Hospice providers have made recent moves to boost family caregiver support as access to respite care and other resources lags.
Massachusetts-based NVNA and Hospice is among these providers. The company recently launched a new support group for adult caregivers of oncology patients. The monthly community group is intended to provide resources and assistance for caregivers navigating the emotional impacts of helping a loved one with cancer.
Caregiving can take a tremendous toll on a family’s well-being and their ability to provide sustainable support, according to Frank McCaffrey, support group facilitator at NVNA and Hospice. McCaffrey is a retired clinical social worker, who most recently served patients at Boston-based Beth Israel Deaconess Medical Center (BIDMC).
Many families do not understand the full scope of support they need or how to find those resources. This is a main reason that NVNA and Hospice began offering the caregiver group, he stated.
“The goal is to provide some psycho-education on the impact of caregiving and ideas on how to navigate those demands, as well as a chance to share and talk with others facing similar situations,” McCaffrey told Hospice News in an email. “Among the lessons this group can provide caregivers is understanding the importance of self-care.”
Some of the most common challenges faced by cancer patient caregivers are practical issues such as transporting loved ones to frequent medical appointments for tests, treatments or imaging. Caregivers may need to travel farther distances to specialized cancer centers that provide these services, which can impact their ability to manage other aspects of their lives, he explained.
Caregivers often lack a safe space to discuss the hardships of caring for a seriously or terminally ill family member, he stated. These community groups allow them a place to both share their experiences and learn from others, McCaffrey added.
“Among the goals of the caregiver support group is to provide a time and place to speak openly of the challenges of being a caregiver,” he said. “Often, this role means maintaining a work/caregiving balance. The demands on the caregiver will reflect the health and functioning of the patient. Often, caregivers feel the need to sacrifice their own needs or routine in service of the patient’s needs. Caregivers can feel that they are ‘complaining’ if they talk about the hardship of living with cancer.”
Having a space for caregivers to voice their individual and nuanced challenges can help hospices better understand and develop supportive resources for patients and families within their local areas, according to Great Lakes Health Partners CEO Steven Alessandro. Great Lakes Health Partners is an Interim Healthcare franchise.
Reaching caregivers with more personalized services can impact quality outcomes for patients as well, he said.
“[It’s] going in with a blank slate and not assuming that you know anything about these patients and their families,” Alessandro told Hospice News. “It’s organically trying to learn from them and use it as a fact-finding mission to see what their needs are. We can still have that personal touch and that extra added level of support that focuses on quality.”
Providing virtual support alongside community outreach can help hospices reach a wider audience of patients and families with diverse needs, said Dave Hochanadel, director of brand strategy at Transcend Strategy Group.
The home health care consulting company’s recent research dug into the varied outreach efforts that hospice and home-based care providers are employing to grow their census and improve outcomes.
Many variables can impact how well a hospice reaches caregivers and informs them of available resources , Hochanade said. Applying a broader mix of in-person and online events can help hospices identify caregivers’ specific needs, he stated.
“We’ve found a lot of success lately with a very heavily digital approach, but blending that with traditional media outreach,” Hochanadel told Hospice News. “That’s part of what a provider needs to do as part of their jurisprudence, is making sure that they’re evaluating where that caregiver audience is, which can vary from market to market. A digital approach allows you to reach that audience.”