Using freelisting to understand shared decision making in ADHD: Parents’ and pediatricians’ perspectives

Abstract 

Objective

To compare and contrast notions of ADHD among pediatricians and parents of affected children to understand the perspectives they bring to shared decision making (SDM).

Methods

In this freelisting study, 60 parents of children with ADHD and 30 primary care pediatricians listed words reflecting their understanding of (1) Attention Deficit Hyperactivity Disorder (ADHD), (2) getting/offering help for ADHD, (3) talking to doctors/families about ADHD, and (4) “mental health.” Smith's salience score established terms that were salient and cultural consensus analysis identified variation within subgroups of participants.

Results

Parents’ terms reflected ADHD's effects on the child and family, while clinicians often mentioned school. Lists suggested differing needs and goals for clinicians and subgroups of parents in SDM: “time” for clinicians, “learning” and “understanding” for non-college educated parents, and “comfort” and “relief” for college educated parents. Neither parents nor clinicians framed ADHD in the same way as “mental health.”

Conclusion

Parents and clinicians, who conceptualize ADHD differently, should negotiate a shared understanding of ADHD as a basis for SDM. Treatment discussions should be tailored to encompass families’ varied emotional and educational needs.

Practice implications

Fostering SDM in primary care is consonant with notions of ADHD as distinct from mental health.

Abbreviations: ADHD, Attention Deficit Hyperactivity Disorder, SDM, shared decision making, AAP, American Academy of Pediatrics, CHOP, The Children's Hospital of Philadelphia, PeRC, Pediatric Research Consortium, CHADD, Children and Adults with Attention Deficit/Hyperactivity Disorder, OR, odds ratio, CI, confidence interval

Keywords: Shared decision making, Attention Deficit Hyperactivity Disorder, Disparities