Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life
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Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life. / Boettcher, Johannes; Boettcher, Michael; Wiegand-Grefe, Silke; Zapf, Holger.
In: INT J ENV RES PUB HE, Vol. 18, No. 9, 08.05.2021, p. 4993.Research output: SCORING: Contribution to journal › SCORING: Review article › Research
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TY - JOUR
T1 - Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life
AU - Boettcher, Johannes
AU - Boettcher, Michael
AU - Wiegand-Grefe, Silke
AU - Zapf, Holger
PY - 2021/5/8
Y1 - 2021/5/8
N2 - 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.
AB - 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.
UR - https://doi.org/10.3390/ijerph18094993
U2 - 10.3390/ijerph18094993
DO - 10.3390/ijerph18094993
M3 - SCORING: Review article
C2 - 34066738
VL - 18
SP - 4993
JO - INT J ENV RES PUB HE
JF - INT J ENV RES PUB HE
SN - 1660-4601
IS - 9
ER -
