In 2005 the American Academy of Pediatrics (AAP) began an initiative to promote an approach to care among its members in which “…the pediatric team works in partnership with a child and a child’s family to assure that all of the medical and non-medical needs of the patient are met.” A critically important focus of this approach is the role of the family and child — as developmentally appropriate — in the development of an overall plan of care.
This shared decision-making approach is especially important for conditions like ADHD where there is not a single treatment that is the most appropriate and preferred option for all patients. However, little research has addressed the extent to which medical care for ADHD conforms to a ‘shared decision making approach, and those studies that have examined this issue suggest it is lacking.
For example, compared to reports of families whose child was treated for asthma — which is also a chronic medical condition — parents of children with ADHD reported feeling less like active partners in their child’s care, and were less likely to feel that clinicians listened to their perspective or provided them with sufficient information to make well informed decisions.
A study recently published online in the Journal of Attention Disorders [Davis et al., (2011). Putting families in the center: Family perspective on decision making and ADHD and implications for ADHD care. Journal of Attention Disorders, published online 10/5/2011,DOI:10.1177/1087054711413077] presents new data on families’ experience with ADHD and it’s treatment. Participants were a racially and socioeconomically diverse group of 28 families from the San Diego area who were interviewed about their experience having a child with ADHD as well as their experience with treatment. The researchers were especially interested in how families felt about:
1. the treatment decision making process;
2. their perspectives on the cause and impact of their child’s symptoms; and,
3. their treatment goals and preferences.
- Families’ perspectives on decision making: The majority of families believed that parents or family members should be responsible for treatment decision making while approximately 20% preferred a shared process that included physicians. Very few families felt that physicians should be solely responsible for treatment decisions.
Families’ perspectives on the causes of their child’s ADHD symptoms
Families’ perspectives were divided into 4 broad domains: factors internal to the child, e.g., a ‘chemical imbalance’, genetics; factors external to the child, e.g., parental conflict or separation, significant stressors; mixed internal and external factors, and developmental factors, e.g., ‘boys are just like this but he’ll grow out of it’.
Each type of explanation was provided by multiple families within the sample. Thus, although ADHD is widely considered to be a biologically based condition with strong genetic component, many families attributed their child’s symptoms to stressful life circumstances and/or transient developmental factors.
For many families, a substantial change in understanding of their child’s symptoms emerged over time. In almost all cases, the change was from a developmental/nonpathological perspective to one that emphasized genetic and other biological vulnerabilities. This was more likely to occur when parents felt that physician valued their input and involved them in a shared decision making approach. Parents who felt their input was not valued were less likely to accept the physician’s biologically based explanation and treatment recommendations.
Families’ perspective regarding the impact of their child’s symptoms
Most families felt that their child’s ADHD caused stress and strain on family relationships. Many families reported adverse health and mental health consequences within the family, martial conflict and sibling conflict.
Some families reported that their child’s symptoms had affected their job performance. Helping their child with homework was a significant time burden in some families. A small number of families felt ostracized by neighbors and others because of their child’s behaviors.
Families perspective on the impact on their child
Most families felt ADHD had the greatest negative impact on their child’s school performance. Many also expressed concern about how ADHD was impacting their child’s social relationships and self-esteem.
Families’ treatment goals and preferences
The majority of families were willing to use medication to treat their child’s symptoms. However, the process of accepting medication was often a gradual one and that emerged after other options were not successful.
Many families expressed strong interest in alternative treatments to address core ADHD symptoms including dietary modifications, bio/neurofeedback, and exercise-based approaches. Many families expressed frustration at what they perceived to be the limited information they received about ADHD treatment options.
Families’ treatment goals
Most families were interested in treatments that addressed issues beyond the management of core ADHD symptoms. A commonly expressed desire was for nonpharmacological interventions that would enhance their child’s overall quality of life. Towards that end, some parents sought out social skills training to help their child with peer relations, others sought counseling to address self-esteem issues, and others looked for additional academic supports. In addition to seeking these supports for their child, many parents emphasized a desire for supportive counseling for themselves. Here is a particularly poignant quote from one of the parents:
“I need therapy. I do; it’s just terrible…you start to build resentment, you get angry, and then he gets me angry, so angry all the time that I say things I shouldn’t say of course.”
Another parent expressed, “I think counseling for children does help, but there should be more counseling available for the parents…because it’s very tough and you always, always feel bad.”
Summary and implications
Results from this study highlight provide important information for understanding what is important to many families seeking treatment for a child with ADHD. Families desire an active role in making decisions about their child’s treatment and are intent on addressing broad quality of life issues in addition to managing core ADHD symptoms. The understandings that families bring to clinicians concerning the basis for their child’s symptoms can vary widely and will influence the types of treatment approaches that will most resonate with them.
Especially important are findings pertaining to the impact of ADHD on parents’ own feelings of stress and well being, the conflicts it can cause within families, and the spillover effects this can have on parents’ work life. Unfortunately, these important issues may not be addressed or even considered in many instances even though it is clear that “…integrating approaches that target the child’s identified needs and address parental stressors, including marital interventions…into treatment programs for families of children with ADHD” is important to pursue.
Another interesting finding from this study is that parents’ understanding of their child’s ADHD, and the types of treatment approaches they are open to, can change over time. Many parents also have strong interest in learning about alternative ADHD treatments that can complement traditional interventions, but feel that the information required to make well-informed decisions about the best overall approach for their child is difficult to obtain.
Making it easier for families to obtain such information, assessing families preferences with regard to their role in decision making about their child’s treatment, and developing evidence-based interventions that address a broad range of impairments beyond core ADHD symptoms all emerge from this study as important avenues to pursue. Also valuable would be continuing the work begun here with a larger and broader representation of families so that the issues identified pertaining to families’ perspectives on ADHD and it’s treatment can be further delineated and better understood. Ultimately, such information can help clinicians better provide family-centered care for ADHD that addresses the wide range of concerns that families seek assistance for.
– Dr. David Rabiner is a child clinical psychologist and Director of Undergraduate Studies in the Department of Psychology and Neuroscience at Duke University. He publishes Attention Research Update, an online newsletter that helps parents, professionals, and educators keep up with the latest research on ADHD, and teaches the online course How to Navigate Conventional and Complementary ADHD Treatments for Healthy Brain Development.
–> For related articles by Dr. David Rabiner on attention deficits, click Here.