Shannon Wright Martino and Dr. Susanne Olsen, School of Family Life
A child with a disability may be a unique stressor to all members of the family. For years, researchers have focused on the parents and the child with a disability in the family. However, fewer studies have specifically focused on typically developing siblings of children with disabilities. Therefore, to extend previous research, the purpose of this study was to examine the coping styles used by siblings in families where there is a child with a disability. Medical and practical improvements have increased the lifespan of disabled children and the amount of time they spend at home. Because of this, siblings are more likely to be affected today than in the past (Cox et al., 2002). According to Lobato and associates (1988), the relationship among siblings is one of the most significant, prominent, and long-lasting of all human associations. Stoneman and Brody (1993) note that most disabled children are not the only child in the home. Therefore, siblings of children with disabilities are fairly common. Research indicates that families give meaning and solidity to life through a wide range of established patterns of functioning. Illnesses and disabilities, however, demand change within these set patterns (McCubbin, 1993). In order to change these patterns of functioning, children must develop coping methods that they can use on a daily basis. Unfortunately, most research reveals that disabilities have predominately negative effects. Therefore, in an effort to improve health and life within the home, this qualitative study focused on the various ways that siblings cope with daily stressors.
Description of Subjects
The participants were a subset of subjects from a larger project where families were recruited at two conferences held on disabilities. To maintain confidentiality, each sibling was assigned a code number that he/she was identified by throughout the study. Participants included 32 siblings who came from families with an autistic child or a child with Down syndrome (n=13 and n=19 respectively). Participants in this study ranged in age from 5-16, with the mean age being 10.31 years. Over half (n=18; 51.8%) of the sample was female and 41.9% (n=13) was male. The majority of siblings came from two-parent homes (n=29, 90.6%). All of the families in the study were Caucasian and 90.5% were Latter-day Saints (n=29).
Procedure
Participants were interviewed by a trained interviewer, using a semi-structured, open-ended questionnaire in which siblings were asked 18 questions dealing with the stressors of daily life. Follow-up questions were asked if further information from a response was needed. Interviews were tape recorded and responses transcribed verbatim.
Findings
Emerging themes among sibling responses were analyzed using content analysis and open, axial, and selective coding. Emerging themes were grouped into four categories: proactive, interactive, emotionally reactive, and nonactive. Proactive responses were demonstrated when siblings coped with a stressful situation by problem solving and/or physical action. Interactive responses demonstrated instances where siblings sought social support to manage the stressful situation and specifically mentioned the involvement of another person. Emotionally reactive responses included responses were siblings demonstrated an expression of feelings of emotion or engaged in a solely cognitive response. Nonactive response denote that siblings did not demonstrate a physical or emotional response or denied the occurrence of a stressful situation. Siblings of children with autism used proactive coping methods 54.63% of the time (n=124). Siblings of children with Down syndrome used proactive coping methods 53.96% of the time (n=184). Interactive coping methods were used by siblings of autistic children 29.07% of the time (n=66), while siblings of Down syndrome children used interactive coping method 28.74% of the time (n=98). Emotionally reactive responses were not seen as highly effective in either sample. Emotionally reactive coping methods only resulted in 7.49% (n=17) of the responses for the autistic sample and 10.56% (n=36) for the Down syndrome sample. Nonactive responses were also rarely seen for siblings of autistic children and siblings of Down syndrome children (n=20, 8.81% and n=23, 6.74% respectively).
Implications
Families with a child with a disability are in need of many different types of services. Sibling support groups need to be created with the specific needs of siblings in mind. By knowing the specific coping methods which siblings use to manage everyday stressors, including living with a child with a disability, curriculums that more fully meet the direct needs of siblings can be created. By facilitating groups that allow siblings to learn to properly manage and cope with a child with autism or Down syndrome, the life of the sibling and the life of the child with a disability can greatly be improved.