Pilot Study Protocol of a Mhealth Self‐Management Intervention for Family Members of Pediatric Transplant Recipients

Solid‐organ transplantation is the treatment of choice for end‐stage organ failure. Parents of pediatric transplant recipients who reported a lack of readiness for discharge had more difficulty coping and managing their child\u27s medically complex care at home. In this paper, we describe the protocol for the pilot study of a mHealth intervention (myFAMI). The myFAMI intervention is based on the Individual and Family Self‐Management Theory and focuses on family self‐management of pediatric transplant recipients at home. The purpose of the pilot study is to test the feasibility of the myFAMI intervention with family members of pediatric transplant recipients and to test the preliminary efficacy on postdischarge coping through a randomized controlled trial. The sample will include 40 family units, 20 in each arm of the study, from three pediatric transplant centers in the United States. Results from this study may advance nursing science by providing insight for the use of mHealth to facilitate patient/family–nurse communication and family self‐management behaviors for family members of pediatric transplant recipients

Individualized Family-Centered Developmental Care: An Essential Model to Address the Unique Needs of Infants With Congenital Heart Disease

Background: Infants born with critical congenital heart disease (cCHD) who require surgical intervention in the newborn period are often hospitalized in a cardiac intensive care unit (CICU). Cardiac surgery and the CICU environment are traumatic to infants and their families. Infants are exposed to overwhelming stress, which can result in increased pain, physiologic instability, behavioral disorganization, disrupted attachment, and altered brain development. Individualized Family-centered Developmental Care (IFDC) is a model that can address the unique needs and developmental challenges of infants with cCHD. Purpose: The purpose of this article is to (1) clearly describe the uniqueness of the infant with cCHD, including the medical, neurological, and parental challenges, and (2) propose methods to apply IFDC to support recovery of infants with cCHD in the CICU. Conclusions: The experiences in the CICU shape the developing brain and alter recovery and healing, thus adversely impacting development. Individualized Family-centered Developmental Care is a promising model of care that nurses can integrate into the CICU to promote neuroprotection and development. Nurses can effectively integrate IFDC into the CICU by understanding the unique characteristics of infants with cCHD and applying IFDC interventions that include both maturity and recovery perspectives. Clinical Implications: The incorporation of IFDC interventions is essential for the infant with cCHD and should be a standard of care. Applying IFDC with a recovery perspective in all aspects of caregiving will provide opportunities for individualization of care and parent engagement, allowing infants in the CICU to recover from surgery while supporting both short- and long-term neurodevelopment