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

Autor: Ardalan K; Duke University Medical Center, Durham, North Carolina, and Ann and Robert H. Lurie Children's Hospital of Chicago and Northwestern University Feinberg School of Medicine, Chicago, Illinois., Adeyemi O; The Children's Hospital of Philadelphia, Philadelphia, Pennsylvania., Wahezi DM; Children's Hospital at Montefiore, Bronx, New York., Caliendo AE; Northwestern University Feinberg School of Medicine, Chicago, Illinois., Curran ML; University of Colorado School of Medicine, Aurora., Neely J; University of California San Francisco Medical Center, San Francisco., Kim S; University of California San Francisco Medical Center, San Francisco., Correll CK; University of Minnesota Masonic Children's Hospital, Minneapolis., Brunner EJ; Geisinger Medical Center, Danville, Pennsylvania., Knight AM; Hospital for Sick Children and University of Toronto Faculty of Medicine, Toronto, Ontario, Canada, and University of Pennsylvania Perelman School of Medicine, Philadelphia.
Jazyk: angličtina
Zdroj: Arthritis care & research [Arthritis Care Res (Hoboken)] 2021 Jan; Vol. 73 (1), pp. 18-29. Date of Electronic Publication: 2020 Nov 27.
DOI: 10.1002/acr.24466
Abstrakt: 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.
(© 2020, American College of Rheumatology.)
Databáze: MEDLINE
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