PurposeThis study aimed to explore support for mothers and fathers in single-family rooms (SFRs) of a NICU.DesignA qualitative descriptive design was employed.SampleA convenience sample of 15 parents (nine mothers, six fathers) were recruited from a Level III NICU.MethodDuring their infants' hospitalization, each parent recorded their thoughts and feelings regarding support whenever appropriate over a period of 48 hours using Handy Application to Promote Preterm infant happY-life (HAPPY), an android recording application.ResultsParents felt supported when staff facilitated their learning in a collaborative manner, fostered their optimism, and provided situational assistance. Continuity and consistency of care and presence were important characteristics of supportive nursing care. Though SFRs offered privacy for parents to learn and to be with their infants, the design limited parental access to nursing and medical staff, which sometimes prevented parents from receiving adequate support and partaking in decision making concerning their infants' care.
Aim
To identify generic measures used to measure quality of life (QoL) in pediatric multiple sclerosis research, estimate an overall score of children and adolescents with pediatric multiple sclerosis, and compare the scores to scores of typically developing children and adolescents.
Method
A systematic search was conducted on four databases. All studies were included if: the sample was children with pediatric demyelinating disorders; self‐reported QoL/health‐related quality of life (HRQoL) measures or results were reported; and the mean age of the sample was below 21 years. Quality of the included articles was appraised using the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) checklist and the Mixed Methods Appraisal Tool checklist. A meta‐analysis was also conducted.
Results
A total of 12 full‐text articles were included. Content analysis showed that many components of QoL were not included in the measures. Seven studies were included in the meta‐analysis. The meta‐analyzed score was 75.7 (95% confidence interval 71.2–80.3) with a pooled standard deviation of 16.6. Scores of typically developing children and children with pediatric multiple sclerosis were similar.
Interpretation
Most measures assessed HRQoL and not QoL. Development of a condition‐specific measure of QoL for children and adolescents with pediatric multiple sclerosis would make an important contribution to the field.
Health‐related quality of life (HRQoL) measures were used to measure quality of life in pediatric multiple sclerosis.
HRQoL scores in pediatric multiple sclerosis were similar to typically developing children and adolescents.
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