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

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.

Quality of life and mental health of children with rare congenital surgical diseases and their parents during the COVID-19 pandemic

“…These gender differences in the index group were also found for QoL, with mothers having significantly lower QoL than fathers. These gender-specific differences in parental QoL and mental health are consistent with the current literature [ 23 , 57 , 58 ] and with the fact that mothers are more likely to be the primary caregiver and are thus more involved in the child’s care, which can be stressful and may lead to impairment in mental health and QoL [ 20 , 59 ].…”

“…Further, we compared our results to norm data collected before COVID-19, showing mothers and fathers in the index group also had significantly lower overall QoL than parents of children with chronic conditions such as diabetes or epilepsy. This reduced parental QoL is in line with a recent systematic review on the QoL of parents caring for children with rare diseases compared to parents of healthy children and norm values [ 20 ]. As with the control group referring to mental health, only mothers and not fathers were significantly impaired compared to norm data.…”

Perceived mental health in parents of children with rare congenital surgical diseases: a double ABCX model considering gender

“…It is estimated that more than 7000 different rare diseases affect about 13.5–25 million people in Europe [ 2 ]. Even though parents of children with rare diseases show a reduced Quality of Life [ 3 ] and increased mental health symptoms [ 4 – 6 ], in general, those parents have received little attention from the research and medical community [ 7 ].…”

Rare pediatric diseases and pathways to psychosocial care: a qualitative interview study with professional experts working with affected families in Germany

“…The diagnosis of a rare disease does not only affect the child but also parents and siblings. Therefore, rare diseases in children are often accompanied by a reduction in parental caregivers’ quality of life [ 5 , 6 ]. After diagnosis, parents may experience this first period as a very stressful time and need to learn to cope with their child's rare disease [ 7 ].…”