Empower for Caregivers

The concept of empowerment is typically used in employment contexts,41,42 but it is relevant to any ongoing role in which someone needs to feel confident; in control of his or her tasks; responsible for performing well; included, respected, and listened to by a larger group; and appreciated for contributing to the mission at hand. Feeling empowered also requires being well informed about what is occurring and what lies ahead.

Family caregivers are more likely to be effective and less likely to feel overwhelmed if both they and their ill loved ones are empowered as full-fledged members of a care team working toward a common goal. Cancer, more than most other illnesses, demands ongoing formal care in medical facilities and informal care where the patient lives. The formal and informal providers, as well as the patient, must coordinate with one another and pool resources to reach the best possible outcome, just as a team does. Each team member’s expertise is integral to achieving the goal. Consider these examples:

A nurse, who was the primary caregiver for her father and husband, made this statement at a 2015 Institute for Healthcare Improvement forum: “Caregivers have so much to tell. The clinicians need to hear from them.” She identified her most important caregiving roles as protecting, advocating for, and ensuring respectful, dignified treatment of her family members.

A woman whose husband had bladder cancer said in a personal interview, “I would say to the nurses, ‘Give him saline with that.’ They would say, ‘It is not needed,’ and I would reply, ‘It makes him feel better.’”

Because many caregivers are not as proactive as these family members, an explicit invitation to join forces with the formal care team—and processes that facilitate involvement—are essential. Investing in teamwork empowers caregivers by fostering transparency, responsiveness to team members’ needs, open discussion and problem solving, mutual learning and appreciation, and, of course, trust.42,43