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Why Parents Decide to Initiate, Continue, or Stop ADHD Treatment

Multiple stressors and factors influence parents' decisions, including trials on and off medication.

What influences parents' decisions to start, continue, or stop treatment for their children with attention-deficit/hyperactivity disorder (ADHD)? To find out, researchers conducted a qualitative study among 52 parents of children and adolescents (age range, 6–17 years; 60% male) with ADHD (mean years since diagnosis, 4.4) who were recruited from community-based pediatric practices in Cincinnati. Standard methods of qualitative analysis were used (audiotaped sessions, verbatim transcripts, and independent coding of major themes) to document parents' (mostly mothers') responses to questions about decision making and sources of conflict and uncertainty in focus groups.

Parents' responses reflected the following four themes:

• Parent stressors: Parents experience self-doubt and blame, pressure from school, conflict with each other about diagnosis or treatment, and emotional burdens of decision making.
  
• Factors that influence decision to initiate medication: Parental recognition of functional impairments, teacher-identified problems, hearing stories that support treatment, positive relationship with child's doctor, extended family support, parent belief in biomedical treatment model, failure of other treatments, awareness of consequences of no treatment, confidence in 50-year experience with stimulant medications.
  
• Factors that delay initiation of medication: Parental denial of a problem, poor communication with teacher, hearing stories that oppose treatment, lack of physician support or trust, lack of support from relatives, perceived stigma ("labeling"), concern about drug addiction and known side effects.
  
• Factors associated with continued doubt and uncertainty: Lingering concerns lead parents to revisit their decisions frequently. Trials off medication (unintentional or planned) influence management decisions.
  

Comment: Parents' decisions about medication treatment for a child or adolescent with ADHD can be complicated by multiple stressors, a perceived emotional burden, and self-doubt. Physicians' understanding about factors that lead parents to initiate, delay, or refuse medication should lead to better monitoring of children. If we recognize that parents and older children sometimes discontinue medications without consulting healthcare providers, we can ask about behavioral change during such self-initiated trials. Pediatricians can also consider initiating trials off medication for brief periods to determine whether treatment continues to be beneficial. Although no researchers have prospectively examined off-medication trials, the authors cite guidelines for conducting discontinuation trials. I encourage most of my patients to try a short period without medication annually to monitor core ADHD behaviors and other target symptoms with child, parent, and teacher reports.

— Martin T. Stein, MD

Published in Journal Watch Pediatrics and Adolescent Medicine September 9, 2009

Citation(s):

Brinkman WB et al. Parental angst making and revisiting decisions about treatment of attention-deficit/hyperactivity disorder. Pediatrics 2009 Aug; 124:580.

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