From the Sidelines to the Bedside: Inviting Family Members to Partner in Healing

When a family member is in the hospital and we get word they can go home, we’re relieved. But this is often followed by profound anxiety.

Are we up to the task to help them recover at home?

A daunting list forms as we get them dressed and packed. Around the same time, a nurse often sits down to go through information about medications, lists of instructions, and when to call. Unfortunately, it’s not an ideal time to focus and absorb information, let alone learn new nursing skills we never had a chance to practice.

We are now informal/family caregivers (a.k.a. care partners). And many live in fear of making a mistake and injuring or causing harm. Not surprisingly, the more complex the caregiving task is, the greater the worry (AARP, 2019). While resources such as clear information to take home are helpful, nothing is the same as getting comfortable with tasks through practice to develop muscle memory.

Involving Family Members at the Bedside
Enter Michelle Van De Graaff, now a nurse at Intermountain Medical Center. In her pre-nursing days, Michelle was in the Peace Corp in the Republic of Kiribati, where she helped open a school. She also spent time with the island nursing clinics, which served 2000 residents. With the small nurse-to-resident ratio, family members provided much of the care for their loved ones in the hospital. In the states, family members tend to be visitors. So, they often advocate and ask questions, but they don’t usually participate much (if at all) in any hands-on care.

Years later, Michelle had a baby that came into the world with aortic stenosis. She noticed how much better he tolerated treatments when she or her husband held the child instead of the nurses. As parents, they actually provided a sort of palliative care.

Thinking back through these experiences and encouraged by a culture of sharing ideas at Intermountain, Michelle created a program in cardiothoracic surgery. They invite family members (care partners) to be part of the care team during the hospital stay. After all, many people are intimidated by hands on care. They worry they may hurt someone or do something wrong. And trying to load them up on training the day of discharge can add to that stress. And it’s not a good time for them to focus when they’re getting their family member ready to go home.

Michelle collaborated with her manager, legal team, floor nurses, and a nurse-project manager to create and implement the program and eventually take it system wide.

They created videos, handouts, badges, and teaching modules for the nurses. Each of their 23 hospital administrators chose a nurse hospital lead, and a manager on each unit chose a floor nurse champion. Champions ordered materials and trained their teams.

Inviting Family Members to Learn and Help at the Bedside
First, the hospital team explains the program and invites family members to become part of the care team. Most accept. The family members then get a badge and are trained to monitor fluids, learn why and how often to use an incentive spirometer, or in the ICU they may help with skin care. They also get a checklist where they can record what they do with the patient (like passive motion exercises). They’re also shown where things like ice and pillows are, so they can help themselves. The program is called: Partners in Healing®.

Families feel involved and included, and less like furniture. People also get a chance to learn and practice hands-on care and build competency. They become comfortable and confident in their ability to continue the care at home. Families and patients who have participated in the program say:

“I really appreciated being given the authority to assist in my husband’s recovery.”

“We (wife and I) thank you for allowing us the dignity to be part of each other’s lives.”

“This program helped me [the caretaker] feel the confidence that I would be able to do what is needed once we arrive home.”

Most people who participated felt it greatly enhanced the transition to home. And it reduced 30-day readmissions by 65%. 94% of participants also highly recommend the program for others (Chest, 2018).

Including family members on the care team also gives them a chance to ask questions they often wouldn’t think to ask until they start caring for a loved one at home. And once people are at home there’s no one at hand to guide them in the moment.

Creating partnerships with families reduces their anxiety. In fact, reducing family anxiety, depression and PTSD is one of the stated goals of the program. Care partners already get poor sleep. And the concern they may do something wrong or harmful is something we can help alleviate by working with them during a hospital stay so they have a good grasp on what’s going on.

And this program is now expanding. The New York State Health Facilities Association has created a detailed “Care Partners” program which they now offer to 164 hospitals throughout New York.

To learn more about the program:

About the author

Geri Lynn Baumblatt

Geri Lynn Baumblatt

Geri works to improve relationships, communication, understanding, efficacy, outcomes, experience and wellbeing of patients, clinicians, and family caregivers. Her work incorporates principles from health literacy, decision and behavioral science, neuroscience and organizational design. She cofounded the Difference Collaborative to help employers address the growing needs of their employees who are family caregivers so they can work, care and thrive.