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Table 1 (abstract P67). Parent Perspectives on Patient-Reported Measures of Lived Experience and Burden of Disease

From: Proceedings of the 2018 Childhood Arthritis and Rheumatology Research Alliance (CARRA) Scientific Meeting

Category

Issues

Sensory overload throughout the journey

▪ Fitting event into activity of daily living

▪ Difficulty suppressing anticipatory anxiety

▪ Difficulty managing logistics

▪ Situation can be psychologically distressing

Multiple determinants of anxiety

▪ Severity of the child’s injury/illness

▪ Day-to-day life circumstance

▪ Mood

▪ Experience level

▪ Family and work–life dynamics

General feeling of being overwhelmed

▪ The perception/belief that ”life is not fair”

▪ The reality that life is a battle

▪ Multiple healthcare challenges in same family unit

Sensitivities to cultural barriers can lead to a positive or negative experience

▪ Socioeconomic circumstances

▪ Language barriers

▪ Cultural/ideological values

▪ Healthcare providers may generalize experiences based on spoken language