Family caregivers play a significant role in healthcare, tending to the needs of someone with short- or long-term limitations due to injury, illness, or disability. As of 2023, the CDC found that there are 53 million adults in the US providing care for a spouse, elderly parent or relative, or special-needs child. This can be especially challenging for those who are both raising their children and caring for their parents.
Caregivers provide loved ones with assistance with a variety of daily activities like eating, bathing, dressing, taking medications, transportation, as well as offering companionship and emotional support.
The Caregiver Perspective
Being a caregiver involves navigating a range of challenges, from isolation to financial strain, time management, lack of privacy, and emotional stress and burnout.
Let’s listen to a 41- to 45-year-old woman describe her experience care and some of the challenges she faces.
Decoding the Patient Voice
Understanding the patient voice is at the heart of what we do at inVibe, which we approach holistically by analyzing what is said, how it’s said, and how it sounds.
Looking first at what she is saying and how, this patient conveys the difficulty of balancing caregiving activities with taking care of her own needs. She communicates this by repeatedly switching between descriptions of tasks for caregiving and tasks for herself. For example, “giving as much time as I can to all those people” while also needing to schedule her own doctors’ appointments and taking her own medication. She contrasts budgeting time and resources “to care for my loved one” and being able to “pay my own bills.” In this way, she illustrates the balancing act of providing care for another as well as herself.
She identifies resources that she wishes were available to help alleviate these challenges, including better communication between providers to ensure there is a holistic care plan and alleviate the logistical burden of having to make “several different phone calls” to coordinate everyone. This implicitly conveys her desire to both improve her loved one’s care as well as her own experience providing care.
Focusing on how it sounds, she describes her experience with negative emotionality (‘valence’), which emphasizes how challenging it is to care for herself in addition to caring for others. The negative valence hits its lowest points when she is discussing time management, taking care of her own needs, paying her own bills, and coordinating care. This highlights the frustration she feels and the lack of resources available to support her with these challenges.
Taking the ‘what’ and ‘how’ together, this response conveys how challenging it can be to be a caregiver, especially as they face the complex struggle of balancing their own needs with that of their loved ones. Listening to and understanding the voices of caregivers can enable us to design more effective and empathetic ways to not only support them, but also to empower them.
Simple, Systematic, Scalable
Our Listening Platform makes it simple for patients to speak with us about their experiences in an open and authentic way and easy for you to engage with their perspectives directly.
If you’re interested in hearing from more patients like this one so that you can gain insight into their experiences, beliefs, behaviors, and desires, schedule a demo with us today and see for yourself.
