This study aimed to assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families and assess preferences for emotional health screening and interventions. 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 the patient age group (6–12, 13–17, and 18–21 years), and conversations were audio-recorded, transcribed verbatim, and co‐coded via content analysis subanalysis by age group.
Forty‐five parents participated in 6 focus groups. Themes emerged within two domains: emotional challenges and screening and interventions. Themes for emotional challenges comprised the impact of JM on:
- patient emotional health, particularly depression and anxiety;
- parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and
- Family dynamics, including significant sibling distress.
Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, and rheumatology providers’ facilitator role. They preferred intervention modalities of online and in‐person resources, with survey responses most strongly supporting child/parent counseling and peer support groups.
In conclusion, JM is associated with intense patient and family distress, although resiliency may emerge in young adulthood. Despite existing barriers, increasing access to counseling, peer support groups, and online resources with rheumatology facilitation may be effective intervention strategies.
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