Parents' Perspectives on Shared Decision Making for Children With Solid Organ Transplants.

Area of Science:

• Pediatric healthcare
• Transplant medicine
• Patient-centered care

Background:

• The Institute of Medicine emphasizes shared decision making (SDM) involving families and clinicians.
• Understanding parents' experiences in SDM is crucial for pediatric solid organ transplant recipients.

Purpose of the Study:

• To explore the decision-making experiences of parents whose children have undergone a solid organ transplant.
• To identify factors that facilitate or hinder shared decision making in this population.

Main Methods:

• Prospective longitudinal mixed methods study.
• Qualitative interviews conducted at 3 weeks, 3 months, and 6 months post-discharge.
• Involved 48 parents from five major U.S. children's medical centers.

Main Results:

• Parents expect to participate actively in SDM.
• Parents actively seek information to support their involvement in decision-making.
• Provider attributes such as being knowledgeable, transparent, approachable, accessible, dependable, and supportive significantly facilitate SDM.

Conclusions:

• Parents of pediatric transplant recipients anticipate and desire shared decision making.
• Healthcare providers can intentionally foster SDM by embodying specific professional attributes.
• Findings offer a framework for improving SDM in pediatric solid organ transplantation and other chronic illness contexts.