When grief doesn't end: Nursing PhD students bring a classroom theory to Ohio families

Most of us think of grief as something with an ending. A loss happens, it hurts, and over time the hurt fades.

For many parents of children with developmental disabilities, it doesn't work that way. The sadness can quiet down for months or years and then come back. It might return on the first day of kindergarten, at a cousin's wedding, at a high school graduation, or on the day a young adult ages out of school services.

Nurses and researchers have a name for this: chronic sorrow. Last October, two University of Cincinnati College of Nursing PhD students helped bring that name to a room of families, people with disabilities and the professionals who support them.

Christiana Williams and Ummy Msenga presented "Beyond the Diagnosis: Understanding Chronic Sorrow in Families of Children with Disabilities" with Cleopatra Kum, PhD, RN, an assistant professor at the college. Their audience was the Synergy Conference, a three-day statewide gathering that draws more than 1,000 people from Ohio's developmental disability community, from people with lived experience and their families to direct support staff, educators, agency leaders and policymakers. It was the first conference presentation for both students, and the first time Kum had brought students along to present.

The term "chronic sorrow" goes back to 1962, when Simon Olshansky used it to describe what he saw in parents of children with developmental disabilities. Nurse researchers Georgene Eakes, Mary Lermann Burke and Margaret Hainsworth later developed it into a nursing theory in 1998.

The theory describes recurring sadness as a normal response to an ongoing gap between the life a family imagined and the life they are living. It is not a mental health diagnosis, and it does not mean a parent has failed to accept their child. The feelings can sit right alongside love, pride and hope.

That idea landed with at least one mother in the room. She found the presenters after the session to thank them.

"She said, thank you so much for giving it a name," Kum says. "Every time there would be a graduation or a major event, she had experienced this kind of sorrow. She never had a name for it."

Without a word for it, the mother told them, she had not been sure the feeling was allowed. Her child is alive, so why was she grieving?

The audience also broadened the discussion beyond parents and families. Several people with disabilities shared their own experiences of grief, including the sorrow of feeling responsible for the pain their families experience.

"They brought up the sorrow that comes with being the person causing all this grief to your family," Kum recalls. "That was another point that we hadn't considered."

Hearing these perspectives gave Msenga a deeper understanding of how chronic sorrow affects people differently.

"Hearing their experiences helped me understand that grief can be ongoing and recurring and that each person experiences it differently," Msenga says. "It reminded me how important it is to listen with empathy, acknowledge their feelings and offer support without making assumptions."

The discussion also gave providers practical tools for supporting families, including language that encourages open conversations and questions to ask during major life transitions.

The impact extended beyond the conference. After the session, the superintendent of the Auglaize County Board of Developmental Disabilities invited the team to share the material with the organization's staff.

Grief and feelings are not what most people picture when they hear "PhD in nursing." But this is what theory work can look like in practice: an idea taken apart in a seminar room ends up changing what a provider says to a worried parent.

Williams and Msenga are now in their second year of the program, connecting their research to people outside the university. Williams is a pediatric nurse who cared for children and families in Ghana before starting her PhD; her research looks at how social and environmental factors, including air quality, affect children's development and sleep. Msenga is a psychiatric and mental health nurse and an assistant lecturer at Hubert Kairuki Memorial University in Tanzania; she studies mental health stigma and access to care.

The work has already opened the door to further outreach. After the Synergy Ohio Conference, the superintendent of the Auglaize County Board of Developmental Disabilities invited the team to share the session with the organization's staff.

The team closed by returning to the question of when grief ends. Their answer, on the final slide: "For many families, it does not end. It changes, recedes and returns. Our role is to make sure families do not have to carry it alone."

Feature image: Christiana Williams and Ummy Msenga standing in front of their presentation at the Synergy Conference. / Photo provided.