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In the recently published double-blind study on using Daily Essential Nutrients for the treatment of children with ADHD, entitled Multinutrients for ADHD Youth and dubbed “The MADDY Study”, parents participated in a follow-up study where they shared their feedback and perspectives. The aim of this study, entitled "Parents' priorities and preferences for treatment of children with ADHD: Qualitative inquiry in the MADDY study" was to explore parents' experiences of living with a child with ADHD and how their experiences influence their perspectives on treatment preferences and priorities.
Semi-structured interviews were conducted with 23 parents of children with ADHD who were enrolled in the previous randomized placebo-controlled trial. Parents described their experiences and identified barriers, preferences, and priorities for ADHD treatments.
The study set out to determine if parents' lived experiences of having a child with ADHD shaped their decision-making regarding ADHD treatment options for their child.
Some excerpts from the study:
“Parents recognized that there is likely no single solution or medication to manage their child's ADHD. Treatment may require diverse approaches, which involve parents finding professionals and treatment options that complement each other.”
Parents explained the importance of having healthcare providers and friends/family who were supportive of holistic approaches and the frustration behind advocating for something other than the typical pharmacological approach for their children.
“Many parents reported pharmaceutical treatments were commonly prescribed for their child's ADHD symptoms. Although helpful for some, many parents expressed concerns over the side effects and felt that they were not necessarily the ‘right fit’ as a treatment. Medications were often described as unhelpful or had a ‘zombifying’ effect on children.”
“Ultimately, parents wanted to have the option to pursue a variety of treatment options to identify which ones or what combination of treatments would best support their child's needs. Some parents described wanting to address underlying biological differences or deficiencies that may be exacerbating their child's ADHD symptoms, which pharmaceutical treatments alone would not be able to address. Although these parents perceived multinutrients to be safer than medications, healthcare providers, and the healthcare system itself did not support them pursuing non-pharmaceutical treatments for their child's ADHD.”
“One parent explained: ‘Accessibility is very poor. I think that it needs to be higher. I think we put people as dependent on the doctor's opinion, and the doctor's biases...And so I feel like people have very little control over their health, which makes them passive participants in their health, which leads them to not being accountable for their health … I feel like it's a disempowering system, with a lack of accessibility to those other kinds of services because of the stigma…you are going to be looked at as going against the conventional way that [doctors] want to treat things.’”
‘Another parent elaborated: “I want [doctors] to know not just a stimulants gonna fix the problem…or the thing that they are prescribing—that's not the only thing that's gonna be able to fix the problem. There are alternative solutions like the multi-nutrients that can help with the issues that we have at home.’”
“Certain systemic issues were identified as major barriers to accessing ADHD treatments. Parents often felt they did not have a choice about finding appropriate treatments for their child given the limited options and cost barriers. Parents identified issues with access to healthcare and insurance as well as limited insurance coverage as barriers to attaining the holistic and flexible ADHD treatment plans they desired for their child. For example, not all options are covered by insurance and parents could not afford to try all possible options to find the best combination of treatments for their child.”
“Parents expressed growing interest in non-pharmaceutical treatments for children with ADHD. This aligns with national and international guidelines recommending a multimodal approach to the management of ADHD (Drechsler et al., 2020). The multimodal approach begins with psychoeducation followed by behavior therapy and parental counseling, with pharmaceutical treatment at the third or fourth stage of treatment. Furthermore, there is growing evidence of the improvement of ADHD symptoms in children and adolescents with the supplementation of polyunsaturated fatty acids and micronutrients (Rosi et al., 2020). For children who do not respond well to medication and/or experience adverse side effects, providing access to non-pharmaceutical treatments would be beneficial.”
“Our findings suggest patient- and family-centered, stepwise approaches to guide practice may be reasonable and essential to provide optimal care to children with ADHD and their families. This is aligned with recommendations from the Canadian ADHD practice guidelines (Canadian ADHD Resource Alliance, 2018). Parents preferred a stepwise approach rather than abiding by the strictly medical approach of relying on psychotropic medications.”
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. https://pubmed.ncbi.nlm.nih.gov/35244227/