Clinicians who treat children with attention-deficit/hyperactivity disorder (ADHD) face a challenging conundrum. Although our understanding of ADHD and its evidence-based treatments has increased significantly in recent years, the number of successful treatment outcomes has not increased. Instead, treatment is characterized by high rates of discontinuation, poor adherence to quality indicators of care, and lack of documented improvements in long-term outcomes.1
One missing ingredient in suboptimal ADHD treatment may be insufficient partnering between families and treatment providers. Here we briefly review relevant health care concepts of partnering. We then describe a process of family-partnered ADHD treatment and identify strategies for strengthening the partnership at each stage of the process.
Patient activation, empowerment, and patient-centered care
Several concepts enhance our understanding of effective partnerships with families: patient activation, patient empowerment, and patient-centered care.2-6 In a clear departure from paternalistic power structures still common in much of medicine, these concepts emphasize equal partnerships between clinicians and patients or families. The Institute of Medicine of the National Academies has emphasized the importance of patient-centered care that is grounded in respect and sensitivity to patient preferences, needs, and values, and that recognizes families as equal partners with mental health or other human service professionals.5,6
To strengthen family-provider partnerships during all stages of treatment, we propose a series of helpful strategies (Figure).
Engagement: setting the stage for partnership
Establish the team. To build effective partnerships, the provider needs to establish who will be part of the team. We recommend expanding the focus from partnering with parents to partnering with families. The child may be raised by caregivers other than the biological parents (in this article we use the term “parents” to include a variety of caregivers).
Family members who are unable to attend sessions (perhaps because of work schedules or personal health issues), may play important roles in decision making.7 Effective partnering requires that absent team members’ influence is openly acknowledged and that they are included in the treatment planning process.
Finally, partnering approaches need to include the child or adolescent in a developmentally sensitive manner, so that he or she can also have meaningful input in treatment planning.8 For younger children, the parent or guardian may be the primary decision maker. Teenagers, on the other hand, must be actively engaged in the decision making. Identity formation and peer acceptance are vitally important to teenagers, so they may refuse to take a pill or participate in a behavior plan that may “change their personality” unless ongoing rapport and collaboration are established.
Cultural and language considerations. Although the workforce in this country is becoming more diverse, non-white patients and families are frequently served by white clinicians. To enhance partnering, clinicians need to understand culturally appropriate care for racial/ethnic groups represented in their geographic area. Apprehension and distrust of white clinicians should not be taken as a personal criticism. Patients and their families from different cultural/ethnic backgrounds may not be fluent in English. Therefore, if the clinician does not speak the patient’s language, the services of a qualified medical interpreter are necessary.
In its public policy initiative on patient care and safety, the Joint Commission (www.jointcommission.org)—which holds accreditation power over hospitals, clinics, and other health organizations—emphasizes the importance of effective provider-patient communication.9 Particular emphasis is placed on ensuring language access services for patients with limited English proficiency. Providing information and assessment materials that the family can understand is another facet of setting the stage for partnering with families from diverse backgrounds.
Partnered assessment: learning about child and family
Listen to the stories. Children with ADHD and their families have personal stories of life with ADHD. The child’s behavior may have elicited withering looks from strangers, unsolicited parenting advice from family members, frustrated phone calls from teachers, and searing parental self-recrimination after angry exchanges with a misbehaving child. Although practice guidelines emphasize the need for both parent and teacher reports of ADHD symptoms, patients have their own stories.8,10
Because of time constraints, clinicians may cut short individual accounts and focus on standardized questionnaires to assess symptom severity. This assessment experience, however, may not give families and children the sense that they have been heard and understood. As such, treatment suggestions subsequently offered by the clinician can more easily be discounted, especially if the recommendations are inconsistent with the family’s expectations and values.
? By including the child or adolescent in decision making as well as his or her parents, the partnering approach improves adherence to treatment and improves treatment outcomes.
? To enhance partnering, clinicians need to be knowledgeable about culturally appropriate care for diverse cultural/ethnic groups and to ensure that communication between clinician and family is not compromised; a qualified medical interpreter may be needed.
? In making a clinical diagnosis, the clinician needs to listen to and take into account not only the patient’s story but that of relevant family members.
? Education is bi-directional and ongoing: the clinician provides evidence-based information about attention-deficit/hyperactivity disorder (ADHD) and its impact on academics and peer and social development, and family members provide information about their personal experience with ADHD, their needs, and their preferences.
Understand explanatory models. Partnering with families requires an attitude of respect and sensitivity to patient preferences, needs, and values. One useful way to elicit this important information is by identifying the family’s “explanatory model” of their child’s problem. This term was coined by Kleinman11 in the mid-1970s as a means of exploring patients’ understanding of their condition, for comparing the perspectives of clinicians and patients, and for cross-cultural comparisons. Six brief, open-ended questions address parental worries and beliefs about the causes, expected time course, severity, preferred treatments, and desirable treatment outcomes.
1. Zima BT, Hurlburt MS, Knapp P, et al. Quality of publicly-funded outpatient specialty mental health care for common childhood psychiatric disorders in California. J Am Acad Child Adolesc Psychiatry. 2005;44:130-144.
2. Hibbard JH, Stockard J, Mahoney ER, Tusler M. Development of the Patient Activation Measure (PAM): conceptualizing and measuring activation in patients and consumers. Health Serv Res. 2004;39(4, pt 1):1005-1026.
3. Green CA, Perrin NA, Polen MR, et al. Development of the Patient Activation Measure for mental health. Adm Policy Ment Health. 2010;37:327-333.
4. Fitzsimons S, Fuller R. Empowerment and its implications for clinical practice in mental health: a review. J Ment Health. 2002;11:481-499.
5. Institute of Medicine of the National Academies. Improving the Quality of Health Care for Mental and Substance-Use Conditions: Quality Chasm Series. November 1, 2005. http://www.iom.edu/Reports/2005/Improving-the-Quality-of-Health-Care-for-Mental-and-Substance-Use-Conditions-Quality-Chasm-Series.aspx. Accessed August 23, 2010.
6. National Academies Press. Crossing the Quality Chasm: A New Health System for the 21st Century. 2001. http://www.nap.edu/catalog.php?record_id=10027. Accessed August 23, 2010.
7. Bussing R, Koro-Ljungberg ME, Gary F, et al. Exploring help-seeking for ADHD symptoms: a mixed-methods approach. Harv Rev Psychiatry. 2005;13:85-101.
8. Williamson P, Koro-Ljungberg ME, Bussing R. Analysis of critical incidents and shifting perspectives: transitions in illness careers among adolescents with ADHD. Qual Health Res. 2009;19:352-365.
9. The Joint Commission. “What Did the Doctor Say?”: Improving Health Literacy to Protect Patient Safety. 2007. http://www.jointcommission.org/NR/rdonlyres/D5248B2E-E7E6-4121-8874-99C7B4888301/0/improving_health_literacy.pdf. Accessed August 23, 2010.
10. Bell L, Kellison I, Garvan CW, Bussing R. Relationships between child-reported activity level and task orientation and parental attention-deficit/hyperactivity disorder symptom ratings. J Dev Behav Pediatr. 2010;31:233-237.
11. Kleinman A. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books, Inc; 1988.
12. Bussing R, Gary FA, Mills TL, Garvan CW. Parental explanatory models of ADHD: gender and cultural variations. Soc Psychiatry Psychiatr Epidemiol. 2003;38:563-575.
13. Johnston C, Mash EJ. Families of children with attention-deficit/hyperactivity disorder: review and recommendations for future research. Clin Child Fam Psychol Rev. 2001;4:183-207.
14. Vierhile A, Robb A, Ryan-Krause P. Attention-deficit/hyperactivity disorder in children and adolescents: closing diagnostic, communication, and treatment gaps. J Pediatr Health Care. 2009;23(1 suppl):S5-S23.
15. Norvilitis JM, Scime M, Lee JS. Courtesy stigma in mothers of children with attention-deficit/hyperactivity disorder: a preliminary investigation. J Atten Disord. 2002;6:61-68.
16. Pescosolido BA, Fettes DL, Martin JK, et al. Perceived dangerousness of children with mental health problems and support for coerced treatment. Psychiatr Serv. 2007;58:619-625.
17. Pescosolido BA, Perry BL, Martin JK, et al. Stigmatizing attitudes and beliefs about treatment and psychiatric medications for children with mental illness. Psychiatr Serv. 2007;58:613-618.
18. Walter HJ, Berkovitz IH. Practice parameter for psychiatric consultation to schools. J Am Acad Child Adolesc Psychiatry. 2005;44:1068-1083.
19. Pliszka S; AACAP Work Group on Quality Issues. Practice parameter for the assessment and treatment of children and adolescents with attention-deficit/hyperactivity disorder. J Am Acad Child Adolesc Psychiatry. 2007;46:894-921.
20. The MTA Cooperative Group. Moderators and mediators of treatment response for children with attention-deficit/hyperactivity disorder: the Multimodal Treatment Study of children with Attention-deficit/hyperactivity disorder. Arch Gen Psychiatry. 1999;56:1088-1096.
21. The MTA Cooperative Group. A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Multimodal Treatment Study of Children with ADHD. Arch Gen Psychiatry. 1999;56:1073-1086.
22. Pelham WE Jr, Fabiano GA. Evidence-based psychosocial treatments for attention-deficit/hyperactivity disorder. J Clin Child Adolesc Psychol. 2008;37:184-214.
23. Weber W, Newmark S. Complementary and alternative medical therapies for attention-deficit/hyperactivity disorder and autism. Pediatr Clin North Am. 2007;54:983-1006; xii.
24. Johnston C, Hommersen P, Seipp C. Acceptability of behavioral and pharmacological treatments for attention-deficit/hyperactivity disorder: relations to child and parent characteristics. Behav Ther. 2008;39:22-32.
25. Dosreis S, Zito JM, Safer DJ, et al. Parental perceptions and satisfaction with stimulant medication for attention-deficit hyperactivity disorder. J Dev Behav Pediatr. 2003;24:155-162.
26. Bussing R, Fernandez M, Harwood M, et al. Parent and teacher SNAP-IV ratings of attention deficit hyperactivity disorder symptoms: psychometric properties and normative ratings from a school district sample. Assessment. 2008;15:317-328.
27. Wolraich ML, Lambert W, Doffing MA, et al. Psychometric properties of the Vanderbilt ADHD diagnostic parent rating scale in a referred population. J Pediatr Psychol. 2003;28:559-567.