Patient Facility Representative Alliance Resource Toolkit
Below you will find the IPRO ESRD Network Program developed resources for patients. Please use these in your advocacy work as a PFR to provide educational materials.
Mental Health Awareness Resources
- Working Through Feelings of Loss and Sadness Handout: English | Spanish
- Important Information for Kidney Patients About Substance Use Disorders Handout: English
- Depression and Dialysis - My Story: Read It!
- Support Groups - Creating Community: Read It!
- Alternative Approaches to Peer Mentoring Handout: Network 1|Network 2|Network 6|Network 9
- Support Group Tips: Network 1|Network 2|Network 6|Network 9
- Talking To Your Doctor About Mental Health: Worksheet
- NAMI You are Not Alone: Infographic
- NAMI Common Warning Signs of Mental Illness: Infographic
- NAMI Taking Charge of Your Mental Health: Infographic
Taking Care of Your Whole Body
- NIH Chronic Illness and Mental Health: Recognizing Depression
- American Kidney Fund: Depression in People with Kidney Disease
- How a Chronic Illness Can Affect Your Mental Health: Article
Staying Mentally Healthy
- Nine Ways to Improve Mental Health: Article
- Mindfulness Exercises: Video
- How Mindfulness Helps You Live in the Moment: Article
- 1-Minute Mindfulness Exercises: Link
- 22 Mindfulness Exercises, Techniques, and Activities: Link
- Simple Mindfulness Practices to Help You Through Difficult Times:
- Yoga
- Deep Breathing
- Exercise
- Journaling
- Meditation
- Keeping in touch with family and friends via phone and video chat
QAPI/Life Planning Resources
- Guidelines for Patient Representatives Who Attend QAPI Meetings: Handout
- How to Become Involved in Your Facility's QAPI Meeting: Video Resource
- Because Your Voice Matters!: Handout
- Module One: Patient Preference and Emotional Support: Video | Slides
- Module Two: Coordination of Care and Family and Friends: Video | Slides
- Module Three: Information and Education and Continuity and Transition: Video | Slides
- Module Four: Physical Comfort and Access to Care: Video | Slides
Grievance Resources
- Can You Ever be Discharged From a Facility? PDF Handout
- Kidney Chronicles: What is a Grievance?: English|Spanish
- Dialysis Patient Grievance Toolkit: English|Spanish
- Grievance Process Guide for Patients and Families Flyer (English): Network 1|Network 2|Network 6|Network 9
- Grievance Process Guide for Patients and Families Flyer (Spanish): Network 1|Network 2|Network 6|Network 9
- Grievance Process: Flyer
- We Can Help You: English
Peer Mentoring Resources
- Peer Mentoring Roles and Benefits
- Interested in Becoming a Patient Peer Mentor?
- Interested in Being Paired with a Peer Mentor?
- Peer Mentoring Frequently Asked Question
- Patient Alternative Approaches to Peer Mentoring
- Patient Alternative Approaches to Peer Mentoring
- Staying Connected Virtually (PDF)
- Peer Mentoring Training Part 1: Mentoring to Support Choices (PDF)
- Peer Mentoring Training Part 2: Talking Effectively with Another Patient (PDF)
- Interested in Becoming a Patient Peer Mentor?
- Interested in Being Paired With a Patient Peer Mentor?
- Reference Guide for Peer Mentors
- Getting the Conversation Started
Patient Facility Representative Alliance Resources
Healthy Living Resources
- Kidney Chronicles - How to Have a Healthy Vascular Access: English|Spanish
- Planning for Your Vascular Access Booklet (English): Network 1|Network 2|Network 6|Network 9
- Planning for Your Vascular Access Booklet (Spanish): Network 1|Network 2|Network 6|Network 9
- Questions or Concerns About Permanent Access? Let's Talk Booklet: Network 1|Network 2|Network 6|Network 9
- Cleanliness in the Clinic - How Speaking Up Can Prevent Infection: Read It!
- My Life is in Your Hands - Please Wash Them!: Read It!
- Get the Vaccines You Need! English | Spanish
- A Guide to Symptoms: English | Spanish
- Stay Safe This Winter: English | Spanish
- Get the Vaccines You Need - Brochure: English|Spanish
- My Vaccination Record: Booklet
- How Are You Feeling Today? Zone Tool: English | Spanish
- Healthy Feet are Happy Feet: English | Spanish
- We're Not Nosy--We Care: English | Spanish
- Don't Wait a Minute, Reducing Hospitalizations - Frequently Asked Questions: Patient Handout
- Suggestions on How to Help Avoid Hospitalization (Wallet Card): English | Spanish
Emergency Preparedness Resources
- Practices To Help Keep You Safe While Traveling To Your Healthcare Provider (ipro.org)
- Be Prepared for Emergencies (ipro.org)
- Preparing for Emergencies: A Guide for People on Dialysis (ipro.org)
- KCER Patient ID Card Template (ipro.org)
- Emergency Disconnect Procedure for In-Center Hemodialysis Patients (ipro.org)
- Emergency Mobile App Hub
Treatment Modality Resources
- ESRD NCC Intro. to Dialysis - Questions to Get You Started: English|Spanish
- ESRD NCC Intro. to Dialysis - Questions to Help With Your Treatment Choices: English|Spanish
- My Life my Dialysis Choice Webpage
- Home Dialysis Central MATCH-D (ask your dialysis team for assistance): Tool
- ESRD NCC Treatment Options patient resources LINK
- Home Peritoneal (PD) Myths vs. Reality: Handout
- You Have Options! Peritoneal Dialysis: Read It!
- Do you know your home treatment options? Handout
- Do you know all of your treatment options? Home Hemodialysis (HHD) Brochure
- Do you know all of your treatment options? Peritoneal Dialysis (PD) Brochure
- Seeing Yourself In a Positive Light with a Peritoneal Dialysis Catheter: English | Spanish
- How Old is Too Old for Home Dialysis? English | Spanish
FIVE STEPS TOWARDS TRANSPLANT
- Interest in Transplantation
- What is a Kidney Transplant: English|Spanish|Video
- Get the Facts: Kidney Transplantation: English|Spanish
- Do You Know Your Treatment Options Brochure: English|Spanish
- How Much Does a Kidney Transplant Cost: English|Spanish
- Planning for a Kidney Transplant: English|Spanish
- Turning Negatives into Positives: Why transplant is a good idea for me! English|Spanish
- Patient Stories
2. Referral to Transplant
Kidney Transplant Compare: Flyer|Website
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- This desktop and mobile application allow patients to find kidney transplant education as well as search and compare transplant centers by their location, medical selection criteria, and support services. Information available on this application can allow you as a patient find the transplant center that is best for you.
- The Road to Transplant Brochure: English|Spanish
- Preparing for a Kidney Transplant: English|Spanish
- What is a Transplant Center?: English|Spanish
- Transplant Evaluation
- Partnering Along the Road to Transplant: English|Spanish
- Meet the Members of the Transplant Team: English|Spanish|Video
- Transplant Workup Appointment Checklist
- Types of Kidney Donors: English|Spanish
- Waitlist and Living Donation
- Wait Less- Shorten Your Wait for a Kidney Transplant: English|Spanish
- 10 Steps to Remain Active on the Waitlist: English|Spanish
- Understanding High-KDPI Video
- Better than Dialysis Kidneys: English
- Living Donation: Your Best Option: English|Spanish
- The Kidney Transplant Surgery: English|Spanish
- Post Transplant