Stress and Well‐Being Among Parents of Children with Potocki‐Lupski Syndrome
| Autor: | S. Shahrukh Hashmi, Lorraine Potocki, Michael J. Gambello, Susan K. Peterson, Rebecca D. Carter, Linda Ewing-Cobbs, Patricia Robbins-Furman, Marianna Raia |
|---|---|
| Rok vydání: | 2013 |
| Předmět: |
Parents
Potocki–Lupski syndrome medicine.medical_specialty Genetic counseling Chromosome Disorders medicine.disease Hypotonia Quality of life (healthcare) Adaptation Psychological Chromosome Duplication Failure to thrive Well-being medicine Humans Autism Abnormalities Multiple Smith-Magenis Syndrome medicine.symptom Child Psychology Psychiatry Psychosocial Stress Psychological Genetics (clinical) |
| Zdroj: | Journal of Genetic Counseling. 22:633-642 |
| ISSN: | 1573-3599 1059-7700 |
| Popis: | Potocki-Lupski syndrome (PTLS) or duplication 17p11.2 syndrome is a newly characterized condition causing a variety of health problems with variable severity, including failure to thrive in infancy and childhood, hypotonia, structural heart anomalies, cognitive impairments, speech and learning difficulties, and autism. Due to its recent clinical characterization little is known about the psychosocial impact of this condition on patients and their families. This study evaluated whether parental psychosocial outcomes were associated with children's PTLS disease severity. Parents of 58 children with PTLS completed a cross-sectional survey that assessed parental stress, quality of life, and coping skills. Parental functioning was associated with greater severity of feeding difficulty and with lower severity of a cardiovascular defect. Findings from this study highlight potential support needs of parents of children affected by PTLS and suggest ways in which these needs may be addressed. |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|
Full text from SpringerLink