Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing?
McConkie‐Rosell A, Hooper SR, Pena LDM, Schoch K, Spillmann RC, Jiang Y, Cope H, Network U, Palmer C, Shashi V. Psychosocial Profiles of Parents of Children with Undiagnosed Diseases: Managing Well or Just Managing? Journal Of Genetic Counseling 2018, 27: 935-946. PMID: 29297108, PMCID: PMC6028305, DOI: 10.1007/s10897-017-0193-5.Peer-Reviewed Original ResearchMeSH KeywordsAdaptation, PsychologicalAdultAnxietyChildChild WelfareDepressionFemaleHumansMaleMiddle AgedParentsRare DiseasesSelf EfficacySurveys and QuestionnairesUncertaintyConceptsPsychosocial profileHealth care empowermentPsychological needsParents’ psychological needsHigh emotional costParents of childrenAnxiety symptomsEmotional costsUndiagnosed childrenOlder childrenGender differencesParentsUndiagnosed diseaseClinical sitesAnxietyChildrenUndiagnosed Diseases NetworkDegree toleranceHealth care engagementDepressionChronic illnessCare engagementClinical evaluationMedical findingsEmpowerment