Family Caregivers are an essential part of healthcare, and essential to patient health and success at home. According to a 2015 AARP report, 43.5 million U.S. adults provide unpaid care or an ill parent, child or spouse, and other estimates suggest the number is even higher. In fact, Americans are now more likely to spend time caring for an aging parent than raising children. In today’s healthcare environment, where quality and outcomes are paramount, caregivers are more important than ever. Yet, they are often ill-equipped to help their loved on navigate their care most effectively. We must engage and support them with the information and resources they need.
Becoming a Care Partner
MaryAnne’s mom had multiple chronic conditions that resulted in numerous falls, many broken bones, and frequent trips to the emergency room. Each care transition came with a stack of confusing paperwork, but no clear delineation of next steps other than “follow up with your primary care doc” or “here is a list of nursing homes to choose from.” Longer hospital stays involved the “discharge planner” who was able to give cursory support in coordinating next steps in care. But she was overwhelmed by her caseload and not very accessible.
As her mom’s caregiver, MaryAnne was left to navigate the fragmented healthcare and social services systems as best she could, resulting in missed time from work, financial hardship, and constant stress. Family caregivers are the front lines of healthcare and currently 90 million+ strong. They are often the “care transition team” for their loved ones, burdened by outdated care transition processes throughout the care continuum. This frequently results in return trips to the ER.
Hope on the horizon
The CARE Act, requiring the identification, notification, and education of family caregivers of individuals who are hospitalized, has been passed in over 30 states. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need both inside and outside of the healthcare system to effectively manage the care of their loved one.
Family caregivers are often new to their role and don’t know where to find information, support and resources in their community. Connect them to people who can help. Social workers and care navigators can be critical allies in helping families navigate the complexities of care and make informed decisions about housing, transportation, insurance, and other services, which frequently impact health outcomes. Include caregivers in education and engagement efforts throughout the episode of care. A well-informed caregiver can provide powerful reinforcement and be the eyes and ears for your care team beyond the clinical setting.
A little time goes a long way
Lists of resources or nursing homes can be as daunting as they are helpful. Sitting with people to help them know what questions to ask or factors to consider is a huge help. The first time Geri had to help find an Long-term Acute Care (LTAC) facility for her father, she and her mom thought they were diligent and thoughtful: getting a tour of the facility, asking questions. But the LTAC was far from where they lived, putting strain on her mom and family. Her mom stayed too late one night, drove home tired, and almost became a patient herself. That extra distance was a factor they didn’t consider, because they didn’t have experience. Just that insight would be valuable.
Small insights on how to navigate the system can also be priceless. For example, beyond telling people how important it is to make and attend their follow-up appointment, if patients/caregivers know to mention they were just in the hospital and have a new diagnosis, like heart failure, they’re more likely to be scheduled in days or weeks instead of many weeks down the road. This is an approach we took when designing our take in the heart failure transition series, where interactive voice response phone calls and short multimedia programs help family caregivers stay focused on discrete tasks each day, navigate the healthcare system, and effortlessly report changes to the hospital on patient status, new symptoms, side effects or let them know there’s confusion about medications.
Extending the care team
This type of outreach extends the care team. Hospitals have limited resources and time to call everyone who is discharged. Outreach with interactive calls is a way to reach family caregivers – whether they live with or far away from the patient – letting them know what’s going on, helping them stay on task, and providing an easy way to report challenges back to the hospital. This also helps hospitals spend their human resources more wisely, as they can easily identify families who need help most.
Have you used technology to engage family caregivers and care partners? Share your best practices.
Geri and MaryAnne will be participating in panels and workshops December 2nd and 3rd the first National Caregiving Conference will be taking place in Chicago! Geri will be a panelist on 2 panels: Creating Programs Family Caregivers Will Use as well as How Family Caregivers can Get Help, Ask for It and Receive It. Register to watch the free live stream or attend in Chicago. Check out the conference hub at: http://www.caregiving.com Also follow the action on Twitter at #NCC16.
MaryAnne Sterling was a caregiver and healthcare advocate for her parents for 20 years. She is a renowned speaker and educator on family caregiver issues, a role that evolved from her experience having multiple parents struggling with dementia. She is a fierce activist for healthcare transformation, family caregiver empowerment, and a cure for Alzheimer's disease.
Geri Lynn Baumblatt is the Executive Director of Patient Engagement at Emmi. She is on the board of the Journal of Patient Experience, a regular contributor to the Association for Patient Experience, and regularly participates in health literacy and shared decision making, patient engagement and experience conferences at organizations like AHRQ, the Brookings Institute, the Society for Medical Decision Making, the Beryl Institute, Stanford Medicine X, and the Center for Plain Language. Catch her in October at MedCity Engage, HARC, and the Partners Connected Health Symposium.