Aging Women and Their Children with Chronic Disabilities: Perceptions of Sibling Involvement and Effects on Well-Being

Abstract

AGING WOMEN AND THEIR CHILDREN WITH CHRONIC DISABILITIES PERCEPTIONS OF SIBLING INVOLVEMENT AND EFFECTS ON WELL-BEING* Rachel A. Pruchno, Julie Hicks Patrick, and Christopher J. Burant** The functional and affective relationships characterizing disabled and nondisabled children were described by 838 aging mothers of children with chronic disabilities. Mothers indicated that their nondisabled offspring provided very little functional assistance to their siblings with chronic disabilities, but that affective relationships between siblings were characterized by strong, close ties. Predictors of the affective relationship between siblings, functional assistance provided by nondisabled siblings to their siblings with disability, and the likelihood that a nondisabled child would be a future caregiver to the child with a disability were examined. Implications for practice are discussed. As parents of children with chronic disabilities age and become increasingly frail, many may not be able to continue to provide the support needed by their children with disabilities. In times of crisis, and out of necessity, it is not uncommon for nondisabled siblings to come to the aid of their aging parents and siblings with chronic disabilities. Yet, relatively little is known about the roles of adults whose siblings have chronic disabilities or the effects that this involvement has on the well-being of their aging mothers. In order to enable professionals in the fields of aging, developmental disabilities, and mental health to understand the role of siblings, this article, based on reports from aging women with children who have chronic disabilities, has three goals. These include an examination of the ways in which nondisabled people are involved in the lives of their siblings who have chronic disabilities, an exploration of the predictors of current and future sibling involvement, and an investigation of the extent to which present and future sibling involvement affect the well-being of aging mothers. The sibling bond occupies a unique position among family relationships. It has the potential to last longer than any other human relationship; it includes people who share a common genetic, cultural, and experiential heritage; and, because it is an ascribed rather than an achieved role, it remains part of an individual's identity regardless of changes in marital status, place of residence, or financial well-being (Cicirelli, 1982; Dunn & Kendrick, 1982). Sibling relationships that include people with chronic disabilities are especially important for two reasons. First, it is generally nondisabled siblings who serve as resources both to their siblings with disabilities and to their aging parents. Second, it is nondisabled siblings who often are identified by their aging parents as the people most likely to assume primary responsibility for their siblings with disabilities when parents are no longer able to fill this role (Griffiths & Unger, 1994). SIBLING RELATIONSHIPS IN THE CONTEXT OF CHRONIC DISABILITIES There is good evidence that many adult siblings of persons with chronic disabilities continue to be emotionally and instrumentally involved with their sibling with a disability throughout the lifespan. In a study of the sibling relationships of adults with mild retardation, Zetlin (1986) identified five kinds of relationships ranging from those in which siblings assumed surrogate parent roles to those in which virtually no contact was maintained and those characterized by acrimony. An earlier study by Cleveland and Miller (1977) of older siblings of institutionalized adults with profound or severe developmental disabilities found that most of the respondents reported adapting positively to having a sibling with a developmental disability. In addition to positive relationships with their siblings with development disabilities, most had good relationships with their other nondisabled siblings, good school experiences, and most reported that their adult life commitments had not been affected by having a sibling with a developmental disability. …