Responsibility and Adjustment in Siblings of Children with Disabilities:  Update and Review

by Victoria B. Damiani

Abstract

This article provides a review of research addressing the role of home and child care responsibility in the psychological adjustment of siblings of children with disabilities, as defined by special education law. Early classic studies are reviewed followed by more recent workon gender and SES of the sibling, the relationship of sibling responsibility to adjustment, and the level of home and child care responsibility for siblings with and without a brother/sister who has a disability. The author concludes that neither the existence of higher levels of responsibility for siblings of children with disabilities nor the classification of responsibility as a psychological risk factor have been established. In studies that included comparison groups, girls had more home and child care responsibility than boys, whether or not there was a child with a disability in the home. However, the sibling's worry about future responsibility and cognitions about the responsibility that does exist are worthy of further exploration. Clinicians are advised to consider the issue of responsibility and how it is viewed by family members in work with families of children who have disabilities, and to be aware of cultural and religious characteristics of the family as they pertain to the issue of family responsibility for its members.

THE LAST TWENTY years have witnessed a shift in emphasis by the mental health community away from individual diagnosis only to a systems approach. This construct requires assessment of reciprocal interactions between any one person and the groups of which they are a part (Bronfenbrenner, 1986; Hobbs, 1975; Mallory, 1986; Minuchin, 1974). With regard to families of exceptional children, earlier emphasis was on the needs and characteristics of mothers (Birenbaum, 1971; D'Arcy, 1968), followed by fathers (Meyer, 1986; Vadasy, Fewell, Greenberg, Desmond, & Meyer, 1986), and finally on the psychological adjustment of siblings of children with special needs (Breslau, 1982; Gold, 1993; Hannah & Midlarsky, 1985; Harris, 1994; Lobato, Barbour; Hall & Miller, 1987; Powell & Gallagher, 1993; Seligman & Darling, 1989, 1997).
    Although this trend is quite clear, it is still possible to point to early pioneers who showed concern for sibling adjustment in the late fifties and early sixties, even before the deinstitutionalization and special education movements had begun (Farber, 1959,1960, 1963; Graliker,Fishler, & Koch, 1962; Holt, 1958). One of the issues addressed in these early landmark studies on the psychological adjustment of siblings of children with disabilities was the degree of the sibling's home and child care responsibility and its effect on his or her well-being. Sibling responsibility continues to draw the attention of those working with families of exceptional children and has been highlighted by societal emphasis on gender roles, since many early researchers suggested female siblings were at higher risk for mental health problems (Cleveland & Miller, 1977; Farber, 1959, 1960, 1963; Gath, 1974, 1978; Grossman, 1972).
    Another factor leading to increased emphasis on responsibility for siblings of children with disabilities is the amount of attention it is given in the self-report literature of families of exceptional children (Featherstone, 1980; Powell & Gallagher, 1993; Sullivan, 1979; Turnbull & Turnbull, 1985). Home and child care responsibility is identified as both a source of frustration and fatigue, as well as a character builder for family members. In a review of professional literature on siblings of children with disabilities published between 1981 and 1989, Damiani (1993) found responsibility to be the second most often mentioned factor related to psychological adjustment of the nondisabled sibling, with gender of the nondisabled sibling cited most often. However, she found the connection between responsibility adjustment to be more often assumed than databased in these studies.
    Responsibility has been a point of discussion in the literature on families of exceptional children for more than twenty-five years, and a significant amount of information about the characteristics of siblings of children with disabilities is emerging. However, an ERIC and psycLIT search of journal articles published between 1987 and 1997 did not reveal any review fully dedicated to the role of responsibility in the lives of siblings of children with disabilities. The purpose of this article is to provide such a review of the literature, with the intent of making intervention recommendations based on common themes that emerged.

Procedure for Review

    Forty-two articles and books published between 1972 and 1997 regarding families of children with disabilities, which included home and child care responsibility of the sibling without a disability as a component part, were part of this review. Since the categorical system of special education law is one known to most clinicians and makes families of children with special needs most obvious to practitioners, it was the one utilized to identify the children considered to have disabilities. Another reason for the use of that identification system was the fact that the family service delivery is only just now emerging for school mental health practitioners (PL99-457), while it has been in consistent use in other mental health agencies. This article is intended, in part, to alert those working with families who have children receiving special education services, to the needs of siblings. The outcome of the identification system is to limit the use of the term "disability" to those whose special needs directly affect their ability to learn or the method by which they should be taught. For this review then, disability means retardation, autism, learning disability, vision or hearing problems, or multiple disabilities. Reviews addressing families where special needs were related primarily to a child's physical illness, or to the disability of an adult member, were not included.
    There were several early and classic studies published before 1972 that did not measure sibling responsibility per se, but the researchers' interpretation of findings regarding family characteristics is relevant to the studies that followed. Therefore, these classic studies were reviewed for the background they provided. Early in the process, it became apparent that a clear definition of responsibility and an adequate measure of the construct were difficulties in this area of study. Therefore, it would have been counterproductive to exclude studies that were less than exemplary in this regard. To provide an adequate representation of this literature base, studies were included if responsibility played an important role, even if it was unclearly defined or inconsistently measured.

Early Studies: Responsibility Emerges as an Issue
    In a 1959 study of siblings of children with IQs below 50 in 240 white, intact families, Farber found that mothers rated sisters higher than brothers on personality traits such as angry, irritable, moody, and depressed. In a 1960 study, he found that mothers rated sisters who interacted frequently with the children who had retardation higher on those traits than sisters who interacted less frequently. He attributed these results to the sisters' increased responsibility for housework and child care. Grossman (1972) studied college age brothers and sisters of children with retardation and found that females, especially those of lower Socio-economic standing (SES), were more likely to be involved in care of the child with a disability. The researcher concluded that heavy responsibility may be detrimental to the nondisabled sibling, especially sisters. Cleveland and Miller (1977) found older, adult sisters of institutionalized individuals with retardation to report more responsibility for the sibling with a disability and to be at more risk for adjustment problems than brothers.
    All of these early studies relied on participant reports of responsibility and did not incorporate any measure of the construct. The difficulties of sisters were assumed to be related to child care and home responsibility, since females more often performed those duties. To make this assumption acceptable, one would have to demonstrate first that female siblings of children with disabilities did indeed have more responsibility than brothers in similar families and siblings in families without a disabled member. Secondly, one would have to demonstrate a correlation between responsibility and difficulties in psychological adjustment. Later studies explored these connections.

Gender and Responsibility
    In a comparison of the responsibility levels of siblings of children with hearing impairment and siblings of children without disabilities, Schwirian (1976) found that sisters of the children with hearing impairments had significantly more child care and home responsibility than brothers, as rated by their mothers on a researcher-made rating scale. Lobato, et al. (1987) found in their study of responsibilities of preschool children with and without exceptional siblings, that mothers rated sisters of children with disabilities as having the highest degree of home and child care responsibilities, but the difference between them and brothers, and between them and the control group of children without siblings who were disabled, was not significant.
    Cuskelly and Gunn (1993) found no significant gender difference in sibling household responsibility levels based on maternal reports for siblings six to thirteen years of age. McHale and Gamble (1987), Stoneman, Brody, Davis, and Crapps (1987, 1988), Gold (1993), and Damiani (1993) all compared responsibility of siblings in families with and without a child with a disability and found the girls in both groups to have significantly more responsibility than boys.
    Thus, there are indications that girls have more home and child care responsibility than boys, in general, but not as a result of having a sibling with a disability. Stoneman, et al. (1987, 1988) and Damiani (1993) did find sisters of children with retardation to have more responsibility than sisters of children without a disability and brothers in either group. This finding was not supported by Gold (1993), however, where the child with the disability had autism.
    Stoneman, et al. (1988) found brothers of children with retardation to babysit more often than their counterparts without siblings with disabilities and, in fact, to babysit as often as sisters without siblings with disabilities. This represents some departure from the lesser involvement found for brothers in earlier studies (Grossman, 1972) and may suggest some change in gender roles over time.
    An important contribution of these later researchers is their attempt to define and measure responsibility. Schwirian (1976) utilized a rating scale of household tasks that was modified and used by Lobato, et al. (1987). McHale and Gamble (1987) interviewed both mothers and siblings regarding the sibling's activities during a given day. Gold (1993) used a more specific rating scale separating sibling responsibilities into "domestic work" and "caregiving work."

Responsibility: Children with and without Siblings Who Have Disabilities

    Do siblings of children with a disability actually have more home and child care responsibility than siblings in the general population? While intuitively one might assume that they do, in fact, results of studies in this regard have been mixed. In interviews with nine-to thirteen-year-old siblings of children who had what the authors identify as "severe handicaps," Wilson, Blacher and Baker (1989) found that all but one of the twenty-four reported two or more types of caretaking activity, with teaching being the most frequent one, followed by dressing. All of the children with disabilities were younger siblings. Because there was no comparison group, however, it is not possible to determine if these reports are higher than they would be for the general population of older brothers and sisters. McHale and Gamble (1987) found brothers and sisters of children with retardation reporting more caregiving responsibilities, and they did have a comparison group in their study.
    In interviews with mothers of children with Down's syndrome, Cuskelly and Gunn (1993) found no difference in reports of responsibility levels for siblings between the ages of six and thirteen and a comparison group of siblings with nondisabled brothers and sisters. Damiani (1993) compared responsibility levels of nine-to fifteen-year-old siblings of children with retardation to a comparison group of siblings with nondisabled brothers and sisters and also found no significant differences based on parental completion of a researcher-devised responsibility scale. Gold (1993) found that brothers of children with autism actually did less domestic work than siblings of children without disabilities.
    In a British study, Gath and Gumley (1987) did not find brothers and sisters of children with Down's syndrome to have more domestic responsibility than siblings of nondisabled children. They found that, in general, mothers did most of the domestic work in families with children who had disabilities. Stoneman, Brody, Davis, Crapps, and Malone (1991) found a difference with regard to child care and home responsibility, with younger siblings of children with retardation having more child, but not home care, responsibility.

Economic Issues and Responsibility
    There is more recent evidence than Grossman's study to suggest that financial status may be an influential variable in the degree of responsibility for the nondisabled sibling. Stoneman, et al. (1988, 1991) found that, in families of exceptional children with higher incomes, siblings of children with disabilities participated in more activities outside the home than they did in lower-income families. Wilson, et al. (1989) found siblings of low income families reporting more in-home responsibility. Stoneman, et al. (1988) and Gold (1993) both found higher levels of responsibility for siblings in families with lower education levels.

Responsibility and Sibling Self-Reports
    While the existence of more home and child care responsibility for siblings of children with disabilities is not firmly established, self-report literature consistently points to the presence of responsibility in the thoughts of siblings (Powell & Gallagher, 1993). Statements of siblings of children with autism show some emphasizing mostly negative reactions, "In my case, stress has been an everyday occurrence during the past twelve years" (Sullivan, 1979,p.295), and others including reactions that could be considered self-enhancing, "Sometimes I'm the only one in the world who can teach him something, and I feel so proud" (Sullivan, 1979, p.293). McHale and Gamble (1987) found siblings of children with disabilities reporting significantly more thoughts related to the health and well-being of their brothers and sisters than a comparison group whose siblings did not have a disability. There are also indications that nondisabled siblings worry about what will happen to the child with a disability when parents are no longer able to take care of him or her (Crnic & Leconte, 1986; McCullough, 1981; Seligman & Darling, 1989).

Responsibility and Psychological Adjustment
    Some of the reason for concern about the effect of responsibility on the psychological adjustment of brothers and sisters of children with disabilities stems from a literature base that alerts us to the possibility of these difficulties in their mothers. In a comparison study of mothers of children with and without disabilities, Breslau, Staruch, and Mortimer (1982) found mothers of children with disabilities to have a higher mean score on a depression-anxiety scale. Level of psychological difficulty was positively correlated with dependency of the child with the disability. Bristol, Gallagher, and Schopler (1988) found mothers of boys with developmental disabilities to be at somewhat more risk for depression than fathers and parents of nondisabled children. These mothers were found to have significantly more child care and household responsibility than fathers, even when the mothers were employed outside the home.
    McHale and Gamble (1987) attempted to assess the relationship between increased time spent in caretaking and household tasks and by rating on measures of depression, anxiety, self-esteem, and conduct problems for siblings of children with disabilities. A significant positive correlation was found between amount of time spent in caretaking and level of anxiety. Neither time spent in caregiving or that spent on other household tasks was found to correlate with any of the other measures of adjustment. Cuskelly and Gunn (1993) found an inverse relationship between degree of conduct problems and household responsibilities among sisters of children with Down's syndrome. Damiani (1993) found an insignificant and negative relationship between responsibility levels and adjustment difficulties in siblings of brothers and sisters with retardation, as measured by maternal ratings on the Achenbach Child Behavior Checklist. Stoneman, et al. (1988, 1991) looked at the level of conflict between siblings and involvement in activity outside the home, both of which could be considered to be related to psychological adjustment. They found increased child care responsibilities for nondisabled siblings to be related to increased conflict in the sibling relationship. For siblings of children with retardation, increased family responsibility correlated with decreased time with friends and time spent in out-of-home activity. These findings were not replicated in a later study, however (Stoneman, et al., 1991). Thus, a positive relationship between family responsibilities and difficulties in psychological adjustment has not been firmly established for siblings of children with disabilities.

Problems in the Study of Responsibility

    Interpretation of studies of sibling responsibility in families of a child with a disability seems to have been hampered by several methodological complications. One is inconsistency in measurement of the concept. Checklists, observations, parental and self reports, as well as interviews, have all been utilized to assess the degree of responsibility for siblings. No two studies by different researchers reviewed for this article utilized the same method. This is likely to be due in part to the unavailability of a psychometrically sound instrument for measuring home and child care responsibility for children. (This may be remedied by The Family Helping Inventory [Midlarsky & Hannah, 1995], for which promising data are emerging.) Adaptive behavior scales may be somewhat useful in this regard but were designed for a different purpose. Schwirian (1976) and Damiani (1993) both utilized researcher developed responsibility rating scales in their studies, but thorough validity and reliability data are not available on either one. Studies that utilize observation or interview for data gathering are difficult to duplicate across settings and so interfere with replication.
    There also is disagreement among professionals regarding whether the diagnosis of the sibling with a disability is a factor in sibling adjustment. Some argue that sibling reactions are similar regardless of specific diagnosis of the child with a disability (Lobato, 1990). Others report there is growing evidence that different symptomatology relates to differences in caretaking levels and therefore indirectly to sibling reaction (Donovan, 1985; Stoneman, et al., 1988). Therefore, the body of literature on siblings is a mixture with some studies combining exceptionalities and others not. This makes comparison across studies difficult.
    Another significant weakness in this literature base related to siblings of children with disabilities is the absence of comparison groups identified by religion or cultural background. Mental health practitioners are becoming increasingly aware of the role these factors play in family dynamics (Huang & Gibbs, 1992; McGoldrick, Pearce, & Giordano, 1982; Mosly-Howard, 1995; Zea, Quezada, & Belgrave, 1994). More must be done to acknowledge differences among cultural groups, especially with regard to expectations families have of nondisabled siblings for future caretaking of their brother or sister.
    Finally, the sibling responsibility literature for families of children with disabilities seems to suffer from a lack of knowledge on the impact of responsibility on children, in general. How much is too much? How do we know? Is child care a psychologically more costly responsibility than domestic chores? The knowledge base and theoretical formulations here are quite thin and could lead to unwarranted assumptions about the meaning of responsibility in the lives of brothers and sisters of children with disabilities.

Conclusions

    The most consistent factor to emerge from this review is that girls continue to have more home and child care responsiblities than boys, whether there is a child with a disability in the home or not. In this sense, early researchers were quite accurate in their association of gender with responsibility in families of exceptional children. Whether they were accurate in attributing the documented adverse reactions in sisters of children with a disability to responsibility remains questionable, especially since brothers have difficulties of their own (Breslau, 1982 ; Gold, 1993). It also has not been firmly established that siblings of children with disabilities have more child care and home responsibility than siblings of nondisabled children. However, in situations in which home and child care responsibility is heavy, whether due to the severity of the sibling's disability, illness or limitations of parents, or some other reason, there is reason to believe that the burden is more likely to fall on the girls than on the boys in the family. Economic hardship is likely to increase the potential for family responsibility to fall on sisters. There is some indication of a movement more recently toward an increase in child care, but not home care, responsibility for brothers of exceptional children, as opposed to the levels seen in earlier studies. But this also is not firmly established. Another consistent theme to emerge from this literature is the presence of worry about the child with a disability among nondisabled siblings. This worry seems to include concerns about future caretaking roles when parents are no longer available. The concern is shared by parents (Powell & Gallagher, 1993) and perhaps passed on by parents. To the extent that psychological difficulties related to responsibility exist at all for siblings of children with disabilities, it may be that this worry, and not responsibility itself, leads to the risk. This hypothesis makes sense in light of the symptoms of anxiety and depression that have been found in some siblings and their likely relationship to chronic worry. Given funding issues, complicated school-to-work transition plans, and limited resources for community living options, these concerns related to the future are probably reality based. Seligman and Darling (1989) recommend that the child's feelings about responsibility, or expectations of assuming responsibility in the future, should be a major focus for professionals working with siblings. Finally, few of these conclusions can be generalized across cultural groups. Many of the studies above do not address the cultural issue at all. Those that do show representation are primarily of Anglo Americans and have no mention of religion.

Recommendations for Further Study

    The development of a psychometrically sound child responsibility scale, or extensive validity and reliability studies of those in existence, would be a significant contribution to the sibling literature. An instrument that includes separate ratings for caregiving and domestic responsibility can build on the work of researchers already looking beyond responsibility, in general, to specific tasks and their relationship to gender and adjustment (Gold, 1993; Stoneman, et al., 1987, 1988; Wilson, et al., 1989).
    Recent work suggesting a strong relationship between cognition, emotion, and behavior (Reinecke, Dattilio, & Freeman,1996) suggests that, not only the child's degree of responsibility, but how the child views the responsibility, would be important information to gather in all instances. Perhaps the child's feelings of being helpful and influential may reduce the negative impact of even heavier levels of responsibility. Feelings of being burdened and without control over one's contribution to the household could obviously be more problematic. Worry, which often relates more to one's interpretation of events, rather than the events themselves, could be a drain on the psychological strength of siblings. Cognitions regarding the presence of a child with a disability in the family are likely to be directly related to religion and cultural background and more studies seeking involvement and identification of a variety of groups are needed.
    Finally, Stoneman (1989) has suggested several guidelines for use in designing research with families of exceptional children that are intended to limit confounding variables of mixed disabilities and differing levels of symptomatology, as well as birth order/gender of siblings and the child with the disability. This should lead to clearer data and studies that are easier to replicate.

Implications for Educators and Cliniclans
    Teachers and clinicians must find a medium ground between an overestimation of the negative impact of a child with a disability on the family and failure to provide needed service. Knowledge about how responsibility is distributed among family members is important to understanding the dynamics of the family and to planning interventions. Interventions almost always mean increased responsibility for someone, at least in the short term. They could have hidden impact if the responsibility pattern of the family is not known.
    Future responsibility, whether real or imagined, can be a factor in the cognitions, and therefore the emotional reactions, of family members. While parental views of the future in families of exceptional children have been considered, this issue has been given less attention with siblings. At the very least, clinicians should be aware of what has been communicated to siblings in this regard. We must listen to siblings to learn more about their interpretation of their role in the family, both present and future. This interpretation is likely to evolve, at least in part, from family religion and cultural background. Family intervention without regard to cultural and religious expectations of the family is likely to lead to alienation of the family the practitioner seeks to support.
    The recent movement within schools to foster school-community relationships and to make family support a part of the program for a child with special needs, make this literature base timely and necessary. Specifically, in the development of the family support plans required by PL99-457, sibling needs should be assessed and addressed. Mental health practitioners who work with families of exceptional children should be aware of support programs developed specifically for siblings such as
Sibshops: Workshops for Siblings of Children with Special Needs (Meyer & Vadasy, 1994) and Brothers, Sisters, and Special Needs (Lobato, 1990).

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Victorla B. Damiani is assistant professor at Indiana Universitv of Pennsylvania, 246 CStouffer Hall, Indiana, PA, 15705

Original manuscript received: March 23, 1998

Accepted with revision: July 16, 1998

Revision received: October 2, 1998