Parent Perspectives on Addressing Emotional Health for Children and Young Adults with Juvenile Myositis.

Objective To assess parent perspectives regarding: 1) emotional health impact of juvenile myositis (JM) on patients and families; 2) preferences for emotional health screening and interventions. Methods Parents of children and young adults with JM were purposively sampled for participation in focus groups at the Cure JM Foundation National Family Conference in 2018. Groups were stratified by patient age group of 6-12, 13-17, and 18-21 years, audio-recorded, transcribed verbatim and co-coded via content analysis, with subanalysis by age group. A brief survey assessed preferences for specific emotional health interventions. Results Forty-five parents participated in 6 focus groups. Themes emerged within two domains: 1) emotional challenges, and 2) screening and interventions. Themes for emotional challenges comprised the impact of JM on: i) patient emotional health, particularly depression and anxiety; ii) parent emotional health characterized by sadness, grief, anger, guilt and anxiety; iii) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, however the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated: i) potential issues with patient transparency; ii) several barriers to resources; iii) facilitator role of rheumatology providers; iv) preferred intervention modalities of online and in-person resources, with survey responses most strongly supporting child/parent counseling and peer support groups. Conclusion JM is associated with intense patient and family distress, though resiliency may emerge by young adulthood. Despite existing barriers, increasing access to counseling, peer support groups and online resources with rheumatology facilitation may be effective intervention strategies.