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. 2021 May 8;18(9):4993.
doi: 10.3390/ijerph18094993.

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

Johannes Boettcher  1 , Michael Boettcher  2 , Silke Wiegand-Grefe  1 , Holger Zapf  1
Affiliations

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

Johannes Boettcher et al. Int J Environ Res Public Health. .

Abstract

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.

Keywords: caregivers; parents; quality of life; rare diseases; systematic review.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as potential conflicts of interest.

Figures

Figure 1
Figure 1
PRISMA flow diagram for the literature search and selection process. Source: Own elaboration based on the data obtained in the study.
See this image and copyright information in PMC

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