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Abstract
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.
Implications for Rehabilitation
Parents of adult patients with Duchenne Muscular Dystrophy experience substantial subjective caregiver burden, but they also value caregiving as important and rewarding.
Level of subjective caregiver burden in parents is associated with support, tracheotomy, active coping by the patient and anxiety both in patients and parents.
Subjective caregiver burden might be alleviated by adequate support and respite care, by avoiding tracheotomy and by intervention programs targeting anxiety and promoting active coping.
Acknowledgements
The authors would like to acknowledge the following persons for their contributions: B. Bartels PT, ErasmusMC Rotterdam/Rijndam rehabilitation center Rotterdam for performing the measurements. J. Rischen MD, ErasmusMC Rotterdam, M.J. Kampelmacher MD PhD, University Medical Center Utrecht, P.J. Wijkstra MD PhD, University Medical Center Groningen, N.A.M. Cobben, MD PhD, University Medical Center Maastricht for their assistance in recruiting the participants for this study.
RP conceived of the study, participated in its design and coordination and drafted the manuscript. GB participated in the design and helped with the interpretation of the data and with the drafting of the manuscript. HS participated in the design of the study and helped to draft the manuscript. JE participated in the design of the study, supplied several measuring instruments, helped with the statistical analysis and interpretation and helped to draft the manuscript. WB participated in the design of the study, supplied several measuring instruments, helped with the interpretation of data and helped to draft the manuscript. MR participated in the design and coordination of the study, helped with statistical analysis and interpretation of data and participated in drafting the manuscript.
Declaration of Interest: This study was funded by grants from the Dutch foundations Johanna KinderFonds, Stichting Rotterdams Kinderrevalidatie Fonds Adriaanstichting and NutsOhra.