Family members often struggle to work and make decisions as an intergenerational family unit while caring for seriously ill loved ones, according to a new study from the School of Public Health. The findings shed new light on the nature of the role that families play in caring for a seriously ill loved one and has important implications for how providers work with patients and their family members.

The study — which examines family-related experiences reported by caregivers in the course of serious illness — was published in the American Journal of Hospice & Palliative Medicine. Assistant Professor Katie White co-authored the study with Dr. Erik Anderson from Allina Health.

The researchers found that often entire families — and not just sole individuals such as a spouse or adult child — step in to care for a relative in failing health.

White said that she expects caregiving by families to increase in the future because the aging population, job demands, and other factors will require a group effort to meet the needs of those who are ill.

The study also showed that family members reported both rewards and challenges in caregiving. They described learnings gained for the family along the caregiving experience, the legacy of knowledge about caregiving they were leaving for the younger generations, and, often, depicted their family as a dynamic, adapting system under stress. They also demonstrated and reaffirmed their family values in the act of caring.

Several themes emerged during the study pointing to the kinds of support caregiving families feel they need most from the health care community.

“Our study revealed that families often see themselves as the primary provider of caregiving and they wish to be recognized by the health care system as such,” says White.

The families also indicated that they felt heartened and supported in their task when they, as a family, sense there is a trusted, personal relationship with members of the health care system.

And, finally, the families asked for the providers to give them practical advice and information to help them care for their loved one as a family unit during each step along the illness trajectory.

White said that, ultimately, respecting how families view and conduct care for a loved one with serious illness can help providers improve the quality of life and experience of both the patient and their family members.

“If families don’t feel respected, care can feel disjointed, unsatisfactory, and add to the burden of stress that individual caregivers and ultimately the entire family experience,” says White.

The study team, which also includes Associate Professor Tetyana Shippee and Assistant Professor Nathan Shippee, is currently building on the research by evaluating a supportive care model that used a user-centered design approach in its development. The hope is that health systems can use this new model to improve the quality of life and experience of patients, families, and the care team during the course of serious illness.