Organ Transplant Support Team Services: What to Expect

Your family meets with members from our support team at the same time they meet with medical experts during your child’s initial pre-transplant evaluation. These one-on-one personalized sessions allow our support team to partner with your family to customize services and resources. We realize these needs change over time, which is why we’re available months and years later for your family.

Types of Pediatric Organ Transplant Support Services

Our support team meets regularly to share information and discuss patient concerns. The team is also constantly communicating important information to your child’s transplant medical team. This holistic approach ensures the medical team is aware of all aspects that affect your child’s well-being.

This collaborative approach ensures that we meet all your child’s physical and psychosocial needs. We help your family regain and maintain feelings of hope that will serve you and your child well throughout this experience.

Psychology support

Children and teens with organ transplants are at risk for emotional and behavioral challenges, such as post-traumatic stress, depression, anxiety, acting out and sleep problems. They may be sad about missing school and social activities. They may also feel anxious about their health, what it’s like to get an organ transplant and the ongoing care they need afterward.

The worry or stress of caring for a child with a serious medical condition may cause family members to feel anxious and depressed, too. A goal of the Pediatric Organ Transplant Support Team is for our patients and their family members to thrive emotionally despite the challenges they face with their medical condition.

We have pediatric psychologists and clinical therapists who specialize in helping children and families cope with the stress of organ transplantation. Our mental health specialists:

• Evaluate your child’s emotional, social, behavioral and educational well-being during the pre-transplant evaluation and as needed throughout the transplant journey

• Offer a range of in-person and virtual mental health therapies, including individual, family and group counseling, as well as play therapy for young children to help them cope with transplant concerns

• Provide support around taking daily medications and having frequent medical appointments to improve adherence

• Refer your child for a cardiac neurodevelopmental or neuropsychological evaluation, if needed

• Refer your child to one of our pediatric psychiatrists (if needed) for medications that can help improve mood and behavior

Child Life support

Our Child Life Program supports your child’s emotional needs during their time in the hospital. Child life specialists use age-appropriate language to help your child understand what to expect before, during and after transplantation.

In addition, a child life specialist may:

• Teach coping skills to help your child get through stressful medical procedures, such as blood draws and injections

• Collaborate with different team members to help promote a child’s growth and development

• Partner with our transplant pharmacists to teach your child pill-swallowing techniques, as well as strategies to promote adherence with medication taking

• Provide support to help siblings in the family understand what’s going on with their brother or sister

• Visit schools in-person or virtually to explain your child’s health situation to their classmates, school nurses and teachers

• Host Camp SOAR (Some Organ Assembly Required), an annual weekend retreat for teenaged organ transplant recipients

Social work support

Transplant can be a significant change for families. Your transplant social worker will walk alongside your family to help you navigate through this change and continue to support you after transplant. No matter what challenges arise, your social worker is a support for all family members. Our social workers have specialized training in helping families cope with the challenges of caring for a child with serious medical needs.

Social workers can help your family with:

• Transplant evaluations

• Emotional support

• Coping with diagnosis and need for transplant

• Family-specific needs assessment

• Connections to hospital and community resources

• Communication with your child’s medical team

• Lodging and transportation

• Billing and financial concerns

• Support groups

• Transitioning to adult care and future planning

Spiritual care

Our Spiritual Care and Education Department provides inclusive care for families of all faiths and belief systems. During your child’s initial evaluation, a chaplain will meet with you and your child to discuss your family’s spiritual or religious needs. Our team may offer spiritual play interventions to help your child express their spiritual feelings and thoughts. Spiritual play can enhance understanding of a child’s feelings and beliefs in a fun and interactive way.

We respect your family’s choices. It’s up to your family to decide what type of spiritual or religious care you want, if any.

Our spiritual care team members also provide:

• Blessings and prayers before organ transplantation or other procedures

• Chapel and worship services

• Interactive storytelling and spiritual play

• Listening and supportive presence

• Spiritual counseling

• Bereavement care

Research and Publications

Our Pediatric Organ Transplant Support Team is involved in research projects to better understand the experience of families impacted by pediatric organ transplant with a goal of improving care. We regularly publish articles in peer-reviewed journals and present our work at international and national conferences. See below for a sample of our work:

Triplett, K.N., Mayersohn, G.S., Masood, S.S., Pickwith, K., Mbroh, H., & Killian, M.O. (2022). Posttraumatic growth in youth, young adults, and caregivers who experienced solid organ transplant. Journal of Pediatric Psychology, 47(9), 965-977. Posttraumatic Growth in Youth, Young Adults, and Caregivers Who Experienced Solid Organ Transplant - PubMed (nih.gov)

Anton, C.M., Drake, M.B., Butts, R.J., Rezaeizadeh, A., Trivedi, M.H.., & Triplett, K.N. (2021). Electronic mental health screening in a pediatric heart failure and transplant clinic. Journal of Clinical Psychology in Medical Settings, 28, 815-825. Electronic Mental Health Screening in a Pediatric Heart Failure and Transplant Clinic | Journal of Clinical Psychology in Medical Settings (springer.com)

Triplett, K.N., El-Behadli, A., Masood, S., Sullivan, S., & Desai, D.M. (2019). Digital medicine program with pediatric transplant patients: Perceived benefits and challenges. Pediatric Transplantation, 23(7): e13555. Digital medicine program with pediatric solid organ transplant patients: Perceived benefits and challenges - PubMed (nih.gov)

Triplett, K.N., Mayersohn, G.S., Pelley, W., & Desai, D.M. (2019). Adolescents with suspected intentional overdose: Ethical considerations in determining liver transplant candidacy. Clinical Practice in Pediatric Psychology, 2(2). Adolescents with suspected intentional overdose: Ethical considerations in determining liver transplant candidacy. (apa.org)

Killian, M., Shuman, D., Mayersohn, G.S., & Triplett, K.N. (2018). Psychosocial predictors of medication non-adherence in pediatric organ transplantation: A systematic review. Pediatric Transplantation, 22(4). Psychosocial predictors of medication non-adherence in pediatric organ transplantation: A systematic review - PubMed (nih.gov)

Killian, M.O., Little, C.W., Howry, S.K., Watkivs, M., Triplett, K.N., & Desai, D.M. (2023). Demographic factors, medication adherence, and post-transplant health outcomes: A longitudinal multilevel modeling approach. Journal of Clinical Psychology in Medical Settings. Electronic publication Aug 17, 2023. Demographic Factors, Medication Adherence, and Post-transplant Health Outcomes: A Longitudinal Multilevel Modeling Approach | Journal of Clinical Psychology in Medical Settings (springer.com)

Additional Pediatric Organ Transplant Resources

Whether your child is getting a liver, heart or kidney transplant, your family has access to these Children’s Health resources:

• 5 Organ donation facts

• Family resource libraries

• Financial counseling for transplant patients and families

• Language and interpreter services

• Transplant patient education

• Transitioning to adult care services