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. 2015 Nov 24:13:52.
doi: 10.1186/s12969-015-0049-1.

Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: a qualitative study of youth and parent perspectives

Andrea M Knight  1   2   3 , Michelle E Vickery  4   5 , Alexander G Fiks  6   7   8 , Frances K Barg  9   10   11
Affiliations

Barriers and facilitators for mental healthcare in pediatric lupus and mixed connective tissue disease: a qualitative study of youth and parent perspectives

Andrea M Knight et al. Pediatr Rheumatol Online J. .

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.

Conclusion: 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.

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Figures

Fig. 1
Fig. 1
Flow diagram of sampling and participation in the study. Shown is the purposive sampling strategy utilized to recruit youth with SLE/MCTD and their parents for participation in the interview study. Youth-parent dyads who had participated in a previous cross-sectional study, during which youth were screened for depression and anxiety, were invited to participate. Sixteen dyads accepted and underwent interviews and assessment of their interim mental health history. Of the 33 dyads declining to participate, 7 were not interested, 4 expressed interest but were not successfully scheduled for interview (all were followed at CHOP rheumatology but 3 were away at college), and 22 did not respond (7 were no longer followed at CHOP; 8 were followed at CHOP but were away at college). One dyad was deemed ineligible due to co-occurring developmental disorder
See this image and copyright information in PMC

References

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    1. Knight A, Weiss P, Morales K, Gerdes M, Gutstein A, Vickery M, et al. Depression and anxiety and their association with healthcare utilization in pediatric lupus and mixed connective tissue disease patients: a cross-sectional study. Pediatr Rheumatol Online J. 2014;12:42. doi: 10.1186/1546-0096-12-42. - DOI - PMC - PubMed