Explanatory models of ADHD vary by race/ethnicity in the United States. Black parents tend to be less sure of potential causes of and treatments for ADHD than white parents, and they are less likely to connect ADHD to their child’s school experiences.12 Briefly gathering the family’s explanatory model of ADHD provides good indications of the family’s psychoeducational needs and their willingness to consider various treatment options.
ADHD in family members. Because of its frequent genetic etiology, ADHD in a child is likely foreshadowed by ADHD in other family members. The chances of successful treatment will be adversely affected if the parent responsible for implementing the treatment has untreated ADHD. However, targeted ADHD education in the context of respectful family-oriented communications may open the door to parental treatment or reveal the need for ADHD assessment of the patient’s siblings.
Target education to learning needs. Education is a bidirectional and ongoing process: the clinician provides evidence-based information about ADHD and its impact on academics and peer and social development. Family members provide information about their personal experience with ADHD, their needs, and their preferences. By listening to their “story,” the clinician learns where each family member is on his respective ADHD journey; for example, the child may have been given a diagnosis of ADHD years ago and has tried numerous medication and behavioral therapy trials, or he may be faced with a new diagnosis.
Bidirectional and ongoing education paves the road for future collaborative decision making and enhances rapport and treatment adherence. Clinicians need to work diligently to withhold biased judgments. Experienced clinicians know that parents may hold on to feelings of guilt or inadequacy and may project these feelings onto the clinician. Notably, parents of children with ADHD report having higher levels of self-blame as well as depression, social isolation, and marital discord.13,14 They may feel stigmatized because of concerns about ADHD and its negative implications for behavior, including danger to self or others.15-17 More than 40% of respondents in the recent National Stigma Study-Children (NSS-C) believe that children will face rejection in school for receiving mental health treatment and that negative ramifications will continue into adulthood. More than half expected psychiatric medications to cause zombie-like affect.17
Provide resources. It is essential to increase the family’s understanding of evidence-based treatment. This potentially time-consuming process may be aided through referral to national advocacy groups, such as the National Alliance on Mental Illness (NAMI; www.nami.org) and Children and Adults with Attention Deficit/Hyperactivity Disorder (CHADD; www.chadd.org), and by offering a selection of reputable Web sites and bibliotherapy suggestions (see Table for list of educational resources). It may be important to caution families about unselective use of Internet resources or blogs: these resources are often, at best, anecdotal.
Educational implications and laws. ADHD affects a child’s academic and social functioning and thus mandates regular communication with the child’s school. This communication is vitally important not only to monitor a child’s progress but also to identify any areas of potential concern. The clinician works with the child to develop a positive self-image and attitude toward school. The clinician also provides families with education about relevant education laws and encourages advocacy for school-based ADHD interventions, such as 504 Plans or Individualized Educational Plans (IEPs).18
Partnered treatment plan development
Identifying evidence-based treatments. Rather than simply recommending the best treatments, clinicians intent on partnerships work to increase the family’s ability to understand research-based efficacy concepts. The recent NAMI publication Choosing the Right Treatment: What Family Members Need to Know About Evidence-Based Practices is an excellent resource for the partnering process that can be used to educate families. Incorporating evidence-based treatments within the treatment plan and shared understanding of the disorder is key.
Pharmacotherapy offers multiple evidence-based choices. Stimulant medications are first- and second-line treatments for ADHD. Nonstimulant options (such as atomoxetine(Drug information on atomoxetine)) may be first line for patients with comorbid tics, anxiety disorders, or substance abuse. In any case, the initial pharmacological choice should be an FDA-approved agent.19 The Multimodal Treatment Study of Children with ADHD (MTA) suggests that pharmacological treatment of ADHD is more effective than behavioral therapy alone. However, behavioral training for parents and behavioral classroom management have also been shown to be well-established treatments for children with ADHD.20-22
Communicate about alternative treatments and assessments. Questions often arise about the role of alternative therapies for ADHD. Such therapies may include specialized diets (eg, avoiding dyes/sugars, the Feingold diet), vitamins, biofeedback, hypnosis, and herbal therapy to improve concentration and to treat behavioral disruptions.23 Some parents may inquire about an “ADHD test” that includes brain imaging techniques (eg, single photon emission CT, positron emission tomography, electroencephalography, or MRI). These techniques are neither valid nor reliable diagnostic tools for ADHD and have no evidence-based recommendations for clinical use. It is important to convey that an ADHD diagnosis is made clinically.
Assess treatment willingness. Generally, parents express less willingness for medication treatments than for behavioral interventions. Non-white families are generally less willing to accept medication than their white counterparts.17,24,25 In the recent NSS-C, 86% of the respondents believed that physicians overmedicate children for behavioral problems.17 Psychiatrists are trained to emphasize the effectiveness of ADHD medications and may not be inclined to explore a family’s resistance to pharmacotherapy. Yet when recommended care is inconsistent with family values and preferences, this conflict needs to be resolved if the partnering process is to continue and a successful treatment plan implemented.
After they have received all the information about treatment, some families may still choose behavioral interventions over pharmacotherapy. In this setting, treatment goals should be identified and monitored to assess progress. If families opt out of recommended treatments altogether, the clinician should invite open dialogue about the family’s underlying reasons for their choice. Constructing a careful time line of all past treatments and their results will help build a shared knowledge base for future treatment decisions.
Partnered implementation and monitoring
Collaborate on outcome. Once a joint treatment plan is developed, discussion as to how progress will be monitored is vital. It is important to consider what outcomes matter to the family in addition to what the clinician views as most important. A youngster may be acting impulsively and hitting his siblings, which, in turn, causes increased parental stress. Perhaps the family’s desired outcome is eating dinner together without the risk of physical injury, not just obtaining a lower score on a rating scale. Therefore, monitoring specific patient- and family-desired outcomes along with ADHD symptoms captured through standardized rating scales (such as the SNAP-IV and Vanderbilt) may help keep families engaged in the treatment process.26,27
Anticipate adverse effects and adherence barriers. A proactive monitoring stance for adverse effects will increase the family’s confidence in the clinician and help maximize outcomes. If the child is underweight and a picky eater, appetite-enhancement strategies should be implemented along with medication treatment. Sleep hygiene should be regularly monitored and discussed. Problem-solving potential barriers to adherence and timely follow-up should be assessed over time. Key elements of successful collaboration include anticipating and addressing the needs of the child and his family.
Emphasize need for school feedback. As the MTA study has taught us, direct feedback from teachers and school—such as teacher rating forms, copies of report cards, and IEP or testing results—can critically enhance treatment monitoring and outcomes.21 Families vary in their inclination and ease regarding contact with schools, in part as a result of their socioeconomic background or perhaps because of their own memories of school. Clinicians need to proactively raise the topic, encourage solutions for potential communication barriers, and play an active role in the ongoing communication process. The chances of success can be increased, for example, by offering an office fax to which teacher ratings can be sent; this saves the parents the need to pick them up and avoids having a forgetful child fail to bring them back to the office. Support groups, such as those offered by CHADD, can provide a social network and the opportunity to learn from families who have mastered effective school communication skills.
Families and clinicians have many evidence-based therapies at their disposal to treat children with ADHD. Family-partnered ADHD treatment may be the key for successful implementation and optimal outcomes, with ongoing dialogue paving the way. We have outlined potential elements to enhance the family-clinician relationship, and we encourage clinicians to listen to the family’s story and set up the groundwork for effective partnerships.