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The Beryl Institute invites members and guests to submit posts on patient experience related topics. For guidelines and information on submitting a post for consideration, contact michelle.garrison@theberylinstitute.org.

 

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Patient Experience Through Different Lenses

Posted By Katie Litterer , Friday, May 27, 2016

I am the proud mom of identical twin girls, Sophie and Maddie, who were born unexpectedly and prematurely in 2008.The years since their arrival have been tumultuous, triumphant and everything in between. For more about our story, please check out this recent article on Boston Children's Hospital's Thriving Blog.

To say that my husband,Paul, and I weren't ready to advocate for our children upon their arrival is an understatement. Fueled by adrenaline and fear I didn't know what questions to ask, I often struggled to understand what the medical team was communicating to us and I had no faith in myself when nurses would say, "You're the mom, you know your children best."

I stopped working to care and advocate for my daughters and, over the years, have become a mom I know they can count on. I have also turned my advocacy for them into a new career. I started this journey by serving on the Boston Children's Hospital Neonatal Intensive Care Unit Family Advisory Council from 2009-2011. Since 2012 I have served as a member of the hospi­tal-wide Family Advisory Council alongside 16 other parents. And,in January 2016, I joined the staff in our Hale Family Center for Families as a Family Partnerships Coordinator. In this role, I strive to weave the voice of patients and families into the fabric of decision making at Boston Children's. It's a role I cherish and feel honored to serve in.

These have become my "truths":

AS A PARENT:
Patient experiences are as much about Paul and me as they are about Sophie and Maddie. A great patient experience, for us, is defined both by medical outcomes and by Paul and me tak­ing part in finding solutions. Within this experience process, I advocate until I am satisfied that I've done my best for my children, and I expect our care team to understand and respect that.

AS A FAMILY ADVISOR:
Working alongside other volunteer family advisors has taught me and that every family has their own patient experience stories, perspectives and priorities. While my natural tendency is to ad­vocate for what I believe would suit my own family best, I remind myself that it's important to col­laborate with-and respect the perspectives of-other advisors to achieve our larger group goals.

AS A FAMILY PARTNERSHIPS COORDINATOR:
I recognize that experiences are determined both at and beyond the bedside; that improving patient experience within an organization is a fluid team effort; that there is no singular equation that guarantees a positive outcome every time. At a recent Patient Experience Summit, Juliette Schlucter, Director of Child and Patient Experience at NYU Langone Medical Center, shared a view that deeply resonates with me. It is that if you want to affect great change, you must be willing to listen to the other voices in the room. She was talking about collaboration.

As a parent, a volunteer family advisor and now, as a hospital employee, I have gained different perspectives on what patient experience means and how a great patient experience can be achieved.

 

Katie Litterer spent 10 years working in the financial services industry before becoming a mother to identical twin girls, Madeline and Sophie, born at 27 weeks gestation. With care experiences at 5 hospitals in two states, Katie began volunteering her voice as a family advisor in 2009. Katie now juggles her role as a Family Partnerships Coordinator at Boston Children's Hospital with her most important job, caring and advocating for her sweet girls. Katie is also an active member of her daughters' school community in addition to serving as trustee for a charitable private foundation that supports archaeological research of native peoples in the Americas.

Tags:  collaboration  journey  patient and family advisor  patient and family advisory council  pediatric  story 

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Universal Children’s Day Reminds Us of Our Impact on Pediatric Patient Experience

Posted By Martie L. Moore, Sunday, November 1, 2015
Updated: Monday, November 2, 2015

"The one thing all children have in common is their rights. Every child has the right to survive and thrive, to be educated, to be free from violence and abuse, to participate and to be heard.”1 - Secretary-General Ban Ki-moon

As a former pediatric nurse and expert witness for child protection services, I’ve spent a lot of time caring for children in the hospital and home setting. I know one of the greatest things I’ve learned is that we as caregivers can empower children during difficult situations. The need to support the wellbeing of children extends beyond healthcare: It is a universal initiative.

Universal Children’s Day on Nov. 20—unlike the traditional Mother’s Day or Father’s Day recognized in the United States— was established by the United Nations General Assembly in 1954. All countries are encouraged to promote not only mutual exchange and understanding among children, but also to initiate action to benefit and uphold the wellbeing of children around the world.

Children in the U.S. may not always face the same frightening conditions as elsewhere in the world. But this day helps us to remember that we as clinicians still have a responsibility to create an atmosphere that supports the children under our care. We know that the less stress and anxiety a child has, the better their ability to cope in a stressful situation. Hospitalization is one of the stressful situations that we can do something about.

Improving patient experience is already a major target for hospitals, and hospitals are measured and paid based on HCAHPS surveys completed by adult patients. In October 2014, the Agency for Healthcare Research and Quality posted a pediatric version of the HCAHPS survey. This pediatric survey is under review this year as a possible benchmark on which to base hospitals’ Medicaid and Children’s Health Insurance Program reimbursements, leading to the expectation that this pediatric HCAHPS survey will ultimately factor into reimbursement as the adult equivalent does now for Medicare.2

Now is the time to be thinking about how to address this special population. The ways you care for children in your facility can go a long way toward producing a positive experience for both the patient and their loved ones.

Make the Hospital A Safe Place for Children

We all know hospitals can be a very scary place for anyone, let alone children. A child doesn’t know what to expect, and is constantly meeting new strangers. He or she may not understand what’s happening to them. They could be experiencing pain from their illness, the treatment, or both.

So how do we make the hospital a place where a child can feel safe, participate, and be heard? You can make a big impact with small changes: Start with what they’re wearing. Pajamas are a great source of comfort, and while the child’s personal pajamas may not be an option, your facility can still stock pediatric gowns that promote comfort and modesty, have kid-friendly prints, and feel soft like the pajamas they may wear at home. Consider pediatric gowns with MRI-safe plastic snaps that negate multiple gown changes.

While using pediatric gowns that evoke the comforts of home, also be sure that a child’s hospital bed is a safe place. Avoid performing any painful treatments while they are in their hospital beds so that it remains a haven that they can trust.

You can also help by communicating directly with your patients. Talk to them, not at or above them, so they understand what is happening. Speak at their level, both intellectually and physically, crouching or sitting down to look them in the eye.

You may even choose to draw pictures to help demonstrate what is going on inside their bodies or a treatment they are about to experience. Many children "play nurse or doctor” at home; offer to let them participate in their care by holding the stethoscope, counting with you for their pulse or heartbeat, or perhaps picking a favorite color for a bandage or cast. Your conversation may also help distract them from their pain. The fun prints on their gown featuring friendly animals or characters could be a conversation starter in itself. Ask them about pets, sports, movies, or their funniest joke. A good belly laugh does wonders for the soul!

Good communication involves good listening. Take the time to hear what a child says to you. You could learn that something as simple as a special toy or a quick trip outside for some fresh air could make him or her feel better.

Listening and observing may also help you uncover any signs of abuse. If you observe these signs, stay calm and report the suspected abuse immediately per your facility protocols.

You Make a Difference

Every day, clinicians make a big difference in the lives of the children they care for. Make yours a good difference. Delivering extraordinary care to our children can change lives, helping them grow up to be healthy and successful adults who can protect the next generation of youth around the world.

Sources
1. Universal Children’s Day. Available at: http://www.un.org/en/events/childrenday/. Accessed October 15, 2015.
2. CMS may use new child HCAHPS to adjust Medicaid hospital pay. Available at: http://www.modernhealthcare.com/article/20150108/NEWS/301089948. Accessed October 15, 2015.

Martie L. Moore is chief nursing officer of Medline Industries, Inc. based in Mundelein, Ill, a leading provider of medical products and clinical solutions across the continuum of care. In this role, Moore provides nursing leadership for solution-driven clinical programs, delivers product development to enhance bedside practice and launches quality initiatives across the continuum of care. With what she learned during the nearly 30 years of clinical experience and extensive executive leadership, Moore now develops forward-thinking solutions and programs for those in the field today.

Tags:  HCAHPS  Hospital  patient experience  patient safety  pediatric 

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Why the Patient Experience Matters to a Passionate Parent

Posted By Gail Gabby Katon, Thursday, May 7, 2015
Updated: Thursday, May 7, 2015

I am honored to have been chosen as a recipient of The Beryl Institute’s 2015 Patient Experience Conference Patient/Family Scholarship. As a mother of two chronically ill boys, I have spent six years as a parent at the bedside. I want to help other patients and their families have the best Patient Experience possible.

For someone looking for knowledge and inspiration, the annual conference was the place to be! Imagine 800 people coming together to participate (not just attend!) in conversations about improving the Patient Experience. We all had different perspectives, yet we are all on the same journey. What could be more motivating than finding 799 other people who want to work together to achieve the same goal?

The energy at the conference was stimulating and the drive to make a difference was contagious. I found it refreshing to find that in our industry, individuals don’t just have careers. Each has his or her own patient story and is on a mission to make something happen as a result of it. That is why I was there too.

Jack and Frank, our twin boys, were born with Pontocerebellar Hypoplasia Type II. It is a rare, genetic, neurodegenerative disease. Jack and Frank were born 10 weeks early and spent the first four months of their lives in the NICU. When our babies finally came home, our house became the Katon Infirmary. Jack and Frank started seeing many specialty physicians and had weekly physical and occupational therapy sessions. And of course, the twins spent more than their fair share of time in the Emergency Department and as inpatients too.

Our family has had good patient experiences and also bad ones. What frustrated me most was that the unpleasant incidents were for the most part avoidable! When I complained to the hospital, my comments fell on deaf ears. Then, it occurred to me that I should offer solutions instead. Once I did, they started listening! I soon joined the Patient Family Advisory Committee and helped in any way I could.

The inevitable happened, and my Frankie died at 23 months of age on February 6, 2010. Jack died four years later on June 2, 2014. How do I cope with the horrific loss of my beautiful, precious boys? I feel that something good MUST come from their short, yet so meaningful lives. Hence, I am committed to helping other families have the best hospital stay possible. It is what Jack and Frank would have wanted their Mommy to do.

Personal stories were shared at the conference too. Two of the most poignant presentations were those of the keynote speakers. Allison Massari taught us how compassion can heal wounds that medicine cannot touch. Regina Holliday told us about her husband’s heart wrenching story through her art. Today, his memory lives on as she works to improve the transparency of medical records and promotes patient engagement. Surprisingly, patient-centered still isn’t the standard of care in all hospitals.

I have learned so much from participating in Patient Experience Conference. My top four takaways were:

  1. Every hospital is set up differently. All aspects of culture such as cascading top down goals, transparency, employee engagement and accountability are interconnected and affect the patient experience.
  2. To improve physician engagement, offer doctors a tool to improve their HCAHPS scores. They want to improve the patient’s experience, but might not know now to do it.
  3. Patient Experience is becoming a priority for hospitals nationwide. More organizations are recruiting Chief PX Officers and growing the size of their support teams. Patient Family Advisory Councils are more valued as hospitals realize that the patient and family voices matter too. And finally, clinical outcomes have shown to be impacted by positive patient experiences.
  4. You matter. All voices matter. We ARE the patient experience!

Overall, The Beryl Institute’s PX2015 Conference was enlightening, motivating, and emotional. Participants were encouraged to meet each other, share best practices and discuss their own patient stories. I genuinely felt that everyone with whom I spoke shared my goal and wanted to help me succeed. Thank you to The Beryl Institute for making it possible for me to participate in such an extraordinary event!

Gail Gabby Katon is a Patient Family Advisor and currently completing a Patient Experience internship with a large healthcare system in Dallas. She is passionate about the Patient Experience and is preparing to become a Patient Experience Coach.

Tags:  family engagement  patient experience  Patient Experience Conference  pediatric  person-centered care 

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Reflecting Back on The Patient Experience

Posted By Hannah Doty, Tuesday, November 18, 2014
Updated: Monday, November 17, 2014

People often talk about being deeply affected in their adult lives by experiences in their childhood—For example, if you had a bad experience with a dog, you may be afraid of dogs. Or if you had an amazing teacher in third grade, you’ll always remember her and the book she read to you. This same sort of lasting impression is made on kids who are hospitalized for long periods of time. In this respect, the pediatric-patient experience is extremely important since it can affect not only the healing process, but how a person views encounters with health professionals for the rest of his/her adult life.

The hospital is a microcosm—often the only world a child knows if they aren’t able to go home or attend school for long periods of time. A child who is hospitalized will not refer to that time in their life as their "Hospital Experience,” but rather their LIFE experience.

As a childhood cancer survivor, I now find myself reflecting on that time in my life to determine how it has impacted me and shaped me as an adult.

Overall, I believe my experience as a patient was more positive because my parents were actively involved in making sure I could continue to be "me” while in the hospital. I never felt like my identity was "Cancer Patient.”

Part of "me” was drawing and doing art projects. I often shared my artwork with doctors and nurses and involved them in my projects when I could; I asked the nurses and doctors to sign my scrapbooks, take pictures with me, and look at my drawings. I was able to create personal moments with medical staff through my own initiative and these moments helped me to cope much better.

Looking back, I think there were also missed opportunities. If all encounters with medical personnel could have started with a real interest and curiosity about me – Hannah – and not my disease, I wonder how much more positive those daily interactions would have been for all involved. I think I would have been more cooperative in some trying times rather than thinking, "I don’t like this person.” Or even worse: "I’m not going to tell them what hurts.” For children less expressive and/or outgoing than I was, the need for doctors and others to actively pursue genuine non-medical interest seems even more crucial for the best patient experience and outcomes.

Medical professionals who interact with children in the hospital are in many ways substitutes for the other people who are normally in a child’s daily life: teachers, classmates, friends, coaches, etc. As an important person in a child’s life, a doctor/nurse affects how a child views himself. This role is probably not one that a medical professional thinks about – their main job of course is to help a child get well. But when a health professional takes the time to initiate and share a personal moment with a child (discovering a common interest, sharing a joke, drawing together, etc.) there is a tremendous impact not only upon the child’s current health and experience, but upon his/her sense of self and long-term attitudes toward the medical profession.

Because these moments meant so much to me, I strongly encourage medical professionals to consciously create "me moments” with children in the hospital. I believe in doing so, everyone’s experience will be greatly improved and the positive impact will last a lifetime.

Hannah Doty is the founder of V.I.P. Hospital Productions—an organization with a non-profit branch that creates customized entertainment to enhance the experiences of hospitalized kids and promote positive interactions with their medical team.

Tags:  children's medical experience  improving patient experience  patient  patient experience  pediatric  perspective  physician communication 

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