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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| Year of Publication: | 2022 |
| Language: | English |
| Physical Description: | 1 electronic resource (204 p.) |
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(CKB)5670000000391605 (oapen)https://directory.doabooks.org/handle/20.500.12854/93190 (EXLCZ)995670000000391605 |
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Wiener, Lori edt Psychosocial Considerations for Children and Adolescents Living with Rare Diseases MDPI - Multidisciplinary Digital Publishing Institute 2022 1 electronic resource (204 p.) text txt rdacontent computer c rdamedia online resource cr rdacarrier 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. English Psychology bicssc 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 3-0365-5089-5 Lyon, Maureen E. edt Wiener, Lori oth Lyon, Maureen E. oth |
| language |
English |
| format |
eBook |
| author2 |
Lyon, Maureen E. Wiener, Lori Lyon, Maureen E. |
| author_facet |
Lyon, Maureen E. Wiener, Lori Lyon, Maureen E. |
| author2_variant |
l w lw m e l me mel |
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HerausgeberIn Sonstige Sonstige |
| title |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| spellingShingle |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_full |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_fullStr |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_full_unstemmed |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_auth |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_new |
Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
| title_sort |
psychosocial considerations for children and adolescents living with rare diseases |
| publisher |
MDPI - Multidisciplinary Digital Publishing Institute |
| publishDate |
2022 |
| physical |
1 electronic resource (204 p.) |
| isbn |
3-0365-5090-9 3-0365-5089-5 |
| illustrated |
Not Illustrated |
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AT wienerlori psychosocialconsiderationsforchildrenandadolescentslivingwithrarediseases AT lyonmaureene psychosocialconsiderationsforchildrenandadolescentslivingwithrarediseases |
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Psychosocial Considerations for Children and Adolescents Living with Rare Diseases |
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