Abstract Background Complex vascular malformations (VMs) are rare disorders that can
cause pain, coagulopathy, disfigurement, asymmetric growth, and disability. Patients with …

Objective Families affected by rare diseases face many challenges finding adequate care
and often report poor communication with clinicians. In the current study, we explore patient …

Abstract Introduction Vascular malformations (VMs) are rare diseases that affect a wide age
range of patients and require complicated care and management. The strain these …

Abstract Background Vascular malformations (VMs) are rare disorders that can cause pain,
coagulopathy, disfigurement, asymmetric growth, and disability. Families affected by …

Background: The concept of uncertainty in illness has been well described and applied to
many different areas of nursing and other disciplines. Specifically, parental uncertainty in …

Effective communication in end‐of‐life care for pediatric cancer patients is crucial. Yet,
limited research focuses on the communication experiences of pediatric oncology nurses …

Parents of children with visible illnesses and physical differences, such as vascular
birthmarks (VBs), often fear that their child will be stigmatized by others. Despite their use of …

Background and objectives Initially developed as immunosuppressive agents, mammalian
target of rapamycin (mTOR) inhibitors are currently used widely in the management of …

Background Parents of newly diagnosed cancer children often experience significant
concerns about the implications of the diagnosis. They find themselves in challenging …

Purpose To gain a better understanding of parental decision making in situations of
uncertainty and multidisciplinary care, we explored parents' decision-making experiences …