Siblings' Coping Strategies and Mental Health Services: A National Study of Siblings of Persons With Schizophrenia

One of the most striking findings in our study is that siblings identified services for the ill family member as more important than specific services for themselves. The ill siblings had a difficult time in the community. They had been ill an average of 19.4±10.6 years. Most had a history of multiple hospitalizations, about one-third had a history of substance abuse, and one-fourth had been homeless. These are all factors that significantly increased stress for siblings in this study ( 13 ). Community services are becoming increasingly scarce, as indicated by greater numbers who are homeless and imprisoned ( 16 ). Lack of direct services has serious consequences for the ill person and the sibling. According to a sibling who has a 41-year-old sister with schizophrenia: "My ultimate concern is for my sibling who will die from poor living conditions, which are directly related to her illness…. I've been waiting almost two years for her name to reach the top of a housing list. They tell me it will be about one more year! … If the illness were treated properly, the effect on the sibling would diminish."

Siblings identified symptom control for the ill siblings as one of the most helpful coping strategies as well as a top-ranked service. In previous work we found that siblings who reported more disturbing behavior of their ill relative had significantly more stress in multiple aspects of their lives ( 17 ). Symptoms and behaviors that were the most stressful for siblings included psychotic symptoms, noncompliance, and verbal aggression. These findings support Pearlin's ( 11 ) conceptualization of the importance and impact of primary stressors in his model that include illness symptoms that trigger multiple stress reactions. These findings also lend support to research in which the ill person's psychiatric symptoms and behavioral problems have been consistently observed to be strong predictors of family burden ( 18, 19 ).

Nearly all of the siblings wanted service providers to assist with long-term planning for the ill sibling and clarify their role in future care. One of the greatest sources of stress for 612 siblings (82%) was "concern about who will take care of the ill sibling when parents no longer can." At the time of the study, respondents provided emotional and social support and helped with crises, but few coordinated the total care ( 20 ). About one in five ill siblings were living with aging parents, and in one-third of the families one or both parents were deceased. Future caregiving for persons with mental illness is emerging as a social problem for which few are prepared ( 21 ). Although siblings are considered the logical replacements for aging parents, it is unclear what their roles will be or how this will impact their lives ( 22 ). Hatfield and Lefley ( 23 ) reported that siblings were more likely to provide social and emotional support than the instrumental support offered by parents. Siblings are in a dilemma: spending time with ill siblings and living with them in the past has significantly increased their stress ( 13 ); however, having little to do with the ill sibling was the least helpful of all coping strategies. These findings underscore the importance of assisting siblings in the development of strategies that will maintain relationships with ill siblings and decrease stress.

Information about the sibling's illness and availability of providers to answers questions were top service needs. Although clinical guidelines for the treatment of patients with schizophrenia recommend that providers share information with families and involve them in treatment, research indicates that collaboration is not part of routine clinical practice ( 24 ). Over the years, siblings have been left out of the treatment process and lack the knowledge and skills needed to manage the illness situation ( 8 ). A sibling wrote, "The worst problem our family has had, and repeatedly, is that during hospitalization (dozen or more) the doctors cannot share information about treatment with the family. My brother is considered an independent adult with privacy rights, even though he is dependent on family and community for support. We are neglected at this crucial time."

Understanding that no one in the family is to blame for causing schizophrenia was the most helpful coping strategy of all. In the past, about one-fourth of these siblings felt guilty because professionals blamed the family for the illness ( 20 ). Torrey ( 16 ) emphasized the importance of a no-blame strategy: "Developing the right attitude is the single most important thing an individual or family can do to survive schizophrenia. The right attitude evolves naturally once there is resolution of the twin monsters of schizophrenia—blame and shame." Accepting the illness is an important ingredient of the right attitude and was acknowledged as being very helpful to siblings in this study as well as earlier studies ( 7 ). Reading literature about schizophrenia helped put the illness in perspective and was also a top-ranked coping strategy.

It is no surprise that social support was a highly ranked coping strategy. Solomon and Draine ( 25 ) noted that social support was the strongest factor in their study in explaining adaptive coping among family members of persons with mental illness. Although their study found that friends and coworkers were helpful, the most helpful of all were family members and others outside their family who also had an ill relative. On the other hand, very few siblings found service providers to be helpful. Siblings with a diagnosed mental illness or substance abuse problems may be in need of more extensive counseling support from providers and referrals to support groups, such as Alcoholics Anonymous. When either of these problems was present, siblings experienced more stress in every measured aspect of their lives ( 13 ). Outside of the formal system of care, many siblings found support groups (NAMI) and religious groups to be valuable sources of support.

These findings cannot be generalized because NAMI was the main recruitment source, respondents were primarily college-educated siblings, and almost all respondents were Caucasian. However, these siblings can be considered "best case" examples of the needs of siblings and potential future caregivers.

Before development of the FLIISS, there were no comprehensive measures to assess the breadth and depth of coping strategies and mental health services helpful to siblings of persons with schizophrenia. These quantitative measures allowed siblings to prioritize needs and services, and the large sample strengthened the reliability of the findings. Siblings identified services for the ill family member, including symptom control, adequate housing, and long-term planning, as more important than specific services for themselves. However, in the future, siblings will be faced with the responsibility of being the primary caregiver. This role, combined with dwindling community services, will increase stress for siblings.

The challenge is clear—providers must advocate for adequate services for the ill person, include siblings in long-term planning, and help educate siblings about the illness. Additionally, providers should encourage siblings to seek social support from family, friends, and organizations such as NAMI or religious groups. Decreased stress can not only increase quality of life for siblings of persons with schizophrenia but also help siblings be better prepared to manage the demands of the illness.

This research was supported by the Nellie Ball Trust Research Fund.

The authors report no competing interests.

Ms. Friedrich and Ms. Lively are affiliated with the College of Nursing, University of Iowa, 50 Newton Rd., Iowa City, IA 52242 (e-mail: [email protected]). Dr. Rubenstein is with the Department of Epidemiology, College of Public Health, University of Iowa, Iowa City.