Empowering Caregivers: Welcoming them to our Health Activist Community

More than 65 million people provide care for loved ones, averaging 20 hours a week. But, like many words in the health world, “caregiving,” carries around a vague set of meanings and connotations. As I write this, spellcheck is telling me that it isn’t a word (though neither is “spellcheck”) but it is a word and, more importantly it is a whole entity. It’s an act, a title, a career path, and a community of often under-recognized members of healthcare. Let’s bring caregiving into our conversation about Health Activism today.

First, let’s take a look at the official definitions for the term caregiving:

The Sloan Foundation tells us, “Caregiving is the act of providing unpaid assistance and support to family members or acquaintances who have physical, psychological, or developmental needs.”

The AARP tells us a bit more: “Person responsible for meeting the physical and psychological needs of an infant, child, or dependent adult.”

And the legal system notes that an “[i]nformal caregiver is a family member or a natural person who aids and supervises the daily cares of a disabled person.”

Who are these caregivers? The majority are family members and common examples include:

  • Parents taking care of a child who is mentally or physically ill.
  • Children taking care of an aging or sick parent.
  • Adults caring for other relatives.
  • Increasingly, there are grandparents acting as caregivers to their grandchildren.

Now let’s think about caregiving in our terms. Words like “support, needs, supervising, care” speak to our e-patient-turned-Health-Activist community. But nowhere in this caregiving research have I come across the language of “empowerment” with regards to caregiving. This is harrowing. Are caregivers empowered? Why isn’t this option being discussed? Most articles, studies, and conversation centers around the immense population of caregivers who suffer from depression and anxiety (a victory of sorts for combating stigma related to mental health) but nowhere does it discuss the alternative – the strong, self-educating, sharing, interactive caregiver. Can we turn the conversation around and commend caregivers in a way that encourages Health Activism or pride in their advocacy? I hope so.

Proof that caregivers are our peers? This 2011 Self-Identifying Caregivers Survey says, Over 90% of family caregivers become more proactive about seeking resources and skills they need to assist their care recipient after they have self-identified.” Similarly, 83% of self-identified family caregivers believe their self-awareness led to increased confidence when talking to healthcare professionals about their loved one’s care.” Sounds familiar, doesn’t it? These are integral traits of Health Activists.

Additionally, it probably comes as no surprise, but the relationship between women and caregiving is substantial. See if any of this information from the Family Caregiver Alliance relates to our Health Activist community:

Within our complex system of long-term care, women’s caregiving is essential in providing a backbone of support...Women provide the majority of informal care to spouses, parents, parents-in-law, friends and neighbors, and they play many roles while caregiving—hands-on health provider, care manager, friend, companion, surrogate decision-maker and advocate.5

Many studies have looked at the role of women and family caregiving. Although not all have addressed gender issues and caregiving specifically, the results are still generalizable to women because they are the majority of informal care providers in this country. Consider:

  • Estimates of the percentage of family or informal caregivers who are women range from 59% to 75%.6, 7
  • The average caregiver is age 46, female, married and working outside the home earning an annual income of $35,000.8
  • Although men also provide assistance, female caregivers may spend as much as 50% more time providing care than male caregivers.9

What if we replaced the word “caregiver” with “Health Activist” or “Parent Health Activist”? As you may know, the majority (upwards of 75%) of our own Health Activist community is female. Does this change the way you consider caregiving? How can we help empower this community of peers? According to this article by Anthony Cirillo, only 25% of caregivers turn to the web for support and community. Can there be a tailored e-patient movement for caregivers?

How can Health Activists come together to recognize those who are caregivers or caretakers and welcome them into our discussions about empowerment?



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