Next Step in Care

Created by the United Hospital Fund, Next Step in Care: Family Caregivers and Health Care Professionals Working Together is a multi-year, multi-dimensional campaign that is designed to change health care practice so that providers routinely recognize, train, and support family caregivers, especially at times of transitions in care.

This month on Key Feature, Carol Levine, Director of the Families and Health Care Project at the United Hospital Fund in New York answers questions about the campaign.

Q: Why is it important for family caregivers to be informed about and involved in planning transitions between health care settings?

A: Family caregivers can help make transitions for chronically or seriously ill patients safer and more effective. They may know more about the patient's medical history and care than any individual provider. They are often responsible for providing or managing follow-up care after a hospitalization. If family caregivers are not involved in planning, professionals may mistakenly assume their availability, capacity, and willingness to provide care, resulting in poor quality of care and increased costs.

Q: How does the campaign contribute to smoother transitions in care?

A: Next Step in Care is designed to facilitate partnerships between health care providers and family caregivers. We believe that the shared goal of smoother patient transitions can be accomplished only through collaboration.

Q: What are the campaign's accomplishments to date?

A: There are several. We enlisted the cooperation of providers in New York City hospitals, nursing home rehab units, and home care agencies in developing and testing family caregiver and provider guides with their staff and family caregivers. We have developed a series of 18 guides (so far) for family caregivers to help them understand and participate more actively in transitions. There are additional guides for providers. Available in English, Spanish, Chinese, and Russian, the caregiver guides are free and downloadable on our website, www.nextstepincare.org. The website has already gained broad usage across the country and abroad.

We also worked with 14 providers in a six-month Collaborative Design Group to develop strategies and tools for a 40-50—member collaborative called Transitions in Care—Quality Improvement Collaborative (TC-QuIC) to be launched in April.

In addition, we have a consumer organization advisory group helping us in training staff to introduce the family caregiver guides.

Q: What were the challenges you faced so far implementing the campaign?

A: We are engaged in changing the culture of health care, and change is hard. Everyone knows that health care is a series of silos; what we found is that there are silos within silos within silos. Communication is limited. And faced with the possibility of change—even change that is going to make things better—some people retreat. Of course, the current economic pressures also contribute to a reluctance to try something new when the workforce and resources are both already stretched thin.

Q: What is the campaign's vision/goal for the usage of the website?

A: The Next Step in Care website is not the purpose of the campaign; it is a vehicle that makes comprehensive tools for change easily accessible to broad audiences. The guides help structure conversations and provide basic understanding of how to navigate the health care system. An important feature of the website is its transparency—that is, all the guides are equally available to providers and family caregivers.

Q: Has the website accomplished this vision? How?

A: By definition, visions are ideals. We have certainly made strong advances, but we are keenly aware of how much more remains to be done. The collaborative work with providers, consumer organizations, and caregivers is the core of the vision; the website is the organizing framework that brings everything together. But if you are a caregiver or a provider working with caregivers, you are probably focused on the here and now. Accurate information and solutions to many common challenges are readily available on the website.

Q: In a short statement, what is the "bottom line" message this campaign offers to professionals? How can professionals use this message in their practice?

A: Family caregivers are essential partners in providing coordinated and high-quality care to your seriously and chronically ill patients, especially as they move between settings. Incorporating Next Step in Care guides into your routine practice can help make family caregivers better informed, more proficient partners.