04546nam 2201213z- 450 9910619466903321202210253-0365-5090-9(CKB)5670000000391605(oapen)https://directory.doabooks.org/handle/20.500.12854/93190(oapen)doab93190(EXLCZ)99567000000039160520202210d2022 |y 0engurmn|---annantxtrdacontentcrdamediacrrdacarrierPsychosocial Considerations for Children and Adolescents Living with Rare DiseasesMDPI - Multidisciplinary Digital Publishing Institute20221 online resource (204 p.)3-0365-5089-5 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.Psychologybicsscadaptationadolescentsadolescents and young adultsadvance care planningadvocacyage-appropriateAYA transitionBeckwith-Wiedemann syndromebereavementcancercare coordinationcaregivingchildhood cancerchildrenchronic illnesscognitive functionscommunicationcompassionate communitiescomplex chronic conditionsdecision-makingdevelopmentE-IMDemotional-behavioral problemsemotionsend-of-life careequityfamiliesfamily burdenfamily caregiverfamily caregiversgender differencesgenetic or rare diseaseshealth outcomeshealthcare needsillness perceptioninherited metabolic diseasesinterventionslife-limiting conditionsmedical complexitymedullary thyroid carcinoman/aneoplasmoncologypalliative careparental needparenting stressparentspediatricpediatric chronic illnesspediatric to adult transitionpediatricspolicypreschool-age childrenpsychologicalpsychomotor developmentpsychosocialpsychosocial carepsychosocial difficultiespsychosocial distresspsychosocial supportpublic health approachrare diseaserare diseasessiblingsiblingssocial adjustmentsocial supportspecial needstransition readinessurea cycle disordersyoung adultsPsychologyWiener Loriedt1293874Lyon Maureen EedtWiener LoriothLyon Maureen EothBOOK9910619466903321Psychosocial Considerations for Children and Adolescents Living with Rare Diseases3022808UNINA