Academic journal article Health and Social Work

Parents of Mentally Ill Adult Children Living at Home: Rewards of Caregiving

Academic journal article Health and Social Work

Parents of Mentally Ill Adult Children Living at Home: Rewards of Caregiving

Article excerpt

The purpose of this study was to explore the relatively neglected positive potentials of caregiving experiences by parents caring for an adult child with mental illness at home. Many adults with severe mental disorders, who in past generations would have been institutionalized, now live with their families. Many, if not most, earlier studies focused on the burden of caregiving to the caregiver (Crotty & Kulys, 1986; Kuipers, 1993; Schene, Tessler, & Gamache, 1994). Relatively little is known about what adult children with mental illness can contribute to their families (Bulger, Wandersman, & Goldman, 1993; Greenberg, 1995). Instruments for assessing the gratifications of caregiving are new and have only partially succeeded in identifying the variables involved.


The concept of burden refers to the practical difficulties and mental pain that are the lot of the caregiver. The practical hardships--what researchers term the "objective burden"--are the assistance in and supervision of daily activities the parent must provide because the child cannot care for himself or herself or because hostile or unpredictable behavior must be monitored (Brady, Goldman, & Wandersman, 1994; Bulger et al., 1993; Jones, Roth, & Jones, 1995). The mental pain--"the subjective burden"--includes the gamut of negative emotional reactions to caregiving--stress, tension, anger, worry, sadness, and feelings of guilt and shame (Brady et al., 1994; Bulger et al.).

Research findings on the relation between objective and subjective burdens have been contradictory. A few studies found that a high level of objective burden relates to a high level of subjective burden (Bulger et al., 1993), whereas other studies found that a higher objective burden was not necessarily associated with a high level of subjective burden (Jones et al., 1995). Caregivers' subjective perceptions of burden have been found to vary with gender, age, education, and socioeconomic status (Carpentier, Lesage, Goulet, Lalonde, & Renaud, 1992; Cook, Lefley, Pickett, & Cohler, 1994; Winefield & Harvey, 1994). Caregivers' subjective perceptions also have been found to vary with characteristics of the adult child with mental illness, such as age, gender, or psychiatric symptoms (Greenberg, 1995). The more severe the child's psychiatric symptoms, the heavier the caregiver perceived objective and subjective burdens (Grad & Sainsbury, 1968). Parents of older children have reported less subjective burden (Bulger et al.), and parents of daughters have experienced less objective and subjective burdens (McGlashan & Bardenstein, 1990).


Few studies have focused on the rewards of caregiving for a child with a mental illness. Some parents describe a feeling of intimacy with their ill child, a sense of mutual respect, a willingness to accept different opinions and criticism, and an ability to enjoy each other's company (Greenberg, Greenley, & Benedict, 1994). Caregiving can provide parents with a sense of pride and satisfaction at being able to cope with behavioral crises and difficulties and at effectively performing their parental duty to the utmost (Pickett, Cook, Cohler, & Solomon, 1997; Winefield & Harvey, 1994). Caring for their mentally ill child has led some parents to personal growth and a deepening sense of self-awareness. They felt they had become stronger, more tolerant, less judgmental, more sensitive, and empathetic toward others and were more assertive in their demands on welfare services. These perceived benefits and feelings of personal accomplishment have been termed by researchers as the subjective contributions of caregiving or gratifications (Greenberg et al., 1994).

Most parent caregivers stated that their child provided some practical help around the house, as well as support, information on family and friends, and keeping them company, elements that Greenberg (1995) has termed the child's contributions to the family. …

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