Being a family caregiver: The challenge is real

In an ideal situation, a person who interacts with the healthcare system owns their journey of care and can determine the best course of action based on all evidence-based information. But there are times when patients may be incapable of fully engaging in their care. Serious illness, medication-related cognitive impairment and age-related health decline are just a few examples of barriers that impact a person’s capacity to actively participate in their care.

In these situations, a family member or other trusted caregiver shoulders much of the care burden. They are faced with performing complex medical and nursing tasks, such as cleaning wounds, administering injections and managing feeding tubes. Coordinating the communication of a myriad of providers, including physicians, nurse practitioners, physical therapists, pharmacists, social workers and other health professionals caring for a loved one and keeping track of multiple care plans also falls to the caregiver.

Longstanding research shows (Belden et al, 2001), however, that most family caregivers are not optimally prepared for their role and provide all of this care with little or no training on how to safely and effectively perform these tasks. In addition, many older caregivers – often the spouse of the person needing care – have their own health issues that make performing these tasks challenging.

The health consequences of caregiving

A growing body of evidence shared by AARP (2012) shows that family members who provide care to individuals with chronic or disabling conditions are themselves at risk. While researchers have long known that caregiving can have harmful mental health effects for caregivers, caregiving can also have serious physical health consequences.

Seventeen percent of caregivers feel their health, in general, has become worse as a result of their caregiving responsibilities. And caregivers who provide care for people with dementia risk compromising their immune systems for up to three years after their caregiving experience ends, thus increasing their chances of developing a chronic disease themselves.

With the tidal wave of aging baby boomer Americans, the role of caregivers for elderly parents, relatives and friends will only continue to grow. Better supporting these individuals to prevent burnout, compromised health and depression has never been more important.

But how? Technology can help.

Caring for the caregiver

While no one wants to be in the hospital, healthcare systems are a vital resource for engaging patients and family caregivers during a hospital stay to ensure a safe transition to home. Clinicians have an integral role in reinforcing instructions, explaining the importance of follow-up appointments and providing training and moral support for the wide range of clinical caregiving tasks for which family members were never trained. Healthcare organizations that practice meaningful family caregiver engagement and integrate caregivers into the patient discharge process can reduce hospital readmissions by 25%, according to a study from the University of Pittsburgh Medical Center.

Another study showed that married patients were significantly less likely to be readmitted, suggesting they had more social support than unmarried patients. The Henry Ford Health System study examined links between readmissions and social factors, suggesting that readmissions are not just an issue of hospital quality. The findings suggest that caregiver engagement is vital to improving patient commitment to care plans as well as improving outcomes.

One way to engage patients and families across the care continuum is through the use of digital tools. Interactive technology can play an important role in engaging caregivers in the patient’s care by delivering education and information in easily understood, bite-sized pieces during a hospital stay. For example, a family caregiver can view short multimedia programs that help them understand more about the patient’s condition, the importance of taking prescribed medications and how to perform certain caregiving tasks.

At GetWellNetwork, we are excited to work with AARP to provide more resources to family caregivers. Instructional videos created by AARP and available through GetWellNetwork provide step-by-step information for caregivers, so they have the knowledge and skills they need to assist their loved ones with care.

Focusing more resources on family caregivers is an important step for GetWellNetwork and AARP. Educating and supporting family caregivers can support families in their care journeys. The right caregiver engagement technology can help hospitals support family caregivers at scale, which can improve clinical and financial outcomes.

GetWellNetwork at the Patient Experience Conference

GetWellNetwork will be at The Beryl Institute’s Patient Experience Conference in Dallas, Texas, April 3–5. Dr. Karen Drenkard, GetWellNetwork chief clinical & nursing officer, will join Dr. Susan Reinhard, senior vice president and director, AARP Public Policy Institute to discuss how to leverage technology and policy in support of family caregivers. Attendees will hear about the unique collaboration between GetWellNetwork and AARP that uses Interactive Patient Care™ technology to help patients and families as they navigate the healthcare system.


Source: Belden, Russonello & Stewart and Research/Strategy/Management, 2001. “In the Middle: A Report on Multicultural Boomers Coping With Family and Aging Issue”. AARP Research Report.