Quality of life of parents with children with congenital abnormalities: a systematic review with meta-analysis of assessment methods and levels of quality of life.

PURPOSE: To quantify and understand how to assess the quality of life and health-related QoL of parents with children with congenital abnormalities. METHODS: We conducted a systematic review with meta-analysis. The search was carried out in 5 bibliographic databases and in ClinicalTrials.gov. No restriction on language or date of publication was applied. This was complemented by references of the studies found and studies of evidence synthesis, manual search of abstracts of relevant congresses/scientific meetings and contact with experts. We included primary studies (observational, quasi-experimental and experimental studies) on parents of children with CA reporting the outcome quality of life (primary outcome) of parents, independently of the intervention/exposure studied. RESULTS: We included 75 studies (35 observational non-comparatives, 31 observational comparatives, 4 quasi-experimental and 5 experimental studies). We identified 27 different QoL instruments. The two most frequently used individual QoL instruments were WHOQOL-Bref and SF-36. Relatively to family QoL tools identified, we emphasized PedsQL FIM, IOFS and FQOL. Non-syndromic congenital heart defects were the CA most frequently studied. Through the analysis of comparative studies, we verified that parental and familial QoL were impaired in this population. CONCLUSIONS: This review highlights the relevance of assessing QoL in parents with children with CA and explores the diverse QoL assessment tools described in the literature. Additionally, results indicate a knowledge gap that can help to draw new paths to future research. It is essential to assess QoL as a routine in healthcare providing and to implement strategies that improve it.

Impact in the quality of life of parents of children with chronic diseases using psychoeducational interventions - A systematic review with meta-analysis.

OBJECTIVE: This study aimed to identify psychoeducational interventions applied to parents of children with chronic diseases and evaluate their impact on their quality of life (QoL). METHODS: It was conducted in six databases, complemented by references from the included studies and other reviews, manual search, and contact with experts. We included primary studies on parents of children with chronic diseases that studied psychoeducational interventions versus standard care. RESULTS: We screened 6604 titles and abstracts, reviewed the full text of 60 records, and included 37 primary studies. Half of the studies were on Asthma. We found three intervention formats: one-to-one (43%), groups (49%), and combined approach with individual and group settings (8%). More than 60% of the included studies found statistically significant differences between the intervention and the control group (p < 0.05). CONCLUSION: Several interventions have shown efficacy in improving parental QoL. Despite that, there is insufficient evidence of interventions' implementation. PRACTICE IMPLICATIONS: A holistic approach encompassing the patient and the family's biopsychosocial dimensions is fundamental in successfully managing chronic disease in children. It is vital to design and implement interventions accommodating the common issues experienced by children, parents, and families that deal with chronic childhood conditions. Systematic review registration number PROSPERO 2018 CRD42018092135.