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Siblings of children with autism: Predictors of adjustment
Research in Autism Spectrum Disorders 7 (2013) 1323–1331
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Siblings of children with autism: Predictors of adjustment Tessa L. Hesse a,*, Christina M. Danko b, Karen S. Budd b a b
University of California, Davis, Department of Human Ecology, One Shields Avenue, Davis, CA 95616, United States DePaul University, Department of Psychology, 2219N. Kenmore Avenue, Chicago, IL 60614, United States
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 July 2012 Received in revised form 29 March 2013 Accepted 30 July 2013
As the prevalence of autism increases, so does the need to examine the effects of autism on family members of children with autism. The current study evaluated possible predictors of adjustment in siblings of children with autism. Aspects of the parents’ functioning as caregivers for a child with autism were examined to determine whether they predicted the adjustment of the child’s sibling. Two hundred caregivers of 4–10-year-old children with autism who had at least one sibling without autism participated by filling out questionnaires online. Parental satisfaction with the role of caregiver for the child with autism was negatively correlated with difficulties in sibling adjustment, and it was the only significant predictor of sibling adjustment in a hierarchical regression analysis. Parental stress and parental self-efficacy were not unique contributors to sibling adjustment when other parental variables were considered. No significant relationship was found between parental therapy involvement and sibling adjustment, or between parental educational involvement and sibling adjustment. The lack of parental involvement as a predictor of sibling adjustment adds new findings to the current literature, which had found such a relationship in a previous study with a smaller sample. ß 2013 Elsevier Ltd. All rights reserved.
Keywords: Adjustment Siblings Autism spectrum disorder Parents Sibling adjustment Parent satisfaction
1. Introduction Autism spectrum disorders (ASDs) are a group of disorders characterized by impairments in social skills and communication, and are often accompanied by repetitive and ritualistic behaviors (American Psychiatric Association, 2000; Matson, Dempsey & Fodstad, 2009). In addition, cognitive deficits and challenging or unusual behaviors such as self-injury, difficulty with changes in routines, aggression, and characteristics such as sensitivity to sensory stimuli are often present in individuals with ASDs (Matson, Wilkins, & Gonzalez, 2007). The estimated prevalence of ASDs (referred to in this paper as autism) has been increasing in recent years, with an average prevalence rate of 1 in every 88 children reported in 2008 (Centers for Disease Control and Prevention, 2012). As the prevalence of autism increases, so does the need to evaluate the difficulties families face living with a child affected by autism. In this study, we examine the adjustment of siblings of children with autism and identify possible predictors of siblings’ adjustment. When using the term adjustment, we refer to the internalizing and externalizing behavior problems of the sibling of the child with autism. Previous research findings on the effects of autism on sibling adjustment are mixed; it has been shown that siblings are affected both positively (Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004) and negatively (Ross & Cuskelly, 2006) by having a brother or sister with autism. Giallo and Gavidia-Payne (2006) found siblings of children with
* Corresponding author. Tel.: +1 661 302 8380; fax: +1 773 325 7888. E-mail addresses: [email protected], [email protected] (T.L. Hesse). 1750-9467/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2013.07.024
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developmental delays to have significantly higher overall adjustment difficulties, emotional symptoms, and peer problems and lower pro-social behavior compared to normative levels. Similarly, Ross and Cuskelly (2006) found siblings of children with autism to be at increased risk for internalizing behavior problems. On the other hand, Pilowsky et al. (2004) found that, when measuring the social skills and behavior problems of siblings of children with autism, the siblings were overall well adjusted when compared to a normative sample and a sample of siblings with other diagnoses. In addition, Kaminsky and Dewey (2002) found the siblings of children with autism to be well adjusted, with similar levels of internalizing and externalizing behavior problems when compared to siblings of children with Down syndrome and a normative sample. Raising a child with autism or another developmental disability is often stressful for parents and can affect sibling adjustment as well. Hoffman, Sweeney, Hodge, Lopez-Wagner and Looney (2009) found parental stress to be higher among mothers of children with autism compared to both mothers of typical children and mothers of children with developmental delays. Children with an intellectual disability often have higher levels of behavior problems than children without an intellectual disability (Baker et al., 2003). When examining child-related stress in parents of a child with an intellectual disability, Baker et al. (2003) found child behavior problems contributed to increased parental stress a year later. Similarly, Keen, Couzens, Muspratt, and Rodger (2010) found that parents of children with autism reported high levels of childrelated stress and indicated that children with autism displayed qualities that they found challenging, such as demanding behaviors and distractibility. Parenting stress has been shown to be a strong predictor of sibling adjustment (Giallo & Gavidia-Payne, 2006). The adjustment of siblings of children with a disability was predicted better by levels of parent stress than the siblings’ report of their own stress and coping (Giallo & Gavidia-Payne, 2006). Additionally, Quintero and McIntyre (2010) found that maternal parenting stress was significantly correlated with both teacher and parent report of adjustment in siblings of children with autism. In addition to stress, parental competence in the role of caregiver has been related to behavior problems in children. Johnston and Mash (1989) describe parental self-efficacy as an instrumental dimension reflecting how much a parent feels capable and competent, familiar with the parenting role, and able to problem solve. Further, the authors define parental satisfaction as an affective dimension reflecting how much a parent feels frustrated, anxious, or poorly motivated as a parent. Johnston and Mash (1989) found that parental competence (parental self-efficacy and parental satisfaction combined) was negatively associated with internalizing and externalizing child behavior problems for mothers and fathers in a normative sample. Sanders and Woolley (2005) found that mothers of children with conduct problems who were seeking professional help with parenting reported lower levels of self-efficacy than mothers of a control (community) sample. Hastings and Brown (2002) established that self-efficacy in mothers of children with autism was negatively associated with child behavior problems in the child with autism as well. Parents are often involved in the in-home therapy programs for children with autism, and they frequently assume the role of the therapist and directly provide therapy (Hastings, 2003). Studies suggest that having a parent involved in the intervention for the child with autism is related to increased parent self-efficacy and decreased parenting stress. For example, Kuhn and Carter (2006) found that when mothers of children with autism were actively involved in promoting their child’s development, they reported higher levels of self-efficacy. Solish and Perry (2008) were the first to operationalize involvement and examine predictors associated with parental involvement in terms of parents of children with autism in intensive behavioral therapy settings. These authors found that parental self-efficacy was a strong predictor of parental involvement in the child’s intensive behavioral intervention at home (Solish and Perry, 2008). Studies have suggested that the family’s role in therapy needs to be examined to assess any effects therapy may have on the siblings of the child with autism (Hastings & Johnson, 2001; Hastings & Symes, 2002). Benson and Karlof (2008) examined several predictors of later adjustment in siblings of children with autism, including severity of symptoms in the child with autism, parenting stress, family climate, and parental involvement in the education and therapeutic services of the child with autism. The authors found that increased levels of parental involvement were associated with greater positive sibling adjustment (Benson & Karlof, 2008). By identifying predictors of sibling adjustment, proactive measures can be taken to prevent or counteract adjustment difficulties in the siblings of children with autism. For instance, professionals can offer support (e.g., sibling support groups, therapy referrals, access to resources) to enhance siblings’ adjustment. In addition, if parents are aware that factors such as their own stress, satisfaction, and self-efficacy in caring for a child with autism may also influence the sibling’s adjustment, they themselves can seek treatment for stress or change various aspects of their life to improve their functioning as a parent. The current study evaluated whether aspects of parents’ functioning as caregivers of a child with autism predicted the behavioral adjustment of siblings. Specifically, we investigated the relationship between parental stress, parental sense of competence (self-efficacy and satisfaction), and level of parental involvement with the child with autism in both the in-home therapy setting and in school setting, and overall sibling adjustment. Based on prior research, we hypothesized that the parent variables would contribute to predicting sibling adjustment. No studies to date have used the Parental Sense Of Competence (PSOC) (Johnston & Mash, 1989) scale to assess the effects of parental satisfaction and self-efficacy on siblings of children with autism; thus, this study provided an initial test of the instrument’s usefulness in detecting relationships between these two dimensions of parental competence and sibling adjustment in this population. We expected that more positive levels of sibling adjustment would be predicted by higher levels of parental involvement in school and home therapy (for the child with autism), higher parental self-efficacy and satisfaction, and lower parental stress (with the child with autism).
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2. Method 2.1. Participants Participants in the current study, which was approved by the university’s Institutional Review Board, consisted of caregivers of both a child with autism and a sibling. Both children were required to be between the ages of 4 and 10 years, and the sibling could not have been diagnosed specifically with autism. Children were required to be within this age range because the measure of sibling adjustment used in this study, the Strengths and Difficulties Questionnaire, has only been validated for parents of children aged 4–10. Diagnosis of both autism and a possible developmental delay/disability in the sibling was solely based on caregiver report. Parents were asked to indicate whether their child had been diagnosed with an autism spectrum disorder (yes/no). Caregivers who indicated the sibling participant had autism were redirected to the end of the survey. (Hereafter, the children with autism will be referred to as autism participants, and the siblings as sibling participants, although it was the caregivers, not the children who participated in the study). Sibling participants with other disorders, such as ADHD, were permitted into the study. A total of 360 participants began the survey, 200 of whom completed the measures. It is believed that many of the parents did not complete the questionnaires because they realized they did not meet the qualifications once they came to the questions regarding sibling diagnosis or age restrictions. Although the eligibility criteria for the study were stated in the study introduction, most of the incomplete surveys were missing data after the section on sibling participants. 2.1.1. Caregiver demographics Ninety-three percent of caregivers were female, and 99 percent were biological caregivers, with a mean age of 35.54 (SD = 5.27). The majority of caregivers were caucasian (89.6%), and the median level of income was in the $60,001–$100,000 range. The education level of most caregivers was some college, with a mean of 14.76 (SD = 2.57) years of education (12 years being a high school graduate). The geographic location of the caregiver participants consisted of residences both inside (n = 179, 89.5%) and outside (n = 21, 10.5%) the United States. 2.1.2. Autism and sibling participant demographics Children with autism (autism participants) had a mean age of 6.82 years (SD = 1.97) and the majority was male (87%). Fifty percent of the participating siblings were boys and 50 percent were girls, with a mean age of 6.61 (SD = 1.91). Based on parent report, 13 percent of the participating siblings were formally diagnosed with a developmental delay or disability other than autism. Reported delays/disabilities among the 13 percent of sibling participants included a speech delay (27%), ADHD (23%), a medical diagnosis (12%), and a general delay/not specified (39%). 2.2. Procedures Caregiver participants were recruited via two online social networking websites. The principal investigator posted a general announcement about the study stating inclusion criteria, the incentive of a raffle entry, and a link to the questionnaire. Data were gathered from participating caregivers using the online questionnaire database http:// www.surveymonkey.com. After participating in the survey, participants could choose to enter a raffle drawing to receive one of 10 $20 gift cards. 2.3. Materials 2.3.1. Socio-demographic information A demographics questionnaire was used to collect background information on the child with autism, the sibling, and the caregiver. In addition to basic demographic information, information was collected on the autism participant’s formal diagnosis (based solely on parent report), type of home therapy (such as Applied Behavior Analysis, DIR/Floortime, and others), and if the sibling participant had been diagnosed with any disability or delay. 2.3.2. Parental involvement in education and therapy Parental involvement in therapy and education for the child with autism was assessed using an adapted version of the Parent Involvement Questionnaire-Parent Version from Solish and Perry (2008). The parental involvement questionnaire has two subscales that yield a total parental involvement score: one scale for involvement in an in-home therapy setting, and one scale for school-based (classroom) involvement. Response options for each item were given on a 5-poing Likert scale, with descriptors provided below on three of the five scale points, for example: never (coded 1), sometimes (once per week) (coded 3), and frequently (daily) (coded 5). To assess involvement in the therapy setting, parents were asked eight questions relating to in-home therapy, such as how often the parent communicates with the in-home therapy staff, participates in sessions, or attends meetings/goal writing. The therapy subscale had a Cronbach’s alpha level .77 for the current study, which is an acceptable level. To assess involvement in the school setting, parents were asked five questions that were identical to five of the involvement in therapy questions, with school substituted for therapy. The school subscale had a Cronbach’s alpha level .61 for the current study, which was deemed acceptable given that the subscale only contained five items. The total
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involvement score from the current study had a Cronbach’s alpha level .83. Parents were asked to fill out this questionnaire with the child with autism in mind. 2.3.3. Parental sense of competence Parental self-efficacy and parental satisfaction were measured using the PSOC questionnaire (Johnston & Mash, 1989). This 16-item scale measures a parent’s sense of confidence and belief in oneself in the parenting role (parental self-efficacy) and how satisfied the parent is with his/her job as a parent (parental satisfaction). The PSOC contains two subscales, one for efficacy and one for satisfaction. Parents indicate their agreement with items on a scale of strongly agree (1) to strongly disagree (6). Sample items on the efficacy subscale are, I honestly believe I have all the skills necessary to be a good mother/father to my child, and I meet my own expectations for expertise in caring for my child. Sample items on the satisfaction subscale are, Even though being a parent could be rewarding, I am frustrated now while my child is at his/her present age, and I go to bed the same way I wake up in the morning, feeling I have not accomplished a whole lot. Scoring is reversed for the efficacy subscale, so that for both subscales higher ratings indicate greater parenting competence. The total PSOC and the two subscales have been shown to have adequate levels of reliability and consistency (Johnston & Mash, 1989). In the current study, the total PSOC had a Cronbach’s alpha level .85, the satisfaction subscale had alpha level of .78, and the efficacy subscale had an alpha level of .79. Parents were asked to fill out the PSOC questionnaire with the child with autism in mind. 2.3.4. Parental stress The Parenting Stress Index Short Form (PSI-SF) (Abidin, 1995) was used to measure parental stress. The PSI-SF contains 36 items and generates a total stress score in addition to three scales: parental distress, parental–child dysfunctional interaction, and difficult child. Only the total stress score was used for the current study. For the majority of questions, the parents were asked to rate each statement on a 5-point scale, ranging from strongly agree to strongly disagree, with higher scores indicating greater parenting stress. Based on normative data with the PSI-SF, a total score above 90 is considered clinically significant parental stress (Abidin, 1995). The PSI-SF has shown good test-retest reliability of .84, and excellent internal consistency with an alpha level of .91 (Abidin, 1995). Due to a technical error when creating the PSI-SF in the online questionnaire, two questions were dropped and not included in any of the questionnaires that were administered. In the current study, the 34 items included in the PSI-SF had a Cronbach’s alpha level .92. The caregiver was asked to complete this questionnaire with the child with autism in mind. 2.3.5. Sibling adjustment To assess the adjustment of the sibling, caregivers were asked to complete the Strengths and Difficulties Questionnaire (SDQ) (Goodman, 1997). The SDQ yields a total adjustment score from four, 5-item scales: emotional symptoms, conduct problems, hyperactivity, and peer problems. The SDQ items are rated on a 3-point scale: not true (0), somewhat true (1), and certainly true (2), with higher scores indicating greater adjustment difficulties. Sample items from the SDQ are as follows: Considerate of other people’s feelings; Helpful if someone is hurt, upset or feeling ill; Often unhappy, depressed or tearful; and Good attention span, sees work through to the end. Only the total adjustment score was used in the current study. The SDQ has shown to be a reliable and valid measure when assessing the siblings of children with autism (Benson & Karlof, 2008; Hastings, 2003). The total adjustment score for the SDQ had a Cronbach’s alpha level .85 in the current study. Parents were asked to fill out the SDQ on the sibling of the child with autism. 2.4. Data analytic plan For missing items on the questionnaires, the mean score of all eligible participants was calculated for all answers and subscales, and the mean was inserted for an individual participant’s score on the missing item. Downey and King (1998) found that using item mean replacement resulted in a good representation of their original data when both the number of items missing and the number of respondents with missing data were 20% or less. Similar to that study, the current study involved a large sample and questionnaires with a moderate amount of items. Total missing data rates for each questionnaire were 0.34% for the PSOC, 0.28% for the PSI-SF, and 0.24% for the SDQ. Means were not inserted for the Parent Involvement Questionnaire. For each questionnaire, participants who left blank more than one item were excluded from the total for that scale. For the PSI-SF, participants were allowed to miss one additional item and still be included in the data analysis. Two participants were excluded from the SDQ, one participant was excluded from the PSI-SF, and none were excluded from the PSOC. 3. Results 3.1. Demographics Chi square tests and analysis of variance tests were conducted on the demographic variables between those who completed the survey (N = 200) and those who did not (N = 160 or less, using data from non-completers who entered data on relevant items). There were no significant differences between the caregivers, autism participants, and sibling participants in terms of gender, age, years of education, ethnicity, and parenting status. There was a significant difference with income level
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Table 1 Descriptive data for measures. Measures
N
M
SD
Involvement total Involvement school subscale Involvement therapy subscale Parenting stress (PSI-SF) PSOC efficacy subscale PSOC satisfaction subscale Sibling adjustment (SDQ) total
200 196 167 199 200 200 198
44.95 20.22 29.22 94.83 30.04 36.25 9.54
14.14 4.22 8.16 21.39 5.49 7.25 6.53
between completers and non-completers, such that non-completers had significantly lower levels of income (M = 4.81, SD = 2.33, N = 52) than completers (M = 5.73, SD = 1.92, N = 200), F (1, 250) = 8.729, p < .05 (where 4 = $30,000–$40,000, 5 = $40,001–$50,000, and 6 = $50,001–$60,000). Only data from those who fully completed all of the questionnaires were used for further analysis. 3.2. Descriptive analyses Descriptive analyses on all measures are presented in Table 1. Scores on individual items for parental involvement averaged 3.45 for total involvement, 4.04 for school involvement, and 3.65 for therapy involvement, indicating that parents rated themselves, on average, as sometimes involved in their child’s education or interventions in both school and home settings. On the PSI-SF, the mean score for total parent stress was above the clinical cut-off, indicating that the average parent in this study experienced clinically significant levels of stress related to caring for a child with autism. These findings are similar to parental stress levels reported in another autism sibling study (e.g., Kuhn & Carter, 2006). Using the PSOC scale, the mean level of parental satisfaction was similar to that in both normative (Johnston & Mash, 1989) and autism samples (Keen et al., 2010); however, the efficacy mean in the current study was comparatively higher (i.e., indicates greater self-efficacy) than both of these normative and autism studies. The level of sibling adjustment difficulties (M = 9.54, SD = 6.53) as measured by the SDQ was significantly higher (i.e., indicating greater difficulties) for the current sample than the U.S. norm (M = 7.1, SD = 5.7), t(197) = 5.25, p < 001 (Bourdon, Goodman, Rae, Simpson, & Koretz,2005). Nevertheless, the current level still fell within the ‘‘normal’’ provisional banding range (M= 0–11) (Bourdon et al., 2005). The mean SDQ score reported in the present study is midway between the scores for siblings with and without a diagnosed disability as reported in a study which examined siblings of children with autism (Benson & Karlof, 2008). The current SDQ score is slightly lower than reported in an Australian study which examined siblings of children with various developmental delays (Giallo & Gavidia-Payne, 2006). 3.3. Sibling adjustment and demographic variables Bivariate correlations were conducted between the demographic variables and sibling adjustment to investigate if any demographic variables were significant predictors of sibling adjustment. Point-biserial correlations revealed a significant negative correlation (r = .17, p < 05, N = 198) between sibling gender and sibling difficulties on the SDQ, indicating that female siblings had significantly lower scores on the SDQ (indicating less difficulties) when compared to their male counterparts. This is consistent with the norms when analyzing means by gender: female norm (M = 6.6, SD = 5.3), male norm (M = 7.5, SD = 5.9) (Goodman, 2004). In addition, there was a significant negative correlation (r = .26, p < 05, N = 198) between sibling adjustment and income level, suggesting that as family income increases, sibling difficulties decrease. 3.4. Correlations of parent variables with sibling adjustment A correlation table of the variables of interest is displayed in Table 2. There was not a significant relationship between total involvement, school involvement, or therapy involvement and sibling adjustment on the SDQ. There was a significant negative correlation for both parental self-efficacy and satisfaction with sibling adjustment difficulties. Additionally, there was a significant positive correlation between parental stress and sibling adjustment difficulties. 3.5. Predictors of adjustment A multiple linear regression analysis was conducted to investigate predictors of sibling adjustment based on the five parental variables: PSOC self-efficacy, PSOC satisfaction, involvement in school, involvement in therapy, and PSI-SF total stress score. The overall regression model was significant, F(5, 160) = 2.85, p = .02. PSOC satisfaction was the sole variable that significantly predicted sibling adjustment (B = .23, p = .03). Next, a hierarchical linear regression analysis was performed (Table 3). In order to control for the significant demographic predictors of sibling adjustment, family income and sibling gender were entered in step one and the five parental variables of interest as well as demographics were entered for step 2. The overall model was significant, F (7153) = 4.48, p < .001, R2 = .17.
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Table 2 Bivariate correlations among measured variables. 1
Measures 1. PSOC efficacy N
2
3 .60
5
b
.17
199
.23b
– 197
4. SDQ- difficulties N
–
200
.20b 196
167
.08 199
.20b 195
166
.01 198
.07 194
166
–
.62b 196
167
5. Involvement- total N 6. Involvement- school N
b
.01
.04
.07 .89b .33b
– 163
7. Involvement- therapy N a
.17a 167
.05
198
7 b
.20 196
200 .25b
199
3. PSI-SF N
.10
198 .62b
–
6
a
.43
200
2. PSOC satisfaction N
4
b
– 167
p < .05. p < .01.
Table 3 Hierarchical regression analysis for variance predicting sibling adjustment (SDQ). Model
Variable
Step 1
R2
F
0.10
8.889
Sibling gender Yearly income Step 2
0.17 Sibling gender Yearly income PSOC self-efficacy total PSOC satisfaction total PSI total Involvement in school Involvement in therapy
a b
B
SE B
b
2.7 0.87
0.99 0.26
0.21a 0.25b
2.44 0.82 0.05 0.21 0.02 0.04 0.017
0.98 0.25 0.12 0.1 0.03 0.15 0.07
0.19a 0.24a 0.04 0.24a 0.07 0.02 0.02
4.476
p < .05. p < .01.
In Step 1, DF(2158) = 8.89, p < .001, DR2 = .10, sibling gender and parental income level were both statistically significant. In Step 2, DF(7, 153) = 2.54, p = .03, DR2 = .07, parental satisfaction, sibling gender, and yearly income were significant predictors; however, parental stress, parental involvement in school, parental involvement total, parental self-efficacy, and parental stress were not. Parental satisfaction predicted sibling adjustment difficulties (B = .21, p < 05), such that as parental satisfaction increased, sibling difficulties decreased. 4. Discussion The purpose of this study was to investigate predictors of adjustment in siblings of children with autism, using parental variables related to caring for a child with autism as predictors. Previous studies examining sibling adjustment have found mixed results regarding whether having a sibling with autism affects their siblings’ adjustment positively or negatively. It was hypothesized that higher levels of parental involvement, self-efficacy, and satisfaction, together with lower levels of parental stress, would predict better adjustment of siblings. Findings indicated that parental satisfaction was the only significant predictor of sibling adjustment when taking the other predictors into account. To our knowledge, this study is the first to examine parent satisfaction and self-efficacy using the PSOC in relation to sibling adjustment with this population. Prior studies that have examined parental factors as predictors of sibling adjustment in families of children with autism (Benson & Karlof, 2008) or other disabilities (Giallo & Gavidia-Payne, 2006) have not included the PSOC or other measures of parent satisfaction or self-efficacy as possible predictors of sibling adjustment. Prior research does indicate that parent stress is significantly elevated in mothers of children with autism (Hoffman et al., 2009), and this study supports those findings. In the current study, parental stress was positively correlated with sibling difficulties; however, this relationship did not persist in the hierarchical regression analysis, suggesting that parental stress is not a unique contributor to sibling adjustment when other parental variables are considered. This pattern is consistent
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with Benson and Karlof (2008) longitudinal examination of predictors of the sibling adjustment in families of children with autism. These investigators found that, for siblings without diagnosed disabilities, parental stress among other variables was correlated with sibling adjustment two years later, but that parental stress did not significantly predict the siblings’ later adjustment in a hierarchical regression analysis. Interestingly, Benson and Karlof found that none of their predictor variables were related to later adjustment in siblings with diagnosed disabilities The current findings differ, however, from the research conducted by Giallo and Gavidia-Payne (2006) on families of children with various disabilities, where it was found that parental stress along with other variables was a significant predictor of sibling adjustment. Use of a different measure of parental stress by Giallo and Gavidia-Payne (2006) than did the other two studies may be one factor related to the differing results. Similar to the findings for parental stress, the present research found that parental self-efficacy related to caring for their child with autism was negatively correlated with sibling adjustment, but it did not remain a significant predictor when conducting the hierarchical regression analysis. The correlational finding is consistent with prior research that found parental self-efficacy to be related to child behavior problems in a normative sample (Johnston & Mash, 1989). The current results suggest, however, that a sense of efficacy in handling the special needs of a child with autism does not contribute to how parents perceive the adjustment of siblings. Both parental involvement in school and parental involvement in therapy were found to be associated with several of the other predictor variables. Parental involvement in school was associated with parental self-efficacy and parental satisfaction. These relationships suggest that parents do feel more efficacious and satisfied when they are involved in their child with autism’s education, perhaps gaining tools and knowledge to better manage their child with autism. Parental involvement in school was also significantly negatively correlated with parental stress. Although the mechanism for this relationship is unknown, it is possible parents feel less stressed when they communicate with the teachers at school and are involved somehow in the classroom. Parental involvement in therapy was positively correlated with parental self-efficacy, suggesting that parents gain a sense of confidence and ability through involvement in therapy. No significant relationship was found between parental involvement in school or parental involvement in therapy and sibling adjustment, nor were these variables found to predict sibling adjustment. These findings are in contrast with prior research that found parental involvement to predict sibling adjustment (Benson & Karlof, 2008). However, Benson and Karlof (2008) conducted a longitudinal study in which sibling adjustment was measured two years after data were collected on parental involvement. This difference suggests that the effects of parental involvement in therapy could take a significant amount of time to have an effect on the sibling of the child with autism. Different measures were used to assess parental involvement across the two studies, which could have contributed to the different findings. Additionally, Benson and Karlof (2008) found that the predictive relationship of parent involvement held only for the group of siblings without a diagnosed disability. In the current study, 13% of the siblings were reported by parents to have a disability. The results of the current study need to be interpreted with caution, as they were only examined using bivariate correlations. Further research is needed to examine the roles of these variables and the possible effects they have on each other. The fact that parental satisfaction with the role of caring for a child with autism predicted sibling adjustment in the present study is noteworthy, and it is interesting to speculate on the possible reasons for this relationship. For example, in a study with parents of a normative sample of adolescents, parental satisfaction was positively correlated with the parents’ perception of the youth’s character (Downing-Matibag, 2009). Perhaps consistent with this study, when our study participants were satisfied with their ability to care for the child with autism, they also viewed the siblings’ adjustment in a positive light because of the challenges they faced when having a brother or sister with autism. Satisfaction with their parenting role with the child with autism may have been more salient in how parents perceived the siblings’ adjustment than factors such as feelings of efficacy in meeting the child with autism’s needs and gaining parenting tools through involvement in the child with autism’s education. Additionally, parenting styles could affect the relationship between satisfaction and sibling adjustment. For example, in a normative sample of low-income mothers, Medora, Wilson, and Larson (2001) found that parental satisfaction was positively correlated with parent strategy reasoning. It is possible that, in the current study, higher satisfaction was negatively correlated with ratings of siblings’ behavioral difficulties because the parents who were more satisfied were more likely to reason with their child, thereby decreasing maladaptive behavior and difficulties. Further research is needed to identify the mechanism thorough which parental satisfaction affects sibling adjustment. The amount of variance accounted for in the relationship found between parental satisfaction and sibling adjustment was small, suggesting that there are important predictors of sibling adjustment that were not included in this study, or that have yet to be discovered. Demographic variables may play a role in predicting sibling adjustment, as a few demographic variables were found to be significant in the current study. Further, Benson and Karlof (2008) found that severity of symptoms exhibited by the child with autism was a significant predictor of sibling adjustment. The current study supports prior research findings on the relationship between family income and sibling gender on sibling adjustment, in that siblings in families with higher income and female siblings were found to be better adjusted than their lower family income and male sibling counterparts (Macks & Reeve, 2007). Further, in their study with families of children with a disability, Giallo and Gavidia-Payne (2006) found that the relationship between socio-economic status and sibling adjustment was mediated by parent stress and family resilience. It also seems likely that families with higher income can access more supportive resources, such as higher quality therapy. It is interesting to speculate on why female siblings of children with autism are better adjusted to than their male counterparts. Perhaps female siblings are more mature at their
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age than their male counterparts and can better process the difficulties of having a brother or sister with autism. For example, Bourdon et al. (2005) suggested that developmental periods for each gender must be taken into account; difficulties in boys increase between the ages of 8 and 14, whereas difficulties in girls increase between the ages of 11–17. All of the participating siblings in the current study were below age 11. Additionally, Verte, Roeyers, and Buysse (2003) found female siblings of children with high functioning autism ascribed higher feelings of social competence and more positive self-concept than both female siblings of children without a disorder and male siblings in both groups. Further research is needed to more clearly define this relationship and identify the mechanisms behind it. This study is subject to several limitations, including the cross-sectional design, reliance on parental self-report data, and inclusion of a limited number of predictor and criterion variables. One salient limitation of the study was that questionnaires were administered online versus using face-to-face interviews and were solely based on caregiver report. Conducting the study using in-person interviews could possibly provide more detailed information on the level and type of involvement parents had in both the therapy and school setting of the child with autism. Additionally, autism diagnoses for the autism participants and diagnoses for the sibling (if reported) were based on parent report and not verified by a licensed clinician. This was a convenience sample. Most participants were caucasian, and other ethnic groups were underrepresented. A wider sample is needed to represent a broader population base. Furthermore, this sample was primarily middle to upper class with regard to socio-economic status. It is plausible that those who lack resources, such as the internet, may work more and could be less involved in their child’s education, which may have revealed different relationships between the parental variables of interest and sibling adjustment. The PSOC subscales have not previously been examined in relation to sibling adjustment in families of children with autism, and we found that the parental satisfaction subscale predicted sibling adjustment. Future studies could examine the role of parental satisfaction as well as parental self-efficacy in the adjustment of siblings in families of children with autism not only to replicate these findings, but to analyze the mechanisms behind this relationship. It is possible that some parents of children with autism from the present study devote themselves to autism research, advocacy, or awareness, giving them a sense of satisfaction as parents. These parents may also devote themselves to the siblings’ well being, which may have positively affected their adjustment. Future studies need to examine what is driving the satisfaction of parents of children with autism and its relationship to sibling adjustment. Additionally, research is needed to evaluate the indirect effects of parental involvement in the education of their child with autism on the adjustment of the child’s siblings. Longitudinal studies on level of parental involvement in both therapy and education during the early years after a child receives an autism diagnosis may reveal the role of parental involvement on sibling adjustment during those first critical years. This study has implications for professionals working with children with autism. Because this study found parental satisfaction to predict sibling adjustment in families of children with autism, it may be beneficial for professionals working in this field to assess levels of parental satisfaction. If parental satisfaction is assessed and found to be at low levels, professionals can discuss various strategies with the parent on how to increase parental satisfaction, thus protecting for positive sibling adjustment. They also could inquire about the siblings’ adjustment to determine if support or resources are needed directly for the siblings. 5. Conclusions Contrary to previous research, parental involvement in therapy and school, parental self-efficacy, and parental stress in families of children with autism did not significantly predict sibling adjustment, although some correlational relationships were found. Parental satisfaction as measured by the PSOC in parents of children with autism was found to significantly predict adjustment levels in the siblings of children with autism, as was sibling gender and family income. The findings suggest that the quality of a parent’s relationship with one child (notably the child with autism) affects perceptions of a sibling’s adjustment. Whether this relationship is due to one or more other variables is unclear and awaits further research. Furthermore, the failure of parental involvement in the child with autism’s school or therapy to serve as a unique predictor of sibling adjustment adds new findings to the current literature, in that, with this large sample, involvement was not related to sibling adjustment, as had been found in previous studies with smaller groups or using longitudinal methods. Additional research on both parental involvement and parental satisfaction would help to better understand the implications of parent constructs on the adjustment of siblings of children with autism. Acknowledgments This study was conducted as a senior honors’ thesis by the first author. The research was supported by an undergraduate research grant provided by PSI CHI, the International Honor Society in Psychology. Sincere gratitude goes out to all the parents who participated in this study, as well as all of those who care for someone affected by autism. References Abidin, R. R. (1995). Parenting stress index (3rd ed.). Professional ManualOdessa, FL: Psychological Assessment Resources, Inc. American Psychiatric Association. (2000). (4th ed. (revised)). Diagnostic and Statistical Manual of Mental DisordersWashington, DC: American Psychiatric Association.
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Baker, B., McIntyre, L., Blacher, J., Crnic, K., Edelbrock, C., & Low, C. (2003). Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time. Journal of Intellectual Disability Research, 47, 217–230 http://dx.doi.org/10.1046/j.1365-2788.2003.00484.x Benson, P., & Karlof, K. (2008). Child, parent, and family predictors of latter adjustment in siblings of children with autism. Research in Autism Spectrum Disorders, 2, 583–600 http://dx.doi.org/10.1016/j.rasd.2007.12.002 Bourdon, K. H., Goodman, R., Rae, D. S., Simpson, G., & Koretz, D. S. (2005). The strengths and difficulties questionnaire: U.S. normative data and psychometric properties. Journal of the American Academy of Child and Adolescent Psychiatry, 44, 557–564 http://dx.doi.org/10.1097/01.chi.0000159157.57075.c8 Centers for Disease Control and Prevention. (2012). Prevalence of autism spectrum disorders—autism and developmental disabilities monitoring network, United States, 2008. Surveillance Summaries MMWR, 61, 1–19. Downey, R. G., & King, C. V. (1998). Missing data in likert ratings: A comparison of replacement methods. Journal of General Psychology, 125, 175–191. Downing-Matibag, T. (2009). Parents’ perceptions of their adolescent children, parental resources, and parents’ satisfaction with the parent-child relationship. Sociological Spectrum, 29, 467–488 http://dx.doi.org/10.1080/02732170902904632 Giallo, R., & Gavidia-Payne, S. (2006). Child, parent and family factors as predictors of adjustment for siblings of children with a disability. Journal of Intellectual Disability Research, 50, 937–948 http://dx.doi.org/10.1111/j.1365-2788.2006.00928.x Goodman, R. (1997). The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38, 581–586 http://dx.doi.org/ 10.1111/j. 1469-7610.1997.tb01545.x Goodman, R. (2004). Sample means plus standard deviations for parent SDQs. Normative SDQ Data from the USA [For the Sample as a Whole and for Subgroups, Defined by Age and Gender] Retrieved from Youth in Mind website http://www.sdqinfo.com/norms/USNorm1.pdf. Hastings, R. (2003). Behavioral adjustment of siblings of children with autism engaged in applied behavior analysis early intervention programs: The moderating role of social support. Journal of Autism and Developmental Disorders, 33, 141–150 http://dx.doi.org/10.1023/A:1022983209004 Hastings, R. P., & Brown, T. (2002). Behavior problems in children with autism, parental self-efficacy, and mental health. American Journal on Mental Retardation, 107, 222–232 http://dx.doi.org/10.1352/0895-8017 Hastings, R., & Johnson, E. (2001). Stress in UK families conducting intensive home-based behavioral intervention for their young child with autism. Journal of Autism and Developmental Disorders, 31, 327–336 http://dx.doi.org/10.1023/A:1010799320795 Hastings, R., & Symes, M. (2002). Early intensive behavioral intervention for children with autism: Parental therapeutic self-efficacy. Research in Developmental Disabilities, 23, 332–341 http://dx.doi.org/10.1016/S0891-4222(02)00137-3 Hoffman, C., Sweeney, D., Hodge, D., Lopez-Wagner, M., & Looney, L. (2009). Parenting stress and closeness: Mothers of typically developing children and mothers of children with autism. Focus on Autism and Other Developmental Disabilities, 24, 178–187 http://dx.doi.org/10.1177/1088357609338715 Johnston, C., & Mash, E. (1989). A measure of parenting satisfaction and efficacy. Journal of Clinical Child Psychology, 18, 167 http://dx.doi.org/10.1207/ s15374424jccp1802_8 Kaminsky, L., & Dewey, D. (2002). Psychosocial adjustment in siblings of children with autism. Journal of Child Psychology and Psychiatry, 43, 225–232 http:// dx.doi.org/10.1111/1469-7610.00015 Keen, D., Couzens, D., Muspratt, S., & Rodger, S. (2010). The effects of a parent-focused intervention for children with a recent diagnosis of autism spectrum disorder on parenting stress and competence. Research in Autism Spectrum Disorders, 4, 229–241 http://dx.doi.org/10.1016/j.rasd.2009.09.009 Kuhn, J., & Carter, A. (2006). Maternal self-efficacy and associated parenting cognitions among mothers of children with autism. American Journal of Orthopsychiatry, 76, 564–575 http://dx.doi.org/10.1037/0002-9432.76.4.564 Macks, R. J., & Reeve, R. E. (2007). The adjustment of non-disabled siblings of children with autism. Journal of Autism and Developmental Disorders, 37, 1060–1067 http://dx.doi.org/10.1007/s10803-006-0249-0 Matson, J., Dempsey, T., & Fodstad, J. (2009). Examination of group differences using the autism spectrum disorders-diagnostic for children (ASD-DC). Journal of Developmental and Physical Disabilities, 21, 235–243 http://dx.doi.org/10.1007/s10882-009-9138-8 Matson, J., Wilkins, J., & Gonzalez, M. (2007). Reliability and factor structure of the autism spectrum disorders—diagnosis scale for intellectually disabled adults (ASD—DA). Journal of Developmental and Physical Disabilities, 19, 557–564 http://dx.doi.org/10.1007/s10882-007-9069-1 Medora, N., Wilson, S., & Larson, J. (2001). Attitudes toward parenting strategies, potential for child abuse, and parental satisfaction of ethnically diverse lowincome U.S. mothers. Journal of Social Psychology, 141, 335–348 http://dx.doi.org/10.1080/00224540109600555 Pilowsky, T., Yirmiya, N., Doppelt, O., Gross-Tsur, V., & Shalev, R. (2004). Social and emotional adjustment of siblings of children with autism. Journal of Child Psychology and Psychiatry, 45, 855–865 http://dx.doi.org/10.1111/j. 1469-7610.2004.00277.x Quintero, N., & McIntyre, L. (2010). Sibling adjustment and maternal well-being: An examination of families with and without a child with an autism spectrum disorder. Focus on Autism and Other Developmental Disabilities, 25, 37–46. Ross, P., & Cuskelly, M. (2006). Adjustment, sibling problems and coping strategies of brothers and sisters of children with autistic spectrum disorder. Journal of Intellectual and Developmental Disability, 31, 77–86 http://dx.doi.org/10.1080/13668250600710864 Sanders, M. R., & Woolley, M. L. (2005). The relationship between maternal self-efficacy and parenting practices: Implications for parent training. Child: Care, Health and Development, 31, 65–73 http://dx.doi.org/10.1111/j. 1365-2214.2005.00487 Solish, A., & Perry, A. (2008). Parents’ involvement in their children’s behavioral intervention programs: Parent and therapist perspectives. Research in Autism Spectrum Disorders, 2, 728–738 http://dx.doi.org/10.1016/j.rasd.2008.03.001 Verte, S., Roeyers, H. H., & Buysse, A. A. (2003). Behavioural problems, social competence and self-concept in siblings of children with autism. Child: Care, Health and Development, 29, 193–205 http://dx.doi.org/10.1046/j. 1365-2214.2003.00331
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Research in Autism Spectrum Disorders Journal homepage: http://ees.elsevier.com/RASD/default.asp
Siblings of children with autism: Predictors of adjustment Tessa L. Hesse a,*, Christina M. Danko b, Karen S. Budd b a b
University of California, Davis, Department of Human Ecology, One Shields Avenue, Davis, CA 95616, United States DePaul University, Department of Psychology, 2219N. Kenmore Avenue, Chicago, IL 60614, United States
A R T I C L E I N F O
A B S T R A C T
Article history: Received 29 July 2012 Received in revised form 29 March 2013 Accepted 30 July 2013
As the prevalence of autism increases, so does the need to examine the effects of autism on family members of children with autism. The current study evaluated possible predictors of adjustment in siblings of children with autism. Aspects of the parents’ functioning as caregivers for a child with autism were examined to determine whether they predicted the adjustment of the child’s sibling. Two hundred caregivers of 4–10-year-old children with autism who had at least one sibling without autism participated by filling out questionnaires online. Parental satisfaction with the role of caregiver for the child with autism was negatively correlated with difficulties in sibling adjustment, and it was the only significant predictor of sibling adjustment in a hierarchical regression analysis. Parental stress and parental self-efficacy were not unique contributors to sibling adjustment when other parental variables were considered. No significant relationship was found between parental therapy involvement and sibling adjustment, or between parental educational involvement and sibling adjustment. The lack of parental involvement as a predictor of sibling adjustment adds new findings to the current literature, which had found such a relationship in a previous study with a smaller sample. ß 2013 Elsevier Ltd. All rights reserved.
Keywords: Adjustment Siblings Autism spectrum disorder Parents Sibling adjustment Parent satisfaction
1. Introduction Autism spectrum disorders (ASDs) are a group of disorders characterized by impairments in social skills and communication, and are often accompanied by repetitive and ritualistic behaviors (American Psychiatric Association, 2000; Matson, Dempsey & Fodstad, 2009). In addition, cognitive deficits and challenging or unusual behaviors such as self-injury, difficulty with changes in routines, aggression, and characteristics such as sensitivity to sensory stimuli are often present in individuals with ASDs (Matson, Wilkins, & Gonzalez, 2007). The estimated prevalence of ASDs (referred to in this paper as autism) has been increasing in recent years, with an average prevalence rate of 1 in every 88 children reported in 2008 (Centers for Disease Control and Prevention, 2012). As the prevalence of autism increases, so does the need to evaluate the difficulties families face living with a child affected by autism. In this study, we examine the adjustment of siblings of children with autism and identify possible predictors of siblings’ adjustment. When using the term adjustment, we refer to the internalizing and externalizing behavior problems of the sibling of the child with autism. Previous research findings on the effects of autism on sibling adjustment are mixed; it has been shown that siblings are affected both positively (Pilowsky, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004) and negatively (Ross & Cuskelly, 2006) by having a brother or sister with autism. Giallo and Gavidia-Payne (2006) found siblings of children with
* Corresponding author. Tel.: +1 661 302 8380; fax: +1 773 325 7888. E-mail addresses: [email protected], [email protected] (T.L. Hesse). 1750-9467/$ – see front matter ß 2013 Elsevier Ltd. All rights reserved. http://dx.doi.org/10.1016/j.rasd.2013.07.024
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developmental delays to have significantly higher overall adjustment difficulties, emotional symptoms, and peer problems and lower pro-social behavior compared to normative levels. Similarly, Ross and Cuskelly (2006) found siblings of children with autism to be at increased risk for internalizing behavior problems. On the other hand, Pilowsky et al. (2004) found that, when measuring the social skills and behavior problems of siblings of children with autism, the siblings were overall well adjusted when compared to a normative sample and a sample of siblings with other diagnoses. In addition, Kaminsky and Dewey (2002) found the siblings of children with autism to be well adjusted, with similar levels of internalizing and externalizing behavior problems when compared to siblings of children with Down syndrome and a normative sample. Raising a child with autism or another developmental disability is often stressful for parents and can affect sibling adjustment as well. Hoffman, Sweeney, Hodge, Lopez-Wagner and Looney (2009) found parental stress to be higher among mothers of children with autism compared to both mothers of typical children and mothers of children with developmental delays. Children with an intellectual disability often have higher levels of behavior problems than children without an intellectual disability (Baker et al., 2003). When examining child-related stress in parents of a child with an intellectual disability, Baker et al. (2003) found child behavior problems contributed to increased parental stress a year later. Similarly, Keen, Couzens, Muspratt, and Rodger (2010) found that parents of children with autism reported high levels of childrelated stress and indicated that children with autism displayed qualities that they found challenging, such as demanding behaviors and distractibility. Parenting stress has been shown to be a strong predictor of sibling adjustment (Giallo & Gavidia-Payne, 2006). The adjustment of siblings of children with a disability was predicted better by levels of parent stress than the siblings’ report of their own stress and coping (Giallo & Gavidia-Payne, 2006). Additionally, Quintero and McIntyre (2010) found that maternal parenting stress was significantly correlated with both teacher and parent report of adjustment in siblings of children with autism. In addition to stress, parental competence in the role of caregiver has been related to behavior problems in children. Johnston and Mash (1989) describe parental self-efficacy as an instrumental dimension reflecting how much a parent feels capable and competent, familiar with the parenting role, and able to problem solve. Further, the authors define parental satisfaction as an affective dimension reflecting how much a parent feels frustrated, anxious, or poorly motivated as a parent. Johnston and Mash (1989) found that parental competence (parental self-efficacy and parental satisfaction combined) was negatively associated with internalizing and externalizing child behavior problems for mothers and fathers in a normative sample. Sanders and Woolley (2005) found that mothers of children with conduct problems who were seeking professional help with parenting reported lower levels of self-efficacy than mothers of a control (community) sample. Hastings and Brown (2002) established that self-efficacy in mothers of children with autism was negatively associated with child behavior problems in the child with autism as well. Parents are often involved in the in-home therapy programs for children with autism, and they frequently assume the role of the therapist and directly provide therapy (Hastings, 2003). Studies suggest that having a parent involved in the intervention for the child with autism is related to increased parent self-efficacy and decreased parenting stress. For example, Kuhn and Carter (2006) found that when mothers of children with autism were actively involved in promoting their child’s development, they reported higher levels of self-efficacy. Solish and Perry (2008) were the first to operationalize involvement and examine predictors associated with parental involvement in terms of parents of children with autism in intensive behavioral therapy settings. These authors found that parental self-efficacy was a strong predictor of parental involvement in the child’s intensive behavioral intervention at home (Solish and Perry, 2008). Studies have suggested that the family’s role in therapy needs to be examined to assess any effects therapy may have on the siblings of the child with autism (Hastings & Johnson, 2001; Hastings & Symes, 2002). Benson and Karlof (2008) examined several predictors of later adjustment in siblings of children with autism, including severity of symptoms in the child with autism, parenting stress, family climate, and parental involvement in the education and therapeutic services of the child with autism. The authors found that increased levels of parental involvement were associated with greater positive sibling adjustment (Benson & Karlof, 2008). By identifying predictors of sibling adjustment, proactive measures can be taken to prevent or counteract adjustment difficulties in the siblings of children with autism. For instance, professionals can offer support (e.g., sibling support groups, therapy referrals, access to resources) to enhance siblings’ adjustment. In addition, if parents are aware that factors such as their own stress, satisfaction, and self-efficacy in caring for a child with autism may also influence the sibling’s adjustment, they themselves can seek treatment for stress or change various aspects of their life to improve their functioning as a parent. The current study evaluated whether aspects of parents’ functioning as caregivers of a child with autism predicted the behavioral adjustment of siblings. Specifically, we investigated the relationship between parental stress, parental sense of competence (self-efficacy and satisfaction), and level of parental involvement with the child with autism in both the in-home therapy setting and in school setting, and overall sibling adjustment. Based on prior research, we hypothesized that the parent variables would contribute to predicting sibling adjustment. No studies to date have used the Parental Sense Of Competence (PSOC) (Johnston & Mash, 1989) scale to assess the effects of parental satisfaction and self-efficacy on siblings of children with autism; thus, this study provided an initial test of the instrument’s usefulness in detecting relationships between these two dimensions of parental competence and sibling adjustment in this population. We expected that more positive levels of sibling adjustment would be predicted by higher levels of parental involvement in school and home therapy (for the child with autism), higher parental self-efficacy and satisfaction, and lower parental stress (with the child with autism).
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2. Method 2.1. Participants Participants in the current study, which was approved by the university’s Institutional Review Board, consisted of caregivers of both a child with autism and a sibling. Both children were required to be between the ages of 4 and 10 years, and the sibling could not have been diagnosed specifically with autism. Children were required to be within this age range because the measure of sibling adjustment used in this study, the Strengths and Difficulties Questionnaire, has only been validated for parents of children aged 4–10. Diagnosis of both autism and a possible developmental delay/disability in the sibling was solely based on caregiver report. Parents were asked to indicate whether their child had been diagnosed with an autism spectrum disorder (yes/no). Caregivers who indicated the sibling participant had autism were redirected to the end of the survey. (Hereafter, the children with autism will be referred to as autism participants, and the siblings as sibling participants, although it was the caregivers, not the children who participated in the study). Sibling participants with other disorders, such as ADHD, were permitted into the study. A total of 360 participants began the survey, 200 of whom completed the measures. It is believed that many of the parents did not complete the questionnaires because they realized they did not meet the qualifications once they came to the questions regarding sibling diagnosis or age restrictions. Although the eligibility criteria for the study were stated in the study introduction, most of the incomplete surveys were missing data after the section on sibling participants. 2.1.1. Caregiver demographics Ninety-three percent of caregivers were female, and 99 percent were biological caregivers, with a mean age of 35.54 (SD = 5.27). The majority of caregivers were caucasian (89.6%), and the median level of income was in the $60,001–$100,000 range. The education level of most caregivers was some college, with a mean of 14.76 (SD = 2.57) years of education (12 years being a high school graduate). The geographic location of the caregiver participants consisted of residences both inside (n = 179, 89.5%) and outside (n = 21, 10.5%) the United States. 2.1.2. Autism and sibling participant demographics Children with autism (autism participants) had a mean age of 6.82 years (SD = 1.97) and the majority was male (87%). Fifty percent of the participating siblings were boys and 50 percent were girls, with a mean age of 6.61 (SD = 1.91). Based on parent report, 13 percent of the participating siblings were formally diagnosed with a developmental delay or disability other than autism. Reported delays/disabilities among the 13 percent of sibling participants included a speech delay (27%), ADHD (23%), a medical diagnosis (12%), and a general delay/not specified (39%). 2.2. Procedures Caregiver participants were recruited via two online social networking websites. The principal investigator posted a general announcement about the study stating inclusion criteria, the incentive of a raffle entry, and a link to the questionnaire. Data were gathered from participating caregivers using the online questionnaire database http:// www.surveymonkey.com. After participating in the survey, participants could choose to enter a raffle drawing to receive one of 10 $20 gift cards. 2.3. Materials 2.3.1. Socio-demographic information A demographics questionnaire was used to collect background information on the child with autism, the sibling, and the caregiver. In addition to basic demographic information, information was collected on the autism participant’s formal diagnosis (based solely on parent report), type of home therapy (such as Applied Behavior Analysis, DIR/Floortime, and others), and if the sibling participant had been diagnosed with any disability or delay. 2.3.2. Parental involvement in education and therapy Parental involvement in therapy and education for the child with autism was assessed using an adapted version of the Parent Involvement Questionnaire-Parent Version from Solish and Perry (2008). The parental involvement questionnaire has two subscales that yield a total parental involvement score: one scale for involvement in an in-home therapy setting, and one scale for school-based (classroom) involvement. Response options for each item were given on a 5-poing Likert scale, with descriptors provided below on three of the five scale points, for example: never (coded 1), sometimes (once per week) (coded 3), and frequently (daily) (coded 5). To assess involvement in the therapy setting, parents were asked eight questions relating to in-home therapy, such as how often the parent communicates with the in-home therapy staff, participates in sessions, or attends meetings/goal writing. The therapy subscale had a Cronbach’s alpha level .77 for the current study, which is an acceptable level. To assess involvement in the school setting, parents were asked five questions that were identical to five of the involvement in therapy questions, with school substituted for therapy. The school subscale had a Cronbach’s alpha level .61 for the current study, which was deemed acceptable given that the subscale only contained five items. The total
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involvement score from the current study had a Cronbach’s alpha level .83. Parents were asked to fill out this questionnaire with the child with autism in mind. 2.3.3. Parental sense of competence Parental self-efficacy and parental satisfaction were measured using the PSOC questionnaire (Johnston & Mash, 1989). This 16-item scale measures a parent’s sense of confidence and belief in oneself in the parenting role (parental self-efficacy) and how satisfied the parent is with his/her job as a parent (parental satisfaction). The PSOC contains two subscales, one for efficacy and one for satisfaction. Parents indicate their agreement with items on a scale of strongly agree (1) to strongly disagree (6). Sample items on the efficacy subscale are, I honestly believe I have all the skills necessary to be a good mother/father to my child, and I meet my own expectations for expertise in caring for my child. Sample items on the satisfaction subscale are, Even though being a parent could be rewarding, I am frustrated now while my child is at his/her present age, and I go to bed the same way I wake up in the morning, feeling I have not accomplished a whole lot. Scoring is reversed for the efficacy subscale, so that for both subscales higher ratings indicate greater parenting competence. The total PSOC and the two subscales have been shown to have adequate levels of reliability and consistency (Johnston & Mash, 1989). In the current study, the total PSOC had a Cronbach’s alpha level .85, the satisfaction subscale had alpha level of .78, and the efficacy subscale had an alpha level of .79. Parents were asked to fill out the PSOC questionnaire with the child with autism in mind. 2.3.4. Parental stress The Parenting Stress Index Short Form (PSI-SF) (Abidin, 1995) was used to measure parental stress. The PSI-SF contains 36 items and generates a total stress score in addition to three scales: parental distress, parental–child dysfunctional interaction, and difficult child. Only the total stress score was used for the current study. For the majority of questions, the parents were asked to rate each statement on a 5-point scale, ranging from strongly agree to strongly disagree, with higher scores indicating greater parenting stress. Based on normative data with the PSI-SF, a total score above 90 is considered clinically significant parental stress (Abidin, 1995). The PSI-SF has shown good test-retest reliability of .84, and excellent internal consistency with an alpha level of .91 (Abidin, 1995). Due to a technical error when creating the PSI-SF in the online questionnaire, two questions were dropped and not included in any of the questionnaires that were administered. In the current study, the 34 items included in the PSI-SF had a Cronbach’s alpha level .92. The caregiver was asked to complete this questionnaire with the child with autism in mind. 2.3.5. Sibling adjustment To assess the adjustment of the sibling, caregivers were asked to complete the Strengths and Difficulties Questionnaire (SDQ) (Goodman, 1997). The SDQ yields a total adjustment score from four, 5-item scales: emotional symptoms, conduct problems, hyperactivity, and peer problems. The SDQ items are rated on a 3-point scale: not true (0), somewhat true (1), and certainly true (2), with higher scores indicating greater adjustment difficulties. Sample items from the SDQ are as follows: Considerate of other people’s feelings; Helpful if someone is hurt, upset or feeling ill; Often unhappy, depressed or tearful; and Good attention span, sees work through to the end. Only the total adjustment score was used in the current study. The SDQ has shown to be a reliable and valid measure when assessing the siblings of children with autism (Benson & Karlof, 2008; Hastings, 2003). The total adjustment score for the SDQ had a Cronbach’s alpha level .85 in the current study. Parents were asked to fill out the SDQ on the sibling of the child with autism. 2.4. Data analytic plan For missing items on the questionnaires, the mean score of all eligible participants was calculated for all answers and subscales, and the mean was inserted for an individual participant’s score on the missing item. Downey and King (1998) found that using item mean replacement resulted in a good representation of their original data when both the number of items missing and the number of respondents with missing data were 20% or less. Similar to that study, the current study involved a large sample and questionnaires with a moderate amount of items. Total missing data rates for each questionnaire were 0.34% for the PSOC, 0.28% for the PSI-SF, and 0.24% for the SDQ. Means were not inserted for the Parent Involvement Questionnaire. For each questionnaire, participants who left blank more than one item were excluded from the total for that scale. For the PSI-SF, participants were allowed to miss one additional item and still be included in the data analysis. Two participants were excluded from the SDQ, one participant was excluded from the PSI-SF, and none were excluded from the PSOC. 3. Results 3.1. Demographics Chi square tests and analysis of variance tests were conducted on the demographic variables between those who completed the survey (N = 200) and those who did not (N = 160 or less, using data from non-completers who entered data on relevant items). There were no significant differences between the caregivers, autism participants, and sibling participants in terms of gender, age, years of education, ethnicity, and parenting status. There was a significant difference with income level
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Table 1 Descriptive data for measures. Measures
N
M
SD
Involvement total Involvement school subscale Involvement therapy subscale Parenting stress (PSI-SF) PSOC efficacy subscale PSOC satisfaction subscale Sibling adjustment (SDQ) total
200 196 167 199 200 200 198
44.95 20.22 29.22 94.83 30.04 36.25 9.54
14.14 4.22 8.16 21.39 5.49 7.25 6.53
between completers and non-completers, such that non-completers had significantly lower levels of income (M = 4.81, SD = 2.33, N = 52) than completers (M = 5.73, SD = 1.92, N = 200), F (1, 250) = 8.729, p < .05 (where 4 = $30,000–$40,000, 5 = $40,001–$50,000, and 6 = $50,001–$60,000). Only data from those who fully completed all of the questionnaires were used for further analysis. 3.2. Descriptive analyses Descriptive analyses on all measures are presented in Table 1. Scores on individual items for parental involvement averaged 3.45 for total involvement, 4.04 for school involvement, and 3.65 for therapy involvement, indicating that parents rated themselves, on average, as sometimes involved in their child’s education or interventions in both school and home settings. On the PSI-SF, the mean score for total parent stress was above the clinical cut-off, indicating that the average parent in this study experienced clinically significant levels of stress related to caring for a child with autism. These findings are similar to parental stress levels reported in another autism sibling study (e.g., Kuhn & Carter, 2006). Using the PSOC scale, the mean level of parental satisfaction was similar to that in both normative (Johnston & Mash, 1989) and autism samples (Keen et al., 2010); however, the efficacy mean in the current study was comparatively higher (i.e., indicates greater self-efficacy) than both of these normative and autism studies. The level of sibling adjustment difficulties (M = 9.54, SD = 6.53) as measured by the SDQ was significantly higher (i.e., indicating greater difficulties) for the current sample than the U.S. norm (M = 7.1, SD = 5.7), t(197) = 5.25, p < 001 (Bourdon, Goodman, Rae, Simpson, & Koretz,2005). Nevertheless, the current level still fell within the ‘‘normal’’ provisional banding range (M= 0–11) (Bourdon et al., 2005). The mean SDQ score reported in the present study is midway between the scores for siblings with and without a diagnosed disability as reported in a study which examined siblings of children with autism (Benson & Karlof, 2008). The current SDQ score is slightly lower than reported in an Australian study which examined siblings of children with various developmental delays (Giallo & Gavidia-Payne, 2006). 3.3. Sibling adjustment and demographic variables Bivariate correlations were conducted between the demographic variables and sibling adjustment to investigate if any demographic variables were significant predictors of sibling adjustment. Point-biserial correlations revealed a significant negative correlation (r = .17, p < 05, N = 198) between sibling gender and sibling difficulties on the SDQ, indicating that female siblings had significantly lower scores on the SDQ (indicating less difficulties) when compared to their male counterparts. This is consistent with the norms when analyzing means by gender: female norm (M = 6.6, SD = 5.3), male norm (M = 7.5, SD = 5.9) (Goodman, 2004). In addition, there was a significant negative correlation (r = .26, p < 05, N = 198) between sibling adjustment and income level, suggesting that as family income increases, sibling difficulties decrease. 3.4. Correlations of parent variables with sibling adjustment A correlation table of the variables of interest is displayed in Table 2. There was not a significant relationship between total involvement, school involvement, or therapy involvement and sibling adjustment on the SDQ. There was a significant negative correlation for both parental self-efficacy and satisfaction with sibling adjustment difficulties. Additionally, there was a significant positive correlation between parental stress and sibling adjustment difficulties. 3.5. Predictors of adjustment A multiple linear regression analysis was conducted to investigate predictors of sibling adjustment based on the five parental variables: PSOC self-efficacy, PSOC satisfaction, involvement in school, involvement in therapy, and PSI-SF total stress score. The overall regression model was significant, F(5, 160) = 2.85, p = .02. PSOC satisfaction was the sole variable that significantly predicted sibling adjustment (B = .23, p = .03). Next, a hierarchical linear regression analysis was performed (Table 3). In order to control for the significant demographic predictors of sibling adjustment, family income and sibling gender were entered in step one and the five parental variables of interest as well as demographics were entered for step 2. The overall model was significant, F (7153) = 4.48, p < .001, R2 = .17.
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Table 2 Bivariate correlations among measured variables. 1
Measures 1. PSOC efficacy N
2
3 .60
5
b
.17
199
.23b
– 197
4. SDQ- difficulties N
–
200
.20b 196
167
.08 199
.20b 195
166
.01 198
.07 194
166
–
.62b 196
167
5. Involvement- total N 6. Involvement- school N
b
.01
.04
.07 .89b .33b
– 163
7. Involvement- therapy N a
.17a 167
.05
198
7 b
.20 196
200 .25b
199
3. PSI-SF N
.10
198 .62b
–
6
a
.43
200
2. PSOC satisfaction N
4
b
– 167
p < .05. p < .01.
Table 3 Hierarchical regression analysis for variance predicting sibling adjustment (SDQ). Model
Variable
Step 1
R2
F
0.10
8.889
Sibling gender Yearly income Step 2
0.17 Sibling gender Yearly income PSOC self-efficacy total PSOC satisfaction total PSI total Involvement in school Involvement in therapy
a b
B
SE B
b
2.7 0.87
0.99 0.26
0.21a 0.25b
2.44 0.82 0.05 0.21 0.02 0.04 0.017
0.98 0.25 0.12 0.1 0.03 0.15 0.07
0.19a 0.24a 0.04 0.24a 0.07 0.02 0.02
4.476
p < .05. p < .01.
In Step 1, DF(2158) = 8.89, p < .001, DR2 = .10, sibling gender and parental income level were both statistically significant. In Step 2, DF(7, 153) = 2.54, p = .03, DR2 = .07, parental satisfaction, sibling gender, and yearly income were significant predictors; however, parental stress, parental involvement in school, parental involvement total, parental self-efficacy, and parental stress were not. Parental satisfaction predicted sibling adjustment difficulties (B = .21, p < 05), such that as parental satisfaction increased, sibling difficulties decreased. 4. Discussion The purpose of this study was to investigate predictors of adjustment in siblings of children with autism, using parental variables related to caring for a child with autism as predictors. Previous studies examining sibling adjustment have found mixed results regarding whether having a sibling with autism affects their siblings’ adjustment positively or negatively. It was hypothesized that higher levels of parental involvement, self-efficacy, and satisfaction, together with lower levels of parental stress, would predict better adjustment of siblings. Findings indicated that parental satisfaction was the only significant predictor of sibling adjustment when taking the other predictors into account. To our knowledge, this study is the first to examine parent satisfaction and self-efficacy using the PSOC in relation to sibling adjustment with this population. Prior studies that have examined parental factors as predictors of sibling adjustment in families of children with autism (Benson & Karlof, 2008) or other disabilities (Giallo & Gavidia-Payne, 2006) have not included the PSOC or other measures of parent satisfaction or self-efficacy as possible predictors of sibling adjustment. Prior research does indicate that parent stress is significantly elevated in mothers of children with autism (Hoffman et al., 2009), and this study supports those findings. In the current study, parental stress was positively correlated with sibling difficulties; however, this relationship did not persist in the hierarchical regression analysis, suggesting that parental stress is not a unique contributor to sibling adjustment when other parental variables are considered. This pattern is consistent
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with Benson and Karlof (2008) longitudinal examination of predictors of the sibling adjustment in families of children with autism. These investigators found that, for siblings without diagnosed disabilities, parental stress among other variables was correlated with sibling adjustment two years later, but that parental stress did not significantly predict the siblings’ later adjustment in a hierarchical regression analysis. Interestingly, Benson and Karlof found that none of their predictor variables were related to later adjustment in siblings with diagnosed disabilities The current findings differ, however, from the research conducted by Giallo and Gavidia-Payne (2006) on families of children with various disabilities, where it was found that parental stress along with other variables was a significant predictor of sibling adjustment. Use of a different measure of parental stress by Giallo and Gavidia-Payne (2006) than did the other two studies may be one factor related to the differing results. Similar to the findings for parental stress, the present research found that parental self-efficacy related to caring for their child with autism was negatively correlated with sibling adjustment, but it did not remain a significant predictor when conducting the hierarchical regression analysis. The correlational finding is consistent with prior research that found parental self-efficacy to be related to child behavior problems in a normative sample (Johnston & Mash, 1989). The current results suggest, however, that a sense of efficacy in handling the special needs of a child with autism does not contribute to how parents perceive the adjustment of siblings. Both parental involvement in school and parental involvement in therapy were found to be associated with several of the other predictor variables. Parental involvement in school was associated with parental self-efficacy and parental satisfaction. These relationships suggest that parents do feel more efficacious and satisfied when they are involved in their child with autism’s education, perhaps gaining tools and knowledge to better manage their child with autism. Parental involvement in school was also significantly negatively correlated with parental stress. Although the mechanism for this relationship is unknown, it is possible parents feel less stressed when they communicate with the teachers at school and are involved somehow in the classroom. Parental involvement in therapy was positively correlated with parental self-efficacy, suggesting that parents gain a sense of confidence and ability through involvement in therapy. No significant relationship was found between parental involvement in school or parental involvement in therapy and sibling adjustment, nor were these variables found to predict sibling adjustment. These findings are in contrast with prior research that found parental involvement to predict sibling adjustment (Benson & Karlof, 2008). However, Benson and Karlof (2008) conducted a longitudinal study in which sibling adjustment was measured two years after data were collected on parental involvement. This difference suggests that the effects of parental involvement in therapy could take a significant amount of time to have an effect on the sibling of the child with autism. Different measures were used to assess parental involvement across the two studies, which could have contributed to the different findings. Additionally, Benson and Karlof (2008) found that the predictive relationship of parent involvement held only for the group of siblings without a diagnosed disability. In the current study, 13% of the siblings were reported by parents to have a disability. The results of the current study need to be interpreted with caution, as they were only examined using bivariate correlations. Further research is needed to examine the roles of these variables and the possible effects they have on each other. The fact that parental satisfaction with the role of caring for a child with autism predicted sibling adjustment in the present study is noteworthy, and it is interesting to speculate on the possible reasons for this relationship. For example, in a study with parents of a normative sample of adolescents, parental satisfaction was positively correlated with the parents’ perception of the youth’s character (Downing-Matibag, 2009). Perhaps consistent with this study, when our study participants were satisfied with their ability to care for the child with autism, they also viewed the siblings’ adjustment in a positive light because of the challenges they faced when having a brother or sister with autism. Satisfaction with their parenting role with the child with autism may have been more salient in how parents perceived the siblings’ adjustment than factors such as feelings of efficacy in meeting the child with autism’s needs and gaining parenting tools through involvement in the child with autism’s education. Additionally, parenting styles could affect the relationship between satisfaction and sibling adjustment. For example, in a normative sample of low-income mothers, Medora, Wilson, and Larson (2001) found that parental satisfaction was positively correlated with parent strategy reasoning. It is possible that, in the current study, higher satisfaction was negatively correlated with ratings of siblings’ behavioral difficulties because the parents who were more satisfied were more likely to reason with their child, thereby decreasing maladaptive behavior and difficulties. Further research is needed to identify the mechanism thorough which parental satisfaction affects sibling adjustment. The amount of variance accounted for in the relationship found between parental satisfaction and sibling adjustment was small, suggesting that there are important predictors of sibling adjustment that were not included in this study, or that have yet to be discovered. Demographic variables may play a role in predicting sibling adjustment, as a few demographic variables were found to be significant in the current study. Further, Benson and Karlof (2008) found that severity of symptoms exhibited by the child with autism was a significant predictor of sibling adjustment. The current study supports prior research findings on the relationship between family income and sibling gender on sibling adjustment, in that siblings in families with higher income and female siblings were found to be better adjusted than their lower family income and male sibling counterparts (Macks & Reeve, 2007). Further, in their study with families of children with a disability, Giallo and Gavidia-Payne (2006) found that the relationship between socio-economic status and sibling adjustment was mediated by parent stress and family resilience. It also seems likely that families with higher income can access more supportive resources, such as higher quality therapy. It is interesting to speculate on why female siblings of children with autism are better adjusted to than their male counterparts. Perhaps female siblings are more mature at their
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age than their male counterparts and can better process the difficulties of having a brother or sister with autism. For example, Bourdon et al. (2005) suggested that developmental periods for each gender must be taken into account; difficulties in boys increase between the ages of 8 and 14, whereas difficulties in girls increase between the ages of 11–17. All of the participating siblings in the current study were below age 11. Additionally, Verte, Roeyers, and Buysse (2003) found female siblings of children with high functioning autism ascribed higher feelings of social competence and more positive self-concept than both female siblings of children without a disorder and male siblings in both groups. Further research is needed to more clearly define this relationship and identify the mechanisms behind it. This study is subject to several limitations, including the cross-sectional design, reliance on parental self-report data, and inclusion of a limited number of predictor and criterion variables. One salient limitation of the study was that questionnaires were administered online versus using face-to-face interviews and were solely based on caregiver report. Conducting the study using in-person interviews could possibly provide more detailed information on the level and type of involvement parents had in both the therapy and school setting of the child with autism. Additionally, autism diagnoses for the autism participants and diagnoses for the sibling (if reported) were based on parent report and not verified by a licensed clinician. This was a convenience sample. Most participants were caucasian, and other ethnic groups were underrepresented. A wider sample is needed to represent a broader population base. Furthermore, this sample was primarily middle to upper class with regard to socio-economic status. It is plausible that those who lack resources, such as the internet, may work more and could be less involved in their child’s education, which may have revealed different relationships between the parental variables of interest and sibling adjustment. The PSOC subscales have not previously been examined in relation to sibling adjustment in families of children with autism, and we found that the parental satisfaction subscale predicted sibling adjustment. Future studies could examine the role of parental satisfaction as well as parental self-efficacy in the adjustment of siblings in families of children with autism not only to replicate these findings, but to analyze the mechanisms behind this relationship. It is possible that some parents of children with autism from the present study devote themselves to autism research, advocacy, or awareness, giving them a sense of satisfaction as parents. These parents may also devote themselves to the siblings’ well being, which may have positively affected their adjustment. Future studies need to examine what is driving the satisfaction of parents of children with autism and its relationship to sibling adjustment. Additionally, research is needed to evaluate the indirect effects of parental involvement in the education of their child with autism on the adjustment of the child’s siblings. Longitudinal studies on level of parental involvement in both therapy and education during the early years after a child receives an autism diagnosis may reveal the role of parental involvement on sibling adjustment during those first critical years. This study has implications for professionals working with children with autism. Because this study found parental satisfaction to predict sibling adjustment in families of children with autism, it may be beneficial for professionals working in this field to assess levels of parental satisfaction. If parental satisfaction is assessed and found to be at low levels, professionals can discuss various strategies with the parent on how to increase parental satisfaction, thus protecting for positive sibling adjustment. They also could inquire about the siblings’ adjustment to determine if support or resources are needed directly for the siblings. 5. Conclusions Contrary to previous research, parental involvement in therapy and school, parental self-efficacy, and parental stress in families of children with autism did not significantly predict sibling adjustment, although some correlational relationships were found. Parental satisfaction as measured by the PSOC in parents of children with autism was found to significantly predict adjustment levels in the siblings of children with autism, as was sibling gender and family income. The findings suggest that the quality of a parent’s relationship with one child (notably the child with autism) affects perceptions of a sibling’s adjustment. Whether this relationship is due to one or more other variables is unclear and awaits further research. Furthermore, the failure of parental involvement in the child with autism’s school or therapy to serve as a unique predictor of sibling adjustment adds new findings to the current literature, in that, with this large sample, involvement was not related to sibling adjustment, as had been found in previous studies with smaller groups or using longitudinal methods. Additional research on both parental involvement and parental satisfaction would help to better understand the implications of parent constructs on the adjustment of siblings of children with autism. Acknowledgments This study was conducted as a senior honors’ thesis by the first author. The research was supported by an undergraduate research grant provided by PSI CHI, the International Honor Society in Psychology. Sincere gratitude goes out to all the parents who participated in this study, as well as all of those who care for someone affected by autism. References Abidin, R. R. (1995). Parenting stress index (3rd ed.). Professional ManualOdessa, FL: Psychological Assessment Resources, Inc. American Psychiatric Association. (2000). (4th ed. (revised)). Diagnostic and Statistical Manual of Mental DisordersWashington, DC: American Psychiatric Association.
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