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Parents of a severely disabled child often feel the same sense of unresolved grief as parents of missing children or people who lose a loved one to the cloudy depths of Alzheimer's, according to a new study done at Brigham Young University.
In the journal Family Relations, professor Susanne Olsen Roper and doctoral candidate Jeffrey B. Jackson show that these families face "ambiguous loss."
Other studies have looked at ambiguous loss: in the cases of soldiers missing in action, victims of the 9/11 attacks whose bodies were never recovered, or seniors who are living, but whose minds have been snatched away by Alzheimer's. In such cases, families often feel that they can't get closure on the painful event.
"No one has really gone out and talked to [parents of severely disabled children] to see if they were experiencing the same kinds of feelings," said Roper.
The BYU study looked at 20 families in which a profoundly disabled child was placed in specialized care outside of the home. Of the 36 parents who participated, 75 percent said they felt a sense of loss while raising a disabled child at home as the reality sunk in that the child was not the person they envisioned during pregnancy. Once a child was placed in out-of-home care, 65 percent of parents said the child was always on their mind. One mother whose son is in professional care said their weekly meetings were like a funeral every week because each visit meant saying goodbye again.
"It's like the child is out of their life, but not out of their life," said Roper. "They wonder, 'Am I really their mother, even though I'm not feeding them three meals a day and I'm not living in the same house?' "
Families "may feel guilty for placing their child, then relieved of a huge burden, and then another dose of guilt for feeling relieved," said Jackson.
The researchers hope their work will help families learn how to process the complicated emotions that follow placing a family member in professional care. They recommend parents look for meaning in their family experiences before and after placement, temper the need to feel in control, redefine their relationship with the child after placement and accept their conflicting emotions as normal.
Pauline Boss, an emeritus professor at the University of Minnesota who originated the concept of ambiguous loss, said the BYU study is a "major contribution" to understanding the trauma and distress parents of profoundly disabled children face.