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221110 ||| eng |
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|a 9783036550909
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|a 9783036550893
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|a books978-3-0365-5090-9
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|a Wiener, Lori
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|a Psychosocial Considerations for Children and Adolescents Living with Rare Diseases
|h Elektronische Ressource
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| 260 |
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|b MDPI - Multidisciplinary Digital Publishing Institute
|c 2022
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| 300 |
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|a 1 electronic resource (204 p.)
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|a development
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|a pediatric chronic illness
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|a parenting stress
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|a families
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|a parents
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|a genetic or rare diseases
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|a parental need
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|a n/a
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|a family burden
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|a health outcomes
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|a preschool-age children
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|a adolescents and young adults
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|a palliative care
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|a social support
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|a psychosocial distress
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|a transition readiness
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|a decision-making
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|a psychosocial difficulties
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|a emotional-behavioral problems
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|a medullary thyroid carcinoma
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|a pediatrics
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|a psychosocial support
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|a advocacy
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|a childhood cancer
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|a urea cycle disorders
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|a Psychology / bicssc
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|a communication
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|a inherited metabolic diseases
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|a neoplasm
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|a children
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|a healthcare needs
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|a cognitive functions
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|a sibling
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|a equity
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|a oncology
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|a special needs
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|a public health approach
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|a adolescents
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|a gender differences
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|a rare diseases
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|a emotions
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|a policy
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|a advance care planning
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|a rare disease
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|a caregiving
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|a pediatric
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|a compassionate communities
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|a illness perception
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|a siblings
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|a family caregiver
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|a medical complexity
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|a cancer
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|a E-IMD
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|a chronic illness
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|a end-of-life care
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|a interventions
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|a care coordination
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|a Beckwith-Wiedemann syndrome
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|a family caregivers
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|a complex chronic conditions
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|a bereavement
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|a adaptation
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|a age-appropriate
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|a psychosocial
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|a life-limiting conditions
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|a psychomotor development
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|a psychosocial care
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|a psychological
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|a young adults
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|a AYA transition
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|a social adjustment
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|a pediatric to adult transition
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| 700 |
1 |
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|a Lyon, Maureen E.
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1 |
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|a Wiener, Lori
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|a Lyon, Maureen E.
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0 |
7 |
|a eng
|2 ISO 639-2
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| 989 |
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|b DOAB
|a Directory of Open Access Books
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| 500 |
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|a Creative Commons (cc), https://creativecommons.org/licenses/by/4.0/
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|a 10.3390/books978-3-0365-5090-9
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|u https://www.mdpi.com/books/pdfview/book/6087
|7 0
|x Verlag
|3 Volltext
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4 |
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|u https://directory.doabooks.org/handle/20.500.12854/93190
|z DOAB: description of the publication
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|a 610
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|a 100
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|a 333
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|a 380
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|a 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.
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