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Patient Engagement Tip of the Month

Geri Lynn Baumblatt, MAGeri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn


Showing all Blog Posts with tag: family caregiver View All Blog Posts
Posted: Wednesday, April 04, 2018

I'm not gonna lie to you Marge...What do we not tell patients and families?

By

Geri Lynn Baumblatt MA

It was Valentine’s day and I was at a party. The last few weeks things were good: my dad hadn’t been in and out of the hospital or ER. He was even doing well with his physical therapy and walking laps around the main floor of the house.
 
Around 9pm, my cell rang.
It was my mom calling to tell me dad broke his hip. She was with him in the ER now, but I shouldn’t worry or make the drive home right away. She was surprised when I became upset. She reminded me she’d  broken her hip a couple years earlier and recovered fine.
 
I explained that this same event for dad was different. His age and existing health issues this made it much more likely we could lose him in the next year and a half.
 
She said, “I’m so glad you told me. I had no idea.”
 
I could tell it changed the way my mom approached the situation: she worked hard to get him moving again and try to keep him out of the hospital. She was grateful to know there might be a real limit to the time we had left with him. I still wonder:
 
If I hadn’t told my mom about what a hip fracture meant for his life expectancy, would anyone have explained it?
 
Patients and families can engage better when they know the stakes.
Because clinicians and others on the healthcare team understand the meaning of a new event or diagnosis, it’s easy to forget patients and families often don’t. What does the trajectory or progression of their condition means for them? How many people with diabetes understand it’s not just chronic, but progressive?
 
Other times it’s easier to say nothing.
In my family, when someone won’t say what’s going on, we often quote a line from the Simpsons. Marge catches Homer inexplicably hauling a bunch of bowling balls and asks what’s going on, he replies:
 
“I’m not gonna lie to you Marge…”  and walks out, saying no more.
 
 
(From "Homer vs. the Eighteenth Amendment”, Season 8 of The Simpsons).
 
But people can’t connect dots they don’t know are there. I remember trying to figure out what to say when focus group participants with stage 3 kidney disease told us they weren’t getting worse and didn’t need to think about treatment options like transplant, dialysis, or medical management.
 
This wasn’t an outlier group.
Research done with people with advanced chronic kidney disease (CKD) found that for many, their first visit with a nephrologist was the first time they were told they had CKD. Or if they had been told, they didn’t understand it as serious news at the time — so they were often shocked by their diagnosis.1
 
The study also found nephrologists struggle to explain this complex illness and avoid talking about the future  Another study found factors like prognostic uncertainty, wanting to instill hope, and worries about emotional backlash impacted discussions about conservative management for older CKD patients.2
 
On the patient side, people want information so they can make plans and make informed treatment decisions. Related studies found many older CKD patients are never given a prognosis. Unfortunately, many elderly CKD patients then don’t engage in advance care planning.3
 
This happens across healthcare. It may be more challenging with conditions like CKD — since its a silent condition, people don’t have context for it and often don’t react to a CKD  diagnosis (in good and bad ways) the same way as they do to something like a cancer diagnosis.
 
How can we ensure people understand what events, diagnoses and prognosis mean for them or their family member so they can better engage in their care?
 
Look for Disconnects
Look for places where there are disconnects or “non-adherence.” Is there something people frequently don’t do or keep doing?  It’s often a sign we’re taking some key piece of knowledge or understanding for granted.
 
Repeat the Message
Especially if it’s a new diagnosis, emotionally people may not take it in the first time, even when it’s explained well with empathy. How do your hospital or office follow-up with people afterward to ensure their family caregiver understands? How do you ensure the message is repeated when people come back in for any follow up?
 
Peer Support
People who have gone through or are starting to deal with the same thing can also help  people understand the situation and learn to cope with it. Connecting people with others can help them wrap their brain around things.
 
How do you ensure candor and understanding? Share your best practices.


Catch up with Geri
 
April 9-10 at the Lown Conference in DC
 
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt: 
https://www.eventbrite.com/e/chicago-participatory-medicine-reception-tickets-44352929807



1. Schell JO, Patel UD, Steinhauser KE, Ammarell N, Tulsky JA. Discussions of the Kidney Disease Trajectory by Elderly Patients and Nephrologists: A Qualitative Study. American journal of kidney diseases. 2012;59(4):495-503. doi:10.1053/j.ajkd.2011.11.023.
2. Ladin, K, Pandya, R., Kannam, A, Loke, R, Oskou, T, Perrone, RD, Meyer, KB, Weiner, DE, Wong, JB. Discussing Conservative Management With Older Patients With CKD: An Interview Study of Nephrologists. American journal of kidney diseases. Published online: 3 February, 2018, doi: 10.1053/j.ajkd.2017.11.011
3. Ladin, K., Buttafarro, K., Hahn, E. Koch-Weser, S. Weiner, DE. “End-of-Life Care? I’m not Going to Worry About That Yet.” Health Literacy Gaps and End-of-Life Planning Among Elderly Dialysis Patients. The Gerontologist, Volume 58, Issue 2, 19 March 2018, Pages 290–299, doi: 10.1093/geront/gnw267

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

 

Tags: patient engagement, communication, family caregiver, patient education, patient
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Posted: Tuesday, March 06, 2018

Putting Family Caregivers on the Map

By

Geri Lynn Baumblatt MA

Here’s question: when a patient comes in for an appointment, a test, procedure, to the ED, or is diagnosed with a new condition — how many patients are in the room?
 
If a family caregiver or care partner came with them, there’s probably at least 2. We now know that informal caregivers don’t just have problems like poor sleep and depression, but are at risk for a large range of health issues: injuries, social isolation, substance abuse, strokes, heart attacks, chronic conditions, and increased frailty. They often skip their own medical appointments, stop eating well, or getting regular exercise, and they’re often stressed. Studies show that years of caregiving stress can impact their immune systems for up to 3 years after caregiving ends,1 take many years off their life,2 with a number of caregivers pre-deceasing the person they care for.
 
The more I think about it - because we can know when caregiving begins or escalates, it’s a discrete moment in time when we can both give the caregiver the support and resources they need to prevent serious health issues and help ensure patients get good care and support at home. 
 
Who me?
Unfortunately, people often don’t self-identify as family caregivers. And they don’t ask for help, because they don’t realize how their life is about to change. I work in healthcare, and it took me a few years to recognize that I was also a caregiver for my dad — let alone that it was having an impact on my health and well being.
 
 
How might we better understand who cares for the patient, and who cares for the caregivers?
 
 
Map the Caregiver Ecosystem
Talking with people is helpful, but the Atlas of Caregiving found that when you have people draw their caregiving situation, it adds dimension and details they often haven’t thought about. This can reveals surprising insights — and it’s a way to introduce the topic and help people identify as a “caregiver.” It can help normalize it. After all, people often assume the chaos they experience with caregiving is unique to their family.
 
This quick CareMap process creates a visual and for them and an artifact to share with the healthcare team that diagrams their ecosystem:


•   Do they live with the patient, nearby, or do they caregiver from a distance?
•   What does their support network look like?
•   What’s their relationship to the medical caregivers?
•   Are there others in their network who aren’t being leveraged and could help provide support?
 
CareMaps can be done with paper and pencil or with a new, free desktop app. And they provide surprising insights. A CareMap for a woman who had been caring for her husband for many months revealed she was also caring for a disabled child at home. The care team had no idea, and realized when they were asking her to bring him for appointments or other tasks, they were creating other challenges.
 
CareMaps are a snapshot in time.
Have people update their CareMap over time. This can also provide valuable insights. I’ve spoken about my own distance caregiving experiences for many years and only after drawing my own CareMap did I realize that my mom’s best friend (who is a fierce advocate for her locally and often gives her rides, etc.) usually goes away for the winter. But we didn’t recognize, let alone plan for this.
 
I also realized my mom, who is in her 80’s, is a key caregiver for many of her friends. So when she’s out of commission, it’s nontrivial for many other families who rely on her to look in on their parents or aunts in her senior residence. But I also hadn’t thought about how much of her identity and sense of worth comes from the care she gives.
 
Watch One, Do One…
A couple short videos can quickly walk you through how to create a CareMap. Do one, and see what you learn. Then try it with the informal caregivers you work with. 
 
 
 
Catch up with Geri
 
April 9-10 at the Lown Conference in DC
 
April 17:
•   Catch her in a panel on family caregivers and care transitions with MaryAnne Sterling, Danny vanLeeuwen, and Amy Cain at the Beryl Conference in Chicago.
•   Also on April 17: join Geri, MaryAnne and Danny for the Chicago Participatory Medicine Reception in the Living Room at the Chicago Hyatt.
 
 
 
1.      Glaser, J. & Glaser, R."Chronic stress and age-related increases in the proinflammatory cytokine IL-6.” Proceedings of the National Academy of Sciences, June 30, 2003.
 
2.      Epel, E.S. et al, From the Proceedings of the National Academy of Sciences, Dec 7, 2004, Vol 101, No. 49.

Geri Lynn Baumblatt MA, For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

Tags: communication, family caregiver, experience, patient
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Posted: Tuesday, February 13, 2018

Connecting the Social Dots

By

Diana Deibel


We are social beings. And social connectedness makes us feel safe so that we can relax, sleep, grow, and maintain our health. When people are isolated from others, research shows this leads to a variety of health issues including depression, being ill more often, and having longer-lasting illnesses. 

But it’s a personal and sensitive topic, so people are often don’t volunteer that they’re isolated. People can become isolated at any age for a number of reasons and life changes -- for family caregivers of any age: their social network contracts and as they focus on their family member. And young adults who are heavy users of social media often feel socially isolated. Now that we know social isolation is an underlying contributor and cause of un-health — how might we address it?
 
It started with one exercise class...
“Karen” age 55, takes care of her husband “John,” who has Parkinson’s. For both of them, it became hard to go out, to see friends, and even good friends came by less. Both Karen and John became more isolated at home. John’s doctor recommended a seated exercise class. They went, and not only did it help his muscle tone and function, but he met others coping with Parkinson’s, and she met other care partners. Soon they were finding other classes and going to 3, even 4 classes a week. Would they have gone to a support group? Maybe, but certainly not as frequently. And it was more natural social connection, and less stigma of needing support.
 
How can clinicians and care providers address social isolation?
While it feels like there’s not enough time in the day to really get to know patients, just asking 2 or 3 questions at intake can create connection, insights and help identify socially isolation.
 
Tell people your office wants to continue to know their patients better, and try asking:
    1.     What are your favorite activities/hobbies and how often do you get to do them?
    2.     Who do you most look forward to spending time with?
    3.     Do you volunteer anywhere or are you interested in volunteering?

You could also ask a new question each time patients come in — or have them fill out a 3 question survey in reception. This can help you suss out who is in the patient’s social circle (and potentially circle of care) as well as what they care about to proactively make it part of their care plan.
 
Personalizing social interactions
Does your patient garden, cook, read, play cards or love old movies? Any of these can be leveraged for new social connections. Social workers, websites, the library, or religious organizations often have lectures, book clubs, cooking classes, or volunteer opportunities. No one can be versed in all the local goings-on, but knowing a few organizations that provide free social gatherings can help you know where to point patients, without geography or cost becoming a barrier.
 
Also, keep in mind that people usually need some help or a good excuse to show up the first time. After all, you need to feel safe to socially engage. So just like you’d help someone set a health goal, action plan this with them. Could a friend or neighbor go with them? Might another patient with similar interests meet them or start a book club with them? Do they need help figuring out how to get there?
 
Volunteering
Volunteering is a great way to get people out meeting others in the name of doing good. It’s not intimidating to show up; and people feel needed and valuable. And, as a bonus: it’s one of the top things that makes everyone happy. A national survey by the UnitedHealth Group found
 
    •       76% of people who volunteer feel healthier
    •       94% say it improves their mood
    •       25% say it helps them manage a chronic condition, stay active, and takes their mind off of their own problems
 
Group appointments and classes
These are another great way to bring people together in the name of health and have them meet, interact, and support each other. What about hosting a stress reduction or better sleep class? New friendships grow out of groups - and people feel they’re not the only ones dealing with a chronic condition or challenge.

How will you help address social isolation with your patients? Share what you try or are thinking of trying. 



Geri Lynn Baumblatt, MA: For the last 20 years, Geri has worked to help people understand health conditions and procedures, orient them to their diagnoses, make more informed decisions about their care, and partner with their care teams.  She oversaw the creation of the Emmi program library, and she regularly speaks and serves on patient engagement, patient experience, health literacy, shared decision making, health design, family caregiving, and heath communication panels for organizations like AHRQ, the Brookings Institute, Stanford Medicine X, and the Center for Plain Language. She serves on the editorial board for the Journal of Patient Experience, is on the board of the Society for Participatory Medicine, and published a chapter in Transformative Healthcare Practice through Patient Engagement (IGI Global). She currently consults on patient engagement, family caregiving, and health communication. Follow her on Twitter @GeriLynn

 
Diana Deibel is a Senior Voice UX Designer who has worked for years in the healthcare space, crafting connections between patients and clinicians and helping motivate patients on tough topics. You can find her on Twitter, ready to chat @dianadoesthis



Tags: patient engagement, family caregiver, engagement, experience, listening, patient
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Posted: Wednesday, June 14, 2017

When Side Effects Get in the Way

By

Mia DeFino

Patients, clinicians, and healthcare organizations all want people to feel better so they can live their lives to the fullest. Unfortunately, the side effects of treatment can get in the way.
 
Mia’s Story: 5 meds, lots of side Effects
When first diagnosed with complex regional pain syndrome (CRPS) Mia’s physiatrist prescribed five medications. Not surprisingly, it was confusing which medication was supposed to help with what symptoms. By the time Mia came back the following week she was more miserable: agitated and unable to sleep, she had a rash on her face, and was sick to her stomach.
 
Turns out, she was sensitive to a lot of medications. Although she wanted to be a “good” patient, she couldn’t keep taking the meds. But her doctor was hesitant to make any changes and didn’t offer alternatives. Mia left feeling scared, frustrated and like the side effects she experienced weren’t being taken seriously.
 
Fast forward 3 years:
Mia was diagnosed with chronic migraines. She got relief from medication, yet it also made her dizzy, nauseous, and tired. This time the side effects conversation was different. Her neurologist worked with her through many rounds of medications and figured out if she took them as needed just on really bad days it helped her avoid the side effects, while still providing pain relief.
 
Geri’s story: More than a nuisance
As a family caregiver, Geri had a similar experience when medications her dad was on in the last years of his life caused his skin to thin and itch.The itching drove him crazy and kept him and those taking care of him from getting decent sleep. As a family caregiver, it was frightening to scratch his back, hoping to give him relief but not tear his fragile skin. When the family brought up the itching with his team, it was discussed as more of a nuisance -- the cost of treating his conditions.
 
Side effects are challenging, especially when patients take more than one medication. But even with a single medication one study that looked at statin side effects, found that 87% of patients reported telling their physician about side effects, and unfortunately physicians often rejected a possible connection to the medication. What would you do? Keep taking the medication ...or become “non-adherent”?
 
Changing the Conversation
It doesn’t take much to change the tone of the conversation and affirm a symptom may be due to a medication and that it’s a real issue. Even when complaints don’t fit into documented side effects, if we want people to engage in their plan of care, working this out can make all the difference to their peace of mind, quality of life (QOL), and participation. Letting people know you’ll work with them to find the right treatment where their QOL is improved builds trust.
 
Patients can also report side effects to the FDA on MedWatch. This can also help people know they’re contributing to a better understanding of side effects for everyone.
 
People want to feel better and it’s hard when treatment makes them feel worse or causes a new problem. People don’t like to challenge their care team or seem like complainers, so by the time they tell you about a side effect, it’s probably really bothering them.

Mia’s story: another 3 years later
Mia found that changes to her diet and lifestyle could help minimize the number of medications she needs to take. At Mia’s first appointment with her new primary care physician, one of the first things they talked about very directly is: Side effects. As Mia explains: I shouldn’t have to experience more symptoms to feel “better.”

Mia DeFino, M.S. Mia has personal experience with chronic diseases and managing her health with multiple healthcare providers, recognizing the need for translating complex ideas in medicine and healthcare for multiple audiences. She supports people dealing with complex chronic diseases through finding physicians and resources in their area. She’s an independent medical and science writer in Chicago www.miadefino.com. @mia_defino

Tags: communication, personal healthcare, family caregiver, empathy, pain management, patient education, experience, healthcare
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Posted: Tuesday, January 24, 2017

Do Your Patients Know What's in it for Them? Articulating the Value of Patients First

By


By Geri Lynn Baumblatt, MA & Frieda Wiley, PharmD, BCGP, RPh

When Frieda first began practicing as a pharmacist in managed care, she called a patient (we’ll call her “Monica”) to conduct a review of her medications. Monica was on the verge of hanging up until Frieda asked, “Have you recently been experiencing any bleeding or bruising?”
 
Monica paused and said, “You know, come to think of it, my gums do bleed whenever I brush my teeth. Could one of my medications be causing that?”
 
Frieda knew she’d recovered from what would have been an epic patient engagement fail. Instead, she used that 15 seconds to establish credibility, value, and concern, but most importantly, to get at why a medication review was meaningful for Monica. She picked a common side effect that would instantly grab Monica’s attention. Otherwise, the call might have been seen not as a service, but a nuisance — a call to update records. Or Monica may have suspected the call was gathering information to see if her insurance should keep paying for her medication. But a “medication review” didn’t immediately sound like something that would benefit her.
 
Articulating Value Up Front
We often assume patients and families know why we’re asking them certain questions or to do certain things: We repeatedly ask them about pain levels, tell them to avoid salt if they have heart failure, or recommend caretakers rotate bedridden patients frequently. But the value we recognize and take for granted is often not immediately obvious to patients, and that makes it even more important that we, as provider, articulate those benefits up front.
 
Even when a patient is admitted and we ask them to repeat and confirm information, patients often don’t see the value. Instead, the repeated questions can seem annoying or even incompetent. But opening the conversation with, “To make sure we’re keeping you safe, I’m going to re-ask you a few questions…” can shift patients' reluctance to cooperation and trust.
 
How can we present ourselves as approachable?
There is no cookie-cutter approach to establishing rapport. A tactic like the side effect question can quickly engage a patient who otherwise might not see a medication review as beneficial; but there are other ways.
For example, whenever a patient mentions a hobby or activity, take a few seconds to document it. At the next visit, follow up with them about that personal detail. “Last time I saw you, you were spending a lot of time in the garden; how is it looking now?” Better yet, relate it back to their health. “Last time I saw you, you were doing a lot of gardening, but your arthritis was getting in the way. How is the garden looking? Are you able to spend more time working on it now that you started the new medication?”
 
Reframing this question into a more insight format kills two birds with one stone. Not only can a provider further improve patient rapport by demonstrating compassion and insight, but it creates an opportunity to develop a more open and fluid dialogue. And in a world where providers are pressed for time to connect, this can go a long way.

Tags: patient engagement, communication, family caregiver, empathy, health literacy, expectations, engagement, experience, healthcare, listening, patient
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Posted: Tuesday, November 29, 2016

A Tale of 2 Daughters: Connecting the Dots for Family Caregivers

By

Co-author: MaryAnne Sterling

Family caregivers are the front lines of healthcare and currently 90 million+ strong. Identifying and training the care partner or family caregiver is essential. However, an important piece of this puzzle is missing -- connecting family caregivers with the support they need both inside and outside of the healthcare system to effectively manage the care of their loved one. >>>


Tags: patient engagement, family caregiver
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Posted: Saturday, October 29, 2016

Highlights from the "Clarity is Power!" Health Literacy Month Series

By
The end goal of health literacy is to empower patients, families, communities and clinicians with clarity and confidence to engage in care. Here are just a few highlights from the Clarity is Power series. 
See more great articles from the 2016 Health Literacy Month Series.
 


Tags: shared decision making, family caregiver, health literacy, patient education
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Posted: Thursday, September 24, 2015

Time to Give Up the Car Keys?

By

Engaging Patients & Families in Conversations about Aging & Driving

Nate O'Keefe
Co-author Nate O’Keefe (featured left) is the co-founder and CEO of Roobrik, a Durham, NC-based startup that builds online tools designed to help older adults and their families make informed care decisions. Nate has spent more than 10 years with companies including Modality, Epocrates, and AthenaHealth creating products that deliver high stakes health and care information to clinicians, students, patients, and family caregivers.


When families of aging parents ask clinicians and caregivers: “Should mom keep driving?” you know it’s a loaded question. You may feel like you’re being asked to be the bad cop. How do you make recommendations that minimize risk for your patient and other drivers and pedestrians?  How do you help families think through the trade-offs between safety and independence?
 
It can be even more difficult to broach the subject when health conditions arise that make driving riskier and you’re NOT asked about it. For most of us, driving was our first real taste of independence and it defines our ability to be productive, social, and engaged in society.  How do you steer someone down the path of cutting back or stopping while helping them understand there are alternatives (and even benefits) to giving up the keys?
 
For those of you who don’t talk with families about driving as part of your routines, or who still struggle with difficult situations, we offer three resources:
 
  1. Your clinical peers
For many patients, an office visit is not sufficient to fully evaluate driving ability, and without an accurate picture of ability, you risk having your patient either stop before they need to or continue for too long. Here’s where an occupational therapist can be your best friend. In a standalone practice or as part of a driving clinic, OTs can do functional clinical and road testing to assess ability and recommend modifications to make driving safer. Find an OT-CDRS.
 
  1. Best practices
In 2010, the AMA and NHTSA collaborated to produce the Physician's’ Guide to Assessing and Counseling Older Drivers. This free publication is extremely comprehensive and highly practical, covering assessment, rehab, medical conditions, state laws, and much more, with frequent sample scripts to use for difficult situations and conversations.
 
  1. Tools to engage patients & families
    This issue often marks the transition from doctor-patient to a doctor-patient-caregiver relationship. All of the sudden, you’re not just engaging directly with the patient but also their concerned family. After all, the family is often responsible for carrying out the decision and supporting the patient through this transition. In addition to traditional resources like the AARP, free interactive tools to assess driving ability like the one developed by Roobrik can help families assess the situation and make a plan for limiting or stopping driving.
 
Remember, this issue if often the beginning of an important transition. Driving safety presents an opportunity to start a dialogue about changing needs and to put a process in place that encourages open communication around not just health and wellness issues, but the care issues that will begin to define this new phase of life.
 
 
October is Health Literacy Month on EngagingThePatient

Hear from patients, family caregivers, clinicians, health literacy researchers, patient educators and others about the intersection of health literacy and transitions every weekday in October. Visit engagingthepatient.com to read the articles or to subscribe to the blog.
 
 
 

Tags: patient engagement, communication, family caregiver
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Posted: Thursday, May 28, 2015

From Across the Hospital Bed Boundary

By
Touch is comforting and reassuring. In some settings it’s been shown to reduce patient anxiety and length of stay.* Yet, a strange thing happens when someone in your family is in a hospital bed. Once there, attached to machines and IV lines, despite wanting to comfort and reassure them, they seem physically out of bounds. It often seems like a hand on their shoulder or holding their hand is the only safe contact.

Despite growing up and spending a lot of time in hospitals rounding with my dad, when he was the one in the hospital I was surprised how awkward it seemed to touch him in any way.

Then, sitting there feeling fairly useless, I watched my sister-in-law (a resident at the time) come in, and with gloved hands, gently rub away the dead, flaking skin on his arms and legs. Then she rubbed his feet. It was probably the best hour of his hospital stay. He may have even forgotten he was there.

Why is it so intimidating for families to touch someone once they’re in that bed? I know I was afraid of the machines, by how delicate and friable his skin was, and by the healing wounds and scabs on his legs. I wasn’t sure what was safe.

Even at the worst moments, families are often afraid to breach the clinical boundary of the hospital bed. In the movie Love Story, Ali MacGraw, lying in bed, terrified of dying, asks Ryan O’Neal to hold her. (For a 70’s flashback, see the clip here.) He awkwardly tries to lean over and hold her from the bedside until she says, “No, really hold me.” So he finally climbs into the bed with her.

The fear of touching patients in bed plays into the fear families often have about taking patients home to care for them. If we proactively spend more time helping family members understand what’s okay, whether it’s knowing if it’s all right to rub a patient’s back or showing them how to care for wounds, we can help build their confidence to care for family members at home. Then it won’t seem like such a sudden shift from sitting by and watching care to being responsible for giving care and literally being more hands on.

And in the hospital, patients and families may feel less like they’re staring at each other across an unspoken borderline.

               
* MacIntyre, B. et al. Altern Ther Health Med. The efficacy of healing touch in coronary artery bypass surgery recovery: a randomized clinical trial. 2008 Jul-Aug;14(4):24-32. Retrieved May 23, 2015 from: http://www.ncbi.nlm.nih.gov/pubmed/18616066

Tags: family caregiver
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Posted: Tuesday, September 30, 2014

Asking Questions, Not Just Giving Information: Shared Decision Making is Relational

By
Gonzalo BacigalupeGonzalo Bacigalupe is Professor of the Master of Science in Family Therapy Program and the PhD in Counseling Psychology, College of Education & Human Development at the University of Massachusetts Boston. He is President of the American Family Therapy Academy. Bacigalupe is co-principal investigator of a Patient-Centered Outcomes Research Institute Pilot research project: Influence and evidence: Understanding consumer choices in preventive care.


Because the benefits of cancer screening and its usefulness for a wide group of patients are uncertain and the harms may outweigh the potential benefits, doctors and patients need to engage in shared decision making (SDM). And while this sounds straightforward, it’s often challenging.
 
We’ve both been involved in developing SDM tools to guide breast and prostate cancer screening, Gonzalo with a focus on Latino patients. 
 
Most SDM research is based on the idea that patients make individual decisions. So the focus has been on understanding how patients acquire and make sense of information that’s often packed with statistical, epidemiological, and probabilistic data. And we ask how well people comprehend it. 
 
Missing from this equation is how many people operate not just as individuals but also as one person within a net of family and community relationships. Most Latino patients talk through these decisions not just with their close relatives, but also with their extended family and other significant members of their network. Decisions about prevention, diagnosis, and treatment are not just in the working of their individual minds or a cognitive process, but located in the ecology of relationships.
 
For vulnerable patients, besides having more difficulties at making sense of complex data, the question of how we explore their approach to decision making is central and requires cultural humility.
 
So what can clinicians do?
Ask about patients' social and cultural context and be curious about how they make sense of healthcare decisions. These questions are an example of how we may capture the rich context and story that may play a pivotal role in how the patient participates in the decision making process.
 
I know this is a lot of information, if you were to discuss this with a family member or friend, what would be the outcome of the conversation?
 
What other information do you need to help you make a decision you feel comfortable with?
 
How would these options affect you and your family’s day-to-day life and their ideas about you?
 
The epidemiological or probabilistic data, no matter how attentive is to the literacy level of a specific community, will be meaningless if we do not understand who and what plays a significant role in complex healthcare decisions.

Tags: communication, shared decision making, family caregiver
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Posted: Wednesday, May 28, 2014

When Caring for the Family Reduces Patient Stress

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What do patients experience as they drift in and out of awareness in an ICU?
 
Recently, a couple of long-term ICU patients both described how even when they weren’t fully conscious, the mood of the staff as they moved in and out of their room was still apparent to them. They could tell if people were present or smiling, and how even the one-sided conversations staff had with them were meaningful.
 
One patient also described how he had a very strong sense of his parents’ stress as they kept watch by his bed and how it reduced his stress to hear how the staff was caring for his parents.
 
It's impossible to always be “up,” but care, hospitality, and mindfulness of close family and friends may reduce patient stress, even when we think they’re not aware. After all, while everyone is worried for the patient, their worry is often for their partner and family.

Tags: patient engagement, communication, family caregiver
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Posted: Monday, April 21, 2014

Looking Out for Family Caregivers

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A hospital out west recently surveyed people with pancreatic cancer and their family caregivers about their emotional highs and lows over the course of treatment. While the graph of the patients’ emotions looked like a fairly intense rollercoaster ride, the graph of their family caregivers' emotions actually showed higher highs and lower lows.
 
To understate the obvious, family caregivers take on a lot -- not just the physical care, but the emotional stress. And, as this small survey showed, caregivers may actually experience more hope when things go well and more stress and depression when they don’t.
 
More and more hospitals have started offering caregiver classes to try to prevent burnout and help prepare people for what lies ahead. Family caregivers often don't realize what they're taking on and how it will affect their social, emotional, and even physical health. At first, it's sometimes hard to see that it can quickly become a challenge just to leave the house for a few hours to run errands or get a good night's sleep, let alone deal with any mood swings or memory or dementia issues.

These types of caregiver classes can also serve as social support and a way for them to meet others to talk with. What is your hospital doing to help prepare family caregivers so they don't end up a casualty of caregiving?

Tags: family caregiver
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