Subjective caregiver burden of parents of adults with Duchenne muscular dystrophy
| Autor: | Robert F Pangalila, Werner B. F. Brouwer, Geertrudis A.M. van den Bos, Henk J. Stam, Job van Exel, Marij E. Roebroeck |
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| Přispěvatelé: | Rehabilitation Medicine, Health Economics (HE), APH - Amsterdam Public Health, Public and occupational health |
| Rok vydání: | 2011 |
| Předmět: |
Adult
Male Parents Coping (psychology) medicine.medical_specialty Visual analogue scale Cross-sectional study media_common.quotation_subject Severity of Illness Index Social support Cost of Illness Surveys and Questionnaires Adaptation Psychological Severity of illness medicine Humans Psychiatry Aged Netherlands media_common Rehabilitation Social Support Caregiver burden Middle Aged Muscular Dystrophy Duchenne Cross-Sectional Studies Caregivers Socioeconomic Factors Quality of Life Happiness Anxiety Female medicine.symptom Psychology Stress Psychological Clinical psychology |
| Zdroj: | Disability and Rehabilitation, 34(12), 988-996. Informa Healthcare Disability and rehabilitation, 34(12), 988-996. Informa Healthcare |
| ISSN: | 1464-5165 0963-8288 |
| DOI: | 10.3109/09638288.2011.628738 |
| Popis: | Purpose: To describe subjective caregiver burden of parents of adults with Duchenne muscular dystrophy (DMD) and to identify factors associated with the level of subjective burden. Methods: In a cross-sectional study in 80 parents of 57 adult, severely disabled DMD patients' level of subjective caregiver burden was measured with the Caregiver Strain Index (CSI) and the Self Rated Burden Scale. A visual analogue scale was used to measure happiness. The expanded CSI version, the CarerQoL and open questions were used to analyse caregiving in more depth. In uni and multivariate analyses, associations of objective care characteristics, patient characteristics and caregiver characteristics with burden were explored. Results: Parents indicated substantial burden, but valued giving care as being important and rewarding. Subjective burden was associated with received support, tracheotomy, active coping by the patient and anxiety in patient and parents, together explaining 34%-36% of variance. Living situation was not associated with experienced burden. Conclusions: Caring for an adult son with DMD is burdensome, but rewarding. Subjective caregiver burden of parents may be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping by the patient from childhood. |
| Databáze: | OpenAIRE |
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