Caregiver Toolkit > Caregiver Resources
Caregiver Resources
This is a summary list of resources that might be helpful to transplant caregivers. We encourage you to read through and find what might be helpful to you!
The authors of this list do not represent or endorse the websites on the list.
The United Network for Organ Sharing (UNOS) is a private, non-profit organization that works with the federal government to make sure access to donated organs is fair. For more information about the organ transplant process, policies, and matching:
These non-profit organizations offer free education, peer support, and resources to family caregivers:
The Transplant Recipients International Organization (TRIO) is a non-profit organization that offers transplant specific education and resources:
The United Hospital Fund created “Next Step in Care: Family Caregivers and Health Care Professionals Working Together” to help patients transition from the hospital to home. Download practical advice and easy-to-use guides:
The National Institute of Health offers videos and written tips on how to communicate effectively with your physicians and other healthcare providers:
EduMed offers a comprehensive guide with tools, resources, and practical solutions for caregivers:
The US Department of Agriculture offers a guide for how to handle food safely when you take care of a transplant patient:
Family Medical Leave Act (FMLA)
- https://www.dol.gov/agencies/whd/fmla/faq
- US Department of Labor: Need Time? The Employee’s Guide to the Family and Medical Leave Act: https://www.dol.gov/agencies/whd/fmla/employee-guide
- FMLA Breakdown by State: http://www.employmentlawhq.com/state-by-state-map.html
Family Responsibilities Discrimination
- File Complaints Through the Equal Employment Opportunity Commission: eeoc.gov
- File Complaints Through Your State: https://www.workplacefairness.org/filing-discrimination-complaint
Power of Attorney for Healthcare
- American Bar Association Healthcare Advance Planning Toolkit: https://www.americanbar.org/content/dam/aba/administrative/law_aging/2020-tool-kit-hcap.pdf
- State Specific Advance Planning Forms: https://www.americanbar.org/content/dam/aba/administrative/law_aging/2018-lnks-to-st-spcifc-advnc-drctv-frms.pdf
- Universal Power of Attorney for Health Care Form (not valid for use in New Hampshire, Ohio, Texas, Wisconsin, and Indiana): https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/power_atty_guide_and_form_2011/
- State specific statutes for legal next of kin: https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-sept-default-surrogate-consent-statutes.pdf
Managing Social Security/Veterans Benefits
Guardianship
- American Bar Association Adult Guardian Handbook by State: https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-gshp-adult-gship-hdbks-state.pdf
Paid Leave Programs by State:
https://nationalpartnership.org/economic-justice/state-paid-leave-laws/
Fundraising
- Help Hope Live: https://helphopelive.org/
- National Foundation for Transplants: https://transplants.org/
Self-Assessment for Caregiver Burnout, Depression, and Anxiety:
- Caregiver burnout: https://www.healthinaging.org/tools-and-tips/caregiver-self-assessment-interactive
- Depression: https://screening.mhanational.org/screening-tools/depression?ref=CAN
- Anxiety: https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961
Mental Health Assistance:
- How to Talk to Health Care Providers About Mental Health: https://www.nimh.nih.gov/health/publications/tips-for-talking-with-your-health-care-provider/index.shtml
- Psychology Today “Find a Therapist” Website: https://www.psychologytoday.com/us/therapists
- National Suicide Prevention Hotline: https://suicidepreventionlifeline.org/
- General Mental Health Resource, including what to look for if you worry about someone’s mental health: https://www.mentalhealth.gov/
- Many national groups have hotlines and help to find providers and resources
- National Institute of Mental Health: https://www.nimh.nih.gov/health/find-help/index.shtml
- National Alliance on Mental Illness (NAMI): https://www.nami.org/Find-Support/NAMI-HelpLine/Top-HelpLine-Resources
- USA Mental Health First Aid Resource List: https://www.mentalhealthfirstaid.org/mental-health-resources/
- US Department of Veteran Affairs Mental Health website: https://www.mentalhealth.va.gov/
- CDC Mental Health Tools and Resources: https://www.cdc.gov/mentalhealth/tools-resources/index.htm
- Mental Health America: https://www.mhanational.org/
- Substance Abuse and Mental Health Administration offers help finding substance abuse and mental health treatment: https://www.samhsa.gov/
- Substance abuse treatment: https://findtreatment.gov
Transplant Specific Caregiver Support Group Resources:
- UNOS Transplant Living Community support groups: https://transplantliving.org/community/support-groups/
- Transplant Recipients International Organization (TRIO): https://www.trioweb.org/chapters/active-chapters.html
- Transplant Caregiver Support: http://transplantfriends.ning.com/
- The Transplant Caregivers - Partners for Life Facebook Group: https://www.facebook.com/groups/PartnersForLife/
- Gift of Life Family House - Online Transplant Caregiver Support Group: https://www.facebook.com/groups/caregiverlifeline
Transplant Caregiver Videos:
- “Preparing for the Transplant Journey: A Guide for Patients and Their Caregivers” video: https://www.youtube.com/watch?v=GjD00PXbYgY
More Resources
Advanced Care Planning
- National Institute on Aging, “Advanced Care Planning: Health Care Directives”: https://www.nia.nih.gov/health/advance-care-planning-health-care-directives
Palliative Care
- National Hospice and Palliative Care Organization (NHPCO): https://www.nhpco.org/patients-and-caregivers/
- https://www.choosingwisely.org/wp-content/uploads/2018/02/Palliative-Care-AAHPM.pdf
- NIH National Institute on Aging, “What are Palliative Care and Hospice Care?”: https://www.nia.nih.gov/health/what-are-palliative-care-and-hospice-care
- NIH National Institute of Nursing Research Palliative Care Resources: https://www.ninr.nih.gov/newsandinformation/publications/palliative-care-resources
- National Hospice and Palliative Care Organization “Experiencing Grief”: https://www.caringinfo.org/planning/grief-and-loss/understanding-grief-and-loss/
Emergency Preparedness Resources (See also Heart Transplant Resources)
- Federal Emergency Management Agency (FEMA): 1-800-621-FEMA (3662) or 1-800-462-7585, https://www.fema.gov/
- Transitional sheltering assistance: https://femaevachotels.com/
- Resources for individuals, businesses, and communities:
- Disaster Relief information: https://www.benefits.gov/categories/Disaster%20Relief
- The American Red Cross: https://www.redcross.org/get-help.html
- American Thoracic Society Disaster Related Resources: https://www.thoracic.org/professionals/clinical-resources/disaster-related-resources/
When a patient does not accept care:
Preserving relationships while being a caregiver:
- National Kidney Foundation: https://www.kidney.org/
- American Kidney Fund: https://www.kidneyfund.org/
- National Institute of Diabetes and Digestive and Kidney Disease: https://www.niddk.nih.gov/
- US Department of Health & Human Services Organ Procurement and Transplantation Network: https://optn.transplant.hrsa.gov/learn/professional-education/kidney-allocation-system
- American Association of Kidney Patients: https://aakp.org/center-for-patient-engagement-and-advocacy/support-groups/
- Transplant Strong: https://transplantstrong.com/
- American Heart Association: https://www.heart.org/
- International Society of Heart and Lung Transplantation (ISHLT): https://www.ishlt.org/about/patient-resources
- Dilated Cardiomyopathy Foundation: https://dcmfoundation.org/
- My LVAD: https://www.mylvad.com/
- I Decide LVAD: https://patientdecisionaid.org/lvad/
- LVAD Gear: https://lvadgear.com/
- HeartMate LVAD: https://www.heartmate.com/patient
- MedTronic (HeartWAre LVAD): https://www.medtronic.com/us-en/patients.html
- UNOS “Lung” Information Page: https://transplantliving.org/organ-facts/lung/
- American Lung Association: https://www.lung.org/
- Lung Transplant Foundation: https://lungtransplantfoundation.org/
- International Guidelines for the Selection of Lung Transplant Candidates: https://www.atsjournals.org/doi/full/10.1164/ajrccm.158.1.15812
- Pulmonary Fibrosis Foundation: https://www.pulmonaryfibrosis.org/
- Cystic Fibrosis Foundation: https://www.cff.org/
- COPD Foundation: https://www.copdfoundation.org/
- International Society for Heart and Lung Transplantation (ISHLT): https://www.ishlt.org/about/patient-resources
- American Liver Foundation https://liverfoundation.org/
- https://liverfoundation.org/resource-center/caregiver-resources/
- Substance Abuse Resources:
- gov
- https://unityrecovery.org/digital-recovery-meetings
- 12-Step Groups
- AA Online Meeting Directory: https://aa-intergroup.org/directory.php
- AA – Online: http://12stepforums.net/alcoholics_anonymous_online_meeting.html
- AA COVID-19 Informational Page: https://www.aa.org/assets/en_US/en_updatesoncoronavirus.pdf
- Al-Anon – Online: http://12stepforums.net/alanon_family_group_online_meeting.html
- IDAA: https://www.idaa.org/
- NA Online Meetings “Addicts helping Addicts Recover”: http://na-recovery.org/
- NA – Online: http://12stepforums.net/narcotics_anonymous_online_meeting.html
- NA COVID-19 Informational: Page: https://www.na.org/admin/include/spaw2/uploads/pdf/Coronavirus_web_message_12Mar.pdf
- Online Recovery Group (ORG): https://onlinerecoverygroup.org/schedule
- Buddhism-Based Recovery: https://recoverydharma.online/
- Refuge Recovery: https://refugerecoverymeetings.org/meetings
- SMART Recovery: https://www.smartrecovery.org/
- LifeRing: https://www.lifering.org/online-meetings
- All Pathways: https://unityrecovery.org/digital-recovery-meetings
- United Network for Organ Sharing: https://unos.org/transplant/living-donation/
- American Liver Foundation: https://liverfoundation.org/for-patients/resources/brochures/
- UNOS Transplant Living: https://transplantliving.org/living-donation/
- National Living Donor Assistance Center: https://www.livingdonorassistance.org/How-to-Apply/Eligibility-Guidelines)
- American Society of Transplantation Living Donor Toolkit: https://www.livingdonortoolkit.com/
- Included within the Living Donor Toolkit:
- Living Donor Financial Toolkit - https://www.livingdonortoolkit.com/financial-toolkit
- Living Kidney Donor Medical Toolkit - https://www.livingdonortoolkit.com/medical-toolkit
- Living Liver Donor Medical Toolkit - https://www.livingdonortoolkit.com/living-liver-medical-toolkit
- Included within the Living Donor Toolkit: