LEADER 04546nam 2201213z- 450 001 9910619466903321 005 20221025 010 $a3-0365-5090-9 035 $a(CKB)5670000000391605 035 $a(oapen)https://directory.doabooks.org/handle/20.500.12854/93190 035 $a(oapen)doab93190 035 $a(EXLCZ)995670000000391605 100 $a20202210d2022 |y 0 101 0 $aeng 135 $aurmn|---annan 181 $ctxt$2rdacontent 182 $cc$2rdamedia 183 $acr$2rdacarrier 200 00$aPsychosocial Considerations for Children and Adolescents Living with Rare Diseases 210 $cMDPI - Multidisciplinary Digital Publishing Institute$d2022 215 $a1 online resource (204 p.) 311 08$a3-0365-5089-5 330 $aThis 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. 606 $aPsychology$2bicssc 610 $aadaptation 610 $aadolescents 610 $aadolescents and young adults 610 $aadvance care planning 610 $aadvocacy 610 $aage-appropriate 610 $aAYA transition 610 $aBeckwith-Wiedemann syndrome 610 $abereavement 610 $acancer 610 $acare coordination 610 $acaregiving 610 $achildhood cancer 610 $achildren 610 $achronic illness 610 $acognitive functions 610 $acommunication 610 $acompassionate communities 610 $acomplex chronic conditions 610 $adecision-making 610 $adevelopment 610 $aE-IMD 610 $aemotional-behavioral problems 610 $aemotions 610 $aend-of-life care 610 $aequity 610 $afamilies 610 $afamily burden 610 $afamily caregiver 610 $afamily caregivers 610 $agender differences 610 $agenetic or rare diseases 610 $ahealth outcomes 610 $ahealthcare needs 610 $aillness perception 610 $ainherited metabolic diseases 610 $ainterventions 610 $alife-limiting conditions 610 $amedical complexity 610 $amedullary thyroid carcinoma 610 $an/a 610 $aneoplasm 610 $aoncology 610 $apalliative care 610 $aparental need 610 $aparenting stress 610 $aparents 610 $apediatric 610 $apediatric chronic illness 610 $apediatric to adult transition 610 $apediatrics 610 $apolicy 610 $apreschool-age children 610 $apsychological 610 $apsychomotor development 610 $apsychosocial 610 $apsychosocial care 610 $apsychosocial difficulties 610 $apsychosocial distress 610 $apsychosocial support 610 $apublic health approach 610 $arare disease 610 $arare diseases 610 $asibling 610 $asiblings 610 $asocial adjustment 610 $asocial support 610 $aspecial needs 610 $atransition readiness 610 $aurea cycle disorders 610 $ayoung adults 615 7$aPsychology 700 $aWiener$b Lori$4edt$01293874 702 $aLyon$b Maureen E$4edt 702 $aWiener$b Lori$4oth 702 $aLyon$b Maureen E$4oth 906 $aBOOK 912 $a9910619466903321 996 $aPsychosocial Considerations for Children and Adolescents Living with Rare Diseases$93022808 997 $aUNINA