BYU researchers document unresolved grief of developmental disability

Newfound parallels to Alzheimer’s, missing persons open avenues for counseling families

Parents of children with severe development disabilities confront similar challenges as those of Alzheimer’s patients, soldiers missing in action, and 9/11 victims whose bodies were never recovered from the rubble: unresolved grief.

A new Brigham Young University study by Professor Susanne Olsen Roper and doctoral candidate Jeffrey B. Jackson shows parents of children with profound, life-long developmental disabilities may lack emotional closure both while caring for the child in their home and after placing the child in out-of-home care.

In the journal Family Relations, Roper and Jackson document how these families often face a phenomenon called ‘ambiguous loss.’ This situation arises when a loved one becomes either physically present but psychologically absent – as with Alzheimer’s disease – or physically absent but psychologically present – as with a missing family member.

“What makes the loss more poignant is that these families chose to place the children out of the home,” Jackson said. “They may feel guilty for placing their child, then relieved of a huge burden, and then another dose of guilt for feeling relieved.”

Of the families that participated in the study, 75 percent reported a sense of loss while raising the child in their own home. The normal child they envisioned during pregnancy was not present, and parents spoke of lost opportunities and experiences their child would not have because of the nature of their disabilities.

After placing the child in out-of-home care, 65 percent of parents said the child was always on their mind despite being gone. One mother who regularly visits her son after a placement said their weekly meetings were in some ways like having a funeral every week because each visit meant saying goodbye again.

Families that decided to place their child cited factors such as safety, the added strain on a marriage and the possibility of neglecting siblings without disabilities. The researchers hope that their work will help families learn how to process the complicated emotions that follow when a family decides that it’s in everyone’s best interests for a family member with profound disabilities to move into a professional care situation.

Sixty percent of the families reported both the before- and after-placement types of loss. Pauline Boss, an emeritus professor at the University of Minnesota, originated the concept of ambiguous loss and calls the BYU study a ‘major contribution’ to understanding the trauma and distress parents of profoundly disabled children face.

“The most stressful kind of loss is one that remains unverified and unclear,” Boss said. “Unlike death, there are no community or religious rituals of support, and no closure.”

Based on Boss’ work helping people deal with ambiguous losses, Roper and Jackson suggest parents of children with disabilities identify seemingly opposing feelings, such as disappointment and gratitude or guilt and relief. What helps parents tolerate the conflicted emotions before and after placement is to accept both feelings as true and normal.

“People who need to feel in control have an especially hard time,” Jackson said.

The idea for the study came to Jackson during a summer job working with developmentally disabled people. Then an undergraduate, Jackson approached Roper and soon the pair received a grant from the university to conduct the study. They began contacting families through state and private agencies. With the 36 parents they reached, Jackson and Roper conducted in-depth interviews covering topics such as stress at home, forms of support, reasons for placement, and changes in the family after placement. Together the transcripts make up more than 1,000 pages which were content coded so the researchers could examine common themes across all the participating families.

“The big question for these families is ‘Do we still consider the placed child part of our family or not?’” said Roper. “It’s not necessary that they come to a final decision, but that they learn to deal with the ambiguity.”

Tips for families of children with developmental disabilities: