Reflections of parents of children with 22q11.2 Deletion Syndrome on the experience of receiving psychiatric genetic counseling: 'Awareness to Act'
| Autor: | Prescilla Carrion, Alicia Semaka, Jehannine Austin, Caitlin Slomp, Marlene M. Moretti, Rolan Batallones, Emily Morris, Angela Inglis |
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| Rok vydání: | 2021 |
| Předmět: |
Parents
medicine.medical_specialty media_common.quotation_subject Genetic counseling Population Stigma (botany) Genetic Counseling Anxiety Grounded theory 03 medical and health sciences Intervention (counseling) medicine DiGeorge Syndrome Humans 0501 psychology and cognitive sciences Deletion syndrome Psychiatry education Child Genetics (clinical) media_common 0303 health sciences education.field_of_study 030305 genetics & heredity 05 social sciences Mental health Feeling Psychotic Disorders Psychology 050104 developmental & child psychology |
| Zdroj: | Journal of genetic counselingREFERENCE. 31(1) |
| ISSN: | 1573-3599 |
| Popis: | Individuals with 22q11.2 deletion syndrome (22qDS) have a 25%-41% risk for a psychotic disorder. Although early intervention for psychiatric conditions leads to the best long-term outcomes, healthcare providers often provide inadequate information about these issues and psychiatric services are underused by this population. We conducted semi-structured interviews with parents of children with 22qDS a month after they received psychiatric genetic counseling (pGC), to evaluate outcomes and perceived value of pGC with respect to parents' needs. Using grounded theory, we generated a theoretical framework of the process of building parental awareness of psychiatric risks associated with 22qDS and protective and management strategies for mental health (MH). Parents described how after their child's diagnosis with 22qDS, a variety of barriers stalled their building awareness of psychiatric risk and protective/management strategies: dealing with the immediate symptoms of 22qDS; child's young age; parental fear and stigma; and missing MH guidance. These barriers led them to carry the burden of worrying over missing emerging psychiatric symptoms and the stress over advocating for their child's MH. Parents indicated pGC was beneficial in that led them to achieve an 'awareness to act,' feeling confident in being alert and equipped to protect and/or manage their child's MH. |
| Databáze: | OpenAIRE |
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