Sibling supports are any services, interventions, or programs focused on typically developing siblings of individuals with

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1 Definition Sibling supports are any services, interventions, or programs focused on typically developing siblings of individuals with intellectual or developmental disabilities, including autism spectrum disorders (ASD), with the goal of improving sibling well-being or increasing siblings' participation in the lives of their brothers or sisters with a disability. Sibling supports most often take the form of peer support but can also be informational sessions aimed at increasing knowledge about their brother or sister. Historical Background Sibling supports were initially developed in reaction to extant research and anecdotal reports suggesting that having a brother or sister with an intellectual or developmental disability, including ASD, can be difficult for some siblings (Lobato, 1983; Meyer & Vadasy, 1994). Although supports and services are often available to the individual with the disability himself or herself, supports are far less common for family members, including siblings. The number of sibling support programs and interventions has increased somewhat over the past 20 years; Sibshops (Meyer & Vadasy, 1994) is perhaps the first and best-known example of a sibling support. Many of the sibling support programs that have followed either incorporate aspects of the Sibshop model or build on it. It is important to note that support interventions and programs for siblings have typically been geared toward siblings of individuals (mostly children) with any intellectual or developmental disability, including siblings of those with ASD. With the exception of one program, none of these supports specifically targets siblings of individuals with ASD. Rationale or Underlying Theory Sibling support programs and interventions share two main rationales. The rationale for programs that mainly focus on fostering sibling peer support - such as Sibshops (event-based program for siblings of children with disabilities: Meyer & Vadasy, 1994), Sibkids (an internet listserv for siblings of children with disabilities developed as part of the Sibling Support Project, the umbrella organization that also includes Sibshops), and support group for siblings of children with ASD based at the Thistletown Regional Centre in Toronto, Ontario (Smith & Perry, 2004) - is that being a sibling of an individual with intellectual and developmental disabilities can be a primarily positive experience, primarily negative experience, or a combination of the two. Furthermore, these siblings face unique challenges and experiences not shared by children who do not have a brother or sister with disabilities. Thus, developing peer supports with others who have a brother or sister with intellectual or developmental disabilities will allow siblings to discuss their experiences with others who understand, leading to wellness and well-being. The rationale for sibling supports that are more informational in nature - such as the Sunsibs program based at Sunfield residential school in the United Kingdom (described in Conway & Meyer, 2008), the Siblink program (Lobato & Kao, 2002 ), the "Intervention for Siblings: Experience Enhancement" program (ISEE; Williams et al., 2003), and an unnamed program focused on siblings from socioeconomically disadvantaged families living in the inner city (Phillips, 1999) - is that increasing siblings' knowledge about their brother or sister's disability, behaviors, and needs will be beneficial to the nondisabled siblings. Specifically, increasing knowledge might lower the stress experienced by these siblings, help them to develop a closer relationship with their brother or sister with disabilities, and prepare them for the possibility of providing care for their brother or sister in adulthood. Goals and Objectives Existing sibling support programs have three general goals/objectives: increasing peer support, sharing of information, and increasing involvement of the sibling with the brother or sister with the disability. The Project, which includes both Sibshops and the Sibkids/Sibnet listservs, has the primary objective of fostering peer support. The Sibshop guidebook (Meyer & Vadasy, 1994) lays out five specific goals related to this objective: (1) "Provide brothers and sisters 1

2 of children with special needs an opportunity to meet other siblings in a relaxed, recreational setting"; (2) "Provide brothers and sisters with opportunities to discuss common joys and concerns with other siblings of children with special needs"; (3) "Provide siblings with an opportunity to learn how others handle situations commonly experienced by siblings of children with special needs"; (4) "Provide siblings with an opportunity to learn more about the implications of their sibling's special needs"; and (5) "Provide parents and other professionals with opportunities to learn more about the concerns and opportunities frequently experienced by brothers and sisters of people with special needs." As can be seen from these specific goals, sharing of information from one sibling to another (and not necessarily from teacher to sibling) is also an important aspect of Sibshops. Although not as well defined, the internet listserv arm of the Project (Sibkids for children and Sibnet for adults) has the objective of providing peer support and discussion in a secure environment. Two of the existing sibling support programs have the primary objective of increasing knowledge about the brother' s or sister' s disability. The Thistletown program (Smith & Perry, 2004) has perhaps the most delineated specific goals from this group of programs, including the following: (1) increasing knowledge and understanding of ASD and related developmental disorders, (2) providing the opportunity for siblings to discuss their feeling in an accepting environment, (3) helping siblings to share ways of coping with difficult situations unique to having a sibling with autism, (4) enhancing siblings' self-concepts, and (5) encouraging siblings to have fun in a supportive environment. As can be seen from these goals, sibling peer support is also an objective of the Thistletown program. The ISEE program (Williams et al., 2003) has the specific objectives of improving sibling knowledge, as well as improving siblings' perceptions of and affective reactions to their brother's or sister's illness or disability (this program also included siblings of children with chronic illness). The support program geared toward socioeconomically disadvantaged children (Phillips, 1999) and the SibLink program (Lobato & Kao, 2002) both promote providing information and enhancing peer social support as equal objectives. Specifically, the program for disadvantaged families has the goal of alleviating the stress of having a sibling with an intellectual disability by providing information about developmental disabilities to facilitate understanding and by creating a context that provides social support from peers and adults. The SibLink program has the goals of improving sibling knowledge, sibling adjustment to living with a brother or sister with a chronic illness or developmental disability, and sibling connectedness to others who have a brother or sister with a chronic illness or developmental disability. Finally, the Sunsibs program (as described in Conway & Meyer, 2008) has the primary objective of increasing involvement of the sibling in the lives of his/her brother or sister with ASD or other disabilities. In order to increase sibling involvement, Sunsibs has the specific goals of providing opportunities for siblings of children in the Sunfield program to meet other siblings and build relationships with them, of keeping siblings in touch with the Sunfield facility, and of helping siblings feel an integral part of their brother's or sister's lives while that brother or sister is participating in the Sunfield programs. As can be seen from the above descriptions, sibling support programs differ in the emphasis placed on facilitating increased peer support, sharing of information, and increased involvement of the sibling with the brother or sister with the disability. Furthermore, many of the programs incorporate two or three of these themes into their overall goals or objectives. Treatment Participants The majority of sibling supports focus on school-aged children. Sibshops were originally developed for siblings aged 8-13 years but had been adapted to older or younger school-aged children (Conway & Meyer, 2008; Meyer & Vadasy, 1994). The Sibkid listserv is geared toward siblings under 18 years of age. The Thistletown program included siblings aged 6-16 years (Smith & Perry, 2004), ISEE included siblings aged 7-15 years (Williams et al., 2003), and the program for disadvantaged children included siblings aged 9-12 years (Phillips, 1999). Further, the SibLink program included siblings aged 8-13 years (Lobato & Kao, 2002). Two of the programs are open to adult siblings. The Sunsibs program allows adult siblings to participate, as long as their brother or sister with the disability is between 6 and 19 years of age (Conway & Meyer, 2008). The Sibnet listserv is open to siblings who are 18 years of age or older. Nearly all of the existing sibling supports focus on siblings of individual with intellectual or developmental disabilities more generally, including those with ASD. The sole program that included only siblings of individuals with ASD is the Thistletown program. Two of the sibling supports - the ISEE and SibLink programs - included siblings of children with chronic illness in addition to siblings of children with developmental disabilities. 2

3 Treatment Procedures Sibling supports take the form of workshops/events, one-on-one supports, and secure internet listservs. Specific information about the procedures and content for each program can be found in the References and Readings. Workshops and events are the most prevalent type of procedure. Sibshops (Meyer & Vadasy, 1994) consist of events that contain a mix of information, discussion, games, activities, and guests. The Thistletown program is an 8-week, age-specific support group that includes exercises, games, and activities promoting group cohesion, informational session on autism and related disorders, and discussions of feelings and attitudes associated with living with a person with a developmental disability (Smith & Perry, 2004). Similarly, the SibLink program consists of six 90-min sessions conducted over 6-8 weeks, focused on improving sibling knowledge and family communication, managing feelings about having a brother or sister with a disability, and discussing how to balance siblings' own needs (Lobato & Kao, 2002). The SibLink program also includes recreational activities at each session. The ISEE program contains structured teaching about the brother's or sister's disability or illness and psychosocial sessions over the course of a 5-day summer camp and two follow-up booster sessions (Williams et al., 2003). The program for socioeconomically disadvantaged children consists of an after-school program that lasts for 15 weeks and involves discussion about developmental disabilities, recreational activities, and homework assistance (Phillips, 1999). The commonalities among most of these programs are the following: (1) having a specific starting and ending point with a limited number of sessions (except for Sibshops, which is ongoing) and (2) inclusion of social, informational, and recreational components. The other procedures are less common. The Sunsibs program involves more direct support and training to the sibling, whereas the Sibkid and Sibnet listservs involve siblings in posting and responding to messages on a secure website. Efficacy Information All of the sibling supports except for Sunsibs and the Sibkids/Sibnet listservs have some information about efficacy. However, it is difficult to draw conclusions about efficacy as the authors were only able to find one study that tests efficacy for most of the programs. Specific information about efficacy for each program is available in the References and Readings. Four of the five studies included standardized, validated measures as indicators of efficacy. Two programs - the ISEE program and the program for socioeconomically disadvantaged children - included before and after treatment measures and a control group that did not receive the treatment. For the ISEE program, researchers found improvements in knowledge and attitudes, social support, and self-esteem, and to some extent, behavior problems for siblings in the full-treatment condition (structured teaching and psychosocial sessions at summer camp) and improvements in attitude, self-esteem, and social support in the partial-treatment condition (summer camp only). Researchers concluded that there were dosage effects, with the full-treatment siblings showing the most improvement and partial-treatment siblings showing more improvement than controls (Williams et al., 2003). Researchers testing the program for socioeconomically disadvantaged children collected data on sibling depression, anxiety, perceived social support, and sibling relationship. They found improvement in each of these measures from before to after intervention, with no improvement in the control group (Phillips, 1999). Efficacy evaluation of two of the interventions - the Thistletown and SibLink programs - included standardized measures taken before and after intervention but no control group. Siblings who participated in the Thistletown program reported increased self-concept and greater knowledge about their brother's or sister's disability (ASD) at the conclusion of the program, but there were no significant differences in coping (Smith & Perry, 2004). After treatment, participants in the SibLink program reported more accurate knowledge of their brother's or sister's disability, greater connectedness with that sibling, and fewer behavior problems relative to pretreatment (Lobato & Kao, 2002). Finally, efficacy of Sibshops was not evaluated by standardized measures, but instead by asking 30 sibling participants about their feelings regarding the program (Johnson & Sandall, 2005). Evaluators found that over 90% of surveyed siblings reported positive effects of Sibshops on their feelings toward their brother or sister, over 60% stated that Sibshops taught them coping skills, and 94% said that they would recommend Sibshops to others. In a study of 16 Sibshops participants, D'Arcy, Flynn, McCarthy, O'Connor, and Tierney ( 2005) found that 14 children reported that they liked the program, with 11 rating Sibshops as "excellent" or "very good," though the participants showed no significant improvements in self-esteem after attending Sibshops. In sum, there is some evidence to suggest that sibling supports are effective in improving sibling knowledge about their brother or sister with disabilities and sibling psychosocial and behavioral outcomes. Further study is needed to determine 3

4 whether benefits of each of these sibling supports are also found in other samples. Outcome Measurement A number of standardized measures used to determine efficacy were included in the studies. There were no common efficacy measures across studies. In other words, each instrument was used as an indicator of efficacy in only one of the interventions/support programs. Self-esteem and self-concept were measured using the Piers-Harris Children's Self-Concept Scale (Piers & Harris, 1969), the Self-Perception Profile for Children (Harter, 1985), and the Self-Esteem Questionnaire (DuBois, Felner, Brand, & Phillips, 1996). Sibling psychological well-being was measured using the Child Depression Inventory (Kovacs, 1992) and the Children's Manifest Anxiety Scale-Revised (Reynolds & Richmond, 1985). Sibling behavior problems were measured using the Eyberg Child Behavior Inventory (Eyberg & Robinson, 1983) and the Child Behavior Checklist (Achenbach & Edelbrock, 1983). Sibling social support was measured with the Social Support Scale for Children (Harter, 1985) and the Perceived Social Support Scale-Revised (Procidino & Heller, 1983). A number of different measures of sibling knowledge of, attitudes about, and relationship toward their brother or sister with the disability were used to determine efficacy, many of which appear to be developed for that specific research project. Exceptions include the Autism Knowledge Measure for Young Children (Perry, 1989), the Sibling Relationships Questionnaire (Furman & Buhrmester, 1985), and the Sibling Perception Questionnaire (Hodapp, Wijma, & Masino, 1997; Sahler & Carpenter, 1989). Qualifications of Treatment Providers Just over one-half of the sibling supports have no specified qualifications for treatment providers except for training in that specific support program. The exceptions are the ISEE program, which uses pediatric nurse clinicians to deliver treatment, and the program for socioeconomically disadvantaged children, which require team leaders to have a minimum of 3 years of experience working with families of children with developmental disabilities and at least a high school education. The SibLink program was delivered by two doctoral-level trainees in psychology or psychiatry for each sibling group. See Also Family Burden Family Therapy References and Readings Achenbach, T. M., & Edelbrock, C. S. (1983). Manual for the child behavior checklist and revised child behavior profile. Burlington, VT: University of Vermont, Department of Psychiatry. Conway, S., & Meyer, D. (2008). Developing support for siblings of young people with disabilities. Support for Learning, 23, D'Arcy, F., Flynn, J., McCarthy, Y., O'Connor, C., & Tierney, E. (2005). Sibshops: An evaluation of an interagency model. Journal of Intellectual Disabilities, 9, DuBois, D. L., Felner, R. D., Brand, S., & Phillips, R. S. C. (1996). Early adolescent self-esteem: A developmental-ecological framework and assessment strategy. Journal of Research on Adolescence, 6, Eyberg, S., & Robinson, E. (1983). Conduct problem behavior: Standardization of a behavior rating scale with adolescents. Journal of Clinical Child Psychology, 12, Furman, W., & Buhrmester, D. (1985). Children's perception of the qualities of sibling relationships. Child Development, 56, Harter, S. (1985). Manual for the social support scale for children. Denver, CO: University of Denver. Hodapp, R. M., Wijma, C. A., & Masino, L. L. (1997). Families of children with 5p- (cri du chat) syndrome: Familial stress and sibling reactions. Developmental Medicine and Child Neurology, 39, Johnson, A. B., & Sandall, S. (2005). Sibshops: A follow-up of participants of a siblings support program. Seattle, WA: University of Washington. 4

5 Kovacs, M. (1992). Manual for the children's depression inventory. North Tonawanda, NY: Multi-Health Systems. Lobato, D. (1983). Siblings of handicapped children: A review. Journal of Autism and Developmental Disorders, 13, Lobato, D. J., & Kao, B. T. (2002). Integrated sibling-parent group intervention to improve sibling knowledge and adjustment to chronic illness and disability. Journal of Pediatric Psychology, 27, Meyer, D. J., & Vadasy, P. F. (1994). Sibshops: Workshops for siblings of children with special needs. Baltimore: Paul H. Brookes. Perry, A. (1989). Autism knowledge measure for young children. Unpublished. Thistletown Regional Centre, Toronto. Piers, E. V., & Harris, D. B. (1969). The Piers-Harris children's self-concept scale. Nashville, TN: Counselor Recordings and Tests. Phillips, R. S. C. (1999). Intervention with siblings of children with developmental disabilities from economically disadvantaged families. Families in Society, 80, Procidino, M. E., & Heller, K. (1983). Measures of perceived social support from friends and from family: Three validation studies. American Journal of Community Psychology, 11, Reynolds, C. R., & Richmond, B. O. (1985). Revised children's manifest anxiety scale (RCMAS). Los Angeles: Western Psychological Services. Sahler, O. J. Z., & Carpenter, P. J. (1989). Evaluation of a camp program for siblings of children with cancer. American Journal of Diseases of Childhood, 143, Smith, T., & Perry, A. (2004). A sibling support group for brothers and sisters of children with autism. Journal on Developmental Disabilities, 11, Williams, P. D., Williams, A. R., Graff, C., Hanson, S., Stanton, A., Hafeman, C., et al. (2003). A community-based intervention for siblings and parents of children with chronic illness or disability: The ISEE study. Journal of Pediatrics, 143, Dr. Julie Lounds Taylor Carolyn M. Shivers Vanderbilt Kennedy Center and Department of Pediatrics, Vanderbilt University, Nashville, USA Department of Psychology, Vanderbilt University, Nashville, USA DOI: URL: Part of: /_ Encyclopedia of Autism Spectrum Disorders Editor: Dr. Fred R. Volkmar PDF created on: December, 12, :38 5