Parents' priorities and preferences for treatment of children with ADHD: Qualitative inquiry in the MADDY study

Stacy V Lu; Brenda M Y Leung; Alisha M Bruton; Elizabeth Millington; E Alexander; Kelsey Camden; Irene Hatsu; Jeanette M Johnstone; L Eugene Arnold

doi:10.1111/cch.12995

Parents' priorities and preferences for treatment of children with ADHD: Qualitative inquiry in the MADDY study

Child Care Health Dev. 2022 Sep;48(5):852-861. doi: 10.1111/cch.12995. Epub 2022 Mar 25.

Authors

Stacy V Lu¹, Brenda M Y Leung², Alisha M Bruton³, Elizabeth Millington², E Alexander⁴, Kelsey Camden³, Irene Hatsu⁴, Jeanette M Johnstone³, L Eugene Arnold⁵

Affiliations

¹ Department of Population, Family, and Reproductive Health, Johns Hopkins Bloomberg School of Public Health, Baltimore, Maryland, USA.
² Faculty of Health Sciences, University of Lethbridge, Lethbridge, Alberta, Canada.
³ Department of Psychiatry, Oregon Health & Science University, Portland, Oregon, USA.
⁴ Department of Human Sciences, College of Education and Human Ecology, The Ohio State University, Columbus, Ohio, USA.
⁵ Department of Psychiatry and Behavioral Health, The Ohio State University, Columbus, Ohio, USA.

Abstract

Background: Parents' lived experiences of having a child with ADHD may shape their decision making regarding ADHD treatment options for their child. The aim of this study was to explore parents' experiences of living with a child with ADHD in the family and how their experiences influence their perspectives on treatment preferences and priorities.

Methods: A phenomenological qualitative design was used. Semistructured interviews were conducted with parents of children with ADHD who were enrolled in a multisite randomized controlled trial. Interviews were transcribed verbatim, and transcripts at each site were double coded. Initial codes were derived directly from the text. Qualitative data were analysed with an inductive approach.

Results: Twenty-three parents were interviewed: eight from Alberta, Canada; eight from Portland, Oregon, USA; and seven from Columbus, Ohio, USA. Among the parents, 69% were married, 86% completed college education and 52% reported household income over $80,000. Among the children, the mean age was 9.6 years (SD = 1.8 years), 78% were boys and 48% were never medicated for their ADHD. Two major themes emerged from the analysis. Theme 1 was 'impact of ADHD on families within and outside the home' with the following subthemes: 'reconfiguring the home life', 'trial-and-error of accommodations at school' and 'responding to social pressures to fit in'. Theme 2 was 'enabling appropriate and accessible treatments for families' with the following subthemes: 'finding the "right fit" with professionals and treatments' and 'factors influencing inequitable access to treatments'.

Conclusions: Parents described shared experiences and identified similar barriers, preferences and priorities for ADHD treatments regardless of demographic differences by site. Families desired access to family-centred, multimodal approaches to ADHD treatment. Further research is needed to identify the specific structural changes to healthcare, services and policies that will better support this approach.

Keywords: ADHD; ADHD treatment; lived experience; parents; phenomenological; qualitative; treatment decision making.

Publication types

Randomized Controlled Trial
Research Support, Non-U.S. Gov't
Research Support, N.I.H., Extramural

MeSH terms

Alberta
Attention Deficit Disorder with Hyperactivity* / therapy
Child
Family
Female
Humans
Male
Parents
Qualitative Research

Abstract

Publication types

MeSH terms

Grants and funding