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Caregiver burden and related factors in caregivers of patients with childhood-onset systemic lupus erythematosus

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Abstract

Objective

Having a child with a chronic illness is a source of stress for the whole family, especially the primary caregiver. The aim of this study was to evaluate the associations between caregiver burden and both the caregiver’s and child’s psychological symptoms in a cohort of children with systemic lupus erythematosus (SLE).

Methods

Thirty-four patients (aged 9–18 years) with childhood-onset SLE and their caregivers participated in this study. The control group was composed of healthy children and their caregivers. Questionnaires were used to evaluate caregiver burden and the psychological status of parents and children and adolescents with and without SLE.

Results

No significant difference was found between the study and control groups for caregiver burden, anxiety and depression in parents, and psychological status in children. Caregiver burden was positively correlated with parent’s depression, anxiety, and behavioral and peer problems of the children, and it was negatively correlated with the children’s prosocial behaviors. According to regression analyses, the parents’ depression and children’s peer relationship had a positive effect on caregiver burden scores.

Conclusion

Physicians should be aware of the presence of psychological symptoms in patients with childhood-onset SLE and their caregivers because it can affect caregiver burden and the caregiver’s psychological state.

Key points

•Caregiver burden was positively correlated with parent’s depression and anxiety.

•Caregiver burden was positively correlated with children’s behavioral and peer problems.

•Caregiver burden was negatively correlated with child’s prosocial behaviors.

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Acknowledgements

We wish to thank all the patients who participated in this study and their parents and staff of the participating center.

Author information

Authors and Affiliations

  1. Department of Pediatrics, Medical Faculty, Bezmialem Vakif University, Istanbul, Turkey

    Selcuk Uzuner

  2. Department of Child and Adolescent Psychiatry, University of Health Sciences, Bakirkoy Research and Training Hospital for Psychiatry, Neurology and Neurosurgery, Istanbul, Turkey

    Gizem Durcan

  3. Department of Pediatric Rheumatology, Medical Faculty of Cerrahpasa, Istanbul University, Istanbul, Turkey

    Sezgin Sahin, Kenan Barut, Amra Adrovic & Ozgur Kasapcopur

  4. Department of Psychology, Istanbul Gelisim University, Istanbul, 34310, Turkey

    Kayhan Bahali

  5. Department of Child and Adolescent Psychiatry, Bezmialem Vakif University, Istanbul, Turkey

    Ali Guven Kilicoglu

  6. Department of Child and Adolescent Psychiatry, Medical Faculty of Meram, Necmettin, Erbakan University, Konya, Turkey

    Ayhan Bilgic

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  1. Selcuk Uzuner
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Corresponding author

Correspondence to Kayhan Bahali.

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The study was reviewed and approved by the local ethical committee.

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Uzuner, S., Durcan, G., Sahin, S. et al. Caregiver burden and related factors in caregivers of patients with childhood-onset systemic lupus erythematosus. Clin Rheumatol 40, 5025–5032 (2021). https://doi.org/10.1007/s10067-021-05867-5

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  • DOI: https://doi.org/10.1007/s10067-021-05867-5

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