Caregiver Burden: Differentiating the Content and Consequences of Family Caregiving

Families of persons with mental illness witness the devastating effects of this disorder on their ill relative and struggle to manage their situation in a society that provides little assistance. During the past 4 decades, the characterization of these families has changed from causal agents who precipitate or exacerbate the illness through disordered communication: (Mishler. & Waxler, 1965) or an emotionally charged family environment (Vaughn & Leff, 1976) to the bearers of burden who ate covictims of the biochemical disease that disables their ill relative (Hatfield & Lefley, 1987). Regardless. of the validity of the biomedical model of mental illness, it has provided legitimacy to the claim that families are not responsible for causing the illness, although they are often responsible for caring for the person with the illness (Reinhard, 1994b). This changing paradigm of the family's experience of mental illness has led to a growing literature on family burden (Chafetz & Barnes, 1989; Gubman & Tessler, 1987; Maurin & Boyd, 1990) but to little empirical investigation of factors that might explain why some family members manage their situation with less burden than others. A lack of conceptual clarity in identifying the constituents of burden bas hampered this investigation. Some researchers define burden as families' care and supervisory tasks and their feelings about those tasks (Tessler, Fisher, & Gamache, 1991), while others include the ill relative's disruptive behaviors (Cook & Pickett, 1987) and specific concerns like financial strain, as well as the generalized responses of physical and mental distress (Platt, Weyman, Hirsch, 1983). While researchers agree that burden is a multidimensional concept (Schene, Tessler, & Gamache, 1994), it is essential to distinguish the components of burden in order to predict this concept. The purpose of the present study is to examine the relationships among potential predictors of burden within a conception of burden as the objective and subjective consequences of providing ongoing care to a mentally ill relative (Reinhard, Gubman, Horwitz, & Minsky, 1994). Within a stress-coping framework, we distinguish potential stressors associated with the content of caregiving, particularly dealing with disruptive behaviors and providing concrete and emotional assistance, from the specific consequences of caregiving, such as financial strain and worry about the future. We consider only the latter to indicate burden; we regard the former as predictors of the amount of caregiver burden. This model separates what caregivers do from the stressful consequences of their caregiving activities. This conceptual distinction is essential in order to investigate the meaning of caregiving for different people. For example, cultural and ethnic (Guarnaccia, Parra, Deschamps, Milstein, & Argiles, 1992), gender (Noh & Turner, 1987), and role (Horwitz, 1993) differences in the meaning of caregiving are becoming evident. Groups that consider caregiving to be within the bounds of expected behavior--for example, minorities, women, and parents--may face less burden from the same level of caregiving activities than groups such as Whites, men, and siblings. By separating caregiving actions from reports of household disruption and grief, we can investigate how the same level of caregiving activities among: groups that differ in culture, demographic characteristics, arid role relationships leads to different levels of burden. Such investigation is fundamental to developing effective interventions, which must incorporate the meaning of caregiving to the persons undergoing change. PREDICTORS OF BURDEN Based on previous theoretical and empirical findings (Horwitz & Reinhard, 1995; Reinhard, 1994b), this study examines the relationship between the content and consequences of caregiving, and the extent to which selected factors predict burden. …