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Pecha Kucha: A Special Families and Health Blog Series PART 2

Posted By Amy Romain, Tuesday, September 11, 2018

This is the second in a four-part series. Click here for Part 1.

Family Beliefs

Family oriented care—it’s what sets Family Medicine apart from other specialties. 

In medical school, doctors learn to think systemically. Our job as educators in family oriented care is to translate this from biological systems to family systems, to enhance physicians’ ability to care for patients in context and care for families across the life span.

 

As a result of our personal family experiences, we acquire a system of shared beliefs that influence our world view.  These beliefs are informed by health, illness, religion, culture, race, politics, and socioeconomic status.  Beliefs acquired in childhood may change as we grow and mature. It’s important that we have the freedom to question or express conflicting viewpoints. In some families, there’s not a lot of freedom to deviate from the shared belief system which results in emotional instability of the system and relationship stress even into adulthood. 

 

When we teach about family health beliefs in the residency, we explore the role of our family experiences. Meaning of illness and coping strategies often reflect family folklore, practices from different cultures, or the strong influence of family health experts. We use case examples and reflections of our own personal stories to enhance resident understanding of these concepts.



Let’s follow Nancy and Chuck.


When they married, each brought their own core values and beliefs, which had been influenced by their family, culture and experiences.

 

 

Their developmental task was to integrate their values and shape the shared beliefs of their new family.




With a value of self-efficacy, they modeled the importance of self-care through organic gardening, a vegetarian diet, nutritional supplements and practiced transcendental meditation. They had informed partnership with their family doctor… but like in their own families of origin, health concerns were minimized and details were kept private.


At 51, an episode of hematuria led Nancy to an uncharacteristic and very private place of worry. Though her doctor felt confident this was just a UTI, Nancy shared her fear that this could be a sign of kidney disease. You see, she lost her father to kidney disease at age 52.  


Patients aren’t always that forthcoming with us. Doctors and other healthcare providers need to be trained to recognize family health beliefs and utilize them in the care of patients. Our task is to teach physicians to be curious; to adjust their lens and take a closer look.

 

Our STFM and CFHA colleagues have created and shared valuable resources to support the development of knowledge and skills in family oriented care: books, patient and family centered observation forms, and a variety of teaching tools available on STFM Digital Resources Library. All there for you to adapt and use in your own program or setting.

 

We believe the learner’s family experience is an essential starting place when teaching family oriented care. We talk about what it means to have your family “in the room” with you and use guided self-reflection to help residents understand how their experiences and beliefs impact their care of patients and families. We discuss how to respect and manage instances when our values and beliefs are in conflict with those of our patients. Including, when it is appropriate to intervene or educate, and how to do this without damaging the doctor patient relationship.

 

Much of our Family Health Beliefs teaching takes place in a longitudinal small group seminar. In addition to assessing specific family oriented interviewing skills in video review, we coach residents to “listen for” and address family health beliefs through rich examples during video review.     

 

One strategy for discovering important family beliefs is our “genogram in a nugget” question. We teach residents to ask “What’s the most important thing about your family history you want me to know?” In doing so, residents uncover significant beliefs or worries (often psychosocial in nature) that would be missed when taking a family medical history.

 

As an example, we share the story of a mom who brought her 8 year old in for the third time in a week due to an episode of bloody diarrhea. The resident was unable to reassure mom that this was just due to a GI bug the child had. Once he traded his annoyance for curiosity, he learned that mom’s brother was diagnosed with colon cancer, which presented as bloody stool. This completely changed how he handled the encounter.

 

We also layer teaching about family during home visits. Due to concerns about missed well child visits and multiple no-shows, we visited a young mom and her 3 children in their home. We learned that mom was raised with the belief that you don’t go to the doctor unless you’re sick, which led us to alter our approach to partnering with this family.


So, with layers of teaching about family in multiple settings, our residents are developing proficiency in providing family oriented care. They are able to recognize and utilize the influence of family beliefs in the care of patients, and they even prompt each other to take a closer look. Caring for families brings joy and meaning to our work.

 



Through the years, Chuck and Nancy have become more open to talking about medical issues. After running out of treatment options for multiple myeloma, Nancy underwent a stem cell transplant at 75. As a gesture of support, Chuck shaved his head and she wore a pink wig for her homecoming with the grandchildren… diffusing the worry they held for their Nana. Through their example, the family is learning how to live with illness.

 

Nancy is now 80 and has dementia. A consummate problem solver, Chuck devours the literature and tries a variety of alternative treatments to slow the progression of her decline: Reiki, targeted supplements, marijuana, stem cell therapy, coconut oil, alkaline diet, etc.

 

Valuing his opinion, Chuck updates their family doctor on Nancy’s symptoms and his efforts to find something to make a difference. Their doctor listens reflectively. Gently, he suggests the evidence for these things is weak at best. He pauses, then sharpens his focus on the patient and caregiver. He recognizes Chuck’s dedication and love for Nancy. The best intervention he can offer is to hold their hope and respect his efforts. He is just what they need during this difficult time.

 

 

Amy Romain, LMSW, ACSW, is an Assistant Professor and Director of Behavioral Medicine in the Sparrow-Michigan State University Family Medicine Residency Program. She is passionate about the importance of understanding and utilizing the patient’s context to the doctor-patient relationship and in clinical decision making. Amy is a champion for family oriented care and primary care behavioral health integration. This blog post is an adaptation of her recent Pecha Kucha presentation at the STFM Annual Spring Conference. 

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Pecha Kucha: A Special Families and Health Blog Series

Posted By Colleen Fogarty, Randall Reitz, Wednesday, September 5, 2018

This blog series is done in collaboration with the Society of Teachers of Family Medicine. Come back for later posts. 

 

Training for Family-Centered Care (in 6 minutes and 40 seconds)

 

What can you learn in 6 minutes and 40 seconds? Is this enough time to deeply listen to the person in front of you? Can you walk away with a new idea, a challenging proposition, motivation to learn more? We think so! Pecha Kucha (https://www.pechakucha.org/) is a structured approach to presentations that allows 20 images with 20 seconds of talk time for a presenter to use to communicate with an audience. Pecha Kucha gives us just shy of 7 minutes to engage and learn something new.

 

I am delighted to introduce a series of blog posts co- hosted (and co-posted!) by the Society of Teachers of Family Medicine (STFM) and the Collaborative Family Healthcare Association (CFHA).  Both organizations are near and dear to my heart.  STFM, founded in 1967, boasts a tagline of “Transforming health care through education” and as a professional home for family medicine faculty from multiple many disciplines, achieves that mission daily. (http://www.stfm.org/About) CFHA, founded in 1995, “promotes comprehensive and cost-effective models of healthcare delivery that integrate mind and body, individual and family, patients, providers and communities.” (https://www.cfha.net/page/MissionStatement)

 

This series of blogs is based on a seminar presented at the 2018 STFM conference, in which the presenters, Randall Reitz, PhD, LMFT, Amy M. Romain, LMSW, ACSW, Valerie Ross MS, LMFT, and Daniel S. Felix, PhD, LMFT used the pecha kucha format to provide an engaging, visually stimulating overview of important concepts from family systems theory.

 

Understanding the concept of shared family beliefs allows a physician to recognize when a certain lifestyle change might be easier or harder for the patient sitting in front of them. 

Family physicians we should make a clear stand for the importance of family systems approaches. Otherwise we are glorified (or un-glorified) internists who sometimes deliver babies and see kids!   

Today’s post is from Randall Reitz and focuses on creating a culture of family-centeredness.  Over the next few weeks we’ll have posts on triangulation, circular causality, homeostasis or systems stability, and family shared beliefs.

Colleen Fogarty, MD, M.Sc., is Associate Professor at the University of Rochester/Highland Hospital Department of Family Medicine, where she serves as the Associate Chair and Medical Director of Highland Family Medicine.  

 

Creating a Culture of Family-Centeredness

I’m the father of 3 children.  I’m also a family therapist.  You don’t want to be the child of a family therapist.  The kids end up being guinea pigs for some of the parents’ worst ideas.  For example, I’ve often implemented token economies with families I see in therapy.  You know how it works:  you get a quarter or a dollar for specific good behaviors.  You lose a quarter or your cell phone for specific bad behaviors.

It started out with a simple job chart on the fridge, but eventually grew to include chores, exercise, music, and homework. The kids loved it.  They could earn money for tasks they were required to do anyway.  But, quickly the system started failing us.  The kids were constantly bickering about if they’d done enough to earn their money, or they’d refuse to do things that weren’t on the chart, or say “No thanks, it’s just not worth a quarter.”

About this same time I saw a TED Talk from Daniel Pink that shared ideas about intrinsic motivation from his book “Drive”.  I bought this book, devoured it, and then purchased it for all my faculty colleagues for Christmas.  It helped me understand, not only why my chart was failing my children, but also how to build a culture of intrinsic motivation within my clinic and residency.

I’ll let you watch the youtube or read the book to get the background on the research, but the 10,000 foot summary is that people who receive extrinsic rewards for doing their jobs learn more slowly, produce more slowly, and lose their skills more quickly.

The basic premise of the book is that organizations need to focus on creating a culture of intrinsic motivation. Culture is important because it is the truth of the organization.  Far more than a policy, job chart, or curriculum document, culture represents the grass roots reality.

He asserts that effective cultures create and sustain intrinsic motivation through 3 overlapping pursuits:

·       Mastery, the desire to continually improve at something we value;

·       Autonomy, the desire to be self-directed; and

·       Purpose, the desire to contribute to something that transcends us.

 

These principles are the foundational values of the fellowship I run and my residency’s behavioral science curriculum.  Especially in the education of family-oriented care we believe our trainees will invest more deeply and progress much further if we promote purpose, mastery, and autonomy throughout the system.

First, purpose. On a group level, the shared purpose is delineated in a mission statement.  For a curriculum, it is codified in the preamble to the goals and objectives document for the rotation.  Ensure that these central documents are explicit about a family focus.  For example, our clinic’s mission statement refers to family-centered care, not patient-centered care.

For the individual resident, their purpose is often found in their personal statement from their application.  They frequently speak to a vision of cradle to grave services for an entire family.  This pre-residency idealism is gold, yet frequently it is squelched through the reductionism of medical education. Maintaining a value for family-centered care is one of the most important tasks of a behavioral science curriculum. It’s much more vital than the techniques and skills that populate our curricula.

Second, mastery.  Mastery feels good.  Mastery builds confidence. Mastery in a job comes from having clearly defined expectations and competencies and a process to develop the skills for achieving the expectations. In the medical tradition, this is often carried out through the apprenticeship rubric of see one, do one, teach one. It is tempting to have the behavioral faculty provide solo leadership in this effort, but seeing physician faculty prioritize the family in family medicine will do more than all of our preaching.

At a next level, it requires on-going training and support to remediate shortcomings.  At the highest level, every resident should have a personal development plan that maps out their desires for growing in family-oriented care and the specific supports the residency and clinic offer them. 

To assess progress toward mastery, we include family-centered care in our milestone documents, which are then used for live observation, such as walking rounds, video precepting, and joint appointments. We set aside time to go over our observations and then debrief the perspective of the residents.  This often looks like solution-focused therapy.

And third, Autonomy, the area that I value most. Autonomous practice is the over-arching goal of resident education. What does this look like for family-centered care?  I’d suggest the overall goal is to be able to connect family members as part of the continuity of care.

We don’t expect every resident to practice like a family therapist, but there should be EPA’s for family-centered care. These activities would include taking a family history, assessing the family environment and developmental life cycle, conducting a family conference, and engaging a family and managing conflict in the exam room.

Autonomy can be tricky. As with all medical education we need to balance resident autonomy with patient safety.  At what point do I stop observing and start intervening when things are going poorly?  And, just as not every resident wants to provide OB care after graduation, not every resident will value family-centered care.

If we push too hard against a resident’s expressed interest in the area, we might gain short-term compliance, but lose the bigger goal of training the next generation to love family. This is especially fraught because most residencies don’t invest in family-centered care as much as they do to inpatient care, pediatric care, and other core rotations.

For these reasons, it has always been my goal to integrate family across all rotations.  I want the faculty lead for the teaching service to champion family-centeredness.  I want all education on pediatrics to lead with family as the central unit of pediatric care.

It is through being repeatedly exposed to family in every aspect of medicine that we create a culture of family-centeredness.  It stops being “what we do” and eventually becomes “who we are”.

 

I’ll wrap-up where I started—with my family. We are quite diverse—much like families and family physicians.  My wife is a Brazilian Mormon and I’m an American skeptic.  We try to raise our children in a pluralistic, bicultural way—much like family medicine. As such, we often lack role models of families with similar goals.

So, to reinforce our unique family culture we frequently repeat the expression “This is the Reitz way of doing things”.  I recommend something similar to this expression as you develop a culture of family. Speak openly about the culture you pursue, analyze times when the culture didn’t hold up. Celebrate times when the best of your culture is on display.

Randall Reitz is the Director of Behavioral Medicine at the St Mary’s Family Medicine Residency in Grand Junction, Colorado.

 

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The Enduring Relevance of Family Care

Posted By Matthew P. Martin, Friday, August 31, 2018

Happy Friday everyone! This is Matt, the current chair of the CFHA Families and Health Special Interest Group. I wanted to share a few thoughts about the work the group has done this past year and then mention future opportunities. Consider this a teaser for the upcoming annual conference in New York.

One of the primary goals of the Group this past year was to promote the submission of high quality proposals related to family care. This meant tracking down fellow advocates within the CFHA community and inviting them to submit their work. It was energizing to discover all the great family health related projects being done by our members. As chair, I knew we would reach our goal by working with the members. At the 2017 CFHA conference, there were fewer than 10 presentations related to family health. I am happy to report that the 2018 conference in Rochester will feature over 20 presentations related to family health. Please look out for a list of those presentations later in October. And thank you to all of the Group members who helped get the word out to reach our goal!

I also want to secretly announce that this year's recipient of the Families and Health Award will be extra special. If you are coming to the conference, please be sure to attend the award ceremony to find out who it is! There are many CFHA members who have done so much to advance the science of family health in the field. I wish we could award more than one each year.

One final announcement is about upcoming elections for the Families and Health Special Interest Group. If you are a member of CFHA and have interest in serving in a leadership capacity for the group, please send me an email nominating yourself or someone else by 15 September. This is a great opportunity to serve and collaborate with other terrific members. Our new leaders will be announced at the Group conference meeting in New York.

I will leave you with this quote from a recent article by Janet Deatrick

"We now understand that social determinants of health can be more important determinants than biological mechanisms for preventing and treating disease. As [providers], we understand the importance of families for the health of their members. Now is the time for us to provide leadership to the integration of family science into practice, research, education, and policy/leadership related to social determinants of health." 

  Matt Martin, PhD, LMFT, is Clinical Assistant Professor and research faculty at the Doctor of Behavioral Health Program at Arizona State University where he teaches courses on health care research, quality improvement, and interprofessional consultation.  

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Vaping, E-Cigarettes, and Your Teenage Patients

Posted By Rachel German, Allison Schuessler, & Tawnya Meadows, Wednesday, August 8, 2018

The Facts:

The use of e-cigarettes among high school students rose from 1.5% to 16% from 2011 to 2015.In 2016, more than two million students in high school and middle school used e-cigarettes.E-cigarettes were identified as the nicotine product high school students used most frequently in 2014.2


The Dangers:

Vaping and electronic cigarettes often contain nicotine. 60% of teenagers are not aware nicotine is found in e-cigarettes.2 E-liquid can lead to nicotine poisoning if consumed directly and symptoms include vomiting, sweating, dizziness, increased heart rate, lethargy, seizures, and difficulty breathing. 1 in 4 adolescents admitted to “dripping” in which the liquid is placed directly on the heating coil, resulting in a stronger and thicker vapor.

 

Vaping and nicotine consumption can have impacts on physical, cognitive, and mental health. The use of nicotine, even in vaping format, is linked to increases in heart rate, blood pressure, and other physical complications.2 Nicotine consumption has also been linked to impairment in memory, executive functioning, and behavior3 and the adolescent brain is particularly vulnerable to these effects due to its rate of development.4 Research suggests that current cigarette use was the strongest predictor of developing high levels of depressive symptoms while high baseline levels of depression were not predictive of heavy smoking when controlling for other factors.5

 

Electronic cigarettes may encourage conventional cigarette use. While many adults cite the use of e-cigarettes as a smoking cessation tool6, several studies have not found a link between the use of e-cigarettes and cessation of conventional cigarettes.7-9. Studies on teenagers suggest e-cigarette use appears to have an aggravating rather than ameliorating effect on tobacco use.10-11

 

Electronic cigarettes may be undoing the negative stigma years of targeted advertising worked to build against smoking.  The work done to decrease the impression that smoking was “cool” faces a new obstacle in vaping. Cloud competitions, where “professional vapers” compete to blow intricate patterns with the vapor from e-cigarettes add a new dimension to the “cool factor” of vaping.

 

Flavoring and colorful packaging appeal to youth. Fruit and candy flavored cigarettes are banned from being sold in the US because they appeal to youth.10 However, flavored e-cigarette products can easily be ordered online, even though you need to be 18 years old to purchase them in person. Flavors such as bubblegum, banana cream pie, and chocolate candy cane entice young people to begin vaping. A survey completed by teenagers indicated that flavoring is among the top three reasons for vaping.2 Starting in March of 2018, however, the FDA has begun an open comment forum for the public to weigh in on if the agency should pursue legislation governing the use of flavored products.1 In addition, devices can look like common gadgets, such as flash drives, and may be easily hidden from parents.

 

A Team Response:

TEAM: The provision of educational materials in waiting and exam rooms can help provide valuable information to teens and parents about the harmful effects of vaping and the use of e-cigarettes. Informational fliers and pamphlets can be found at http://pub.etr.org/category.aspx?id=100000199.

PCP: Due to many teenagers’ lack of understanding that vaping may be exposing them to nicotine, primary care providers should include a specific targeted question about e-cigarettes and vaping during their annual screenings for cigarette and tobacco use. Primary care providers should also ask about susceptibility to try smoking in the next year as it is a strong predictor of future use. Primary care providers can offer alternative medical interventions to lead to smoking cessation. It may be used to adapt the US Public Health Service’s “5As” for Tobacco Cessation Intervention.

ASK about e-cigarette use

ADVISE against e-cigarette use and about avoiding secondhand vapor exposure

ASSESS whether teen is ready to quit using e-cigarettes

ASSIST them in quitting, by setting a quit date and giving them practical advice for a successful quit attempt and for prevention of secondhand exposure by non-users

ARRANGE follow-up to check on the teen’s progress with quitting

BHC: The implementation of motivational interviewing can assist behavioral health clinicians in determining a teen’s stage of change toward considering vaping cessation and discussing first steps toward making that change. Providing psychoeducation about and assistance developing individualized behavioral strategies and systems can help teens find concrete ways of quitting smoking. Teaching assertive communication skills to teens can help them when faced with peer pressure to use e-cigarettes or vape. Also, behavioral health providers can assist parents in initiating and implementing consequences for their teens’ vaping and use of e-cigarettes.

 

References:

 1 Food and Drug Administration (2018, May 7). Vaporizers, e-cigarettes, and other electronic nicotine delivery systems (ENDS). U. S. Food and Drug Administration. Retrieved from https://www.fda.gov/TobaccoProducts/Labeling/ProductsIngredientsComponents/ucm456610.htm

2 Krishnan-Sarin, S., Morean, M., Kong., G., Bold, K. W., Camenga, D. R., …& Wu, R. (2017). E-cigarrettes and “dripping” among high school youth. Pediatrics, 139, e20163224.

3Douglass, B. L., & Solecki, S. (2017, August 1). Teen vaping: Time to clear the air. ContemporaryPediatrics.com. Retrieved from http://www.contemporarypediatrics.com/modern-medicine-feature-articles/teen-vaping-time-clear-air

4England, L. J., Bunnell, R. E., Pechacek, T. F., Tong, V. T., & MacAfee, T. A. (2015). Nicotine and the developing human: A neglected element in the electronic cigarette debate. American Journal of Preventative Medicine, 49(2), 286-293.

5Slotkin, T. A. (2004). Cholinergic systems in brain development and disruption by neurotoxicants: Nicotine, environmental tobacco smoke, organophosphates. Toxicology and Applied Pharmacology, 198(2), 132-151.

6 Goodman, E., & Capitman, J. (2000). Depressive symptoms and cigarette smoking among teens. Pediatrics, 106(4).

7Etter, J. F. (2010). Electronic cigarettes: A survey of users. BioMed Central Public Health, 10, 231.

8Adkinson, S. E., O’Connor, R. J., Bansal-Travers, M., Hyland, A, Yong, HH, … & Fong, G. T. (2013). Electronic nicotine delivery systems: International tobacco control four-country survey. American Journal of Preventive Medicine, 44(3), 207-215.

9Bullen, C, Howe, C., Laugesen, M., McRobbie, H., Parag, V., … & Walker, N. (2013). Electronic cigarettes for smoking cessation: A randomised controlled trial. The Lancet, 382(9905), 1629-1637.

10Vickerman, K. A, Carpenter, K. M,. Altman, T., Nash, C. M., & Zbikowski, S. M. (2013). Use of electronic cigarettes among state tobacco cessation quitline callers. Nicotine and Tobacco Research, 15(10), 1787-1791.

11Dutra, L. M., & Glantz, S. A. (2014). Electronic cigarettes and conventional cigarette use among US adolescents: A cross-sectional study. JAMA Pediatrics, 168(7), 610-617.

12Primack, B. A., Soneji, S., Stoolmiller, M., Fine, M. J., & Sargent, J. D. (2015). Progression to traditional cigarette smoking after electronic cigarette use among US adolescents and young adults. JAMA Pediatrics, 169(11), 1018-1023.

 

Drs. Tawnya Meadows (psychologist), Allison Schuessler (pediatrician), Rachel German (postdoctoral fellow) collaborate in a primary care clinic located in Pennsylvania. They work in one of the many pediatric integrated primary care clinics located throughout the Geisinger system. 


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Stories of Caregiving: Part 3

Posted By Kate Rediger, Friday, July 27, 2018

"I remember the good ones"

Ms. Long was doomed. She was in her 60s and had a long history IV drug use and had acquired HIV decades prior. She had injected in her legs for many years, eventually causing the skin to ulcerate and erode. Now she had massive wounds covering most of her lower legs. And the wounds were infected. When I tried to talk to her about controlling her pain with something other than an opioid (she was already on methadone), she snapped her head away and rolled her eyes. I admitted her to my ambulatory intensive care program and swallowed hard, knowing that it was going to be damn near impossible to help this woman.

 

Ms. Long lived in a Baltimore row home with her adult daughter Patricia. As is so common among Baltimore families, heroin was multi-generational problem, and Patricia was still using. The mother-daughter relationship was tense, and Patricia was often irrational and labile. Patricia would not or could not do much to help her mom with her health problems.

 

Despite all the obstacles, Ms. Long and I developed a trusting relationship. I did home visits with her every two weeks and painstakingly dressed her wounds whenever I saw her and helped her call the medical supply company to get more bandages. I set a firm boundary with Patricia who often called to yell at me with misplaced frustration. I begged Ms. Long to come off the methadone, or at least switch to suboxone. Whenever she got sick enough to be hospitalized, she crashed hard and fast and usually ended up in the ICU. I’d visit when I could and coordinate with her medical team and her family. Somehow through all of this, Ms. Long managed to stay dressed to the nines, with her wig in place and jewelry on show. She was spunky.

 

And then it happened… the inevitable downturn, the beginning of the end. Ms. Long was at her methadone program and she seemed confused, not acting herself. The staff called 911 and she was taken to the hospital where she was intubated for respiratory failure. In the ICU, she was treated for pneumonia and stabilized, but didn’t seem to be getting any better. Days turned into weeks, and she was still on the ventilator, clinging to life. Her leg wounds were the least of our concerns now - an MRI of her brain showed a massive stroke and it was not clear if she’d regain much neurologic function. I was grateful to be included in two family meetings with the palliative care team, Patricia, and Ms. Long’s granddaughter Shantelle. We all agreed that Ms. Long would not want have a tracheostomy tube placed and be dependent on the ventilator. Agonizing as it was, we agreed to take her off the machines, expecting she would pass away within hours or days. I waited for the call.

 

But when the ICU team terminally extubated Ms. Long., she… got better. Slowly but surely, she regained consciousness and was breathing on her own. Soon, she was well enough to be transferred to a nursing facility for rehab. The call announcing her death never came. I was astonished, but skeptical. Could someone so fragile really recover from such devastating illness in any meaningful way?

 

I went to see her in the nursing home weeks later. Ms. Long was perched on the edge of her bed, struggling to eat a tuna fish sandwich. I didn’t know it at the time, but the stroke had left her legally blind; she could see, but not make out much detail. She was thin but I could still sense her vitality as she chomped on that tuna sandwich without her dentures. I introduced myself and asked if she remembered me. “Of course, I always remember the good ones” she replied. I asked if she needed me to bring her anything. “Just some bananas.” Done.

 

Ms. Long left the nursing home a couple weeks later. She had lost her home while she was hospitalized, and Patricia had to scramble to find a new apartment for them. Her methadone had been stopped when she was so ill and there was no reason for her to return to it and the lifestyle it brought. She had difficulty using her phone and getting around, but she didn’t let on. She was fiercely independent and was determined to keep on living. She came to her appointments with me, and I helped her navigate the health system, scheduling appointments with her HIV doctor and wound care specialists. There were some hiccups along the way, but months later she is thriving in the community, of course always wearing a neatly pressed outfit and bold earrings.

 

I am left pondering how Ms. Long achieved this incredible outcome against all odds. Was it her feistiness, her sheer will to live? Was it the support of her granddaughter who took over as her caregiver? Or was it just luck that her brain had recovered enough to keep working when we took her off the ventilator? Her body and mind could have been destroyed by illness, addiction, and disappointments. But instead she flew. I think most of us healthcare providers struggle to bestow the magic cocktail of resilience to our patients. Ms. Long got the mixture just right, and I’m so grateful to have been one of the ingredients.

 

Katherine Rediger, MSN, CRNP is a family nurse practitioner who works with a high-need, high-cost population in East Baltimore, serving as the Director of Clinical Operations for the Priority Access Primary Care program at Johns Hopkins Community Physicians. Ms. Rediger enjoys working on a primary care team with integrated behavioral health services, and helps run a mindfulness group for her clients. Ms. Rediger earned her Master of Nursing degree from the University of Maryland, Baltimore. 

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Stories of Caregiving: Part 2

Posted By Rachel Carter, Thursday, July 19, 2018

I was 17 years old when my Grandpa Herb, my mother’s father, was diagnosed with Stage 4 Pancreatic Cancer. I can still remember what a shock it was for my family, as even though he was 88, he was still incredibly active and healthy; teaching statistics at the University of San Francisco, taking piano lessons and continually investing in the lives of his three daughters and seven grandchildren. His diagnosis was devastating for me and my family. All growing up, whenever we would go to visit him, my grandfather would tell all of us grandkids stories with characters that he made up just for us. In these stories there would always be a little girl who was going to visit her best friend and then would get in some kind of serious, life-threatening trouble that she could not get out of without the help of her animal friends who were always eager to be there for her because of how she had been there for them. As an adult, these stories still mean the world to me, but I see them as so much more than that; they serve as a metaphor for my grandfather’s illness and what caretaking looked like during the last month of his life, which was the part of his story for which I had the privilege of being there.

 

A month before my grandfather died I boarded a plane alone to go visit him, having a feeling that it might be my last time to see him as I was leaving for college in the fall, but having no idea that he would pass away so soon. I suppose this is when my grandfather began to enter the woods and begin his journey to the other side. I remember watching him as it became difficult for him to walk up the stairs, and then difficult to walk. There was one day he was in so much pain that we took him to the doctor and it was so exhausting for him to get through the door that when we got inside he just laid his body down in my lap. Looking back now, I think about how my grandfather held me as a child, a scene of which there are countless pictures. Then, I think of how I had the opportunity to hold him in return, which was both incredibly painful and at the same time one of the most intimate gifts. My grandfather, who, like the little girl in the stories that he told me was always helping out others, was in trouble, and it was my turn to help him.

 

But there was a twist to his story that did not happen in the stories he told me as a kid. In his stories, the animal characters would help the little girl without facing any struggles of their own, without the little girl having to help them. This is not how it happened in my grandfather’s story. There is one moment that I can remember in his journey through the woods that will stick with me forever. It happened after I held my grandpa in my lap at the doctor’s office when the doctor was taking a sample of his blood. I watched as my grandfather leaned on my grandmother, who was holding his hand as it was painful for him to sit up, and as these two people I loved so dearly held onto each other to get through the pain that he was physically feeling and that was emotionally draining her, my grandfather kissed my grandmother’s head to comfort her. He understood in that moment that his pain and the trouble that he was in was not only his own; it was hers too.

 

This was the part of his story that the stories of the little girl going through the woods had not prepared me for: the story where all of the animals, and all of the family are deeply troubled and affected by the trouble the main character is in, and that in order to get her safely to other side, they all had to get there too, even if it hurt and even if their lives would never look the same. As I cared for my grandfather during his last month, I was struck by how much it took out of my grandmother and my aunt, who had been caring for him tirelessly since he had been diagnosed. I saw how it affected my aunt’s wellbeing as she watched her father whom she loved so dearly and had built her life around, slowly slip away.  I watched how carefully my grandmother chose out a bed for him to sleep on because he had moved upstairs and she just couldn’t take seeing a hospital bed in the middle of her living room and him passing away in it; she simply would not have that. I watched my mother fly back and forth every month and call home every day so she wouldn’t miss a chance to tell her dad she loved him.  I watched as my father drove through the night across the country with my little brothers to say goodbye.  I was struck by how, when this man was in trouble, there was a whole group that rallied to help him in the midst of it to walk him to the other side. In the end it was my aunt and grandmother who did the most caretaking for my grandfather, but in that last month I saw that when one person needs to be taken care of, the team of caretakers need care too.

 

After my grandfather went through the woods, experienced trouble and made it to the other side, I realized how the different needs of the people who had cared for him had been neglected, and while they all loved him dearly, they desperately needed to be taken care of in the moments that he did too. Looking back, I think that this is what first drew me to working with and caring for families, even before I had ever heard the words “family centered care.” I learned from my grandfather in the moments that he took care of his family when he was well, was ill, and even in his providing for them after his death, that caretakers need to be cared for too. His story and having the opportunity to be one of his caretakers for a little while, taught me that when one person is in trouble, everyone in the whole system is affected and each person has to find a way out of the woods too. 

 

Rachel Carter, MA, NCC, is a Clinical Mental Health Counselor and PhD student in the Counseling and Counselor Education program at the University of Rochester where she helps teach and supervise mental health counseling students. She has worked in both hospital and primary care settings and is interested in the effects of illness and social systems on family functioning, as well as best supervision practices for enhancing the collaboration of interdisciplinary teams.

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Stories of Caregiving: Part 1

Posted By Lucia Stubbs, Tuesday, July 3, 2018

This is the first in a three-part series on personal stories of caregiving. Come back later for more.

I began as a caretaker for my mother during my adolescence. Although, she was diagnosed with MS some years before, when I was in middle school. Strangely enough there was no conscious or intentional decision for me to become my mother’s caregiver, it just happened. Perhaps it was our close mother-daughter relationship, being the youngest child, and/or a female that made me prime caregiver material. Nonetheless, as her health steadily declined and she loss more functional capacities, my role as her caregiver grew.

 

Caregiving for my mother has spanned about 3 decades. Initially, I would help with bringing in groceries, which then turned into meal preparation. And over the course of multiple emergency room visits for falls and routine medical appointments I became my mother’s healthcare advocate. I would remember to tell the medical providers about her recent falls, motor declines, and any cognitive or memory changes that occurred between appointments. Through the years my mother was also diagnosed with high blood pressure, high cholesterol, gout, and transient ischemic attacks. I researched her diagnoses, asked questions about her medications, and urged for specific treatments.

 

Eventually, it was the progression of the neurological disease that took her from walking with many rest breaks, to using a cane then a walker, and now to being fairly wheelchair-bound. With the disease’s progression, I provided greater assistance in the home, helping her with hygiene care and performing other daily living activities. The worsening symptoms morphed my highly active, roller skating, dancing, playful, and energetic mother into a sedentary and at times melancholy version of herself.

 

Unsurprisingly, there were times of significant stress as a caregiver. One of the most difficult times of caregiving for my mother is when she had knee surgery. She was in such severe pain it was palpable. When she had to use the bathroom it was one of the most excruciatingly distressful experiences of my life. Hearing her shriek in pain and tears running down her face, as a result of the agony that she was enduring evoked simultaneous suffering inside of me. Once she was settled back in bed, I would exit the room, and walk the hospital halls to cry without my mother seeing me.

 

My mother’s health necessitates a high level of support and care. Attempting to provide much of her care and support led to signs of caregiver fatigue. Particularly, I began to say, “I have nothing left to give.” But what I came to realize through the support of friends and family was that I still had something, actually a lot, to give. But I could only continue to care for my mother, if I decided unapologetically and without introspective judgment to care for myself. This led to me developing greater boundaries and learning how to say “no.” And rather than delegate to other family members, they simply stepped up when I was unable to. I learned that instead of being that adolescent caregiver that quickly jumped into action, I had to slow down. The evidence of positive results provided me with reassurance myself that I could save something for me and my mother’s needs would still be met. Undoubtedly, it still becomes rough and those are the times I have to recalibrate and ask for spiritual, emotional, and physical support; often enlisting my partner, family, and friends. I suppose, I learned how to be cared for, rather than the one always caring for my mother or others. Growing in this way as a caregiver has sustained me.

 

In turn, this has also helped strengthen and encourage my mother. Now she is more willing and able to endure medical issues that arise. This can range from motor functioning setbacks to autoimmune conditions that develop. Moreover, reliance on the power of our spirituality has allowed us to be more adept at acceptance, tolerance, and flexibility with health issues that arise. For instance, when my mother needed a higher level of care and was transitioning from independent to assisted living. Initially, we both were filled with emotions. My mother with despair, anger, and grief over what this change meant for her sense of autonomy and connection to our family. Whereas, my inner turmoil was a battle between guilt and logic about not being able to be my mother’s sole caregiver. We worked through the emotions and were able make peace with her transitioning to assisted living because it allowed for the care we both needed.

 

My experience as a caregiver to my mother is a gift. It undoubtedly led me into my current profession within integrated healthcare as a psychologist. Of more worth, I have acquired experiential wealth, in being able to relate to, understand, empathize, and build rapport in some special ways with patients and their families. I feel honored, in being able to act, on some miniscule level, as a healer of sorts. Everyday I am given opportunities to heal (we all are). To act in some way of compassion and helpfulness, coupled with my psychological training, to care for others. In major ways, I've been working ardently to continue applying this inwardly. Ultimately, to be a caregiver for others, I have learned that I have to have great care and compassion for myself.

 

 

Lucia J. Stubbs, Ph.D., Licensed Psychologist, currently provides psychological services as a behavioral health consultant at a clinic in Madison, WI. Lucia has a breadth of experience including the provision of psychological assessments, health psychology, and general outpatient psychotherapy with children, adults, and families.

 

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Healthcare’s Slow Turn Toward Family-Engaged Care

Posted By Barry J. Jacobs, Monday, June 18, 2018


          Lost in today’s healthcare headlines about social determinants of health, such as housing, transportation and food insecurity, is greater attention to the original social context of most of our health habits—family. Insurers and health systems are turning toward engaging patients’ family caregivers as another means of decreasing healthcare costs.

 

            It has been a slow turn, to be sure. Despite decades of family systems thinking and clinical approaches, healthcare remains predominantly patient-centric in its policies, practices and research. But the need to reduce hospital readmissions and institutionalization rates are beginning to prod large systems to create more robust family caregiver support programs, especially in geriatric, home medicine, dementia, hospice and palliative care. The logic behind these moves would seem indisputable, given America’s aging population and higher incidence of chronic and serious illnesses and functional deficits. By bolstering the know-how and resilience of family caregivers, insurers and health systems are hoping older adults’ illnesses and disabilities will be better managed at home and therefore require less intensive and expensive services.

 

            Many of these efforts seem to incorporate principles derived from evidence-based dementia caregiver support programs, such as REACH-II and the New York University Caregiver Intervention, during the past 30 years:

            A patient- and family-centered care philosophy: There is recognition that spouses and other family members play key roles in communicating with healthcare professionals, picking up medications, buying and cooking healthy foods, and overseeing treatment plans as they are implemented in the real lives of patients in their home settings.

            Formal and structured family caregiver support programs: Much of what passes for family intervention in healthcare is still informal and reactive: Physicians or nurses express concern about a troubled or difficult family member and then social workers scramble to make brief interventions. In contrast, the new family caregiver support programs strive to explicitly engage the patients’ family members early on as a normal part of comprehensive care. They use family caregiver navigators—distinct from patient care coordinators—who focus solely on caregiver needs for guidance, support, education and, in some instances, emotional counseling.

            Formal and timely caregiver assessment: Like with traditional healthcare, these new programs ask about who’s in the family and solicit questions about the patients’ medical conditions and treatments. But they go beyond that, evaluating family members’ knowledge, abilities and willingness to participate in care, in addition to their degree of emotional distress with instruments such as the Zarit Caregiver Burden Scale, the Benjamin Rose Institute Caregiver Strain Instrument, and the American Medical Association Caregiver Self-Assessment Questionnaire.

            Linkage to community-based organizations: To address all social determinants of health, healthcare and social services agencies need to more closely coordinate their helping efforts. For a more family-engaged healthcare, that means hospitals and outpatient clinics make earlier referrals with close follow-up to local Area Agencies on Aging and local chapters of disease-specific organizations such as the Alzheimer’s Association.

 

            So who are the national players in this emerging trend?

            --Twenty-six states now have contracted with managed care companies (e.g., United Healthcare and AmeriHealth Caritas) to manage the healthcare services for their Medicaid recipients. That includes so-called “dual eligibles” (older and disabled patients with Medicare and Medicaid) who are receiving Medicaid Long-Term Services and Supports (home- and community-based services and nursing facilities). To hold down costs, some of these managed care insurers have been experimenting with various means of better supporting family caregivers in order to forestall or prevent patients’ hospitalizations and placements in institutions. A November 2017 AARP Public Policy Institute report (see link below) describes some of these innovations, including increased caregiver engagement, assessment, respite and instruction.

            --Dementia--unrelenting and without current medical cure—is the costliest of all American diseases despite the fact that over 70% of dementia patients are primarily cared for by unpaid family members. If these family members falter because of the rigors of dementia caregiving, then patients quickly wind up in emergency rooms, hospitals and skilled nursing facilities. It’s no surprise then that dementia caregivers are the target for many enhanced family engagement endeavors. Baylor Scott & White in Texas ran a pilot study that created individual care plans with caregiver supports, including a $750 month stipend for home care services. The results were improved overall functioning and decreased ER and hospital use for both the dementia patients and their family caregivers. Similarly, Alzheimer’s Greater Los Angeles helped create the Dementia Cal MediConnect program for dual eligibles which aims for better detection of patients with dementia, better working relationships between health systems and family caregivers, and better partnerships with dementia-specific community-based organizations.

            --Geriatric/palliative medicine and family caregiving go hand in hand. WellMed, a large network of ambulatory facilities in Texas and Florida for Medicare subscribers, has caregiver specialists that reach out to family members at the time patients are admitted to its palliative care program. It offers them home visits, a telephonic support and education group, and an 8-session stress management program that has been found to lower caregiver burden and depression.

            --At Dignity Health Central Coast in California, the family caregiver navigator makes an initial home visit to bring a caregiver gift basket and conduct a caregiver assessment before offering a range of services, including care coordination, a stress management program, and referrals to community agencies. She collaborates with promotores or community health workers to provide the caregivers with increased logistical and emotional support. The results: Decreased caregiver depression and reduced patient ER and hospital utilization.

 

            These fledgling programs are noteworthy but rare. Other health systems have yet to follow suit. While Medicare ACOs have proliferated in recent years, few have implemented enhanced family engagement. And even with the existing programs mentioned above, few are employing providers with family systems training, such as medical family therapists.

 

            But as long as America continues aging and value-based care spreads, family caregivers will inevitably play a larger role. It will be no longer adequate for clinicians to marginalize families or take their efforts for granted. The standard of care will require more of everything--education, support, guidance and, most of all, a spirit of partnership.

 

 
Barry J. Jacobs, Psy.D. is the author of The Emotional Survival Guide for Caregivers (Guilford, 2006), co-author of AARP Meditations for Caregivers (Da Capo, 2016), and the Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA. In August, he will leave family medicine after nearly 24 years to become a healthcare consultant for Health Management Associates.

 

Resources

AARP Public Policy Institute, “Emerging Innovations In Managed Long-Term Services and Supports for Family Caregivers”: http://www.longtermscorecard.org/~/media/Microsite/Files/2017/2017%20Scorecard/AARP1202_EI_EmerInnovationLTSS_Oct31v2.pdf

Cherry, D et al (2017). Dementia Cal MediConnect: Creating Partnerships Between Health Plans and Alzheimer’s Organizations in Improve Care in the Dual Eligibles Pilot. Public Policy and Aging Report, 27(S1): S12-17: https://www.alzgla.org/wp-content/uploads/2018/01/PPA-DCMC-article-1-18-2018.pdf

Stevens, AB & Thorud, JL (2016). The Symbiosis of Population Health and Family Caregiving Drives Effective Programs that Support Patients and Families, Generations, 39(4): 34-38

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Adult Eating Disorders and Intimate Relationships

Posted By Lisa Zak-Hunter, Monday, June 11, 2018

Quick! Describe someone with an eating disorder (ED). What characteristics come to mind? Caucasian, female, young, perfectionistic, controlling, secretive, thin? Did you hit the major stereotypes? If so, you’re not alone. However, you’d be missing a bigger part of the picture. Although anorexia is still the most common eating disorder among non-Hispanic Whites, when all three disorders (anorexia, bulimia, and binge eating disorder) are examined together, ethnic differences disappear. EDs are about equally common among White, African American, Asian, and Hispanic groups. While more women still report having an ED, about 1/3 of patients are men (Hudson et al., 2007; Wade et al., 2011). It’s not just a woman’s disease! Additionally, EDs continue to rise in adults, particularly middle aged women. The reasons for developing or worsening a pre-existing illness in adulthood vary: job stress, pregnancy, family conflict, loss of parents, desire to maintain a youthful look, etc. What’s most concerning is that symptoms in adults can be more severe than in adolescents, requiring a keen, attentive assessment and treatment plan.

 

When EDs are addressed early, outcomes generally are positive, with around 80% of patients achieving remission. However, if an ED is first treated 15 years after symptom onset, which may be true for adult cases, full recovery rates fall to 20%. Importantly, results vary by diagnosis, and the prognosis for binge  eating disorder is better than bulimia, and both are better than anorexia.  Complete recovery rates for anorexia are low. Many people with EDs will describe them similarly perhaps to someone with substance abuse- the disorder is something you have a relationship with and learn to manage, it never really leaves. The best chance someone with an ED has to be the one in control of that relationship is early detection and multidisciplinary intervention.

 

A key component is family involvement. Family inclusion in youth eating disorders is so helpful that it is fairly common part of treatment. I doubt many readers would disagree that addressing family concerns /family involvement in general pediatric care is integral. However, care sometimes appears less family oriented in adult patients, with any condition. Think about it, who is most likely to come to the doctor’s office with a family member? Children, the elderly, and those with disabilities-essentially, anyone with a caretaker. Rarely in my primary care clinic do I see an adult patient accompanied by their significant other. Adults come alone-despite having family members who are also impacted by the patient’s functioning and illness, and vice versa.

 

Similarly to other diseases, intimate relationships offer an important context for eating disorders to fester or improve. On the positive side, patients say that their relationship can help decrease symptoms and give them more motivation to change and seek treatment (Bussolutti, 2002). Negatively, patients fear their partners might misunderstand, reject, or judge them. Sometimes, patients will use their disorder to gain attention and attraction, or protect themselves. So, symptoms might get worse if a patient is feeling neglected (Zak-Hunter& Johnson, 2015, Newton et al., 2006; 2005). Partners generally feel at a loss and struggle with how to provide the best support. They may even develop their own mental health problems. Some early trials of multimodal treatment for anorexia that includes cognitive behavioral couple therapy, are showing improvement in patient symptoms, partner depression/anxiety, treatment drop-out rates, and relationship functioning (Baucom et al., 2017). Essentially, if an adult patient in an intimate relationship has an eating disorder, it’s imperative that we, as healthcare providers recognize the patient needs to have their partner included in treatment.

 

Consider the following case both without and with family centered care.

Joe is a 45-year old male with binge eating disorder. This was discovered during treatment for his type II diabetes.  Joe did not start bingeing until his diabetes diagnosis 5 years ago. He never shared this with anyone because he was ashamed. After 5 years of poorly managed diabetes, blood sugar checks that didn’t always make sense, and medication changes that had little effect, his physician was feeling frustrated and confused. Joe had to be lying about his intake or how he was taking his medicines. Over a few appointments, she asked Joe to explain some of the very high readings. After he couldn’t, she asked him to keep a log. Although Joe had done this in the past, he was tired of hiding and put his binges in. At the follow up appointment the physician asked their behavioral health consultant to step in and help with diagnostic clarification and recommendations. The BHC asked a number of questions related to history, current symptoms, triggers, and Joe’s treatment preferences. They decided to get Joe connected with a local therapist who specialized in binge eating disorder and have him seen by his medical team on a more regular basis. Eventually, Joe’s diabetes numbers began improving. However, they noticed over time that Joe was becoming a little more irritable. He shared that since he was bingeing less, he noticed he didn’t have a good outlet for his marital stress- the bingeing had both distracted him from their conflict and given him much needed alone time away from their home.

 

It’s not uncommon for a change in one part of the system to impact the rest. Let’s rewind to when it became apparent that Joe may have binge eating disorder. Both the BHC and physician could have asked questions related to how things were going at home, how he thought his bingeing affected his wife or marriage, commented that chronic illness (i.e., his diabetes) disrupts the entire family and asked how he thought everyone was dealing with it or interacting with him because of it. They could have encouraged him to bring her to therapy to help her understand his disease, how to support him, or to address any underlying concerns related to their relationship, his binging, and/or his diabetes.  He even could have brought her in to meet his medical team so they could answer any questions she had about his conditions. Using this approach, it may have become apparent earlier that the bingeing had a secondary effect for Joe, and appropriate intervention could have started.

 

Eating disorders can be tricky to find and tricky to treat. If you detect one in an adult, realize this may not be new, and time is of the essence. Ask questions related to how well they are functioning in their intimate relationship and what role the disorder plays in the relationship. Understand that it is likely they will have better outcomes if their partner is involved. Then, intervene appropriately- make sure that partner is actively involved in treatment. Remember, the whole is always bigger than the sum of its parts.

  Lisa Zak-Hunter, PhD, LMFT is Director of Behavioral Health with St. John's Family Medicine Residency at the University of Minnesota. Her interests include provider wellness, family centered care, primary care approaches to adverse experiences and trauma, and adult eating disorders.  

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The Good News About The Longer Lives of Family Caregivers

Posted By Barry J. Jacobs, Monday, May 14, 2018

This piece was originally published on the Huffington Post. Please click here for the original post. Reprinted here with permission.

The national narrative on family caregiving has been largely negative. Not a week goes by without the publication of a new caregiver memoir about how trying it was to care for a parent with dementia. Not a month elapses without some news item of a caregiver killing his care recipient and then himself somewhere in America. The websites of caregiver advocacy groups add to this negative impression with a steady stream of reports about the effects of caregiver stress among different cultural groups struggling with various kinds of arduous caregiving. It is enough to discourage any family member from taking up the caregiving cudgel or, at the least, to approach it with fear and dread.

But a counter-narrative is starting to emerge. A survey by the AARP Public Policy Institute released in early November (https://www.aarp.org/content/dam/aarp/research/surveys_statistics/ltc/2017/family-caregiving-roles.pdf) found that—though more than half of caregivers are stressed and worried and 40% feel overwhelmed—over 90% of them say they are pleased about helping a loved one and that almost 90% of those loved ones are grateful for their caregivers’ efforts. The survey also pointed out that caregivers who felt better prepared for their caregiving roles tended to handle them much better.

These positive findings fit into a growing pattern. Thirty years of caregiver advocacy and improved services seem to be making a difference. According to a paper to be published in the prestigious academic journal, The Gerontologist, by Johns Hopkins University researcher Jennifer L. Wolff, Ph.D., spousal caregivers in 2015 reported significantly less strain and more use of respite services than those studied in 1999.

That paper is co-written by another Hopkins caregiver researcher, David Roth, Ph.D., who, along with William Haley, Ph.D. of the University of South Florida, has published several articles in recent years which have found that family caregivers are more stressed than non-caregivers but, paradoxically, tend to live longer. In their latest article—to be published in Psychology and Aging and co-authored with Stephanie L. Brown, Ph.D.—caregivers live 16.5% longer, to be exact. Their hypothesis for why this occurs: So-called “pro-social helping behaviors” have a neurohormonal effect on humans that promotes immune system homeostasis. In other words, helping others, especially those we love, may be difficult in many respects but has beneficial effects on our health.

What should we make of these more positive findings? They take nothing away from the fact that caregiving is often hard and that most caregivers report that they find it stressful. There may also be sub-groups of caregivers for whom caregiving is simply nightmarish. But it is a mistake to paint it as wholly deleterious or deadly. It is a more complicated picture than that. As a clinical psychologist specializing in counseling family caregivers and as a former caregiver myself, I conclude the following:

The negative narrative of caregiving has been—and is still—over-sold: I understand the good intentions and political reasons for publicizing the caregivers’ plight. Perhaps we would not have the same level of public funding and support that we do today if family caregiving was not originally depicted as a public health emergency. But we are now beyond that one-dimensional model. It appears increasingly likely that most caregivers find at least something positive in their caregiving experiences and that they grow to some extent personally and spiritually through caregiving. The majority of them, if given a second chance, would still choose to provide care to their loved ones.

It matters how you approach and what you learn from the caregiving experience: I’ve seen caregivers who felt entrapped by caregiving. I’ve seen caregivers who felt entranced by it. The latter works better. According to Hong Kong-based caregiving researcher Sheung-Tak Cheng, Ph.D., guiding caregivers toward identifying caregiving’s positive rewards —such as giving back to someone who has cared well for them or upholding some moral value—helps them avoid depression. I would speculate that finding the silver linings has even greater effects—allowing caregivers to go about their difficult work with more resolve and increased physiological benefit.

The responses of care recipients greatly impact caregivers: If caregivers’ efforts are cherished and not resented by care recipients, then those caregivers are more likely to feel positively about the work that they are doing. Conversely, the caregiver who is, say, preparing meals for a paranoid loved one convinced the food has been poisoned will be more frustrated and downtrodden. The care recipient’s response therefore often shapes the caregiver’s experience which affects the potential health-promoting effects of caregiving.

We are entering a time when a more nuanced and dynamic sense of family caregiving is coming into view. It includes positive aspects, including increased longevity. That may be surprising for some advocates or even some caregivers. But it is not surprising for the majority of people who strive sometimes valiantly, sometimes ambivalently to care for those they love.

  Barry Jacobs, PsyD, is the director of behavioral sciences for the Crozer-Keystone Family Medicine Residency Program, the author of The Emotional Survival Guide for Caregivers, and coauthor with Julia Mayer of AARP Meditations for Caregivers. He’s on the Caregiver Advisory Panel and writes a monthly column for AARP.org. Contact: barryjjacobs@gmail.com  

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