Abstract
Objectives:
This study aimed to assess the burden and quality of life (Qol) of primary caregivers of children/adolescents with meningomyelocele, taking into account the relationship to anxiety and depression symptoms.
Methods:
A cross-sectional approach was taken to analyze the health-related Qol and burden using the Short Form-36 Survey (SF-36) and the Caregiver Burden Scale (CBS), respectively. Depressive and anxiety symptoms were investigated using the Beck Inventories. The Heckman two-step method was used to deal with the selection bias problem.
Results:
A total of 43 primary caregivers were enrolled in the study. Most of the caregivers were mothers with preliminary education, living in consensual union. Lower scores in general health and vitality were reported in the SF-36. The mean global CBS score was 2.2. Majority of the volunteers (55.8%) were considered non-depressive. There were both positive and negative correlations between the scores of both Beck Inventories and most dimensions of the CBS and SF-36. The Heckman method showed a higher burden among caregivers who had children with fecal incontinence, were living together with a partner, were unemployed and had lower income (P<0.05).
Conclusion:
The primary caregivers of children and adolescents with myelomeningocele reported burden and a lower Qol. There were more anxiety and depression symptoms in subjects with higher burden and impaired Qol. Caregivers had a higher burden if they were living together with a partner, were unemployed, had low income and had care recipients with fecal incontinence.
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Acknowledgements
We thank all the individuals who performed interviews and provided the information to make this report possible. We also thank the nursing students, Paula Almeida and Vanessa Andrade, for their collaboration in data collection.
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Valença, M., de Menezes, T., Calado, A. et al. Burden and quality of life among caregivers of children and adolescents with meningomyelocele: measuring the relationship to anxiety and depression. Spinal Cord 50, 553–557 (2012). https://doi.org/10.1038/sc.2012.10
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DOI: https://doi.org/10.1038/sc.2012.10
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