Parenting a child with a serious mental illness, such as schizophrenia and bipolar disorder, presents major lifelong challenges. To be sure, parents may provide decades of extended caregiving, especially during times when their adult son or daughter’s debilitating mental health symptoms produce ongoing obstacles to social and occupational functioning and independent living(1
). As parents age, they confront the dual stressor of having to cope with the challenges of having an adult child with serious mental illness while dealing with their own aging-related changes in health, such as physical disability and greater vulnerability to illness (3
). In addition, older age is a stage in the life course when parents become increasingly concerned about the future care of their son or daughter with mental illness (6
Prior studies have long focused on the substantial toll of caregiving (7
). This body of research suggests that older parents of adults with serious mental illness experience, on average, high levels of burden and elevated health and mental health symptoms (10
). The impact of caring for an adult child with serious mental illness is often framed in terms of subjective burden, which is conceptualized as the range of negative emotional reactions to caregiving (12
While past research has mainly concentrated on the negative impact of parenting an adult child with serious mental illness in later-life, a more balanced perspective is one that recognizes the potential for personal growth associated with the caregiving role. Indeed, while later stages of the life course may involve unprecedented difficulties for parents of adults with serious mental illness, later-life may also present unique opportunities for positive parenting experiences, including personal growth and a greater awareness of family strengths (14
In contrast to burden, personal gains associated with caregiving correspond to the degree to which family members experience positive transformations as a result of coping with their relative’s mental illness (17
). For instance, caring for a child with mental illness has led some parents to experience a deepening sense of self-awareness and inner strength (16
). Parental caregivers have reported becoming stronger, more tolerant, less judgmental, and more sensitive and empathetic toward others (18
). In addition to targeting caregiver distress, interventions have aimed to enhance caregiving experiences (19
). Understanding the family’s experience of personal gains and the role of the adult with mental illness in contributing to these gains has taken on a new significance with efforts to transform the mental health system of care based on recovery principles.
A number of studies have focused on the relationship between the stressors of caregiving and parental well-being (20
). One of the major challenges for parents of adults with serious mental illness is providing ongoing support with activities of daily living, often referred to as objective caregiving burden. The research on the relationship between the objective burden associated with providing hands-on care and supervision, and subjective burden is inconclusive. Whereas some researchers report that when persons with mental illness have a greater need for help with activities of daily living their caregivers report higher levels of subjective burden (22
), others report only a weak relationship between the amount of assistance or supervision needed by the family member with mental illness and the caregiver’s experience of subjective burden (23
). Living with an adult child with serious mental illness may be especially challenging for older parents. In a longitudinal study of the end of coresident caregiving among aging mothers of adults with serious mental illness, Seltzer and colleagues (9
) found that stress in the caregiving context is predictive of the end of coresidence and that mothers reported significantly lower levels of subjective burden following the adult child’s move out of the house.
Whereas subjective burden tends to be most associated with the demands of caregiving, personal gains appear to be associated with parental resources, in particular their level of social support. Indeed, research has begun to raise awareness of supportive resources that promote positive family experiences in serious mental illness (15
). Family members of persons with serious mental illness have demonstrated a pattern of coping in which they first turn to other family members and close friends for support, and then seek help from others with similar experiences (26
). In addition to the benefits derived from confiding in a family member or close friend, seeking support from others who are facing similar challenges can foster mutually supportive environments that promote mastery and growth. Indeed, support group participation is positively associated with caregiving gains among families that care for a member with mental illness (17
). Furthermore, adults with serious mental illness can themselves be a source of support to aging parents. Greenberg (27
) found that when adults with schizophrenia are able to reciprocate through the provision of instrumental and expressive support, parents experienced less subjective burden.
In the present study, we first examine the factors associated with personal gains among older parents of adults with serious mental illness. We then examine the factors predictive of subjective burden, using the same sample of parents to examine both outcomes. Based on prior literature suggesting that personal gains are associated with parental resources (i.e., level of social support), whereas burden tends to be associated with stressors in the caregiving context, we hypothesize that parental stressors (e.g., child’s poorer health, greater parental care provided, and parent-child coresidence) will be most strongly associated with parental feelings of subjective burden, while parental resources (e.g., assistance from the child to parent, availability of confidants, and support group membership) will be most strongly related to personal gains, controlling for background characteristics (e.g., parent’s age, gender, and education, and child’s gender).