How Family Can Help – and Sometimes Hinder – the Management of Chronic Illness

“The management of chronic illnesses is demanding,” says Karen Rook, PhD, Professor of Psychology and Social Behavior at the University of California–Irvine.

“Patients frequently must initiate and then sustain changes in multiple health behaviors, often for the rest of their lives,” explains Rook, the keynote speaker at the UW Institute on Aging’s recent annual colloquium. “They often have to follow a complex medication schedule, and monitor their bodily condition and various functions, as well as having to cope with the emotional distress associated with the illness.”

Chronic diseases are responsible for more than three-quarters of health care costs and 70 percent of deaths in the United States. Around 80 percent of older adults have at least one chronic condition; 50 percent have at least two. How well older adults manage chronic illnesses can determine whether they’re able to live independently or not.

Given the impact on their health and quality of life, how can older adults be supported to stay on top of their chronic conditions?

The people around them can make a big difference, according to Rook.

“The management of a chronic illness occurs in a social context,” she says. While neighbors, friends and family can all play a part, “Spouses are in a unique position. … They live together. They will see instances of non-adherence and can try to intervene.”

Yet the social aspect of chronic illness management is a mixed bag. “Family members’ involvement is often helpful, but it can be unhelpful,” warns Rook.

The most common ways in which family members seek to influence disease management are social support and social control. Social support involves recognizing or reinforcing healthy behaviors. Examples include praising a family member for following their treatment plan, exercising together with them, or adopting the same diet they must follow, if it’s safe to do so.

Social control involves trying to improve someone’s health behaviors. It can be less forceful, or persuasive, such as reminding a family member to take their medications or explaining why they need to exercise. When it’s more forceful, social control could involve criticizing a family member for not following their treatment plan or talking about people who had health problems after failing to manage similar conditions.

While social support is helpful, social control can be helpful, unhelpful, or have both positive and negative effects.

“Social control involves the element of constraint,” explains Rook. “Compared to social support, social control is more likely to occur when a person frequently exhibits poor health behavior, and to be experienced by the person as unwelcome. … It’s the family member stepping in to say, ‘I’m going to push you and nudge you a little bit, because your own self-control is poor’. … So even if social control does foster improved health behavior, it may have a psychological cost.”

Whether social control has positive, negative or mixed impacts depends on a number of factors. These include the person’s expectations of and desires for family involvement in their health, the relative commitment of the person and their family to managing the chronic illness, and the person’s level of satisfaction with their family relationships.

Interestingly, social support and social control appear to play complementary roles when a person managing a chronic illness temporarily veers from their treatment plan.

In a study of older adults with type 2 diabetes who had problems following their diet plan, Rook found that, “Support seemed to help prevent the lapses. Social control wasn’t that effective in preventing the lapses. On the other hand, once a person had lapsed, then it was the control—in our study, it was the stronger form of control—that seemed to help patients get back on track. Support didn’t do much. Then once a person had become adherent again, support was what mattered.”

One lesson for people managing chronic illness and their family is “to discuss their expectations and their preferences for their roles in the illness management,” as explicitly and concretely as possible. Health care providers can encourage these discussions.

A little empathy also goes a long way. “Patients often feel misunderstood. ‘You don’t know how hard it is to do, when you tell me to do X, Y, Z,’” says Rook. “A family member can acknowledge that, while at the same time explaining their point of view. ‘You’re right, I don’t know what it’s like to have to do X, Y, Z. But you need to do those things to avoid complications. And I have to keep after you, because I love you.’”

Taking the time to simply have fun and enjoy each other’s company is important for people with chronic conditions and their family. Companionship reduces stress and increases treatment adherence.

Health care providers, patients and family members can all benefit from better understanding the social dynamics of chronic illness management. “Helping patients and family members learn to work together to manage a chronic illness is a challenging, but very worthwhile, goal,” says Rook.

–Diane Farsetta
Photo from University of California–Irvine