TOP > Projects > Past Projects > brownU > Vol.22, No.9, September 2006 - SibLink: Meeting the needs of siblings of children with chronic illness and disability


Vol.22, No.9, September 2006 - SibLink: Meeting the needs of siblings of children with chronic illness and disability

When parents learn of their child's disability or illness, among the first questions they often ask themselves is, "What will this mean for our other children?" Most children are raised with brothers and sisters and spend more of their lifetimes with their siblings than they do with their parents. Thus, when a child has a developmental disability or chronic illness, siblings' lives are affected.

Consider the following two families who were enrolled in an early intervention program with which one of the authors was associated many years ago. By all objective measures, these two families were similar. They were both Caucasian and of middle class background. Each family consisted of two biological parents and their three children, the youngest under 3 years old and recently diagnosed with autism. Developmental and behavioral therapies were provided directly to the young clients in their home environment. In each case, the treatment goal was improving communication skills and the prescribed approach involved "total communication" wherein speech was paired with manual sign to facilitate communication with others.

When the home therapist arrived in the home of one of the 3-year-old boys, she was directed to a therapy area next to the kitchen, from where the mother could observe the child's treatment. She requested that her two older boys, ages 4 and 6 years, be allowed to sit in the therapy sessions and learn the signs along with their autistic brother. The brothers moved in and out of the therapy sessions according to their self-determined interest and the therapist's ability to engage their attention. They showed off their newly acquired sign language skills when their friends visited the house. At times they cheered for their youngest brother's accomplishments (no matter how small) and at other times they expressed frustration with his inappropriate or aggressive behavior (no matter how unintentional). As best she could, this mother had explained what autism was to the boys and hoped that by understanding autism and learning total communication they all would someday be able to get along and play with one another.

Now consider the home of the other 3-year-old boy with autism and his two older brothers, ages 5 and 6 years. When the therapist arrived to provide a similar prescription of total communication and behavior therapy, the mother prepared a therapy area in the family living room. In this home, Dutch doors inhibited traffic between the living room and the rest of the house. The mother directed the therapist and the youngest child into the living room, locked the bottom half of the Dutch-doors behind her, and harshly scolded the two older brothers whenever they attempted to peer over the door to see what was happening on the other side. This mother explained that she did not want the brothers to be part of the therapy session because they would be distracting and would dilute the therapy the youngest child received. Further, she did not believe in labeling or explaining autism to the older boys because she thought this would contaminate their perceptions of their younger brother and she wanted to protect the potential for them to experience typical sibling relations.

Using diametrically opposed strategies, the mothers in both of these families aimed to create environments each believed would best nurture every one of their children as well as their children's future sibling relationships. Yet the environments they created probably gave rise to very different sibling understandings and feelings about autism and what it means to have a brother or sister with special needs.

Based on our earliest experiences with families such as those described above, we became sensitized to the wide range in siblings' understanding of and adjustment to a brother or sister's special needs. Although we were aware that many siblings adjust very well, research had suggested that they are at risk for developing psychological adjustment problems, including symptoms of anxiety and depression (Stoneman & Berman, 1993). Siblings complain that they are not given information about their brother or sister's condition and that they experience extra child-care and household responsibilities, differential treatment, embarrassment, isolation from their peers, and disruptions in family activities due to their brother or sister's special needs (Meyer, 1997). Based on these observations and the popularity of support/advocacy groups for parents of children with special needs, the idea of providing information and peer support to siblings began to take hold (see Lobato, 1990 and Meyer & Vadasy, 1994 for reviews).

What is SibLink?
In 1994, we created "SibLink" at Hasbro Children's Hospital/Rhode Island Hospital to meet the needs of healthy brothers and sisters of children with chronic medical, developmental, and behavioral problems (Lobato & Kao, 2002; 2005). SibLink is based on the belief that, like their parents, siblings cope and adapt better to their brother or sister's illness or disability when they have information, support from their families, and the opportunity to meet with other children who share similar experiences. SibLink workshops are designed to be educational, therapeutic, and fun. Simultaneous groups are often conducted for parents as well in order to address their particular concerns about balancing all of their children's needs. All children and adolescents who enroll in SibLink receive an individual evaluation before and after the group program. The evaluations include interviews and questionnaires we complete with parents and siblings separately. This information helps us individualize the workshops by learning about each prospective group member's viewpoint, strengths, and needs.

After completion of the initial evaluation, siblings meet together in groups of about 6 kids of similar age and developmental level (e.g., 4-7 years, 8-13 years, and teens), though the specific diagnoses of their brothers and sisters may vary. The SibLink program consists of six 90-minute group sessions conducted over a 6-8 week period. The groups are lead by doctoral-level trainees in child clinical psychology, psychiatry, and pediatrics completing their advanced training through the Brown Medical School. The first two sessions are high-energy ice breakers. They set the stage for siblings to talk openly and honestly about themselves and their family circumstances. Siblings bring in photographs or pieces of equipment to learn about one another's brother or sisters' conditions. They become the "expert" and answer one another's questions about the child and his or her treatment. We clear up any misconceptions the sibling harbors about the child's condition and we provide the sibling and parents with resources they can use to continue discussion at home.

The second two weeks focus on common issues that are unique to the siblings themselves. We try to strike a balance in our discussion of both positive as well as stressful events or circumstances they have experienced. Activities for 8-13 year olds might include videotaping mock talk shows in which siblings interview each other as "panels of experts" explaining, for example, how they cope when family plans change due to a brother or sister's illness. Siblings 4-7 years old tell stories of something that happened with their brother or sister reflecting the emotion words selected from a bean bag toss, or they may sit in a circle with their parents as a group leader reads a children's story dealing with a sibling of a child with special needs.

The fifth session focuses on siblings themselves and we disallow any talk about brothers and sisters for one full session. We highlight siblings' own strengths, talents, and future goals and dreams. To help parents gain new perspectives on siblings' experiences and future potential, an optimistic adult sibling from the community comes as a guest speaker to the parent group to discuss his or her own life experiences and to answer parents' questions. The final, sixth session reviews major concepts through modified versions of games such as SibLink Jeopardy or Bingo, and provides a "graduation" ceremony and pizza party attended by parents and any other family members.

Outcomes look promising
To date, over 200 siblings have participated in the SibLink program. We evaluated the SibLink program with a few generations of our 8-13 year old groups and found improved knowledge of their brother or sister's disorder, better psychological adjustment, and a stronger sense of connectedness to other kids in similar situations upon completion of the program (Lobato & Kao, 2002). We found similar improvements in knowledge and sense of connectedness among siblings in our younger groups (Lobato & Kao, 2005). Families participating in these programs have been very positive about their experiences, especially those families who participate in the groups that involve both a sibling and collateral parent component.

We plan to continue our research and clinical activities, which highlight the importance of including siblings when working with families of children with special needs. It is our hope that in the future, parents of children with disabilities and illnesses will have more than their own instincts to follow and that they will be able to access programs such as SibLink for information and support to promote siblings' positive adjustment.

Debra Lobato, Ph.D. is Director of Child Psychology, Bradley Hasbro Research Center and Department of Psychiatry, Rhode Island/Hasbro Children's Hospital; Associate Professor (Clinical), Brown Medical School, and Director of SibLink.

Wendy Plante, Ph.D. is a staff psychologist, Bradley Hasbro Research Center and Department of Psychiatry, Rhode Island/Hasbro Children's Hospital; Clinical Assistant Professor, Brown Medical School, and Associate Clinical Director of SibLink.

Barbara Kao, Ph.D. is a staff psychologist, Department of Pediatrics, Rhode Island Hospital; Clinical Assistant Professor, Brown Medical School, and Associate Research Director of SibLink.

The Brown University Child and Adolescent Behavior Letter, September 2006
Reproduced with permission of John Wiley & Sons, Inc.
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