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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