Reprint

Psychosocial Considerations for Children and Adolescents Living with Rare Diseases

Edited by
September 2022
204 pages
  • ISBN978-3-0365-5089-3 (Hardback)
  • ISBN978-3-0365-5090-9 (PDF)

This is a Reprint of the Special Issue Psychosocial Considerations for Children and Adolescents Living with Rare Diseases that was published in

Biology & Life Sciences
Medicine & Pharmacology
Public Health & Healthcare
Summary

This Special Issue of the journal Children constitutes an opportune moment to reflect on the psychosocial needs of children living with rare diseases and of their families. As medical advances, treatments, and developments have enabled many of these children to survive infancy and to live into adulthood, progress brings with it concerns and opportunities to enhance the psychosocial quality of life of children living with rare diseases, and of their families.

This Special Issue reflects the current state of psychosocial research, which is primarily qualitative in nature. There are no scientifically rigorous randomized clinical trials to create an evidence base of effective psychosocial interventions for the provision of care to children with rare diseases and to their families; nevertheless, the papers within this Special Issue provide a reflection on the state of the science, including ideas about future research and practice. In this next section we share observations about the contributions made by each of the 13 articles, which cover a diverse range of topics.

Format
  • Hardback
License and Copyright
© 2022 by the authors; CC BY-NC-ND license
Keywords
cancer; childhood cancer; adaptation; psychological; neoplasm; oncology; sibling; social support; social adjustment; palliative care; end-of-life care; equity; public health approach; compassionate communities; caregiving; parents; psychosocial support; rare disease; advance care planning; decision-making; family caregiver; palliative care; psychosocial care; communication; pediatric; adolescents and young adults; healthcare needs; chronic illness; AYA transition; Beckwith–Wiedemann syndrome; emotional-behavioral problems; psychosocial difficulties; psychomotor development; preschool-age children; pediatric chronic illness; rare diseases; family caregivers; gender differences; genetic or rare diseases; health outcomes; illness perception; parenting stress; siblings; bereavement; palliative care; communication; emotions; psychosocial distress; pediatrics; complex chronic conditions; rare diseases; pediatric to adult transition; rare disease; special needs; interventions; care coordination; transition readiness; family burden; parental need; urea cycle disorders; E-IMD; inherited metabolic diseases; medullary thyroid carcinoma; psychosocial; pediatrics; young adults; palliative care; life-limiting conditions; pediatrics; adolescents; advance care planning; age-appropriate; development; cognitive functions; young adults; interventions; rare disease; children; families; medical complexity; care coordination; psychosocial; policy; advocacy; n/a