Dr. Julie Lounds Taylor and Carolyn M.

Shivers
Sibling Support

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Sibling Support
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 Sibling Support 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

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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 Sibling Support
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.

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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

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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, 113-117.
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, 43-57.
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, 543-579.
Eyberg, S., & Robinson, E. (1983). Conduct problem behavior: Standardization of a behavior rating scale with
adolescents. Journal of Clinical Child Psychology, 12, 347-354.
Furman, W., & Buhrmester, D. (1985). Children's perception of the qualities of sibling relationships. Child
Development, 56, 448-461.
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, 757-761.
Johnson, A. B., & Sandall, S. (2005). Sibshops: A follow-up of participants of a siblings support program. Seattle,
WA: University of Washington.

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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
, 347-364.
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, 711-716.
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, 569-577.
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, 1-24.
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, 690-696.
Smith, T., & Perry, A. (2004). A sibling support group for brothers and sisters of children with autism. Journal on
Developmental Disabilities, 11, 77-88.
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, 386-393.

Sibling Support
Dr. Julie Lounds
Taylor

Vanderbilt Kennedy Center and Department of Pediatrics, Vanderbilt

University, Nashville, USA

Carolyn M.
Shivers

Department of Psychology, Vanderbilt University, Nashville, USA

DOI:

10.1007/SpringerReference_334380

URL:

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Part of:

Encyclopedia of Autism Spectrum Disorders

Editor:

Dr. Fred R. Volkmar

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