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.
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.
CHECKPOINTS
■ 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.
