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Creating a Caregivers Support Program to Improve the Patient and Family Experience
What was the challenge, opportunity or issue faced?
The family caregiver plays a critical role in affecting patient outcomes. As hospital stays get shorter, the family caregiver is taking on greater care responsibilities adding to the challenges of coping with acute or chronic illness. They are often not prepared for this role; they did not sign up for it nor are they paid to do it. It comes on top of other responsibilities they have. It is a very stressful role that can have a dramatic impact on their own health and well-being. 65 million people are in the caregiving role at any time.
What did you do to address it?
The Ken Hamilton Caregivers Center (KHCC) at Northern Westchester Hospital was started by a former caregiver, Marian Hamilton, who recognized the unmet needs of the family caregiver in the health care system. Marian Hamilton was a caregiver to her husband dealing with a rare, fatal form of cancer for two years. At that time, she was also actively raising two teenage daughters. She saw the need for a caregiver support program that would help caregivers by offering: non-judgmental emotional support and help navigating the health care system. Initially, when contemplating how best to reach and service family caregivers, it became apparent to Marian that hospitals or acute care centers were the best place to find them and forge connections. Family caregivers often don’t self-identify and often don't have the time or inclination to travel outside of the home or hospital to get help. Thus, establishing support services for them in hospitals made better sense.
Marian Hamilton envisioned a calming space apart from the busy hospital floors where one could clear their head, possibly talk to someone and receive emotional support as well as referrals to appropriate community resources. After a positive reception to the concept from administrators at Northern Westchester Hospital, focus groups were done to assess the critical components of a support program and the desirable attributes of a physical space in the hospital. And in 2006, the Ken Hamilton Caregivers Center was borne. The center was designed to create an oasis for rest and respite staffed by a team of extensively trained volunteer Caregiver Coaches. A full time Social Worker oversees the day to day operations of the center, provides training and support for the Coaches and participates as the voice of the family caregiver in various hospital committees including palliative care and ethics. Coaches round on the hospital floors and make connections with family caregivers; they offer a compassionate ear and help address the myriad of issues that may emerge. Because our time is focused on families, we often address issues proactively thereby freeing up the medical staff to spend more time on clinical issues. The scope and breadth of the center’s involvement includes: plan of care meetings, advance directives and end of life discussions, discharge planning, caregiver support groups, resource referrals and much, much more.
The program has expanded greatly over time in terms of its’ overall reach and ongoing connections to caregivers. It is currently staffed by two Social Workers as well as an ever expanding team of well-trained volunteer Caregiver Coaches. We now offer support to the Professional caregivers in their clinical roles as well as their own family caregiving roles. Members of the local community can also take advantage of our support services.
In 2015, we started a "Stay in Touch" program where we provide phone support to caregivers post discharge. This was developed in light of shorter hospital stays and the fact that caregivers are playing a larger role in managing their loved ones health in the community. This can contribute to greater isolation and stress. Caregivers receive telephone support on a regular basis post discharge to help them deal with their challenges. It continues for as long as the caregiver desires.
Recognizing the tremendous impact of the program, the center’s mission expanded to spreading the model to other health care facilities. Since 2008, we have helped 13 other facilities create their own centers targeted to the needs of their population. A formal replication program offers a guided journey on how to develop the concept within your institution. It consists of a full day group visit including a tour of center and presentation which includes: overview of creation, design and implementation of program with founder, staff and hospital colleagues, review of daily operations, best practices, recruitment, training and retention strategies for volunteers, guidance on how to start your own center -i.e., achieving buy in, hosting focus groups, introduction of center to staff and community, establishing metrics, creating a resource library, supporting the professional staff, and expansion to post discharge phone support. Replicated sites receive a comprehensive replication manual and a coaches training manual. The KHCC provides on going guidance and support. New sites are welcome to return to shadow our social workers and volunteers to gain first hand exposure to our operations.
With a growing group of replicated sites, we formed a Caregivers Center Consortium to create bonds between our replicated facilities to share best practices and continue to push the envelope in designing innovative support for family caregivers.
What outcomes were achieved?
The number of yearly caregiver interactions has grown from 500 in 2006 to over 8,800 in 2017. From the inception of the program, the hospital saw a rise in HCAHPs and Press Ganey scores in the area of patient and family satisfaction. These scores have been maintained though we recognize that there are many contributing factors.
Our volunteer support has grown from 3 caregiver coaches in 2005 to 34 in 2017. Many of our coaches have been family caregivers and were prior recipients of our services, which is a strong endorsement. We receive many letters of appreciation and are the recipients of memorial donations as well as grateful caregiver donations.
The program has now been replicated at 13 facilities that together make up our Caregivers Center Consortium. They include: Burke Rehabilitation Center - NY, Cancer Services of Midland, MI, Danbury Hospital, CT, Hospital of the University of Pennsylvania, PA, Mercy Medical, IA, Montefiore Medical Center, NY (3 locations), Overlook Medical Center, NJ, Peconic Bay Medical Center, NY, Shore Medical Center, NJ, Westchester Medical Center, NY, White Plains Hospital, NY.
As part of our Caregivers Center Consortium, we host Symposiums twice a year where we share new initiatives, successes and challenges. Additionally we invite volunteers to the Symposiums annually to enhance their training, broaden their exposure to work of the other centers and foster connections. Periodically we invite guest speakers to present relevant topics such as Cultural Competency and Active Listening.
The Ken Hamilton Caregivers Center presents its program at various conferences throughout the year with the goal of introducing the concept to other health care facilities and expanding more broadly. The Caregiver Action Network and Planetree Organization have recognized the program on a national/international level.
About Northern Westchester Hospital
Northern Westchester Hospital is an acute care, community hospital located 40 miles outside of New York City. Northern Westchester Hospital is a designated Planetree affiliate with distinction. The hospital features:
- 245 beds, 700 Medical Staff and 1000 employees
- Med Surgery, Critical Care & Level III NICU
- Comprehensive Surgery - Bariatric, Neurosurgery and Robotic Surgery
- Inpatient Behavioral Health Unit
- Comprehensive Cancer Center and Wellness Center
- Transitional Care Unit
- The Ken Hamilton Caregivers Center
- Comprehensive Cancer Treatment and Wellness Center
- Sleep Medicine Center
- Integrative Medicine Program
To learn more about Northern Westchester Hospital, visit www.NWHC.net.