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Systematic Review

Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life

1
Department of Child and Adolescent Psychiatry, Psychosomatics and Psychotherapy, University Medical Center Hamburg-Eppendorf, 20251 Hamburg, Germany
2
Department of Pediatric Surgery, University Medical Center Hamburg-Eppendorf, 20251 Hamburg, Germany
*
Author to whom correspondence should be addressed.
These authors have contributed equally to this work and share last authorship.
Academic Editors: Mercedes Guilabert Mora, Virtudes Pérez-Jover and Irene Carrillo Murcia
Int. J. Environ. Res. Public Health 2021, 18(9), 4993; https://doi.org/10.3390/ijerph18094993
Received: 11 April 2021 / Revised: 5 May 2021 / Accepted: 6 May 2021 / Published: 8 May 2021
Parents caring for children with rare diseases fear the long-term progression of the child’s disease. The current study aims to systematically investigate the quality of life (QoL) in parents of children with different rare diseases. We performed a systematic literature search including quantitative studies on QoL of parents caring for children and adolescents with rare diseases in five databases (APA PsycArticles, APA PsycInfo, MEDLINE, PSYNDEXplus, and PubMed) published between 2000–2020. Of the 3985 titles identified, 31 studies met the inclusion criteria and were selected for narrative review. Studies were included if they investigated predictors of parental QoL or reported QoL compared to normative samples, parents of healthy children, or children with other chronic diseases. We used the Newcastle–Ottawa Scale to assess methodological quality. The systematic review revealed that parents of children with rare diseases experience reduced QoL compared to parents with healthy children and norm values. Psychosocial factors, beyond disease-specific predictors, were shown to influence parental QoL substantially and may thus present an essential aspect within interventions for this highly burdened group. Health care professionals should consider and address the impairment of parental QoL due to the child’s rare disease. We discuss insights into existing research gaps and improvements for subsequent work. View Full-Text
Keywords: quality of life; parents; rare diseases; systematic review; caregivers quality of life; parents; rare diseases; systematic review; caregivers
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MDPI and ACS Style

Boettcher, J.; Boettcher, M.; Wiegand-Grefe, S.; Zapf, H. Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life. Int. J. Environ. Res. Public Health 2021, 18, 4993. https://doi.org/10.3390/ijerph18094993

AMA Style

Boettcher J, Boettcher M, Wiegand-Grefe S, Zapf H. Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life. International Journal of Environmental Research and Public Health. 2021; 18(9):4993. https://doi.org/10.3390/ijerph18094993

Chicago/Turabian Style

Boettcher, Johannes, Michael Boettcher, Silke Wiegand-Grefe, and Holger Zapf. 2021. "Being the Pillar for Children with Rare Diseases—A Systematic Review on Parental Quality of Life" International Journal of Environmental Research and Public Health 18, no. 9: 4993. https://doi.org/10.3390/ijerph18094993

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