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Nursing Research:
doi: 10.1097/NNR.0000000000000046
Feature Articles

Sibling Cooperative and Externalizing Behaviors in Families Raising Children With Disabilities

Platt, Christine RN, BSN; Roper, Susanne Olsen PhD; Mandleco, Barbara RN, PhD, ANEF; Freeborn, Donna PhD, FNP-BC, CNM

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Author Information

Christine Platt, RN, BSN, is Graduate Student, College of Nursing, Brigham Young University, Provo, Utah.

Susanne Olsen Roper, PhD, is Associate Professor, School of Family Life, Brigham Young University, Provo, Utah.

Barbara Mandleco, RN, PhD, ANEF, is Professor; and Donna Freeborn, PhD, FNP-BC, CNM, is Assistant Professor, College of Nursing, Brigham Young University, Provo, Utah.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text and are provided in the HTML and PDF versions of this article on the journal’s Web site ( www.nursingresearchonline.com).

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Abstract

Background

Raising a child with a disability (CWD) in the home is increasing across the globe. Because of caregiver burden and the complexity of care, there is growing concern for typically developing sibling (TDS) outcomes.

Objective

The aim of the study was to examine whether caregiver burden, parenting style, and sibling relationships in families raising a CWD are associated with cooperative and externalizing behaviors in TDS.

Methods

This correlational study included 189 families raising both a CWD and a TDS. Multilevel modeling was used to identify which variables were most predictive of TDS outcomes and if there were parent gender effects.

Results

Authoritative parenting was positively associated with cooperative behaviors. Authoritarian parenting was positively associated with externalizing behaviors. Multilevel modeling revealed caregiver burden was a significant predictor of sibling behaviors in the first model. When parenting style was added as a predictor, it was also significant. When sibling relationships were added as predictors, they were significant predictors for both cooperative and externalizing TDS behaviors; however, caregiver burden was no longer significant. Authoritarian parenting significantly predicted externalizing behaviors, and authoritative parenting was significantly related to cooperative behaviors.

Discussion

In families raising a CWD, positive sibling relationships may help negate the effects of caregiver burden and are more predictive of TDS outcomes than some parenting practices.

In many developed countries, children with complex medical and physical needs are increasingly being cared for in the home, as it provides reduced disruption to families’ and children’s lives (Carter et al., 2012). This shift to home-based care for children with disabilities (CWD) has raised concern about the outcomes of typically developing siblings (TDS). For example, up to 40% of children in the United States require additional health-related services because of a chronic condition or illness; most are cared for in the home, which can significantly impact sibling relationships and family functioning (Mandleco, 2011).

Prior research documents significant caregiver burden for parents raising a CWD in the home (Al-Krenawi, Graham, & Gharaibeh, 2011). However, the extent to which caregiver burden affects TDS outcomes in the presence of other variables is unclear. Research reports negative, positive, and mixed effects on sibling outcomes (Fleary & Heffer, 2013; Waite-Jones & Madill, 2008) related to being raised with a CWD. In addition, past investigations have explored caregiver burden (Wade et al., 2010), parenting style (Rivers, Mullis, Fortner, & Mullis, 2012), and sibling relationships (Burke, 2010) in relation to sibling outcomes but have done so separately, which does not provide information as to how these factors may be related. Therefore, the objective of this study is to jointly examine whether caregiver burden, parenting style, and sibling relationships in families raising a CWD predict cooperative and externalizing behaviors in TDS.

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Theoretical Model and Related Studies

Family systems theory was used as a theoretical framework when examining the relationship between caregiver burden, sibling relationships, parenting style, and TDS outcomes. This theory emphasizes that family systems are interdependent, and a family member’s behavior is related not only to oneself but also to the behavior and interactions of other individuals and subsystems within the family. Thus, both interdependent family members and interdependent family subsystems may impact a person’s adjustment (Holmes & Huston, 2010). Here, this study asks which variable, if any, is most strongly associated with positive TDS adjustment, so care providers are better able to understand the intricate relationship among variables helping families to achieve positive adjustment in TDS.

Caregiver burden refers to the physical, emotional, financial, mental, and social stresses experienced as a result of caring for a family member with a chronic condition (Nguyen, 2009). Although parenthood is assumed to inherently contribute to changes in lifestyle, parenting a CWD is associated with increased levels of mental and physical burdens beyond those typically expected (Manor-Binyamini, 2011). Raising a CWD can cause significant parental stress and burden, resulting in depression (Hasting, Daley, Burns, & Beck, 2006), clinical levels of anxiety (Davis & Carter, 2008), and relationship conflict (Kersh, Hedvat, Hauser-Cram, & Warfield, 2006).

Parenting style refers to the normative patterns of behavior and strategies parents use to socialize and control their children (Berkien, Louwerse, Verhulst, & van der Ende, 2012), and parenting styles can be categorized into Baumrind’s (1991) four typologies of parenting: authoritative (high demandingness and high responsiveness), authoritarian (high demandingness and low responsiveness), permissive (low demandingness and high responsiveness), and rejecting-neglecting (low demandingness and low responsiveness). These parenting typologies are associated with different child outcomes. A higher degree of authoritative parenting is associated with the most positive outcomes (Berkien et al., 2012; Simons & Conger, 2007), including higher levels of intrinsic motivation and academic performance (Rivers et al., 2012). A higher degree of authoritarian parenting is associated with poor social skills, low self-esteem, and high levels of depression in children (Weiss & Schwarz, 1996). Permissive parenting is associated with an increased likelihood of problem behaviors in adolescents, such as smoking and drinking (Piko & Balázs, 2012). Rejecting-neglecting, also known as uninvolved parenting, is the least effective style and is associated with delinquency and depression (Simons & Conger, 2007).

Sibling relationship, in this study, refers to a typically developing child's relationship with their sibling with a disability. Sibling relationships are typically the first, most intense, and longest peer relation a person will have (Mandleco, 2011). Siblings are a unique source of companionship, help, and emotional support. They act as key socializing agents in the life of a child and provide opportunities for sharing and learning (Abrams, 2009). TDS who have a positive relationship with a CWD report a higher level of positive self-concept than those siblings not raised with a CWD (Van Riper, 2000). The literature also documents the protective effect of sibling affection on child adjustment during stressful life events, regardless of mother–child relationship quality (Gass, Jenkins, & Dunn, 2007).

Sibling outcomes refers to the effects on siblings living with a CWD; in this study, cooperative and externalizing behaviors are examined. Findings are mixed regarding the effects on siblings of living with a CWD. A meta-analysis by Sharpe and Rossiter (2002) found TDS of children with chronic illnesses experienced significant negative effects related to self-concept, peer activities, cognitive development, and psychological functioning, which was the most pronounced negative effect. A review of literature on TDS outcomes (Dauz Williams et al., 2010) discovered across studies, 61.1% reflected negative TDS outcomes, ranging from emotional concerns, such as anger, resentment, depression, and anxiety, to negative behavioral measures, including school problems. Professionals also report concerns for missed social experiences, stigma, and constant worry for parent and sibling, as well as jealousy of uneven parenting for TDS (Packman et al., 2008). In spite of the reported negative TDS outcomes, several positive outcomes exist, such as TDS demonstrating more helping behaviors and greater-than-average self-respect (Kaminsky & Dewey, 2001). Additional studies report TDS have more empathy, kindness, involvement (Nielsen et al., 2012), warmth (Cuskelly & Gunn, 2003), and higher levels of cooperation and self-control (Mandleco, Olsen, Dyches, & Marshall, 2003) than children not being raised in a home with a CWD. Therefore, mixed reports on TDS outcomes in the presence of a CWD need further investigation.

Understanding the connection between caregiver burden, sibling relationships, and parenting style is critical in predicting TDS outcomes; however, current research captures only portions of the interplay between these variables. For example, Mazaheri et al. (2013) discovered increased levels of depression, feelings of isolation, anger, and worry in not only parents but also siblings living with a CWD. In fact, 92% of the TDS indicated moderate-to-severe symptoms of post traumatic stress disorder. Indeed, living with a CWD may directly contribute to sibling stress, but research indicates parental stress can further negatively impact TDS as well. For example, parental stress or burden is correlated with poor cognitive, emotional, behavioral, and social development of TDS (Park, Chung, & Kim, 2011). Increased levels of caregiver burden negatively impacting child outcomes is further supported by Maas-van Schaaijk, Roeleveld-Versteegh, and van Baar (2013), who found that for adolescents with Type 1 diabetes mellitus, parenting stress experienced by both parents was related to the child’s emotional and physical functioning. However, Hastings and Taunt (2002) argue positive familial relationships help mitigate caregiver burden, therefore possibly improving TDS outcomes and decreasing caregiver burden. Although not including CWD, several studies examine links between sibling relationship qualities and individual child adjustment (Campione-Barr, Greer, & Kruse, 2013). In addition, Gass and colleagues (2007) report typically developing children with affectionate sibling relationships are less likely to demonstrate negative internalizing behavior after experiencing a stressful life event compared to children without such a relationship.

Current research does not investigate the relationship between caregiver burden, parenting style, sibling relationship, and TDS outcomes together in one model. In addition, much research conducted on parenting a CWD uses mother reports, thereby excluding paternal perceptions (Stoneman, 2005). This study is novel in both domains; all variables are modeled together, and both parent reports are used. The model further includes authoritative and authoritarian parenting together in one analysis, allowing determination of which parenting style has the strongest relationship with outcomes—whether they be positive or negative. Modeling caregiver burden, parenting style, and sibling relationships together also allows us to identify which variables are stronger predictors of TDS outcomes, thus enabling providers and families to focus limited resources on variables with the greatest chance of improving sibling outcomes. Gathering data from fathers will provide information currently lacking regarding these variables.

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Purpose

The purpose of this study was to answer the following questions in families raising a CWD and a TDS:

  • • What is the relationship between caregiver burden and TDS outcomes?
  • • What are the effects of caregiver burden on TDS outcomes if parenting style is factored in?
  • If sibling relationships are also included, which variable is the best predictor of TDS outcomes?
  • • Are there different patterns of relationships between variables for mothers and fathers?

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Methods

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Design

This study used a cross-sectional correlational design and employs multilevel modeling.

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Procedure

During a home visit, mothers and fathers from the 189 families completed questionnaires addressing four issues: caregiver burden, sibling relationships, parenting, and TDS outcomes. An additional demographic questionnaire was filled out, usually by the mother. The study and procedures were approved by the Brigham Young University Institutional Review Board. Participation in the study was voluntary, families were compensated with a $20 gift card, and data were de-identified to ensure anonymity during analysis. In families consisting of more than two children, the TDS closest in age to the CWD who agreed to participate was chosen for analysis.

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Measures

Caregiver Burden

A modified version of the Caregiver Strain Index (Robinson, 1983) measured caregiver burden. Each parent rated 13 items on how much hassle (1 = no hassle, 4 = big hassle) each experienced related to caring for the CWD. Examples include “Feeling overwhelmed at all there is to do in caring for my children” and “Feelings of isolation—no one understands what I am going through in raising my children.” Hassle of burden was chosen as the key determinant of caregiver burden in this study, which describes how much the burden affects parents’ daily lives. Cronbach’s alphas for caregiver burden were .88 for mothers and .86 for fathers in this sample.

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Parenting Style

Mothers and fathers independently completed the authoritarian and authoritative subscales of the Parenting Practice Report (Robinson, Mandleco, Olsen, & Hart, 1995). Example items include “I use physical punishment as a way of disciplining our child” (authoritarian) and “I emphasize the reasons for rules” (authoritative). Parents rated their own parenting behavior on a Likert-type scale (1 = never, 5 = always) for each item. A higher score reflects a higher degree of authoritative or authoritarian parenting, respectively. For this sample, Cronbach’s alphas for authoritative parenting are .85 for mothers and .89 for fathers. Cronbach’s alphas for authoritarian parenting are .81 for mothers and .87 for fathers.

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Sibling Relationships

Mothers and fathers independently completed the 28-item Sibling Inventory of Behavior (Schaefer & Edgerton, 1981), which evaluated the relationship between the TDS and CWD. The instrument consists of four subscales: empathy, involvement, avoidance, and kindness. Parents responded on a Likert scale (1 = never, 5 = always). Reverse coding was used for avoidance (i.e., a high score = a lack of avoidance). Examples include “Tries to avoid being seen with him/her” (avoidance) and “Tries to comfort him/her when she is unhappy or upset” (kindness). A total sibling relationship score was calculated by summing the four subscale scores. For this sample, Cronbach’s alphas for the total sibling relationship score were .95 for both parents.

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TDS Cooperation and Externalizing

The outcome variables were measured using the externalizing and cooperation subscales of the modified Social Skills Rating System (Gresham & Eliot, 1990). Parents rated questions or statements about the TDS using a Likert-type scale ranging from 1 = never to 7 = always. Example statements include “Uses aggression to release pent-up feelings” and “Talks with a friend or teacher about the problem to help find a solution.” This instrument was developed to assess child functioning in two broad domains—social skills (cooperation) and problem behaviors (externalizing). For this sample, Cronbach’s alphas for mothers’ responses were externalizing .81 and cooperation .79. Cronbach’s alphas for fathers’ responses are externalizing .77 and cooperation .84.

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Analysis

SPSS 20 statistical software was used to calculate descriptive statistics, t tests, and correlations for study variables (Tables 2 and 3). Multilevel modeling was also used, which takes into account within-family dependence between fathers and mothers. The data from parents were arranged as multilevel data, with parents (Level 1) nested within families (Level 2). A sequence of five nested models was estimated using Mplus (Muthén & Muthén, 2010). All models included income and sibling age and gender as Level 2 predictors. Caregiver burden, parenting, sibling relationships, parent gender, and parent gender interactions with caregiver burden, parenting, and sibling relationships were Level 1 predictors. Constraints were placed on parameters, and nested models were compared to see if constraints worsened model fit. The Mplus MLR option was used for maximum likelihood estimation with robust standard errors, which also handles missing data.

Table 2
Table 2
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Table 3
Table 3
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Results
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Sample

Participants included 189 families. Researchers contacted conference and school administrators and then personally recruited volunteers from conferences for families of children with autism, Down syndrome, and other disabilities and home-based early intervention programs. Participant characteristics are reported in Table 1. Most of the participants were Caucasian and from two-parent families. More than half of CWD were male (63%), whereas less than half (37.6%) of the TDS were male. In families where there were more than one TDS, the TDS closest in age to the CWD was the focus of the study. This resulted in an average TDS age of 11.2 years with 67.9% being older than the CWD.

Table 1
Table 1
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Disabilities included autism (33.3%; n = 63), Down syndrome (22.8%; n = 43), other disabilities (27%; n = 51), and multiple disabilities (16.9%; n = 32). Other disabilities included orthopedic impairment, intellectual disabilities, emotional or physical disabilities, and health impairment. Multiple disabilities included both physical and intellectual disabilities. Analyses of variance indicated there was no significant difference between disability groups on CWD age, sibling age, income, and parent education.

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Descriptive Statistics and t Tests

Descriptive statistics (Table 2) show the mean for fathers’ ratings of caregiver burden was lower (1.75) than average score for mothers (2.09). On average, mothers exhibited higher degree of authoritative parenting practices (3.95) than fathers (3.68). This is reversed for authoritarian practices, with fathers reporting slightly higher levels (1.92) than mothers (1.84). Mean ratings by fathers and mothers were similar when reporting sibling relationship (fathers = 3.82, mothers = 3.8), externalizing behavior (fathers = 0.61, mothers = 0.6), and cooperation (fathers = 1.16, mothers = 1.23). Paired t tests indicated mothers scored significantly higher than fathers on caregiver burden (t = 6.40; p < .001) and authoritative parenting (t = 4.88; p < .001).

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Correlations

Bivariate correlations for mothers’ and fathers’ ratings differed: For fathers, a higher degree of authoritative parenting was positively associated with cooperation and negatively associated with externalizing, whereas for mothers, a higher degree of authoritative parenting was positively associated only with cooperation (Table 3). Mothers rated female TDS as having higher levels of cooperation, and fathers rated older TDS as having higher levels of cooperation. Mothers’ ratings of TDS externalizing behaviors were negatively related to age. Family income was inversely related to sibling externalizing behaviors for both parents, and sibling relationships were positively correlated with cooperative behaviors and negatively correlated with externalizing behaviors. For both parents, caregiver burden and authoritarian parenting were negatively associated with cooperation and positively associated with externalizing behaviors. Mother and father variables (reported on the diagonal) were all significantly correlated.

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Multilevel Models

Multilevel models were estimated to disentangle the effects of caregiver burden, parenting style, sibling relationships, and parent gender, thereby showing which variables are most predictive of TDS outcomes. In the models, income and sibling age and gender were Level 2 predictors because they did not vary within families. Caregiver burden, parenting, sibling relationships, parent gender (1 = fathers), and interactions (between parent gender and caregiver burden, parenting, and sibling relationships) were Level 1 predictors because they could differ for mothers and fathers in the same family. Predictor variables at each level were correlated with each other. The disturbances for the two outcome variables, sibling externalizing and cooperation, were also correlated. Each model included 378 observations and 189 mother–father pairs.

A null model was first estimated and examined the unconditional intraclass correlation coefficients to determine if there was substantial variability between families. The intraclass correlation coefficients were .46 for cooperation and .55 for externalizing, indicating sufficient variability between families; hence, a two-level model was appropriate.

Then a sequence of five models was tested (see Table, Supplemental Digital Content, which shows the Mplus code for the models, http://links.lww.com/NRES/A119). In each of the five models, income and sibling age and gender were Level 2 predictors, and cooperation and externalizing were the outcome variables (Table 4). Model 1 analyzes how caregiver burden relates to TDS cooperation and externalizing behaviors. Model 2 adds authoritative and authoritarian parenting style as predictors. Model 3 adds positive sibling relationships, Model 4 adds parent gender (1 = father), and Model 5 adds interactions between parent gender and the Level 1 predictors, caregiver burden, authoritarian and authoritative parenting, and sibling relationships.

Table 4
Table 4
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To determine which model best fit the data, the models were compared sequentially using a χ2 scaled difference test. Model 5 was the most general model, and no predictors were constrained. Constraints were incrementally added to each model (Table 4). Model 5 was not an improvement over Model 4, and Model 4 was not an improvement over Model 3. Model 2 fit the data better than Model 1, but Model 3 fit the data better than Model 2.

Standardized and unstandardized effects from Model 3 are reported in Table 5. Although in Model 1 caregiver burden was significantly related to both TDS cooperative and externalizing behaviors, in Model 3 caregiver burden was not significant. In Model 3, the degree of authoritative parenting predicted cooperation, and the degree of authoritarian parenting also was related to externalizing; positive sibling relationships predicted both cooperation and externalizing. Income predicted externalizing behavior, and female siblings were more cooperative than male siblings.

Table 5
Table 5
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Discussion

Family systems theory is useful in examining families raising a CWD because individuals are best understood in the context of the whole. Caregiver burden, parenting style, and sibling relationships are related to sibling outcomes; yet, some have a greater impact on TDS outcomes than others. This study fully integrates these four variables into one model, which is what family system theory suggests will be most beneficial in understanding families raising a CWD. In addition, minimal research on these variables considers both maternal and paternal reports; this study provides such an analysis.

First, the findings support previous studies, indicating that higher levels of caregiver burden are associated with negative TDS outcomes (Maas-van Schaajjk et al., 2013). These findings confirm that greater caregiver burden is correlated with less cooperative and more externalizing behaviors. This may occur because, as parents spend more time caring for the CWD, they have less time available to address TDS needs and wants, resulting in poorer child outcomes. However, it is also possible that stressors that increase caregiver burden (such as changes in health status or the CWD’s socially unacceptable behaviors) similarly contribute to TDS negative behaviors. Either explanation highlights the importance of understanding family dynamics.

Second, this study sought to answer what happens to the association between caregiver burden and TDS outcomes if parenting style is also considered. The results reinforce previous findings with TDS, supporting a relationship between parenting style and child outcomes (Simons & Conger, 2007). However, those findings related to families raising CWD were expanded. Although parent gender was not significantly correlated with behavior exhibited by the TDS in the multilevel analyses, this study found that authoritative parenting was more likely to be reported by mothers than by fathers. This highlights a potential need to include fathers in future research. Authoritative parenting significantly predicted TDS cooperation in the presence of caregiver burden, whereas authoritarian parenting significantly predicted externalizing behaviors in the presence of caregiver burden. A possible explanation is that parenting style directly affects TDS outcomes, whereas caregiver burden only indirectly affects TDS outcomes.

Lastly, this study discovered that positive sibling relationships are significant predictors of both TDS cooperative and externalizing behaviors—even when taking into consideration parenting style and caregiver burden. In families raising a CWD, once positive sibling relationships were included in the model, caregiver burden became insignificant and sibling relationship was the only variable consistently significant for both TDS outcomes. This makes sense in a family systems theory framework, which suggests these variables are not simply additive.

There are several possible explanations as to why sibling relationships are more predictive of TDS outcomes than caregiver burden or parenting style: Sibling relationships are integral for a child’s development (Mandleco, 2011). A good relationship and empathy for CWD likely facilitates TDS involvement in caring for the CWD. Working with parents to care for the CWD may assist the TDS in understanding differences in caregiver time and resource allocation. This partnership also could allow both the CWD and the TDS to receive parental involvement in spite of high caregiver burden and less available time for each child—which may be made possible because the CWD and the TDS initially have a positive relationship.

However, even in the presence of positive sibling relationships, authoritarian parenting style remains a significant predictor of externalizing behavior. An authoritarian parenting style does not promote resource sharing, which may lead to greater attention-seeking behavior. Hence, it is not surprising that authoritarian parenting is significantly correlated with externalizing behaviors—even in the presence of a positive sibling relationship.

In summary, the best fitting model most fully incorporates concepts from family systems theory. A reduced disruption to families’ and children’s lives can be achieved through care at home, and providers can be instrumental in empowering parents raising a CWD (Carter et al., 2012). To help guide families raising both a CWD and a TDS, providers should understand the interplay between predictors. Caregiver burden, parenting style, and sibling relationships matter individually, but when considered together, much of the effect is directed through the sibling relationship and parenting. Thus, families would benefit if counseling and early intervention strategies were redirected toward a truly more “family-centered” approach that includes the TDS and encourages positive parenting and sibling relationships.

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Limitations

There are limitations to this study: The design is cross-sectional, not longitudinal, and although correlations were identified, the findings do not establish causation. A convenience sample was employed, with participants gathered from educational and early intervention programs. Therefore, the sample reflects families currently receiving support and intervention, rather than families not receiving help, and parents proactive in their child’s treatment may be more likely to be represented. In addition, participants were similar demographically, including ethnicity (mostly Caucasian), socioeconomic status (primarily upper middle class), from the same geographic area, and two-parent families. The CWD had a variety of diagnoses; consequently, results might be different if the sample only included children with one type of disability. Only parental reports were collected. Because a parent is reporting on his own parenting style, his report may include more favorable behaviors than what a child perceives or what the parent actually exhibits. Sibling reporting or professional observation of behavior by another observer (such as school teachers or therapist) could add a greater depth of knowledge and understanding of the family system and variables.

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Future Research

Future research should include more ethnically and socioeconomic status diverse families as well as longitudinal data. Future designs and data collection should include data gathering and reporting by more than both parents, such as sibling reporting and focus on families of children with only one type of disabilities (e.g., autism). Possible effects of caregiver burden on parenting style may exist and should be investigated. Lastly, evaluating intervention strategies with a focus on involving siblings might prove informative.

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Conclusion

This study’s results suggest sibling relationships are related to TDS outcomes—even in the presence of caregiver burden and parenting style. However, in isolation, the latter two factors are significantly associated with sibling outcomes; yet, intervention programs that help create positive sibling relationships may be as impactful as those focusing on decreasing a parent’s burden or helping improve parenting practices. Therefore, in-home and intervention services based on helping CWD should not only include parents but also assist TDS to better interact with and understand the CWD. In addition, improving sibling relationships may decrease the effect of parental burden or undesirable parenting styles in such families. This knowledge can assist practitioners as they guide families. Consequently, programs and interventions should focus on facilitating positive sibling relationships that will act as protective factors for TDS in families raising a CWD.

Accepted for publication April 23, 2014.The authors express appreciation to Joseph A. Olsen, PhD, for his statistical expertise and consultation.The authors have no conflicts of interest to report.Corresponding author: Christine Platt, RN, BSN, College of Nursing, Brigham Young University, 400 SWKT, Provo, UT 84602 (e-mail: christine.platt.rn@gmail.com).Cited Here...

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Keywords:

child; disabled children; dyads; family relations; siblings; systems theory

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