Do parents of children with attention-deficit/hyperactivity disorder (ADHD) receive adequate information about the disorder and its treatments? A qualitative investigation

Abstract

BackgroundAttention-deficit/hyperactivity disorder (ADHD) is the most prevalent pediatric neurodevelopmental condition, commonly treated using pharmacological agents such as stimulant medicines. The use of these agents remains contentious, placing parents in a difficult position when deciding to initiate and/or continue their child’s treatment. Parents refer to a range of information sources to assist with their treatment decision-making. This qualitative study aimed to investigate 1) parents’ ADHD-related knowledge pre- and post-diagnosis, 2) the information sources accessed by parents, 3) whether parents’ information needs were met post-diagnosis, and 4) parents’ views about strategies to meet their information needs.MethodsThree focus groups (n=16 parents), each lasting 1.0–1.5 hours were conducted. Focus groups were audio-recorded and transcribed verbatim. Transcripts were analyzed using the framework method, coded, and categorized into themes.ResultsGenerally, parents had limited ADHD-related knowledge prior to their child’s diagnosis and perceived prescription medicines indicated for ADHD in a negative context. Parents reported improved knowledge after their child’s diagnosis; however, they expressed dissatisfaction with information that they accessed, which was often technical and not tailored to their child’s needs. Verbal information sought from health care professionals was viewed to be reliable but generally medicine-focused and not necessarily comprehensive. Parents identified a need for concise, tailored information about ADHD, the medicines used for its treatment, and changes to their child’s medication needs with age. They also expressed a desire for increased availability of support groups and tools to assist them in sourcing information from health care professionals during consultations, such as question prompt lists.ConclusionThere are gaps in parents’ knowledge about ADHD and its treatment, and an expressed need for tailored and reliable information. Future research needs to focus on providing parents with avenues to access concise, reliable, and relevant information and support in order to empower them to make the best treatment decision for their child.

Access to diagnosis, treatment, and supportive services among pharmacotherapy-treated children/adolescents with ADHD in Europe: data from the Caregiver Perspective on Pediatric ADHD survey

“…In a longitudinal study (N=162), the majority of parents of children who used specialist services reported barriers to accessing services, with the most common barrier being the lack of information about who could help 8. Insufficient information for parents/caregivers of children/adolescents with ADHD was reported in a qualitative focus group study (n=16 parents) 9. In a UK survey (N=176), around half of children with ADHD had not accessed specialist health care services, despite clinical practice guidelines recommending that only specialist services should perform diagnostic assessments and initiate pharmacotherapy for ADHD 10.…”

Development and validation of a question prompt list for parents of children with attention‐deficit/hyperactivity disorder: a Delphi study

“…Thus, it is critical that parents and their children are well informed about ADHD and the importance of appropriately prescribed treatments through the provision of accurate and tailored information. Previous studies have highlighted that parents obtain ADHD‐related information from a number of sources . Paediatricians are the most commonly accessed source of information (89%) followed by books (78%), general practitioners (65%), schools (61%), the Internet (59%) and the media (54%) .…”

“…Paediatricians are the most commonly accessed source of information (89%) followed by books (78%), general practitioners (65%), schools (61%), the Internet (59%) and the media (54%) . Health‐care professionals (HCPs) are an important source of reliable information which can assist parents during treatment decision making . However, parental satisfaction with ADHD‐related information obtained during clinical consultations can be improved .…”

“…The concept of QPLs has also been utilized in other disease states such as diabetes and trialled with parents of children with neurological problems. Therefore, QPLs may prove useful in empowering parents of children with ADHD to source relevant information from HCPs involved in their child's care, especially as they are regarded as a reliable source of information . Importantly, utilizing this tool would address parents’ desire to use written resources as a prompt for communication with their child's HCP and the inability of some parents to ask the right questions during consultations .…”

“…Importantly, utilizing this tool would address parents’ desire to use written resources as a prompt for communication with their child's HCP and the inability of some parents to ask the right questions during consultations . Parents would also be able to use the QPL to source information from clinicians that is relevant to their child's needs at a specific point in time and that can be updated over time …”