title: Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: a qualitative study of youth and parent perspectives.
abstract: BACKGROUND
  Untreated mental health problems may result in poor outcomes for youth with systemic lupus erythematosus (SLE) and mixed connective tissue disease (MCTD). We investigated perceptions, barriers and facilitators for mental healthcare of these youth.
  
  
  METHODS
  We conducted 32 semi-structured interviews with 16 outpatient youth with SLE/MCTD, ages 11-22 years, and their parents. We used purposive sampling to deliberately obtain the experiences of youth screened during a previous study for depression and anxiety with the Patient Health Questionnaire 9 and the Screen for Childhood Anxiety and Related Disorders, respectively. We recruited 6 youth with previous positive screens and 10 with negative screens. We assessed interim mental health history, and qualitatively examined perceptions, barriers and facilitators for mental healthcare.
  
  
  RESULTS
  Youth with a mental health history increased from 6 (38%) at initial screening to 9 (56%) at interview (mean follow-up = 2.1 years). Youth receiving mental health treatment increased from 33 to 67%. Youth and parents identified rheumatologists as primary physicians and found mental health screening in rheumatology acceptable. Barriers to mental healthcare included: stigma; fear; uncertainty about getting help; parental emotional burden; minimization by doctors; and limited mental healthcare access. Facilitators included: strong clinician relationships; clinician initiative, sincerity and normalization in discussing mental health; and increased patient/family awareness of mental health issues in SLE/MCTD.
  
  
  CONCLUSIONS
  Youth with SLE/MCTD and their parents perceive pediatric rheumatologists as a preferred source for mental health screening, guidance and referral. Interventions addressing barriers and enhancing facilitators may improve mental healthcare for youth with SLE/MCTD.
authors.affiliation: Division of Rheumatology, Children's Hospital of Philadelphia, 3405 Civic Center Blvd, Philadelphia, PA, 19104, USA. knightan@email.chop.edu.|Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. knightan@email.chop.edu.|PolicyLab, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. knightan@email.chop.edu.
authors.forename: Andrea M
authors.initials: AM
authors.lastname: Knight
authors.affiliation: Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. vickerym@email.chop.edu.|PolicyLab, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. vickerym@email.chop.edu.
authors.forename: Michelle E
authors.initials: ME
authors.lastname: Vickery
authors.affiliation: Center for Pediatric Clinical Effectiveness, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. fiks@email.chop.edu.|PolicyLab, Children's Hospital of Philadelphia, 3535 Market St. 15th Flr, Philadelphia, PA, 19104, USA. fiks@email.chop.edu.|Division of General Pediatrics, Children's Hospital of Philadelphia, 3401 Civic Center Blvd, Philadelphia, PA, 19104, USA. fiks@email.chop.edu.
authors.forename: Alexander G
authors.initials: AG
authors.lastname: Fiks
authors.affiliation: Mixed Methods Research Lab, University of Pennsylvania, 8th Flr Blockley Hall, 423 Guardian Drive, Philadelphia, PA, USA. bargf@uphs.upenn.edu.|Department of Family Medicine and Community Health, University of Pennsylvania, 141 Anatomy and Chemistry Bldg, Philadelphia, PA, USA. bargf@uphs.upenn.edu.|Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, 815 Blockley Hall, 423 Guardian Drive, Philadelphia, PA, USA. bargf@uphs.upenn.edu.
authors.forename: Frances K
authors.initials: FK
authors.lastname: Barg
mesh_terms: D000293:Adolescent; D002648:Child; D005260:Female; D006297:Health Services Accessibility; D006801:Humans; D007407:Interviews as Topic; D008180:Lupus Erythematosus, Systemic / Q000523:psychology* / Q000628:therapy; D008297:Male; D008605:Mental Health Services; D008947:Mixed Connective Tissue Disease / Q000523:psychology* / Q000628:therapy; D010290:Parents / Q000523:psychology; D036301:Qualitative Research; D055815:Young Adult