Attention-deficit/hyperactivity disorder treatment guidelines recommend that physicians educate families about ADHD as an initial stage of the treatment process [3
]. The AAP recognizes the need to provide information prior to discussing treatment options, as well as periodically monitoring and updating family knowledge and understanding. The AAP also states that the primary care provider should be available to answer family questions and should provide necessary information directly or in collaboration with community resources (e.g., mental health providers and/or family support groups). Unfortunately, there is no ‘gold standard’ approach to guide primary care providers in their efforts to meet families’ educational needs. The AAP developed a toolkit of resources for primary care providers. The toolkit includes educational materials to distribute to families. Parent materials cover general (e.g., ‘Understanding ADHD’ brochure) and specific topics (e.g., parenting strategies, homework strategies, educational rights and approaches for working with your child’s school). However, there are no published reports documenting either the extent to which parents are receiving these materials or their effectiveness. Similarly, a psychoeducation program for children with ADHD has been described [6
]. This educational program has been incorporated into care delivered by psychiatrists and their clinical assistants. Outcome assessment of this program was limited to the extent that families used and were satisfied with materials during a pilot study. Families had a median of six educational contacts (mean duration 16.5 min) with a psychiatrist or clinical assistant and most materials were received by the majority of families. Among those who responded to the satisfaction questionnaire (response rate of 51% for parents and 41% for children/adolescents), 63% reported having received the right amount of information. Other educational resources for ADHD have been developed by organizations such as Children and Adults with Attention-Deficit/Hyperactivity Disorder [101
] and the National Institute of Mental Health [102
]. These resources are available for free, but evidence for the use and/or impact of these resources in community settings is lacking.
Given the high prevalence of ADHD (e.g., 8.7% of school-age children [1
]), its persistence throughout childhood and the limited availability of child mental health providers (i.e., psychologists and psychiatrists), most children and adolescents with ADHD are managed in primary care settings [7
]. Research has demonstrated that primary care pediatricians report that they provide families with information on ADHD and a variety of relevant topics, including school modifications, organizational skills, consistency in parenting, structured activities, educational rights, self-esteem issues for the child and parental self-care [10
]. There are few gauges of the quality of these interactions. Toomey et al.
recently reported on parent-perceived quality of interactions with their physician using the results of the National Survey of Children with Special Health Care Needs (2005–2006), which contains a sample representative of the US population [11
]. Among the 11,674 parents of children with ADHD surveyed, parents reported that their child’s physician ‘usually’ or ‘always’ ‘provides needed information’ (79% of parents), ‘spends enough time’ (78% of parents), ‘listens carefully’ (87% of parents) and ‘is culturally sensitive’ (88% of parents). Among 6030 parents of children with ADHD surveyed for the National Survey of Children’s Health in 2003, 69% of parents reported that their child’s physician ‘usually’ or ‘always’ ‘communicates well’ [12
]. Similarly, Hart et al.
surveyed 801 parents of children with psychosocial problems about the quality of interactions [13
]. A total of 61% of parents reported that their child’s doctor always understands what the parent says or asks and 71% of parents reported that their child’s doctor always answers questions in a way that the parent could understand.
Despite physician reports of educational efforts and parent reports that a majority of physicians have effective communication skills, unmet family educational needs probably persist. Leslie et al.
found unmet educational needs among parents across all socio–economic and racial/ethnic groups who received ADHD care from practices participating in an ADHD improvement project in San Diego (CA, USA) [14
]. This is not surprising given the many challenges to satisfying these needs. At the time of diagnosis, many parents are stressed and/or experiencing a variety of emotions [16
]. This may impede parents’ ability to receive, process and retain information. Indeed, parents need time to digest and reflect upon information regarding their child’s difficulties and to consider treatment options [17
]. Parents also struggle to resolve conflicting information from lay and professional, formal and informal sources [18
]. In addition, there is likely a large amount of variation in learner needs [19
]. Research has demonstrated that conceptualizations of ADHD (e.g., beliefs about cause, course and control) may differ among parents [16
] and this can be a source of conflict between mothers and fathers [23
]. Lack of congruence between parent conceptualizations and the biomedical model for ADHD can also lead to conflict with healthcare providers [14
]. There is also a large amount of variation in learner styles and preferences for different formats and media [17
]. Leslie et al.
found that community clinics required different resources in comparison with private offices [25
]. Compared with the private offices, community clinics served patients that were more likely to be from low-income (annual household income <US$60,000: private office = 45% vs community clinic = 92%), publicly-insured (5 vs 89%), minority (18 vs 42%), single-parent (28 vs 50%) households. Educational materials needed to be low reading level, non-internet-based and bilingual. In addition, there was a preference for face-to-face education sessions (instead of reading materials/internet). Meeting the needs of individual learners is especially challenging for primary care providers who perceive a lack of time to deliver the needed education in the office and a lack of community resources to assist in meeting this need [15
]. Facilitators of family education include extending the time allotted for ADHD visits [10
], scheduling visits at the end of the day [10
] and having appropriate materials to augment physician efforts [15