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Caregiver Responsibilities
Legal and Financial Considerations
Special Considerations with Caregiving
Caregiver Quality of Life and Self-Care
Relationship Dynamics between Patients and Caregivers

Kidney Transplants
Liver Transplants 
Lung Transplants 
Heart Transplants
Living Donation 

Caregiver Responsibilities

  1. “Your Caregiver & You: Partners in Success.” Banner University Medicine Transplant Institute. 2020. 
  2. Engle D. (2001). Psychosocial aspects of the organ transplant experience: what has been established and what we need for the future. Journal of clinical psychology, 57(4), 521–549. https://doi.org/10.1002/jclp.1027
  3. Jesse MT, Hansen B, Bruschwein H et al Findings and recommendations from the organ transplant caregiver initiative: Moving clinical care and research forward. AJT, 2021; 21(3): 950-957
  4. Stages of Transplant (adapted from Balliet, W., 2019)

Legal and Financial Considerations

  1. US Department of Labor. FMLA Frequently Asked Questions. https://www.dol.gov/whd/fmla/fmla-faqs.htm Retrieved on 24 Aug 2019.
  2. Employment Headquarters.com. FMLA Laws by State.  http://www.employmentlawhq.com/state-by-state-map.html. Retrieved on 24 Aug 2019.
  3. National Partnership for Women and Families. State Paid Family and Medical Insurance Laws. June 2019. http://www.nationalpartnership.org/our-work/resources/workplace/paid-leave/state-paid-family-leave-laws.pdf. Retrieved on 24 August 2019.
  4. Workplace Fairness. Family Responsibilities Discrimination. https://www.workplacefairness.org/family-responsibilities-discrimination. Retrieved on 24 Aug 2019.
  5. American Bar Association Commission on Law and Aging. Ten Legal Tips for Caregivers from the ABA Commission on Law and Aging. 2016. https://www.americanbar.org/content/dam/aba/administrative/law_aging/caregiving_ten_tips.pdf. Retrieved 24 Aug 2019.
  6. American Bar Association Commission on Law and Aging. Giving Someone a Power of Attorney for your Healthcare (multi-state guide and form). 16 Aug 2018. https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/power_atty_guide_and_form_2011/. Retrieved 24 Aug 2019.
  7. American Bar Association Commission on Law and Aging. Tool kit for Health Care Advance Planning. 9 Jan 2019. https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/consumer_s_toolkit_for_health_care_advance_planning/. Retrieved 24 Aug 2019.
  8. American Bar Association Commission on Law and Aging. State-Specific Advance Planning Forms. 24 Jul 2018. https://www.americanbar.org/groups/law_aging/resources/health_care_decision_making/Stateforms/. Retrieved on 24 Aug 2019.
  9. American Bar Association Commission on Law and Aging. Giving Someone a Power of Attorney for Your Healthcare: A Guide With an Easy-to-Use, Legal Form for All Adults. 2011. https://www.americanbar.org/content/dam/aba/administrative/law_aging/2011_aging_hcdec_univhcpaform.pdf. Retrieved on 24 Aug 2019.
  10. American Bar Association Default Surrogate Consent Statutes. 15 Oct 2018.  https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-sept-default-surrogate-consent-statutes.pdf  Retrieved on 2/23/2021.
  11. Social Security Administration. When People Need Help Managing Their Money: Representative Payee. https://www.ssa.gov/payee/ Retrieved on 24 Nov 2020. 
  12. US Department of Veterans Affairs. Fiduciary. 28 Aug 2020. https://www.benefits.va.gov/fiduciary/index.asp. Retrieved on 24 Nov 2020.
  13. National Guardianship Association. What is Guardianship? 2019. https://www.guardianship.org/what-is-guardianship/. Retrieved on 24 Aug 2019.
  14. American Bar Association Commission on Law and Aging. Adult Guardian Handbooks by State. Jun 2019. https://www.americanbar.org/content/dam/aba/administrative/law_aging/2019-gshp-adult-gship-hdbks-state.pdf. Retrieved on 24 Aug 2019.
     

Special Considerations with Caregiving

  1. Hamyryluck, l. (n.d.). Cultural considerations in donation. Retrieved from https://www.cpd.utoronto.ca/endoflife/Slides/Organ%20Donation%20Cultural%20Considerations.pdf.
  2. International Federation on Ageing and Global Connections. (2014). Enquiring about family caregiving and their cultural differences. Retrieved from http://www.ifa-fiv.org/wp-content/uploads/2015/06/Enquiring-about-Family-Caregiving-and-their-Cultural-Differences.pdf.
  3. Lehman, D. (2009). 21st century caregivers: Diversity in culture, aging well, 2 (26). Retrieved from https://www.todaysgeriatricmedicine.com/archive/030209p26.shtml

Emergency Preparedness References

  1. American Red Cross, “Make a First Aid Kit.” Retrieved from https://www.redcross.org/get-help/how-to-prepare-for-emergencies/anatomy-of-a-first-aid-kit.html.
  2. American Thoracic Society. (2016). How to prepare for an emergency or disaster when you have lung disease or a sleep disorder.  Am J Respir Crit Care Med Vol. 194, P13-P14, 2016, ATS Patient Education Series, 2016.
  3. Centers for Disease Control and Prevention, “About flu.” Retrieved from https://www.cdc.gov/flu/about/index.html.
  4. Centers for Medicare and Medicaid Services (CMS). (2016). Medicare and Medicaid programs; Emergency preparedness requirements for Medicare and Medicaid participating providers and suppliers. Federal Register, Vol 81(180). 
  5. Centers for Medicare and Medicaid Services (CMS). Survey and Certification: Emergency preparedness for every emergency. Retrieved from https://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/SurveyCertEmergPrep. 
  6. Davis, K.J., O’Shea, G., & Beach, M. (2017). Assessment of risks posed to VAD patients during disasters. Prehosp Disaster Med. 2017; 32(4): 457-461.
  7. End Stage Renal Disease National Coordinating Center (ESRD NCC), “11 Things You can Do to Get Ready for a Kidney Transplant During COVID-19.” Retrieved from https://esrdncc.org/globalassets/covid-19/eleventhingstransplantcovid19508.pdf.
  8. Miller, A.C., & Arquilla, B. (2008). Chronic diseases and natural hazards: impact of disasters on diabetic, renal, and cardiac patients. Prehosp Disaster Med. 2008 Mar-Apr; 23(2):185-94. doi: 10.1017/s1049023x00005835. PMID: 18557300.
  9. National Kidney Foundation, “The flu shot after kidney transplant.” Retrieved from https://www.kidney.org/newsletter/flu-shot-after-kidney-transplant.
  10. Owens, W.R., Morales, D.L., Braham, D.G., Eastlee, C.N., Moss, M.M., Dunne, H.A., McGarry, M.C., Mueller, M.W., Shelton, R.J., Surprise, D.L., & Heinle, J.S. (2006). Hurricane Katrina: emergent interstate transport of an evacuee on biventricular assist device support. ASAIO J. 2006 Sep-Oct; 52(5):598-600. doi: 10.1097/01.mat.0000235488.44647.32. PMID: 16966867. 
  11. Sakashita, K., Matthews, W.J., & Yamamoto, L.G. (2013). Disaster preparedness for technology and electricity-dependent children and youth with special healthcare needs. Clin Pediatr (Phila). 2013 Jun; 52(6):549-56. doi: 10.1177/0009922813482762. Epub 2013 Mar 28. PMID: 23539684.
  12. World Health Organization, “Environmental health in emergencies.” Retrieved from https://www.who.int/environmental_health_emergencies/natural_events/en/.

Caregiver Quality of Life and Self-Care

1.         Self-care in the context of primary health care: Report of the Regional Consultation, Bangkok, Thailand, 7–9 January 2009. New Delhi: World Health Organization, Regional Office for South-East Asia; 2009. https://iris.who.int/handle/10665/206352

2.         Caregiver Bill of Rights, https://www.caregiver.org/caregiver%E2%80%99s-bill-rights

3.         Seattle Cancer Center Alliance- Patient and Family Education Brochures

            https://my.clevelandclinic.org/health/diseases/9225-caregiver-burnout 

            https://www.caregiver.org/emotional-side-caregiving

            https://www.mayoclinic.org/diseases-conditions/anxiety/symptoms-causes/syc-20350961

 

Relationship Dynamics between Patients and Caregivers

  1. Home Care Assistance, “Five Ways to Help a Parent with Dementia who Refuses Care.” Retrieved from https://homecareassistance.com/blog/five-ways-help-parent-refuses-dementia-care.
  2. Gift of Life, “Patient Compliance for Transplant Caregivers.” https://giftoflifehowieshouse.org/bridge-caregiver-support/bridge-post-transplant/patient-compliance-for-transplant-caregivers/.
  3. Select Healthcare Group, “What can you do when a Dementia Patient Refuses Care?” Retrieved from https://www.selecthealthcaregroup.com/what-can-you-do-when-a-dementia-patient-refuses-care-news-36.
  4. Caring Village, “Keeping Your Marriage Strong through Caregiving.” Retrieved from https://www.caringvillage.com/2019/02/08/keeping-marriage-strong-caregiving/.

Kidney Transplants 


 National Institute of Diabetes and Digestive and Kidney Diseases, https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/causes. 2020.

Liver Transplants

  1. Abara WE, Collier MG, Moorman A, et al. Characteristics of Deceased Solid Organ Donors and Screening Results for Hepatitis B, C, and Human Immunodeficiency Viruses — United States, 2010–2017. MMWR Morb Mortal Wkly Rep 2019; 68:61–66. DOI: http://dx.doi.org/10.15585/mmwr.mm6803a2
  2. Understanding the risk of transmission of HIV, hepatitis B, and hepatitis C from U.S. PHS increased risk donors. Available at: https://optn.transplant.hrsa.gov/ media/2270/dtac_guidance_risks_201706.pdf.

Lung Transplants 

1. Rosenberger, E. M., Dew, M. A., DiMartini, A. F., DeVito Dabbs, A. J., & Yusen, R. D. (2012).

Psychosocial issues facing lung transplant candidates, recipients and family caregivers. Thorac Surg

Clin, 22(4): 517-529.

2. Dellon, E. P., Shores, M. D., Nelson, K. I., Wolfe, J., Noah, T. L., & Hanson, L. C. (2009). Caregivers’ perspectives on decision making about lung transplantation in cystic fibrosis. Progress in transplantation, 19(4), 318–325.

3. The American Lung Association, https://www.lung.org/lung-health-diseases/lung-procedures-and-tests/pulmonary-rehab. 2020. Accessed April 7, 2023. 

4. Abara WE, Collier MG, Moorman A, et al. Characteristics of Deceased Solid Organ Donors and Screening Results for Hepatitis B, C, and Human Immunodeficiency Viruses — United States, 2010–2017. MMWR Morb Mortal Wkly Rep 2019; 68:61–66. DOI: http://dx.doi.org/10.15585/mmwr.mm6803a2 

5. Understanding the risk of transmission of HIV, hepatitis B, and hepatitis C from U.S. PHS increased risk donors. Available at: https://optn.transplant.hrsa.gov/media/2270/dtac_guidance_risks_201706.pdf. 

Heart Transplants

  1. Mayo Clinic. www.mayoclinic.org
  2. American Heart Association. https://www.heart.org/en/health-topics/cardiac-rehab/what-is-cardiac-rehabilitation
  3. Health and Human Services. https://optn.transplant.hrsa.gov/learn/about-transplantation/how-organ-allocation-works/
  4. Ely EW, Inouye SK, Bernard GR, et al. Delirium in mechanically ventilated patients: Validity and reliability of the Confusion Assessment Method for the Intensive Care Unit (CAM-ICU). JAMA. 2001;286(21):2703–2710. doi:10.1001/jama.286.21.2703
  5. Young L.E. Molzahn A. Starzomski R. Budz B. Families and heart transplantation: Reversing the trajectory of end stage heart disease. Can J Cardiovasc Nurs. 2010; 20: 6-17
  6. Abara WE, Collier MG, Moorman A, et al. Characteristics of Deceased Solid Organ Donors and Screening Results for Hepatitis B, C, and Human Immunodeficiency Viruses — United States, 2010–2017. MMWR Morb Mortal Wkly Rep 2019; 68:61–66. DOI: http://dx.doi.org/10.15585/mmwr.mm6803a2
  7. Understanding the risk of transmission of HIV, hepatitis B, and hepatitis C from U.S. PHS increased risk donors. Available at: https://optn.transplant.hrsa.gov/ media/2270/dtac_guidance_risks_201706.pdf.

Living Donation 

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This content was developed independently by AST and supported by a financial contribution from Sanofi