Karen Lyons is convinced that older adults with chronic illness and their family caregivers can enjoy harmony and better health. All they have to do is get on the same page.

鈥淚鈥檓 a psychologist, so I鈥檓 very interested in the implications when people do or don鈥檛 see things similarly,鈥� says Lyons, a professor at the Connell School of Nursing (CSON). Lyons has devoted much of her professional life in the past two decades to studying the unique relationship between 鈥渃are partners,鈥� which is her term for an adult with a chronic or life-limiting illness and his or her family caregiver, usually a spouse. Her research has shown repeatedly that when both people in such a pair don鈥檛 see things the same way鈥攊f they disagree over how much pain or fatigue the patient feels, or how much effort a caregiver is putting in to managing doctors鈥� appointments, for example鈥攂oth are likely to experience discord and worsened health.

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Lyons broke with convention to study this phenomenon. While caregiving researchers have long focused on the health of the patient or the caregiver, she studies the two as a single entity, which she calls a 鈥渇amily care dyad.鈥� 鈥淚f you prioritize either the patient鈥檚 or the caregiver鈥檚 health, I really believe you miss the boat,鈥� says the native of Dublin, Ireland, who arrived at CSON in 2018 from Oregon Health & Science University (OHSU), where she was an associate professor. 鈥淏ecause you could have one care partner who鈥檚 doing great. But if they鈥檙e not both doing great, the dyad is not a success.鈥�

Lyons is the first theorist at CSON since Sr. Callista Roy retired in 2017. 鈥淭he Connell School has always valued theory鈥攊t鈥檚 part of the legacy and history of the school, and that was very important to me when I interviewed,鈥� says Lyons. 鈥淚 believe that theory is kind of like our handrail when we do research. We have to hold on to something or we will never be able to tell the story.鈥�

How two partners in a caregiving relationship appraise the shared experience is a foundational concept in Lyons鈥檚 theory of dyadic illness management, which she developed with her long-time collaborator, Christopher Lee, Ph.D., RN, the Barry Family/Goldman Sachs Endowed Chair in Nursing and the associate dean for research at the Connell School.

If you prioritize either the patient鈥檚 or the caregiver鈥檚 health, I really believe you miss the boat. Because you could have one care partner who鈥檚 doing great. But if they鈥檙e not both doing great, the dyad is not a success.
Karen Lyons, Professor, Connell School of Nursing

Lyons grew up in Dublin, where she attended University College Dublin (UCD). After receiving a bachelor of arts degree in psychology in 1993, she volunteered at a nursing home, where she spent hours talking to the residents. 鈥淪ome of these people were extremely unhappy. Somebody even attempted suicide,鈥� she recalls. 鈥淚 also got really interested in the other part of the equation, which was the family members and caregivers.鈥�

Karen Lyons

By the end of that summer, Lyons had abandoned plans to become a clinical psychologist. 鈥淚 realized I didn鈥檛 want to change one person at a time鈥攖hat if I really wanted to have an impact, I needed to do research,鈥� she says. But after receiving a master鈥檚 degree at UCD and moving on to Penn State to pursue a doctoral degree, she says she hit a wall. Lyons initially studied caregiver strain, but something was missing. 鈥淚 felt like I was losing the story,鈥� she says. Soon, her concept of patient and caregiver as a single unit began to take shape.

Lyons received a doctoral degree in 1999. Her dissertation, which would form the basis of an influential, widely cited 2002 paper published in the Journal of Gerontology: Psychological Sciences (JGPS), assessed 63 care dyads and found, among other things, that caregivers often perceived the challenges of their roles differently than patients did. More importantly, it was the first paper to focus on the care dyad instead of the patient or caregiver. The paper, says Lyons, 鈥渨as literally the foundation for my entire career.鈥�

By the time the JGPS paper appeared in print, Lyons was an assistant professor at OHSU鈥檚 school of nursing. In addition to teaching, she eventually took on the role of directing the school of nursing鈥檚 doctoral program, a natural fit for someone who feels a responsibility to guide young scholars. 鈥淭he mentoring that I received in college was hugely important and I have spent my career trying to give that back,鈥� says Lyons.

鈥淜aren is extremely generous in providing experiences for students that are beyond the 鈥榣ook over my shoulder and I鈥檒l put you on the paper as a coauthor鈥� experience. She wanted me to do the work myself, with her guidance,鈥� says Lyndsey Miller, Ph.D., RN, an assistant professor at OHSU鈥檚 school of nursing, who was one of Lyons鈥檚 advisees. The pair eventually coauthored a half dozen papers together and are currently at work on a study of care dyads coping with dementia.

Dyadic Illness Management: A Glossary

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Care partner

A member of a care dyad. Lyons prefers it to 鈥渃are recipient鈥� and 鈥渃aregiver,鈥� since it suggests equity in the relationship.

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Concealment

Hiding worries and concerns from others to protect their feelings; also called 鈥減rotective buffering.鈥�

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Dyadic appraisal

How two people in a dyad perceive an aspect of the illness, such as the severity of the patient鈥檚 symptoms.

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Incongruence

A gap in how two care partners appraise circumstances.

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Lyons met Lee soon after he arrived at OHSU in 2010. A cardiovascular nurse scientist, Lee was researching ways to improve self-management of heart failure. They shared an interest in using complex new mathematical models to analyze data. Soon, a team was born.

In an early collaboration, published in the International Journal of Nursing Studies in 2013, Lyons and Lee studied 509 heart failure patients and their caregivers. Using questionnaires, they determined that about one-fifth of the dyads collaborated effectively on care, and had good relationships. The caregivers reported low levels of strain.

Lyons鈥檚 subsequent research with Lee (who joined the Connell School faculty in 2018) and other investigators has more frequently found that dyads disagree in their appraisals of the patient鈥檚 symptoms. That鈥檚 particularly true with regard to subjective symptoms, such as pain, fatigue, or shortness of breath. This incongruence can create tension and interfere with management of a chronic illness. 鈥淚f I don鈥檛 think you have a lot of pain or fatigue or if I think you have more than you do, we don鈥檛 see eye-to-eye,鈥� says Lyons. 鈥淗ow can we start thinking about how to manage [the illness] when we don鈥檛 even see it in the same way?鈥�

Conflicting perceptions can also tax the health of both people in a dyad, Lyons has found. In a study published in February 2020 in the Journal of Family Nursing, conducted over the course of a year, she and Lee tracked the physical and mental health of 109 care dyads living with lung cancer. They found that pairs whose appraisal of the patient鈥檚 symptoms diverged over time reported worse overall health on standardized surveys.

While no one can say how many family care dyads exist in the United States, AARP estimates that 53 million Americans provide care for someone over 50.

Lyons has studied dyads dealing with heart failure, dementia, chronic pain, lung cancer, stroke, and Parkinson鈥檚 disease, among other conditions. Significantly, she has identified factors鈥攎ost of them modifiable鈥攖hat interfere with shared appraisal. In a 2020 paper published in the European Journal of Cardiovascular Nursing, Lyons, Lee, and undergraduate research fellow Taylor Sadowski 鈥�20 found that patients with heart failure who tended to hide or conceal worries about their health had greater levels of depression than others; they were also more likely to be hospitalized over the course of the 12-month study.

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By identifying the role that concealing symptoms and other modifiable factors鈥攕uch as poor communication, depression, and lack of support from other family members鈥攃an play, Lyons has become confident that struggling dyads can be helped. That conviction has led the theorist to become involved in a series of intervention studies in recent years.

In early September, the National Institutes of Health/National Institute on Aging announced that Lyons and her team had been awarded a highly competitive R21 grant for her project Taking Care of Us: A Dyadic Intervention for Heart Failure.

Lyons taught two courses for Ph.D. students this fall while continuing to develop her Theory of Dyadic Illness Management鈥攁nd feels like she鈥檚 in the perfect place to do just that. 鈥淚 wanted to be somewhere for the second half of my career that integrated stellar research with excellence in teaching,鈥� says Lyons. 鈥淚鈥檓 excited to be starting a new chapter at Boston College.鈥�

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