A caregiver is [not] a caregiver, is [not] a caregiver

When my mother was dying I was a long distance caregiver.  My mom made her own decisions, shared them with us, sought advice from me, asking me to research meds and treatments, wanted help with scheduling, wanted me to attend some of her appointments with her (mostly by phone) and gave me access to her electronic health record. Our family had open and dynamic communication. I was the health coordinator, my older sister helped manage business, my younger sister was her companion. These roles evolved over the years and solidified as our mom declined.

In another family, the parents were a dysfunctional unit with one parent verbally abusive to spouse and children.  Little or no communication occurred between the parents and the many children. The matriarch died, leaving the father unmoored and slightly demented. The children were upset to learn about their declining father, could not communicate among each other, and could not organize or allocate caregiving.

In yet another family, the son was the caregiver for his father.  The son researched everything, arranged everything, and made all the health decisions for the father.  I don’t know what the father thought about this. I could find no opening to discuss it. The father was uncomfortable without the caregiving son.

I have a special place in my heart for the more than 93 million family caregivers in the US. Fortunately, or unfortunately, depending on your perspective, attention for caregivers has increased. Maybe because the changes in health care payment incentives has led to reducing readmissions and emergency department use. This reduced utilization pushes hospitals and clinics to focus on caregivers. But as community health and care management professionals have long known every family has unique characteristics and every person and their caregiver is unique. My health advocate hat tells me that I need to better understand broad categories of caregiver/family dynamics to be able to respond and support caregivers.

I recently joined the American Academy on Communication in Healthcare and attended a webinar about Family Caregiver Communication in Oncology given by Joy Goldsmith @joypalliative at the University of Memphis. She describes four caregiver communication types: Manager, Carrier, Partner, and Lone caregivers. Manager caregivers lead patients by utilizing extensive medical knowledge, whereas Carrier caregivers were led by patients and described tireless acts to maintain the family and avoid difficult conversations. Partner caregivers facilitated family involvement and open communication on a variety of topics, while Lone caregivers focused solely on biomedical matters and a hope for cure.

Goldsmith, J., & Wittenberg, E., Small Platt, C., Iannarino, N., & Reno, J. (2015). Family caregiver communication in oncology: Advancing a typology. Psycho-Oncology. doi: 10.1002/pon.3862.

Whether you are a person with a chronic condition, a caregiver, a clinician, a health technology professional, insurer, policy wonk, or investor, understanding the dynamics of family caregiving will impact your success and effectiveness.

Danny

About Danny

2 Comments

  • Anonymous says:

    Maybe you could come up with 3 or 4 questions to routinely give all ‘family’ members (broadly defined, if appropriate) and then enter into EHR for data, for interested ‘providers’ and for patients to see. The questions would elicit each person’s individual roles and perspectives related to patient caregiving and/or involvement.

  • Anonymous says:

    Excellent starting point for ANY health professional! Keep the stories coming! They inspire.

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