Parents of mentally ill adult children living at home: rewards of caregiving.

Author:Schwartz, Chaya
Position::Statistical Data Included
 
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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.

EARLIER STUDIES OF CAREGIVING BURDEN

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).

CAREGIVING REWARDS IN PREVIOUS STUDIES

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. Higher levels of child contributions to the family are associated with lower levels of mental pain or subjective burden (Greenberg).

Because caregiving for a child with a chronic mental illness is a stressful situation, this study used a general stress framework. The model used is based on Lazarus and Folkman's (1984) stress-appraisal model and on Biegel and Schulz's (1999) work. The primary stressors included the severity of the child's mental illness and the amount of care performed by the parent--the objective burden. The perceived stress by the parent or his or her appraisal of the burden is the subjective burden. When the objective burden is high but the parent does not appraise it as burdensome, it may lead to positive responses such as seeing the child as more supportive or caregiving as more gratifying.

This study measured the positive outcomes of stress or what Folkman and Moskowitz (2000) called "positive reappraisal" and in this study is referred to as caregiving rewards. There is growing interest in positive aspects of the stress process, including positive outcomes (Folkman & Moskowitz). However, the research is still in its earliest stages, and there are relatively few investigations into the rewards of caregiving. This study was designed to investigate two aspects of the subject:

  1. the positive outcomes of caregiving--the extent to which parents perceive their ill child as providing instrumental and emotional support (child's contributions to the family), and the extent to which parents perceive their caregiving experience as psychologically and emotionally rewarding (gratifications)

  2. the contribution of the primary stressors (objective burden and the severity of the mental illness) and the perceived stress (subjective burden) to caregiving rewards.

METHOD

Participants

This study was conducted in Israel in 1999 with 93 Jewish parents caring for an adult child with a mental illness who was living with them at home (only one parent of a couple was interviewed). The participating parents were recruited from eight self-help support groups for parents of adults with mental illness in eight towns in Israel (104 parents in all). Of the 93 participating parents, 80 (86 percent) were mothers and 13 (14 percent) were fathers. The age of 80 percent of the parents ranged from 50 to 70 years with a mean of 58.2 years (SD = 8.2). Seventy-five percent had 12 or more years of education with a mean of 11.9 years (SD = 7.8). Because the sample consisted primarily of older mothers, 52 percent of the participants were unemployed and the remainder worked part-time. Sixty-six percent rated their own state of health from "good" to "excellent."

All the cared for children were age 18 or older, had severe mental illness (schizophrenia or a schizoaffective disorder according to the ICD-10...

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