Parental burden, coping, and family functioning in primary caregivers of children with Joubert syndrome
| Autor: | Bernard L. Maria, Jill Gitten, Eileen B. Fennell, Jennifer Luescher, Duane E. Dede |
|---|---|
| Rok vydání: | 1999 |
| Předmět: |
Male
medicine.medical_specialty Coping (psychology) Adolescent Family functioning Developmental Disabilities Coping methods Joubert syndrome 03 medical and health sciences 0302 clinical medicine 0504 sociology Cost of Illness Cerebellum Activities of Daily Living Adaptation Psychological medicine Humans Spinocerebellar Ataxias Psychiatry Child 05 social sciences Beck Depression Inventory 050401 social sciences methods Infant Mean age Caregiver burden Syndrome medicine.disease Child development Caregivers Child Preschool Pediatrics Perinatology and Child Health Female Neurology (clinical) Family Relations Psychology 030217 neurology & neurosurgery Clinical psychology |
| Zdroj: | Journal of child neurology. 14(10) |
| ISSN: | 0883-0738 |
| Popis: | Children with Joubert syndrome have physical and intellectual disabilities. The purpose of this study was to assess the impact of Joubert syndrome on parental burden, coping, and family functioning. Forty-nine primary caregivers were surveyed. Forty-three primary caregivers were mothers and six were fathers; their mean age was 34 years. The following measures were used: Beck Depression Inventory, Child Development Inventory, Caregiver Strain Index, Family Assessment Device, and Ways of Coping Checklist-Revised. The data show that caregiver burden is not related to the severity of the child's illness, but that caregivers report significant burden. Higher burden was associated with the use of palliative coping methods, and family functioning was problematic. The results of this study suggest that for parents of children with Joubert syndrome, degree of parental burden depends more on the parents' coping skills and the level of family functioning rather than on the degree of the child's impairment. These findings highlight the importance of assessing caregiver burden, as well as decreased family functioning or coping abilities, since these problems often can be managed with psychologic intervention. ( J Child Neurol 1999;14:642-648). |
| Databáze: | OpenAIRE |
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