older adolescents (Burroughs, Harris, Ponious, & Santiago, 1997). Furthermore, young children and adolescents differ in the conceptions they have of their JRA and may therefore understand questions concerning their illness differently (Berry et al., 1993). Therefore, age may influence factors that predict health behaviors and quality of life. Finally, the majority of studies examine parents’ rather than children’s views of children’s quality of life. For quality of life, in particular, it is important to know how children view the impact of the illness on their own functioning. The goal of this research is to examine psychosocial predictors of quality of life among adolescents with JRA. We address many of the concerns raised by previous studies. We examine a group of adolescents who span a more narrow age range and obtain reports from adolescents as well as parents. We believe that two factors are important predictors of quality of life among adolescents with JRA: parenting style and child autonomy. Parenting style may be a significant predictor of social and emotional functioning by directly and/or indirectly affecting the child’s social skills, sense of self, and sense of being cared for. Parent-child relationship quality and parent involvement are significantly related to peer relations and self-concept among adolescents aged 12 to JRA Quality of Life 7 18 years (Delovic & Meeus, 1997). Autonomy is an especially important factor in adolescent development. Due to the physical challenges that adolescents with JRA face, autonomy may be restricted by dependence upon parents for daily treatment responsibilities (i.e., taking medications, performing range of motion exercises). Therefore, I will briefly review the literature on parenting style and autonomy and make predictions about how these variables will affect the quality of life of adolescents with JRA. Parenting Style The psychological literature has distinguished among three parenting styles: authoritative, authoritarian, and permissive (Bukatko & Daehler, 1998). An authoritative style is characterized by reasonable expectations, warmth demonstrated by love and affection, and explanations for demands. An authoritative parent typically encourages open communication with a child and interacts in a warm manner. By contrast, an authoritarian style is characterized by parental usage of restriction and control as well as a lack of warmth. While permissive parents offer warmth, they are typically identified by their lack of limits and demands. The authoritative style is generally accepted as the optimal type of parenting (Henricson & Roker, 2000). Parenting styles have rarely been examined in the context of children with a chronic illness, including JRA. However, there is some literature outlining the impact of different parenting styles on general health behaviors and social development. For example, Schmitz, Lytle, Phillips, Murray, Birnbaum, and Kubik (2002) found that 11to 15-year-old girls who reported their mothers had an authoritative parenting style also reported higher physical activity and lower sedentary leisure habits. Authoritarian and JRA Quality of Life 8 permissive parenting styles have been associated with a greater risk for problematic behaviors such as drug and alcohol abuse, delinquency, and sexual promiscuity, (Henricson & Roker, 2000; Maccoby & Martin, 1983). One limitation of previous research on parenting style is that the style is reported by either the parent or the child, but not both. One strength of this proposal is that we examine parenting styles from both the parent’s and the child’s perspective. We will be able to examine the extent to which children and parents agree as to the parenting style used in the home, and we will be able to determine whose response is more predictive of outcomes. Autonomy A central developmental challenge of adolescence is to achieve an identity and develop a sense of autonomy (Collins, Gleason, & Sesma, 1997). Managing a chronic illness may conflict with these developmental needs. Autonomy in adolescence has been associated with engagement in positive health behaviors such as refraining from sexual intercourse and avoidance of negative health behaviors such as fighting and use of substances (Turner, Irwin, Tschann, Millstein, 1993). In addition, less autonomy or conflict over autonomy has been related to negative emotional functioning among adolescent girls (Frank, Schettini, Lower, 2002). We will examine two domains of autonomy—autonomy for non JRA-related tasks (e.g., completing homework, participating in social activities) as well as JRA-related tasks (e.g., taking medication, completing daily exercises).