Bridging Disciplinary Boundaries (January 11 - 14, 2007)

Aims: The effectiveness of pharmacologic treatment for youth suffering from psychiatric disorders has been documented extensively. The clinical trials literature on youth has proliferated, summarizing a wide range of medications and their effectiveness in treating childhood mental disorders. However, the literature shows that youth adherence to psychotropic medication is erratic, compromising the effectiveness of pharmacological interventions in the community. If youth experience is comparable to that of adults, the consequences of non-adherence are sobering, including symptom relapse, continued use of intensive services, multiple hospitalizations, and greater suicide risk. The aim of this NIMH-funded, interdisciplinary collaboration between social work and psychiatry was to explore qualitatively how parents and adolescents negotiate daily treatment with psychiatric medications in order to enhance service providers' awareness of the issues underlying youth adherence.

Methods: A convenience sample of 20 parents was recruited from outpatient community mental health agencies that serve adolescents with psychiatric illness. Data were gathered using the “Subjective Experience of Medication and Illness” interview, which has been used extensively to study adult experiences of psychiatric illness and pharmacological treatment (Jenkins, et al, 2005). One hundred fifty open-ended questions were adapted to capture parents' experiences of pharmacological interventions and adherence issues in adolescents. Symptom severity at time of interview was evaluated using the Young Mania Rating Scale, the Children's Depression Rating Scale, and the Child Behavior Checklist.

Results: The majority of participants parented adolescents diagnosed with a severe mental illness, including bipolar disorder, schizophrenia, and major depressive disorder. Parents reported seeking multiple services for their teens, including psychiatric treatment, social work interventions, psychological services, and alternative schooling programs. A primary concern for parents was difficulty obtaining rapid responses from providers when their adolescents decompensated or developed medication reactions. Parents reported enhancing their understanding of youth mental disorders and medication via sources other than their treatment providers. Parents functioned similarly to case managers, monitoring medication consumption, filling prescriptions, and watching for side effects. Contradicting much of the literature, participants reported high rates of adolescent adherence to medication. Parents observed that nonadherence to medication often occurred when their adolescents judged the medication to be ineffective. Parents noted that when adolescents perceived the medication to be effective, they rarely missed doses and actively resisted dose changes, fearing symptom relapse. Parents reported pervasive concerns about their teens' transition to adulthood and how they could foster teens' independent management of their mental health symptoms. Identified themes suggest that reasoned action theory is useful for understanding attitudes toward psychotropic treatment in families.

Implications: Parents' attempts to supplement their knowledge of symptoms and medications suggests the need for increased psychoeducation efforts on the part of providers. Additionally, professionals must work closely with families to uncover their expectations of medication and their criteria for determining its effectiveness. Providers must examine whether nonadherence indicates that youth perceive the medication to be ineffective. Services that help adolescents make the transition from youth to adulthood must focus on developing autonomy in medication management and independence from the “case management” function served by parents.