Supporting Family Caregivers During Hospital-to-Home Transitions.

Beryl Patient Experience Conference - Chicago, April 17, 2018

Resources

Let us know if you have Organizations, Tools, Articles to add

Organizations

Caregiving.com

Organization: Caregiving.com

Highlights: When you care for a family member or friend, we care for you. We’re a community of supportive individuals caring for a family member or friend. We care for parents, spouses, siblings, grandparents and anyone we consider family. We care for you before, during and after caregiving. Create your free account to join our daily, weekly and monthly chats, to start your blog and to connect with others who understand.

Find website here

Family Caregiver Alliance

Organization: Family Caregiver Alliance

Highlights:

Founded in the late 1970s, Family Caregiver Alliance is the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home.

FCA, as a public voice for caregivers, shines light on the challenges caregivers face daily and champions their cause through education, services, and advocacy.

The services, education programs, and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information, and tools to manage the complex demands of caregiving.

Find website here

VA Caregiver Support

Organization: VA Caregiver Support

Highlights: Caregivers play an important role in the health and well-being of Veterans. The Caregiver Support Program offers training, educational resources, and multiple tools to help you succeed. Please contact our Caregiver Support Line for advice on being a caregiver.

Find website here

Daughterhood Circles

Support Group: Daughterhood Circles

Highlights: Daughterhood circles are small groups that get together regularly to hang out, relax and help each other navigate caring for aging parents. A growing aging population means more people — particularly women — find themselves with unexpected responsibilities for a frail parent’s care. Daughterhood circles aim the power of community and friendship directly at the challenges that come with this new life phase.

Find website here

Caring.com

Organization: Caring.Com

Highlights: Senior Care Reviews and Resources. Find Senior Living Near You

Find website here

Caregiver Action Network

Organization: Caregiver Action Network

Highlights: iCAN Tech helps you sort through the world of high-tech caregiving products.

Find website here

Blogs and Columns

Caring for the Ages: Care Transitions

Column: Care Transitions

Highlights: Journal of The Society for Post-Acute and Long Term Care Medicine. Mary Anne Sterling has several columns here: Mobilizing Former Caregivers and Adults Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s

Find website here

Patient Engagement Tip of the Month

Blog: Patient Engagement Tip of the Month

Highlights: Geri Lynn Baumblatt coordinates and writes for this blog

Find the website here

Health Hats

Blog: Health Hats

Highlights: Danny van Leeuwen – Empowering people as they travel together toward best health. Use search terms: Caregiving, caregiver to find relevant posts

Find the blog here

Articles and Blog Posts

There is a Place at the Research Table for Patients and Family Caregivers

Blog Post: A New Era in Alzheimer’s Research has Arrived, and There is a Place at the Table for Patients and Family Caregivers

Highlights: By MaryAnne Sterling on PCORI’s blog about the Patient-Powered Research Network (PPRN) focused on Alzheimer’s disease and other dementias.

Find website here

Caring for the Caregiver in the Emergency Department

Article: Caring for the Caregiver in the Emergency Department

Highlights: Assessing a caregiver’s roles, capacities, vulnerabilities, and strengths, when done well, is a nonjudgmental process conducted by expert staff members who have the time and training to appreciate these often complex situations as well as a deep, practical understanding of possible solutions.

Find website here

Mobilizing Former Family Caregivers

Article: Mobilizing Former Family Caregivers

Highlights: Written by MaryAnne Sterling, published in Caring for the Ages in December 2017

Find article here

Communication at Transitions-One Audacious Bite at a Time

Article: Communication at Transitions-One Audacious Bite at a Time

Highlights: Written by Danny van Leeuwen in the Journal of Participatory Medicine. our health journey is teams of people at the center of care taking such actions to provide healthcare and service to us. During this journey, we transition from one setting to another, from one team to another, repeatedly. Communication knits this maze of actions, interactions, and transitions together. At its core communication is two or more people or parties sharing some information via some channel (voice, paper, digital, dramatic), one time or several times in a particular setting, hoping to accomplish something that moves us along in our health journey.

Find article here

Adult Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s

Article: Adult Daughters: Our Nation’s Front Lines of Caregiving in the Era of Alzheimer’s

Highlights: Written by MaryAnne Sterling in Caring for the Ages. Adult daughters are overwhelmed when it comes to Alzheimer’s caregiving. The health care system, policymakers, advocacy groups, communities, and faith-based organizations need to work with us to create real solutions. The expectation that adult daughters will automatically assume the role of caregiver for their aging parents with Alzheimer’s is not a solution.

Find article here

Time to Go Home: Hospice Care Transitions

Blog Post: Time to Go Home: Hospice Care Transitions

Highlights: Regina Holliday writes

It is a pattern oft repeated in a lifetime:
You go to the doctor’s office, get a prescription, and go home.
You go to the urgent clinic, get care, and go home.
You go the hospital, get better, and go home.

But some people are very surprised when they go to inpatient hospice, are stabilized and told to go home.

Find post here

A caregiver is NOT a caregiver, is NOT a caregiver

Blog post: A caregiver is [not] a caregiver, is [not] a caregiver

Highlights: Danny van Leeuwen writes: Whether you are a person with a chronic condition, a caregiver, a clinician, a health technology professional, insurer, policy wonk, or investor, understanding the dynamics of family caregiving will impact your success and effectiveness.

Find post here

Session Materials

Click to open panel on slider. To Print a PowerPoint slide deck, click on open with PowerPoint. When open click on banner to edit, then print as you usually would.  Or e-mail me and I’ll send you the file.

Panel Members

Geri Lynn Baumblatt

Health Communication and Engagement Consultant

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.

MaryAnne Sterling

VP at Livpact and Principal at Sterling Health IT Consulting

MaryAnne has provided over a decade of thought leadership in health IT and health policy. She is a longtime caregiver for her aging parents and a renowned speaker and educator on the impact of Alzheimer's Disease on family caregivers.

Danny van Leeuwen

Owner, Health Hats

As an action catalyst, I empower people traveling together toward best health (people as patients, caregivers, parents, clinicians, direct care staff, communities, and the people that support them). I wear many hats in healthcare:

-Patient with Multiple Sclerosis
-Care partner for several family members’ end-of-life journeys
-Nurse for 40+ years
-Informaticist
-QI leader
-Husband, Father, Opa, Musician

I specialize in patient/ caregiver/ clinician/ community relationships and the intersection between technology and the health journey.

Amy Cain

Client Services Director/Ops Consulting & Care Transitions, Emmi

Join the Conversation

Scroll to the bottom of the page to ask the panelists questions or enlighten us. The more the merrier!

Tools

Atlas CareMaps

Resource: Atlas CareMaps

Highlights: 

Caregiving happens within an ecosystem. Caregivers and the ones they care for are situated in systems of support, connected to others through networks and webs of relationships, shared experiences, and interactions.

At Atlas of Caregiving, we believe that in order to improve systems, we must first understand them. In this spirit, we’ve made it our mission to create practical tools that build on our understanding of the experiences of family caregivers while helping families and professionals better understand, and ultimately improve, their own lives. The first of these tools is the CareMap.

  • On this site, we have provided in detail  all the instructions and support you will need to draw your own CareMap.
  • On the Draw Your Own CareMap page, you will find a video that walks you through using the CareMap tool. You will also see Key Features and Tips.
  • On the Hand-Drawn CareMaps page, we have provided you video and instructions on how to draw a hand-drawn CareMap.
  • All CareMap instructions are available in Spanish, too. For the hand-drawn instructions, click here.

Find website here

Implementing Patient- and Family-Centered Rounds

Resource: Implementing Family- and Patient-Centered Rounds

Highlights: 

Each hospital’s setting is unique, so there is no best way to implement patient- and family-centered rounds.  We are happy to share what we have learned from our experience at Cincinnati Children’s and from teaching patient- and family-centered rounds at conferences and workshops.

Understanding each other’s points of view is an essential starting point.   We have learned that when physicians, nurses, allied health professionals and patients and their families discuss patient- and family-centered rounds, they are more likely to implement them.

We have created a facilitator guide and a series of video vignettes to assist you in your implementation strategy.  We hope these tools lead to a rich discussion among you, your colleagues and your patients and their families and will assist you in successful implementation of patient- and family-centered rounds at your institution.

Find website here

Health Literacy Tools for Providers of Medication Therapy Management

Resource:

Highlights: From the Agency of Healthcare Research and Quality (AHRQ) – Medication Therapy Management (MTM) is a patient-centric and comprehensive approach to improve medication use, reduce the risk of adverse events, and improve medication adherence. These health literacy tools can improve communication with MTM patients.

Find website here

The Patient Revolution

Resource: The Patient Revolution

Highlights:

Stories can inform, infect, irritate, and ignite a chain reaction that makes the status quo unsustainable. Stories are the first step in a push for healthcare that is careful and kind to each patient and community.

Our mission is to arm people to tell stories; stories about their lives, stories about their capabilities and limitations, and stories about what risks, benefits and trade-offs look like from their point of view. We want people to tell these stories in exam rooms and hospital rooms, in their communities and in the rooms where decisions get made.

Find website here

Roobrik Decision Aids

Tool: Roobrik Decision Aids

Highlights: Free online decision tools to help patients and their families make difficult health and care choices with clarity and confidence.

Find website here

Engaging Family Caregivers as Partners in Care Transitions

Resource: Engaging Family Caregivers as Partners in Care Transitions

Highlights: A United Hospital Fund Special Report by Carol Levine and others. The goal: to take on the challenge of examining how chronically ill patients are transitioned
from one care setting to the next, and how that transition could be improved by systematically involving family caregivers and arming them with better information, training, and support. Specific strategies to achieve that goal were:
• Inclusion of the family caregiver in medication reconciliation;
• Identification of post-discharge patient needs and discussion of patient discharge options with the
family caregiver;
• Discharge preparedness (training, expectations of the day of discharge);
• A well-orchestrated day of discharge;
• Closing the loop, including post-discharge communication with the family caregiver and the
receiving agency

Find the material here

Get Involved / Advocacy

iCare Team

Get Involved: iCare Team

Highlights:

  • Connect family caregivers with initiatives where their voices can be heard
  • Educate researchers, policy makers, and healthcare providers on a range of caregiving issues through thought leadership
  • Provide guidance from a “boots-on-the-ground” perspective on challenges we face across the healthcare continuum
  • Spearhead caregiver-centric pilot programs
  • Partner with researchers, policy makers, and healthcare providers to solve problems from the family caregiver perspective

Find website here

Brain Health Registry

Get Involved: If you are 18 years or over, you can help the Brain Health Registry speed up the discovery of treatments for Alzheimer’s, Parkinson’s, depression, PTSD, and other brain disorders. It takes just a few minutes to get started. For most people, participation takes less than three hours per year.

Find website here

UsAgainstAlzheimer's

Get Involved: UsAgainstAlzheimer’s

Highlights: UsAgainstAlzheimer’s Action (UsA2 Action) is a 501(c)(4) advocacy organization.  UsA2 Action is driven by passion and purpose and is powered by individuals living with dementia and their care partners. We forge innovative and comprehensive solutions to Alzheimer’s. We press for greater urgency and collaboration from government, industry and the scientific community in the quest for an Alzheimer’s cure. We act on those beliefs through strategic and disruptive investments in infrastructure, big data and national and global convening platforms. And we mobilize communities most deeply affected by the disease, including African Americans, Latinos, women, caregivers, veterans, the faith community and researchers.

Find website here

Patient Centered Outcomes Institute (PCORI)

Get Involved: Patient Centered Outcomes Research Institute (PCORI)

Highlights: PCORI’s patient-centered, stakeholder-driven approach to healthcare research not only shapes the research that we fund, but also influences changes in the culture of research more broadly.

Find website here

Galaxy: Our Data. Our Voice. Our Future.

Resource: Galaxy: Our Data. Our Voice. Our Future.

Highlights: Accelerating Alzheimer’s Research & Cures by Harnessing Our Collective Insights

Find website here

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