UMaine study illuminates grief of parents of children with serious mental illness 

Caring for a child with a serious mental illness, one which substantially impairs or limits a person’s major life activity, can lead to a range of emotions for parents and caregivers, from anxiety and shame to guilt and grief. The stress of the task is compounded if there is also a threat of violence from the child with serious mental illness. 

A new University of Maine-led study shows that parents raising children with serious mental illness and violent tendencies experience and express grief similar to those of children who have died, which informs how practitioners can help these caregivers cope with the stress. 

Karyn Sporer, associate professor of sociology at UMaine, led a study that conducted in-depth interviews with 32 parents of young and adult children with serious mental illness and violent tendencies. The transcripts of the interviews were analyzed for shared themes and ideas across the parents studied.

The results showed that the subjects expressed grief and loss similar to that of parents whose children have died, though parents of children with serious mental illness and violent tendencies lack the closure and community support that often comes with the loss of a child. Since their loss is symbolic and the child is still physically present and needs care, parents are more likely to cope with their stress by reconstructing the identity of their child rather than their identity as parents, which is more common for parents of deceased children. This reconstruction ranged from expressing the belief that the expression of mental illness is not truly their child, to viewing their child as a stranger or non-existent. 

“Our research highlights the pervasive strains and stigma associated with loving and caring for a child who suffers from serious mental illness. For these parents in particular, they are not only mothers and fathers in mourning, but they are also survivors of domestic violence,” Sporer says.

The study helps illuminate the grief experienced by parents in this uniquely stressful situation and informs practitioners helping parents who are in this caregiving role. The researchers recommend that, in light of these results, therapists encourage “meaning-making” and “both/and thinking,” which encourages acceptance of the tough emotions, celebrating what remains of their loved one and allowing for mourning of the connections or relationships that have been lost. 

“The relationship between mental illness and violence is a complicated one. I hope this work illuminates how compassion and courage is needed to fight the stigma of mental illness and to fight for better access to services and treatment for both persons with mental illness and their loved ones,” Sporer says. 

The study was published Jan. 25, 2023, in the Journal of Family Trauma, Child Custody & Child Development.

Contact: Sam Schipani, samantha.schipani@maine.edu