The psychosocial needs of children with rare diseases
A special issue of the journal Children, guest-edited by Maureen Lyon, Ph.D., clinical health psychologist at Children’s National Hospital, features a compilation of articles from a diverse group of professionals. The authors share their expertise on topics related to psychosocial considerations for children and adolescents living with rare diseases.
Co-edited by Lori Wiener, Ph.D., of the National Cancer Institute, the special issue contains articles addressing the psychosocial, neuropsychological and educational needs these children face as well as the impact on their family, friends and community.
According to Lyon and Wiener, “Living with a long-term medical condition, particularly if it is a rare disease, can have a profound impact on the lives of children and their caregivers. Our goal is to update readers on evolving research in the field and familiarize them with useful clinical knowledge and interventions.”
The issue contains 13 peer-reviewed manuscripts from around the globe, including Asia (Taiwan), Australia, Europe (Germany, Italy, Sweden, and Netherlands) and the United States. The following were authored by experts from Children’s National:
- Special Issue: Psychosocial Considerations for Children and Adolescents Living with a Rare Disease. Maureen E. Lyon and Lori Wiener
- Family-Centered Advance Care Planning: What Matters Most for Parents of Children with Rare Diseases. Karen Fratantoni, Jessica Livingston, Sandra E. Schellinger, Samar M. Aoun and Maureen E. Lyon
- “It Is a Whole Different Life from the Life I Used to Live”: Assessing Parents’ Support Needs in Paediatric Palliative Care. Samar M. Aoun, Roswitha Stegman, Renee Deleuil, Suzanne Momber, Lisa Cuddeford, Marianne B. Phillips, Maureen E. Lyon and Fenella J. Gill
- The Transition to Adulthood for Youth Living with Rare Diseases. Melanie Sandquist, TjaMeika Davenport, Jana Monaco and Maureen E. Lyon
Read the full issue of Psychosocial Considerations for Children and Adolescents Living with Rare Diseases.