Hand/Arm Transplant Definition Status History Worldwide Performance Functional Outcomes Psychological Outcomes Patient Experiences Potential Benefits Limitations Unknowns Myths and Facts
Process Transplant Evaluation Process Who is Eligible Who Makes a Good Candidate Contacting a Transplant Center Meeting the Transplant Team After Evaluation What is Surgery Like
Risks Surgical and Medical Acute and Chronic Rejection Removing the Hand Anti-Rejection Medicine Pain and Discomfort Emotional and Social
Recovery Surgical Recovery Rehabilitation Process Lifestyle Changes Caregiver's Role
Decision-Making Optional Treatment Weigh All Options Mental Health Changes Social Support Commitments Financial Costs
Options Cosmetic Prostheses Body-Powered Prostheses Electric Prostheses Myoelectric Prostheses Switch and Pressure Sensors LUKE Arm Osseointegration No Prosthesis
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Home > Recovery > Caregiver's Role in Decision Making

Caregiver’s Role

 

Dr. Scott Tintle, Chief of Hand Surgery, talks about the characteristics of a good hand/arm transplant candidate.

 
 

Caregiver’s Role in Decision Making

Caregivers are an important part of the treatment decision-making process.

  • Caregivers are nonprofessional persons (e.g., spouse, parent, close friend, or other family member) who assist a hand/arm transplant recipient in tasks of daily living such as toileting, eating, dressing, cooking, and transportation, as well as medical tasks associated with rehabilitation.¹

  • Being mindful of a caregiver’s quality of life and well-being is an important consideration when making a decision about whether to pursue hand/arm transplantation.¹

  • Learn about the importance of social support for those pursuing hand/arm transplantation.

Caregiver’s Responsibilities

After a hand/arm transplant, caregivers will have new responsibilities such as:¹

  • Providing emotional and social support during hospital visits

  • Helping to manage the complex regimen of medicines

  • Performing wound care

  • Providing hand therapy at home

  • Monitoring the health of the transplanted hand and/or upper limb

 

Caregivers assist with activities of daily living, including:

Toilet icon

Toileting

Protecting privacy during toileting is important for hand/arm transplant recipients. Installing a bidet is a low cost and practical solution that may help recipients maintain privacy and dignity during toileting.

Tissue box with hand icon

Blowing nose, bathing

Blowing one’s nose and bathing may be difficult for hand/arm transplant recipients, and especially bilateral transplant recipients. Assisting with these activities may make them more manageable and comfortable.

Plate and utensils icon

Feeding oneself

Some recipients may need to obtain an adaptive device to work with a hand graft, which is different from a prosthetic adaptive device.

Clothing hanger icon

Getting dressed

People with hand/arm transplants may not be able to feel their own hand(s) for some time after the transplant. Helping them get dressed can solve this problem, as caregivers can assist with buttons and zippers. Additional solutions include wearing pants with elastic waist bands and clothes with Velcro fasteners.

Hand icon

Being careful with your hand

Recipients may not have complete awareness of their own hands (“proprioception”) for some time following the transplant. Splints provide protection to the recipient's hands/arms, minimizing risks.

How water coming out of sink icon

Being careful with the temperature of hot water

Accidentally burning the transplanted hand/arm may cause a rejection episode. Be aware of the water temperature when washing hands, bathing, and cleaning. Adjusting the temperature at the water heater can help.

Stove cooking icon

Cooking

Until some sensation returns (e.g., hot/cold, sharp/dull) it is dangerous for hand/arm transplant recipients to prep meals, cook on a stove, and take items out of the microwave. Even cleaning up the kitchen puts a recipient at risk for injury.

Sunscreen bottle icon

Using sunscreen to avoid sunburns

Sunburns are particularly dangerous for people with hand/arm transplants, as burns on the transplant may cause an acute episode of rejection. Caregivers may need to help apply sunscreen to transplanted hands/arms to protect the skin.

Steering Wheel icon

Driving

As a caregiver, giving rides to and from appointments and for errands can be very helpful to someone with hand/arm transplant(s).

 

Caregiver Respite

  • Caregivers can become overwhelmed and experience fatigue from doing a lot of caregiving. 

    • The first two years of the hand/arm transplant rehabilitation process are especially challenging and demanding. 

    • If caregivers do not get a break, their exhaustion can badly affect their ability to care for the recipient.²

  • Patients and their caregivers should discuss with professionals their expectations of how the hand/arm transplant may affect their relationship and each person’s quality of life before and after the procedure.¹

 

References

Sources

  1. Dorante MI, Devine E, Talbot SG. Should a Caregiver’s QOL Be Considered in Decisions About Whether a Patient Has an Experimental Double-Hand Transplant? AMA Journal of Ethics. 2019; 21(11):E943-952.

  2. Herrington E. What’s Missing in Our Thinking About Quality of Life in VCA? AMA Journal of Ethics 2019;21(11):E968-973.