It is important for clinicians to practice shared decision-making regarding treatment options, taking into account patients’ and caregivers’ values and concerns, in the care of individuals with ADHD. However, shared decision-making during the treatment-planning process for children newly diagnosed with ADHD is limited, indicating that there is a need to support clinicians to better share decisions with individuals with ADHD and their caregivers. The aim of this systematic review was to combine findings from individual qualitative studies of medication-taking experiences in individuals with ADHD as a means to guide clinicians in shared decision-making.
Five databases (MEDLINE, Embase, PsycINFO, SCOPUS and CINAHL) were systematically searched for relevant articles* from both clinical and non-clinical peer-reviewed journals. A manual search of bibliographies was also conducted to obtain full-text qualitative studies.† Only articles scoring >50% on the Critical Appraisal Skills Program qualitative research checklist were included in the study, and these articles were combined using a meta-ethnographic approach. Data were extracted from the included articles in the form of either ‘first-order constructs’ (i.e. direct quotations from research participants) or ‘second-order constructs’ (i.e. interpretations of these quotations offered by researchers). ‘Second-order constructs’ were then collated and developed by the authors into ‘third-order constructs’, which were then used to develop an explanatory model of the key themes of the articles.
A total of 31 articles met the inclusion criteria for this study, and comprised studies of caregivers as well as children, adolescents and adults with ADHD. The following ‘third-order constructs’ were established, which described the key themes influencing patients’ and caregivers’ experiences and perceptions of ADHD medication:
- Coming to terms with ADHD: diagnosis of ADHD was difficult to accept for many caregivers, and caregivers’ decisions about pharmacological therapy were defined by their opinions regarding medication. For individuals with ADHD, many were concerned about how ADHD and pharmacological treatment would affect their sense of identity. Many articles highlighted that medication was a final resort for those with ADHD.
- Anticipated concerns about medication: both caregivers and individuals with ADHD were concerned about the short- and long-term impacts of medication, including fears regarding potential side effects, which often influenced whether or not an individual with ADHD would start/continue medication.
- External influences: caregivers’ decisions to start their child on medication were often influenced by family, friends and school staff. School staff also had an influence on children and adolescents, whereas higher education and employment were important influencers for adults with ADHD. Media was a powerful influencer for children and caregivers.
- Experiences of the effects of medication: positive and negative experiences of ADHD medication influenced the decisions of individuals with ADHD and caregivers with regard to continuing medication, with the benefits of medication considered against possible side effects and the potential impact of untreated ADHD.
- The development of self-management: involvement in medication decision-making was reported to increase with maturity in individuals with ADHD. Caregivers and individuals with ADHD were also likely to experiment with the medication regimen to aid decision-making and to help meet the demands placed upon the individual with ADHD.
One limitation of this study is that the authors chose to combine data from studies involving children, adolescents and adults with ADHD, and it is known that experiences of ADHD and medication can vary considerably with age. In addition, the majority of the articles included in this study originated in the US, and this may limit the generalisability of the results to other countries.
This review highlighted that decision-making regarding initiating and persisting with ADHD medication is complex and is influenced by social-, medical- and treatment-related factors. From this study, it is evident that when making decisions about medications, individuals with ADHD and their caregivers balance the positive against the negative consequences of medication, which often leads to self-management of medication. The authors emphasised that shared decision-making between clinicians and individuals with ADHD as they move into adulthood, as well as educational and social functioning, are important features of adherence to ADHD medication.
*Relevant articles must have been written in English and published between 1987 (as this was the first use of ADHD terminology) and October 2015. Search criteria comprised three groups of terms: methodology (search terms: ethnography; focus group; interview; qualitative; and thematic), focus (search terms: adherence; compliance; concordance; drug; and medication), and sample (search terms: ADD; ADHD; and attention deficit hyperactivity disorder)
†Inclusion criteria for full-text articles that were searched for manually included: focuses on individuals with ADHD; explores medication-taking experiences of patients and/or their caregivers; uses a qualitative methodology; and original research paper published in English in a peer-reviewed journal
Rashid MA, Lovick S, Llanwarne NR. Medication-taking experiences in attention deficit hyperactivity disorder: a systematic review. Fam Pract 2018; 35: 142-150.