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

Abstract

Objective: To assess parent perspectives regarding the emotional health impact of juvenile myositis (JM) on patients and families, and to assess 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 (6-12, 13-17, and 18-21 years), and conversations were audiorecorded, 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 2 domains: emotional challenges, and screening and interventions. Themes for emotional challenges comprised the impact of JM on: 1) patient emotional health, particularly depression and anxiety; 2) parent emotional health characterized by sadness, grief, anger, guilt, and anxiety; and 3) family dynamics, including significant sibling distress. Subanalysis revealed similar themes across age groups, but the theme of resiliency emerged specifically for young adults. Themes for emotional health screening and interventions indicated potential issues with patient transparency, several barriers to resources, the facilitator role of rheumatology providers, and 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, although 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.

Figure 1.

Parent reported emotional health experiences of children and young adults (6–21 years old) with juvenile myositis (JM). Note that size of word/phrase corresponds to listed frequency. Anxiety, depression, anger, isolation, and loneliness predominate, but themes of strength and resilience were discussed specifically by parents of 18–21 year olds with JM.

Figure 2:

Conceptual schema of study themes. Juvenile myositis (JM) affects the entire family’s emotional health, with impacts on patients nested within the effects JM has on parents, siblings, and other family members. Emotional distress is greatest early in the disease course when higher disease activity is evident. As disease duration increases and patients approach clinical remission, resiliency may emerge by young adulthood, though it can wax and wane with disease status. Emotional health screening and interventions should be delivered to the entire family but the ability to benefit from these modalities is influenced by differing degrees of patient transparency about emotional distress, barriers to accessing emotional health resources, and healthcare providers’ roles in supporting emotional health.

Figure 3.

Likert rating (mean, SD) of emotional health interventions desired by parents of children and young adults (6–21 years old) with juvenile myositis. Parents ranked interventions from 1 (very undesirable) to 5 (very desirable). Parents highly desire counseling for affected children/family members, peer support groups, and educational resources. Medication is least desired across all age groups.