Families, Systems, & Health 2014, Vol. 32, No. 2, 241–246
© 2014 American Psychological Association 1091-7527/14/$12.00 http://dx.doi.org/10.1037/fsh0000047
BRIEF REPORT
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Caregiver Burden and Sibling Relationships in Families Raising Children With Disabilities and Typically Developing Children Susanne Olsen Roper, PhD
Diane W. Allred, MS
Brigham Young University
Alpine Clinic, Lehi, Utah
Barbara Mandleco, PhD, RN, Donna Freeborn, APRN, PhD, and Tina Dyches, EdD Brigham Young University Using family systems theory as a theoretical framework, we investigated direct and indirect associations between type of disability, caregiver burden, and sibling relationships with structural equation modeling. We recruited 172 families raising typically developing children or a child with a disability. Participants volunteered at meetings and workshops for families of children with disabilities and were also recruited through snowball sampling. Mothers and fathers independently completed self-report questionnaires on caregiver burden and perceptions of the sibling relationship. Mothers experienced higher levels of caregiver burden than fathers. Parents of children with autism reported higher levels of caregiver burden than parents of typically developing children. Mothers of children with Down syndrome and multiple disabilities reported more positive sibling relationships than mothers of typically developing children. Mothers’ and fathers’ perceptions of caregiver burden were negatively related to their perceptions of the sibling relationship. Caregiver burden mediated the relationship between having a child with autism and positive sibling relationships. Results indicate the benefits of using a systems framework in examining families raising children with disabilities. Future research should focus on interventions for families of children with disabilities that help alleviate parental burden and foster positive sibling relationships. Keywords: caregiver burden, disabilities, sibling relationships
Challenges faced by families of children with disabilities (CWD) may vary, depending on the nature of the disability; however, research indi-
This article was published Online First May 12, 2014. Susanne Olsen Roper, PhD, School of Family Life, Brigham Young University; Diane W. Allred, MS, Alpine Clinic, Lehi, Utah; Barbara Mandleco, PhD, RN, and Donna Freeborn, APRN, PhD, College of Nursing, Brigham Young University; Tina Dyches, EdD, McKay School of Education, Brigham Young University. We express appreciation to the families who participated in this study and to the students who assisted with data collection. Funding for this study was provided by Graduate Studies, the Family Studies Center, the School of Family Life, and the College of Nursing at Brigham Young University. Correspondence concerning this article should be addressed to Susanne Olsen Roper, PhD, 2089 JFSB, Brigham Young University, Provo, UT 84602. E-mail: susanne_olsen_roper@byu .edu
cates that many parents of CWD face stress and demanding caregiver pressures (Abbeduto et al., 2004). Siblings also may experience stressors, including sibling relationship difficulties (Mulroy, Robertson, Aiberti, Leonard, & Bower, 2008). Despite a growing body of research regarding sibling relationships in families raising CWD, less is understood about the relationship between parent functioning and sibling relationships (Stoneman, 2005). In this study we extend previous research by investigating associations between type of disability, parental caregiver burden, and mothers’ and fathers’ perceptions of positive sibling relationships. Caregiver burden is defined as parental perceptions regarding how they have been negatively affected by the stresses and caregiving responsibilities of parenting (Khanna et al.,
241
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ROPER, ALLRED, MANDLECO, FREEBORN, AND DYCHES
2012). Burden may be higher in families raising CWD, as a result of the demands of caring for the CWD, as well as other children in the family. Stresses can originate from family problems, child behavioral and social issues, or lack of resources and support (Hastings et al., 2005; Mulroy et al., 2008). Research shows that the type of disability is related to the stress and subsequent burden experienced by parents. Specifically, mothers of children with Down syndrome (DS) report less stress than mothers of children with autism (Abbeduto et al., 2004). Parents of children with autism report more stress than parents of typically developing children (TDC) or other disabilities (Hastings et al., 2005; Mulroy et al., 2008). Sibling relationships also may differ, depending on the type of disability. For example, compared with siblings of TDC, siblings of children with autism report less intimacy, nurturance, and pro-social behavior. Siblings of children with DS and autism also report less quarreling and competition than siblings of TDC (Kaminsky & Dewey, 2001). Additionally, siblings of children with DS report more empathy (for same sex dyads) and less unkindness than siblings of TDC (Cuskelly & Gunn, 2003). Systems theory posits that individual family members are embedded in family subsystems which are interdependent (Cox & Paley, 1997). Thus, various subsystems in the family may impact sibling relationships. For example, in families of children with autism, marital relationship stress is associated with fewer positive and more negative sibling relationships (Rivers & Stoneman, 2003). In families raising a child with spina bifida, satisfaction with family functioning predicts both conflict and warmth in sibling relationships (Bellin & Rice, 2009). The above findings suggest that parental stress and sibling relationships differ in families raising children with different types of disabilities and that family functioning is associated with sibling relationships. Consequently, it seems likely that type of disability and caregiver burden would be related to sibling relationships. Therefore, we investigated three research questions: (a) Are caregiver burden and sibling relationships different in families raising CWD and TDC? (b) What is
the relationship between type of disability, caregiver burden, and sibling relationships? (c) Does caregiver burden mediate the relationship between type of disability and sibling relationships? Method Participants and Recruitment The research was approved by the Brigham Young University Institutional Review Board. Mothers, fathers, a “target child,” and a sibling close in age to the target child in 172 families living in Utah participated. Researchers recruited volunteer families of CWD at conferences and education programs. Families of typically developing target children and some CWD families were recruited through snowball sampling. Parents completed written questionnaires on two occasions. Most mothers (97%) and fathers (80%) completed the first set of questionnaires; 80% of mothers and 69% of fathers completed the second set. Procedure and Measures Parents granted consent and one parent (generally mothers) completed a demographic questionnaire. Families received a $20 gift card for participating. Caregiver burden. We measured caregiver burden with 13 items adapted from Robinson’s (1983) Caregiver Strain Index. Mothers (␣ ⫽ .87) and fathers (␣ ⫽ .86) independently assessed the burdens of caring for children (e.g., feeling overwhelmed at all there is to do in caring for my children). Parents rated how often they felt this way (1 ⫽ Rarely, 4 ⫽ Constantly) and how much of a hassle the feeling was (1 ⫽ No hassle, 4 ⫽ Big hassle). We examined hassle of burden because it describes how burden affects parents’ daily lives; higher scores represented higher hassles of burden. Parent perceptions of sibling relationships. Mothers (␣ ⫽ .95) and fathers (␣ ⫽ .96) individually completed the 28-item Sibling Inventory of Behavior (Schaefer & Edgerton, 1981), evaluating positive relationships between a typically developing sibling and a CWD (sample item: shows sympathy when things are hard for him/her). Parents rated the relationship (1 ⫽ Never; 5 ⫽ Always), and higher scores represented more positive sibling relationships.
CAREGIVER BURDEN AND SIBLING RELATIONSHIPS
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Results Target children in 136 families were children with disabilities: autism, including disabilities on the autism spectrum (n ⫽ 62, 36.00%); DS (n ⫽ 42, 24.40%); and multiple disabilities, which included both physical and intellectual disabilities (n ⫽ 32, 18.60%); 36 (20.90%) of the target children were typically developing children. Most (62.80%) target children were male, and 37.80% of siblings were male; 50. 00% of the sibling pairs were the same sex. The mean age of target children was 8.70 years (SD ⫽ 4.47). The average age of siblings was 10.93 years (SD ⫽ 3.66). The mean age difference between the target child and the sibling was 3.87 years (SD ⫽ 2.47). See Table 1 for other demographic information. Preliminary paired t tests showed no differences in sibling relationships for mothers and fathers, t(116) ⫽ ⫺.32; p ⬎ .05. Mothers (M ⫽ 2.03) scored higher than fathers (M ⫽ 1.76) on caregiver burden, t(138) ⫽ 5.31; p ⬍ .001. Bivariate correlations (see Table 2) showed caregiver burden was negatively correlated with perceptions of positive sibling relationships for mothers (r ⫽ ⫺.27, p ⬍ .01) and fathers (r ⫽
243
⫺.36, p ⬍ .001). Parents of children with autism (coded 1) experienced higher levels of caregiver burden than parents raising TDC (mothers, r ⫽ .19, p ⬍ .05; fathers, r ⫽ .28, p ⬍ .01). Fathers raising children with DS rated their burden lower than fathers raising TDC (r ⫽ ⫺.18, p ⬍ .05), whereas mothers of children with DS rated sibling relationships more positively (r ⫽ .19, p ⬍ .05) than mothers of TDC. We next investigated whether disability type (TDC ⫽ 0) and caregiver burden predicted sibling relationships, after controlling for demographic variables significantly related to sibling relationships. We estimated an actor–partner interdependence model (Kenny, Kashy, & Cook, 2006) using Analysis of Moment Structures (AMOS) structural equation modeling (Arbuckle, 2006). The model included manifest variables and correlated disturbances for mother and father ratings of caregiver burden and for mother and father ratings of sibling relationships. All exogenous variables (including control variables) were correlated. The model (see Figure 1) had good fit, 2(8) ⫽ 2.00, p ⫽ .98; CFI ⫽ 1.00; RMSEA ⫽ .001. After controlling for sibling gender
Table 1 Characteristics of the Sample (n ⫽ 172) Participating in the Sibling Relationships Study Characteristic
Mothers
Fathers
Mean (SD) age (years) Mean (SD) education (years) Mean (SD) hours worked/week Employed % (n) full-time % (n) part-time % (n) not employed/retired Mean (SD) number of children in family Mean (SD) target child age (years) Mean (SD) sibling age (years) Mean (SD) age difference of target child and sibling (years) % (n) male target child % (n) male sibling % (n) sibling pair same sex % (n) sibling older Target child % (n) typically developing % (n) autism % (n) Down syndrome % (n) multiple disabilities % (n) two parent family % (n) race: White % (n) family income ⬎$50,000/year
40.51 (7.20) 15.29 (2.03) 13.81 (16.73)
42.51 (7.60) 16.15 (2.46) 44.90 (11.78)
15.10 (26) 30.80 (53) 36.00 (62) 4.14 (2.15) 8.70 (4.47) 10.93 (3.66) 3.87 (2.47) 62.80 (108) 37.80 (65) 50.00 (86) 68.00 (117)
89.00 (153) 2.30 (4) 1.20 (2)
20.90 (36) 36.00 (62) 24.40 (42) 18.60 (32) 91.80 (158) 93.00 (160) 62.20 (107)
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Table 2 Correlations Among Demographic Variables, Disability Type, Caregiver Burden, and Sibling Relationships
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Variable 1 2 3 4 5 6 7 8 9 10
Down syndromea Autisma Multiple disabilitya Target child age Sibling sex Mother caregiver burden Father caregiver burden Mother positive sibling relationships Father positive sibling relationships Age difference (sib and target child)
1
2
3
4
5
6
7
8
9
⫺.43ⴱⴱⴱ ⫺.27ⴱⴱⴱ .01 .04 ⫺.06 ⫺.18ⴱ .19ⴱ .17 .24ⴱⴱ
⫺.36ⴱⴱ .02 ⫺.03 .19ⴱ .28ⴱⴱ ⫺.16 ⫺.17 ⫺.09
.27ⴱⴱ .04 .01 ⫺.12 .08 .16 ⫺.19ⴱ
.10 .06 ⫺.02 ⫺.23ⴱⴱ ⫺.17 ⫺.30ⴱⴱ
.02 ⫺.06 .22ⴱ ⫺.07 .03
.36ⴱⴱⴱ ⫺.27ⴱⴱ ⫺.07 ⫺.02
⫺.18ⴱ ⫺.36ⴱⴱⴱ .01
.72ⴱⴱ .21ⴱ
.22ⴱ
Note. Potential confounding variables not shown in the correlation matrix because they were unrelated to sibling relationships included: family income, mother and father hours worked, sibling age, target child sex, sibling birth order, and gender of sibling pair. a Typically developing children ⫽ 0. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
(male ⫽ 0), target child age, and the age difference between the target child and sibling, mothers of children with multiple disabilities ( ⫽ .26, p ⬍ .05) and parents of children with au-
.38 (.32)***
tism (mothers,  ⫽ .38, p ⬍ .001; fathers,  ⫽ .28, p ⬍ .001) reported higher levels of caregiver burden than parents of TDC. Mothers of children with DS ( ⫽ .37, p ⬍ .01) and parents
Mother Caregiver Burden R2 =.06
Autism
-.25 (-.24)*
.26 (.17)*
.37 (.27)**
Down syndrome
Mother Positive Sibling Relationships R2 =.27
.39 (.26)**
.39 (.27)**
Father Positive Sibling Relationships R2 =.28 -.41 (-.34)***
Multiple Disabilities
.28 (.28)*** Father Caregiver Burden R2 =.08
Figure 1. Path model showing unstandardized (standardized) regression coefficients for relationships among disability type, caregiver burden, and positive sibling relationships. Model fit indicators: 2(8) ⫽ 2.00, p ⫽ .98; CFI ⫽ 1.00; RMSEA ⫽ .001. Correlated errors and control variables (sibling sex [male ⫽ 0], target child age, and the age difference between the target child and sibling) not shown. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
CAREGIVER BURDEN AND SIBLING RELATIONSHIPS
of children with multiple disabilities (mothers,  ⫽ .39, p ⬍ .01; fathers,  ⫽ .39, p ⬍ .01) reported more positive sibling relationships than parents of TDC. Lower caregiver burden was related to more positive sibling relationships for mothers ( ⫽ ⫺.25, p ⬍ .01) and fathers ( ⫽ ⫺.41, p ⬍ .001). Sobel tests (Preacher & Leonardelli, 2006) showed that caregiver burden significantly mediated the association between having a child with autism and positive sibling relationships for mothers (z ⫽ ⫺2.21, p ⬍ .05) and fathers (z ⫽ ⫺2.60, p ⬍ .01).
245
Parents also did not report on the severity of disability symptoms. Systems theory suggests that interventions aimed at family systems will be more effective than those directed only at individuals (Cox & Paley, 1997). Interventionists and clinicians must educate parents about relieving caregiver stress and burden, including providing information about respite services and available resources. In addition, interventions focusing on fostering positive sibling relationships in families raising a CWD would also be helpful. References
Discussion We found significant differences in sibling relationships and caregiver burden, depending on the type of disability. Mothers of children with DS and parents of children with multiple disabilities reported more positive sibling relationships than mothers of TDC. The sociability of children with DS (Abbeduto et al., 2004) and the nurturing needs of children with multiple disabilities may contribute to positive relationships for these siblings. Additionally, parents of children with autism and mothers of children with multiple disabilities reported more caregiver burden than parents of TDC. It is possible that caregiver burden may be exacerbated by the challenging behaviors of children with autism (Abbeduto et al., 2004) and the pervasive physical needs of children with multiple disabilities. Results showed that when mothers and fathers reported higher levels of burden, parents rated sibling relationships less positively. It may be that increased caregiver needs required by the CWD and mothers’ limited time to provide that care (Mulroy et al., 2008) may spill over into the sibling subsystem, resulting in less positive sibling relationships. We identified several study limitations. Parents were volunteers living in the same geographic area, primarily White, mostly middle class, and from two-parent families. The research was cross sectional so we were unable to identify the direction of effects. The number of participants in disability groups was small, contributing to low statistical power. Finally, parents reported on their caregiver burden and sibling relationships, which may produce different results than if siblings reported on themselves.
Abbeduto, L., Seltzer, M. M., Shattuck, P., Krauss, M. W., Orsmond, G., & Murphy, M. M. (2004). Psychological well-being and coping in mothers of youth with autism, Down syndrome, or fragile X syndrome. American Journal on Mental Retardation, 109, 237–254. doi:10.1352/08958017(2004)109⬍237:PWACIM⬎2.0.CO;2 Arbuckle, J. L. (2006). AMOS (Version 7:0) [Computer program]. Chicago, IL: SPSS. Bellin, M. H., & Rice, K. M. (2009). Individual, family, and peer factors associated with the quality of sibling relationships in families of youths with spina bifida. Journal of Family Psychology, 23, 39 – 47. doi:10.1037/a0014381 Cox, M. J., & Paley, B. (1997). Families as systems. Annual Review of Psychology, 48, 243–267. doi: 10.1146/annurev.psych.48.1.243 Cuskelly, M., & Gunn, P. (2003). Sibling relationships of children with Down syndrome: Perspectives of mothers, fathers, and siblings. American Journal on Mental Retardation, 108, 234 –244. doi:10.1352/0895-8017(2003)108⬍234:SROC WD⬎2.0.CO;2 Hastings, R. P., Kovshoff, H., Ward, N. J., Espinosa, F. D., Brown, T., & Remington, B. (2005). Systems analysis of stress and positive perceptions in mothers and fathers of pre-school children with autism. Journal of Autism and Developmental Disorders, 35, 635– 644. doi:10.1007/s10803-0050007-8 Kaminsky, L., & Dewey, D. (2001). Sibling relationships of children with autism. Journal of Autism and Developmental Disorders, 31, 399 – 410. Retrieved from http://web.ebscohost.com/ehost/ pdfviewer/pdfviewer?vid⫽6&sid⫽9b1bac9928fb-449c-9c5a-7d16bee66042%40sessionmgr110& hid⫽124 Kenny, D. A., Kashy, D. A., & Cook, W. L. (2006). Dyadic data analysis. New York, NY: Guilford Press. Khanna, R., Madhavan, S. S., Smith, M. J., Tworek, C., Patrick, J. H., & Becker-Cottrill, B. (2012).
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Psychometric properties of the Caregiver Strain Questionnaire (CGSQ) among caregivers of children with autism. Autism, 16, 179 –199. doi: 10.1177/1362361311406143 Mulroy, S., Robertson, L., Aiberti, K., Leonard, H., & Bower, C. (2008). The impact of having a sibling with an intellectual disability: Parental perspectives in two disorders. Journal of Intellectual Disability Research, 52, 216 –229. doi: 10.1111/j.1365-2788.2007.01005.x Preacher, K., & Leonardelli, G. (2006). Calculation for the Sobel test. Retrieved from http://quantpsy .org/sobel/sobel.htm Rivers, J. W., & Stoneman, Z. (2003). Sibling relationships when a child has autism: Marital stress and support coping. Journal of Autism and Devel-
opmental Disorders, 33, 383–394. doi:10.1023/A: 1025006727395 Robinson, B. (1983). Validation of a caregiver strain index. Journal of Gerontology, 38, 344 –348. doi: 10.1093/geronj/38.3.344 Schaefer, E. Y., & Edgerton, M. (1981). The sibling inventory of behavior. Chapel Hill, NY: University of North Carolina. Stoneman, Z. (2005). Siblings of children with disabilities: Research themes. Mental Retardation, 43, 339 –350. Received July 5, 2013 Revision received March 6, 2014 Accepted March 13, 2014 䡲
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© 2014 American Psychological Association 1091-7527/14/$12.00 http://dx.doi.org/10.1037/fsh0000047
BRIEF REPORT
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
Caregiver Burden and Sibling Relationships in Families Raising Children With Disabilities and Typically Developing Children Susanne Olsen Roper, PhD
Diane W. Allred, MS
Brigham Young University
Alpine Clinic, Lehi, Utah
Barbara Mandleco, PhD, RN, Donna Freeborn, APRN, PhD, and Tina Dyches, EdD Brigham Young University Using family systems theory as a theoretical framework, we investigated direct and indirect associations between type of disability, caregiver burden, and sibling relationships with structural equation modeling. We recruited 172 families raising typically developing children or a child with a disability. Participants volunteered at meetings and workshops for families of children with disabilities and were also recruited through snowball sampling. Mothers and fathers independently completed self-report questionnaires on caregiver burden and perceptions of the sibling relationship. Mothers experienced higher levels of caregiver burden than fathers. Parents of children with autism reported higher levels of caregiver burden than parents of typically developing children. Mothers of children with Down syndrome and multiple disabilities reported more positive sibling relationships than mothers of typically developing children. Mothers’ and fathers’ perceptions of caregiver burden were negatively related to their perceptions of the sibling relationship. Caregiver burden mediated the relationship between having a child with autism and positive sibling relationships. Results indicate the benefits of using a systems framework in examining families raising children with disabilities. Future research should focus on interventions for families of children with disabilities that help alleviate parental burden and foster positive sibling relationships. Keywords: caregiver burden, disabilities, sibling relationships
Challenges faced by families of children with disabilities (CWD) may vary, depending on the nature of the disability; however, research indi-
This article was published Online First May 12, 2014. Susanne Olsen Roper, PhD, School of Family Life, Brigham Young University; Diane W. Allred, MS, Alpine Clinic, Lehi, Utah; Barbara Mandleco, PhD, RN, and Donna Freeborn, APRN, PhD, College of Nursing, Brigham Young University; Tina Dyches, EdD, McKay School of Education, Brigham Young University. We express appreciation to the families who participated in this study and to the students who assisted with data collection. Funding for this study was provided by Graduate Studies, the Family Studies Center, the School of Family Life, and the College of Nursing at Brigham Young University. Correspondence concerning this article should be addressed to Susanne Olsen Roper, PhD, 2089 JFSB, Brigham Young University, Provo, UT 84602. E-mail: susanne_olsen_roper@byu .edu
cates that many parents of CWD face stress and demanding caregiver pressures (Abbeduto et al., 2004). Siblings also may experience stressors, including sibling relationship difficulties (Mulroy, Robertson, Aiberti, Leonard, & Bower, 2008). Despite a growing body of research regarding sibling relationships in families raising CWD, less is understood about the relationship between parent functioning and sibling relationships (Stoneman, 2005). In this study we extend previous research by investigating associations between type of disability, parental caregiver burden, and mothers’ and fathers’ perceptions of positive sibling relationships. Caregiver burden is defined as parental perceptions regarding how they have been negatively affected by the stresses and caregiving responsibilities of parenting (Khanna et al.,
241
This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly.
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ROPER, ALLRED, MANDLECO, FREEBORN, AND DYCHES
2012). Burden may be higher in families raising CWD, as a result of the demands of caring for the CWD, as well as other children in the family. Stresses can originate from family problems, child behavioral and social issues, or lack of resources and support (Hastings et al., 2005; Mulroy et al., 2008). Research shows that the type of disability is related to the stress and subsequent burden experienced by parents. Specifically, mothers of children with Down syndrome (DS) report less stress than mothers of children with autism (Abbeduto et al., 2004). Parents of children with autism report more stress than parents of typically developing children (TDC) or other disabilities (Hastings et al., 2005; Mulroy et al., 2008). Sibling relationships also may differ, depending on the type of disability. For example, compared with siblings of TDC, siblings of children with autism report less intimacy, nurturance, and pro-social behavior. Siblings of children with DS and autism also report less quarreling and competition than siblings of TDC (Kaminsky & Dewey, 2001). Additionally, siblings of children with DS report more empathy (for same sex dyads) and less unkindness than siblings of TDC (Cuskelly & Gunn, 2003). Systems theory posits that individual family members are embedded in family subsystems which are interdependent (Cox & Paley, 1997). Thus, various subsystems in the family may impact sibling relationships. For example, in families of children with autism, marital relationship stress is associated with fewer positive and more negative sibling relationships (Rivers & Stoneman, 2003). In families raising a child with spina bifida, satisfaction with family functioning predicts both conflict and warmth in sibling relationships (Bellin & Rice, 2009). The above findings suggest that parental stress and sibling relationships differ in families raising children with different types of disabilities and that family functioning is associated with sibling relationships. Consequently, it seems likely that type of disability and caregiver burden would be related to sibling relationships. Therefore, we investigated three research questions: (a) Are caregiver burden and sibling relationships different in families raising CWD and TDC? (b) What is
the relationship between type of disability, caregiver burden, and sibling relationships? (c) Does caregiver burden mediate the relationship between type of disability and sibling relationships? Method Participants and Recruitment The research was approved by the Brigham Young University Institutional Review Board. Mothers, fathers, a “target child,” and a sibling close in age to the target child in 172 families living in Utah participated. Researchers recruited volunteer families of CWD at conferences and education programs. Families of typically developing target children and some CWD families were recruited through snowball sampling. Parents completed written questionnaires on two occasions. Most mothers (97%) and fathers (80%) completed the first set of questionnaires; 80% of mothers and 69% of fathers completed the second set. Procedure and Measures Parents granted consent and one parent (generally mothers) completed a demographic questionnaire. Families received a $20 gift card for participating. Caregiver burden. We measured caregiver burden with 13 items adapted from Robinson’s (1983) Caregiver Strain Index. Mothers (␣ ⫽ .87) and fathers (␣ ⫽ .86) independently assessed the burdens of caring for children (e.g., feeling overwhelmed at all there is to do in caring for my children). Parents rated how often they felt this way (1 ⫽ Rarely, 4 ⫽ Constantly) and how much of a hassle the feeling was (1 ⫽ No hassle, 4 ⫽ Big hassle). We examined hassle of burden because it describes how burden affects parents’ daily lives; higher scores represented higher hassles of burden. Parent perceptions of sibling relationships. Mothers (␣ ⫽ .95) and fathers (␣ ⫽ .96) individually completed the 28-item Sibling Inventory of Behavior (Schaefer & Edgerton, 1981), evaluating positive relationships between a typically developing sibling and a CWD (sample item: shows sympathy when things are hard for him/her). Parents rated the relationship (1 ⫽ Never; 5 ⫽ Always), and higher scores represented more positive sibling relationships.
CAREGIVER BURDEN AND SIBLING RELATIONSHIPS
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Results Target children in 136 families were children with disabilities: autism, including disabilities on the autism spectrum (n ⫽ 62, 36.00%); DS (n ⫽ 42, 24.40%); and multiple disabilities, which included both physical and intellectual disabilities (n ⫽ 32, 18.60%); 36 (20.90%) of the target children were typically developing children. Most (62.80%) target children were male, and 37.80% of siblings were male; 50. 00% of the sibling pairs were the same sex. The mean age of target children was 8.70 years (SD ⫽ 4.47). The average age of siblings was 10.93 years (SD ⫽ 3.66). The mean age difference between the target child and the sibling was 3.87 years (SD ⫽ 2.47). See Table 1 for other demographic information. Preliminary paired t tests showed no differences in sibling relationships for mothers and fathers, t(116) ⫽ ⫺.32; p ⬎ .05. Mothers (M ⫽ 2.03) scored higher than fathers (M ⫽ 1.76) on caregiver burden, t(138) ⫽ 5.31; p ⬍ .001. Bivariate correlations (see Table 2) showed caregiver burden was negatively correlated with perceptions of positive sibling relationships for mothers (r ⫽ ⫺.27, p ⬍ .01) and fathers (r ⫽
243
⫺.36, p ⬍ .001). Parents of children with autism (coded 1) experienced higher levels of caregiver burden than parents raising TDC (mothers, r ⫽ .19, p ⬍ .05; fathers, r ⫽ .28, p ⬍ .01). Fathers raising children with DS rated their burden lower than fathers raising TDC (r ⫽ ⫺.18, p ⬍ .05), whereas mothers of children with DS rated sibling relationships more positively (r ⫽ .19, p ⬍ .05) than mothers of TDC. We next investigated whether disability type (TDC ⫽ 0) and caregiver burden predicted sibling relationships, after controlling for demographic variables significantly related to sibling relationships. We estimated an actor–partner interdependence model (Kenny, Kashy, & Cook, 2006) using Analysis of Moment Structures (AMOS) structural equation modeling (Arbuckle, 2006). The model included manifest variables and correlated disturbances for mother and father ratings of caregiver burden and for mother and father ratings of sibling relationships. All exogenous variables (including control variables) were correlated. The model (see Figure 1) had good fit, 2(8) ⫽ 2.00, p ⫽ .98; CFI ⫽ 1.00; RMSEA ⫽ .001. After controlling for sibling gender
Table 1 Characteristics of the Sample (n ⫽ 172) Participating in the Sibling Relationships Study Characteristic
Mothers
Fathers
Mean (SD) age (years) Mean (SD) education (years) Mean (SD) hours worked/week Employed % (n) full-time % (n) part-time % (n) not employed/retired Mean (SD) number of children in family Mean (SD) target child age (years) Mean (SD) sibling age (years) Mean (SD) age difference of target child and sibling (years) % (n) male target child % (n) male sibling % (n) sibling pair same sex % (n) sibling older Target child % (n) typically developing % (n) autism % (n) Down syndrome % (n) multiple disabilities % (n) two parent family % (n) race: White % (n) family income ⬎$50,000/year
40.51 (7.20) 15.29 (2.03) 13.81 (16.73)
42.51 (7.60) 16.15 (2.46) 44.90 (11.78)
15.10 (26) 30.80 (53) 36.00 (62) 4.14 (2.15) 8.70 (4.47) 10.93 (3.66) 3.87 (2.47) 62.80 (108) 37.80 (65) 50.00 (86) 68.00 (117)
89.00 (153) 2.30 (4) 1.20 (2)
20.90 (36) 36.00 (62) 24.40 (42) 18.60 (32) 91.80 (158) 93.00 (160) 62.20 (107)
244
ROPER, ALLRED, MANDLECO, FREEBORN, AND DYCHES
Table 2 Correlations Among Demographic Variables, Disability Type, Caregiver Burden, and Sibling Relationships
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Variable 1 2 3 4 5 6 7 8 9 10
Down syndromea Autisma Multiple disabilitya Target child age Sibling sex Mother caregiver burden Father caregiver burden Mother positive sibling relationships Father positive sibling relationships Age difference (sib and target child)
1
2
3
4
5
6
7
8
9
⫺.43ⴱⴱⴱ ⫺.27ⴱⴱⴱ .01 .04 ⫺.06 ⫺.18ⴱ .19ⴱ .17 .24ⴱⴱ
⫺.36ⴱⴱ .02 ⫺.03 .19ⴱ .28ⴱⴱ ⫺.16 ⫺.17 ⫺.09
.27ⴱⴱ .04 .01 ⫺.12 .08 .16 ⫺.19ⴱ
.10 .06 ⫺.02 ⫺.23ⴱⴱ ⫺.17 ⫺.30ⴱⴱ
.02 ⫺.06 .22ⴱ ⫺.07 .03
.36ⴱⴱⴱ ⫺.27ⴱⴱ ⫺.07 ⫺.02
⫺.18ⴱ ⫺.36ⴱⴱⴱ .01
.72ⴱⴱ .21ⴱ
.22ⴱ
Note. Potential confounding variables not shown in the correlation matrix because they were unrelated to sibling relationships included: family income, mother and father hours worked, sibling age, target child sex, sibling birth order, and gender of sibling pair. a Typically developing children ⫽ 0. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
(male ⫽ 0), target child age, and the age difference between the target child and sibling, mothers of children with multiple disabilities ( ⫽ .26, p ⬍ .05) and parents of children with au-
.38 (.32)***
tism (mothers,  ⫽ .38, p ⬍ .001; fathers,  ⫽ .28, p ⬍ .001) reported higher levels of caregiver burden than parents of TDC. Mothers of children with DS ( ⫽ .37, p ⬍ .01) and parents
Mother Caregiver Burden R2 =.06
Autism
-.25 (-.24)*
.26 (.17)*
.37 (.27)**
Down syndrome
Mother Positive Sibling Relationships R2 =.27
.39 (.26)**
.39 (.27)**
Father Positive Sibling Relationships R2 =.28 -.41 (-.34)***
Multiple Disabilities
.28 (.28)*** Father Caregiver Burden R2 =.08
Figure 1. Path model showing unstandardized (standardized) regression coefficients for relationships among disability type, caregiver burden, and positive sibling relationships. Model fit indicators: 2(8) ⫽ 2.00, p ⫽ .98; CFI ⫽ 1.00; RMSEA ⫽ .001. Correlated errors and control variables (sibling sex [male ⫽ 0], target child age, and the age difference between the target child and sibling) not shown. ⴱ p ⬍ .05. ⴱⴱ p ⬍ .01. ⴱⴱⴱ p ⬍ .001.
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CAREGIVER BURDEN AND SIBLING RELATIONSHIPS
of children with multiple disabilities (mothers,  ⫽ .39, p ⬍ .01; fathers,  ⫽ .39, p ⬍ .01) reported more positive sibling relationships than parents of TDC. Lower caregiver burden was related to more positive sibling relationships for mothers ( ⫽ ⫺.25, p ⬍ .01) and fathers ( ⫽ ⫺.41, p ⬍ .001). Sobel tests (Preacher & Leonardelli, 2006) showed that caregiver burden significantly mediated the association between having a child with autism and positive sibling relationships for mothers (z ⫽ ⫺2.21, p ⬍ .05) and fathers (z ⫽ ⫺2.60, p ⬍ .01).
245
Parents also did not report on the severity of disability symptoms. Systems theory suggests that interventions aimed at family systems will be more effective than those directed only at individuals (Cox & Paley, 1997). Interventionists and clinicians must educate parents about relieving caregiver stress and burden, including providing information about respite services and available resources. In addition, interventions focusing on fostering positive sibling relationships in families raising a CWD would also be helpful. References
Discussion We found significant differences in sibling relationships and caregiver burden, depending on the type of disability. Mothers of children with DS and parents of children with multiple disabilities reported more positive sibling relationships than mothers of TDC. The sociability of children with DS (Abbeduto et al., 2004) and the nurturing needs of children with multiple disabilities may contribute to positive relationships for these siblings. Additionally, parents of children with autism and mothers of children with multiple disabilities reported more caregiver burden than parents of TDC. It is possible that caregiver burden may be exacerbated by the challenging behaviors of children with autism (Abbeduto et al., 2004) and the pervasive physical needs of children with multiple disabilities. Results showed that when mothers and fathers reported higher levels of burden, parents rated sibling relationships less positively. It may be that increased caregiver needs required by the CWD and mothers’ limited time to provide that care (Mulroy et al., 2008) may spill over into the sibling subsystem, resulting in less positive sibling relationships. We identified several study limitations. Parents were volunteers living in the same geographic area, primarily White, mostly middle class, and from two-parent families. The research was cross sectional so we were unable to identify the direction of effects. The number of participants in disability groups was small, contributing to low statistical power. Finally, parents reported on their caregiver burden and sibling relationships, which may produce different results than if siblings reported on themselves.
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