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Psychosocial Considerations for Children and Adolescents Living with Rare Diseases

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 adult...

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Gorde:
Formatua: Online
Hizkuntza:ingelesa
Argitaratua: MDPI - Multidisciplinary Digital Publishing Institute 2022
Gaiak:
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
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
emotions
psychosocial distress
pediatrics
complex chronic conditions
pediatric to adult transition
special needs
interventions
care coordination
transition readiness
family burden
parental need
urea cycle disorders
E-IMD
inherited metabolic diseases
medullary thyroid carcinoma
psychosocial
young adults
life-limiting conditions
adolescents
age-appropriate
development
cognitive functions
children
families
medical complexity
policy
advocacy
n/a
bic Book Industry Communication::J Society & social sciences::JM Psychology
thema EDItEUR::J Society and Social Sciences::JM Psychology
Sarrera elektronikoa:ONIX_20221025_9783036550893_44
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