Category

Caregiver

Lessons from the Clowns When Going to the Doctor’s

By | Caregiver, Clinician, ePatient, Family man, Podcasts | No Comments

What can the clowns can teach us as patients and caregivers about relaxing, reading the room, figuring out what you’re there to do, and not ending up more stressed than you went in. Maybe even having a bit of fun. In this podcast we will speak with Jason Stewart, a clown at Boston Children’s and listen in on a working session I led at the National Caregiving Conference in Chicago this past November, entitled, Reading the Room and Yourself. Lessons We Can Learn from the Clowns When We Go to the Doctor’s Office.  Lessons from the clowns? Humor, humanity, failure. Reading the room. You are not alone. Read More

Setting Personal Health Goals

By | Caregiver, ePatient, Podcasts | No Comments

Episode Summary

We’re going somewhere with our best health journey. Destination: Personal health goals. If you’re well, stay well. If you’re acutely ill, get over it. If you’re chronically ill or dying, live the best life possible. There’s a difference between medical and personal health goals. Onward. Read More

Equity: more to achieve the same

By | Advocate, Caregiver, Clinician, Consumer, ePatient, Leader, Podcasts | No Comments

Diversity, equality, and equity are not the same. Diversity = the inclusion of differences. Equality = leveling the playing field. Equity = People have the same opportunity to achieve best physical, mental, and spiritual health no matter their social circumstances, biology, genetics, or physical environment. Bias impacts them all. Reaching for equity requires moving toward systems designed and built for inclusion and best health outcomes. Read More

Pillow, pills, poop, piss, and pain

By | Caregiver, Family man, Podcasts | No Comments
  • Blood, sweat, tears shared by two.
  • Helping one end and another begin.
  • A disaster that ultimately gives back.
  • Hearts clubbed by diamonds in spades.
  • We learned, we cried, we continued.

Episode Summary

Denise Brown of caregiving.com asked caregivers for their 6-word story about caregiving. Brilliant!

Welcome to Men Caregivers, Part 2, the Panel.  Part 1 was interviews with the panel, Ben Carter, Patrick Egan, Jolyon Hallows, and yours truly. All at the National Caregiving Conference in Chicago in November 2018.

Here are some of our 6-word stories:

  • We did it because we could
  • Pillows, pills, poop, piss, and pain
  • 20 years a caregiver. I adapted.
  • Key word isn’t ‘men’, it’s ‘caregiving’
  • Personal care? It depends? Mother, wife?
  • Managing the Dis Ease of Disease

Read More

Crossing Thresholds

By | Caregiver, Clinician, ePatient | One Comment

Before I officiate at a wedding, I meet with the couple. Getting married is crossing a threshold. There’s a moment before which you aren’t married, after which you are. What’s the difference, one moment to the next?  I’ve officiated at 26 weddings over 40 years. One time, the couple couldn’t say.  I didn’t officiate.

We continuously cross thresholds in our lives and in our journey to best health. A threshold is a beginning, a change – before we weren’t, now we are. We cross a physical threshold when entering a building, a room, a town… We cross a threshold when we enter a community, a relationship, an experience. We cross a threshold as we park our cars, enter a clinic, go for an MRI; when the doctor or nurse enters the room or responds to an email; when we call our insurance company; when someone asks, How are you? We cross a threshold when we feel a lump, hear a diagnosis, throw up, panic, feel pain, fall. Before we didn’t, now we do.

Crossing a threshold can present us with limitless possibilities. Who knows what might happen? Anticipation, excitement, hope. Some thresholds upset our sense of balance, our inertia. Why me? Distraction, hopelessness, annoyance, frustration, fatigue, rage  Crossing a threshold can energize or suck energy, depending on the moment and perspective. Read More

Best Spiritual Health, Dying

By | Caregiver, ePatient, Family man | One Comment

Sixteen years ago on November 18, 2002, our son, our brother, our friend, Michael Funk, died of metastatic melanoma at age 26. Mike said that he wasn’t born with a tattoo on his butt telling him how long he had to live.  What a gift.  Mike was a gift. His perspective about dying was a gift. One day we were sitting at the kitchen table talking about dying and superpowers. Mike thought that he and I had the same superpower: we both accept what is. Yup, he died young. That’s life. You open your heart and tragedy just walks right in. What’s the alternative? Closed heart? Not for me.

Welcome, my dear Health Hats blog readers, let me introduce you to the birth of Health Hats, the Podcast. We are here to empower people as they travel together toward best health. Best health includes physical, mental, and spiritual health. Today’s blog post and podcast are about Mike who found his best spiritual health over the last year of his life, as he died. Read More

Best Health at End of Life

By | Caregiver, ePatient, Family man, Podcasts | 6 Comments

Episode Summary

Best Health includes physical, mental, and spiritual health. Michael Funk, my son, died at age 26 on November 18, 2002, of metastatic melanoma. Mike found his best spiritual health in the last year of his life as he died. As Mike said, I wasn’t born with a tattoo telling me how long I had to live. This first episode of Health Hats, the Podcast, celebrates Mike’s journey through a montage of an interview with Mike several months before he died, a conversation with Bob Doherty who conducted that interview, and stories about my experiences with Mike. Listen as we try to make sense of this reality. Read More

2018 Healthcare Literacy in Research Conference

By | Advocate, Caregiver, Clinician, ePatient, Researcher | No Comments

I attended the tenth annual Healthcare Literacy in Research Conference in DC last week as a PCORI Ambassador. As is my habit, when I go to conferences I think, So what? How does this help lay people navigating health and illness?

What is literacy anyway? Ability to read and write? No, that’s not enough. Maybe it’s more. Keywords may include: understand, communicate, useful, culture. Understand whom? People understanding professionals? Professionals understanding people? Who communicates? People, communities, professionals communicate with each other. Communicate what? Useful knowledge about illness, health, or life? Or all of it? In a culture of doctors, nurses, hospitals, and clinics? OR culture of people and communities?

So, at the conference, I was looking for co-produced research (researcher and patient partners) about lay people, professionals, and communities understanding each other to increase useful knowledge about less illness and best health.

Here’s a sample of the best of what I heard and learned.

  • Family literacy programs: A call (again) for health literacy in partnerships with adult basic education: In search of ‘new oil’ and ‘new lanterns.’ Maricel Santos. The adult literacy world and public health need to spend more time in each other’s worlds. The goal is not to make things simple, but to make them understood. Literacy existing in the context of life helps literacy matter. Here is an article by Santos. Nice.
  • One of my favorite posters, Helping Consumers Choose and Use Health Care. Stephen Rush. Readable, large font, high contrast (unlike many posters which are small font, low contrast at a literacy conference). Very practical. Introducing Just Plain Clear Glossary (justplainclear.com)
  • Digital Literacy in an Urban Cancer Population: Who are we leaving out? Alison Petok, Sidney Kimmel Cancer Center, Thomas Jefferson University. My 2 cents: In spite of the literature saying that smartphone use is on the rise and that many use their phones for health, the distribution of internet access is variable across demographics and the proportion of those using a health app more than twice is low. This poster describes this variation in more detail and describes hosting workshops to increase comfort with using portals and health apps. My mom used to annoy me. I was her personal help desk. I suggested she find a 15-year old at church, pay $10/hour, for her personal help desk. She shifted from flip to smartphone and started using health apps. And stopped calling her cranky son.
  • Health Literacy in Health Systems: the association between health service providers health literacy, awareness, and attitudes toward health literacy promotion, and patient communication. Diane Levin-Zamir and Shirley Mor from Israel. Health literacy in the context of the settings of medical/patient relationship (hospital and clinic cultures), not the single focus on patient health literacy.
  • Health Literacy and Health Communication in the Social Networks of New Mothers. Tetine Sentell. Another presentation considering the context of health literacy.  In this case, social networks. Where do mothers get health information about their pregnancy? (Mother, mother-in-law, friends, colleagues) Sad to say, their husbands are seldom part of that social network.
  • Communication in the Dental Clinic: Describing the role of health literacy and nonverbal behaviors. Dafna Benadof from Chile. First, love seeing dental as a study area. Dental health is a great barometer of overall health, yet, similar to behavioral health, vision, and hearing, considered separate. Second, so much of health literacy is the written and spoken word. Gestures, facial expressions figure in as well. This study looks at the similarities and differences in nonverbals between patients and professionals.

I was disappointed that I saw few co-produced studies. The research was mostly about illness literacy of lay people in the cultures of doctors, hospitals, and clinics with notable exceptions such as those above. Slowly, we progress. A valuable conference. A good use of my time.

Photo by rawpixel on Unsplash

Related posts

Life literacy – If you can’t explain it to a six year old…

Health Literacy Month

Health Literacy – a Magic Lever

 

Pain Management Choices: One Person’s Point-of-View

By | Advocate, Caregiver, Clinician, ePatient, Informaticist, Leader, Researcher | No Comments

Pain and choices mix, but not too well. A sudden new pain requires professional attention and a pill – I gotta get over this. With severe chronic pain, I pray for some choices that I know might work. I want choices to prevent the pain – a routine. When the pain breaks through I want at least four things I can try. First non-drug that I can do myself (like heat, cold, vibration, meditation), then non-drug help from others, (say, massage, chiropractic), then less side effect drugs (Tylenol, cannabis…).  Finally, pocket therapy – something I’d rather not take, but it’s good to have in my pocket, just in case. So, that’s me in particular circumstances.

Almost everyone with chronic illness experiences chronic pain. Chronic pain in the US costs more than $600 billion annually in health care costs and lost worker productivity. I attended and presented at the Agency for Healthcare Quality and Research (AHRQ)-supported Patient-Centered Clinical Decision Support (PCCDS) Learning Network annual meeting (phew, a mouthful!) focused on decision-making in pain management and reducing opioid use. My job was to keep it real.

Please find the audio and slide deck here on my YouTube channel. It’s 44 minutes long with the Q&A portion. Here you can find my web resource page with other pain management resources. It’s a work in progress and will grow over time. Feel free to use any or all of it. I operate under Creative Commons. That means: please give me credit (attribution by Danny van Leeuwen/Health Hats). You can stop reading here or read a brief summary of the talk below. Read More