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Stigma associated with ADHD prevalent, may affect receptivity to treatment

Friday, October 26 2007 | Comments
Evidence Grade 0 What's This?
The stigma surrounding attention-deficit/hyperactivity disorder is prevalent and may influence adolescent and caregiver treatment decisions, but clinicians can use this information to select the most appropriate treatment plan, a panel advised.

Several of the panel speakers focused on ADHD-related stigma and presented findings from their research--which was largely qualitative--about experiences with and responses to such stigma.

Susan dosReis, an assistant professor at Johns Hopkins University, described stigma according to the theoretical constructs provided by Link et al. This group said that stigma involves labeling behaviors or individuals as different, stereotyping undesirable behaviors or characteristics, and then separating and discriminating against these individuals.

There are 3 types of stigma, according to Dr. Regina Bussing, a professor at the University of Florida. Self stigma, she said, is perceived by individuals who belong to the stigmatized group and have turned that stigmatizing attitude toward themselves. Courtesy stigma is the reaction of people who are in close contact (such as parents, siblings, and school personnel) with a person who has a stigmatizing condition. Public stigma is the general public's reactions toward a group based on stigma about that group.

The study she led evaluated public stigma perceptions among adolescents who did or did not have ADHD. Based on parent interviews and teacher-ratings on the Swanson, Nolan, and Pelham Rating Scale, 191 of the adolescents were considered to be at high risk for having ADHD, and 67 were at low risk. They completed a 26-item adaptation of the HIV Stigma Scale, the Child and Adolescent Services Assessment, as well as other measures and interviews describing what stigmas they thought people with ADHD would perceive.

While the adolescents reported significant ADHD-associated stigma overall, some groups perceived certain aspects of stigma more strongly than others. For example, black adolescents more strongly perceived that people with ADHD would have disclosure concerns (stigmas associated with disclosing ADHD problems). Adolescents from families with lower incomes were more likely to think that individuals with ADHD would perceive negative public attitudes by other people.

"We found that … higher stigma perceptions lowered rates of self-disclosure [of ADHD problems] among our sample," Dr. Bussing said. "So, thinking that … a person will experience stigma lowered their willingness to come forward and say something that puts them into that 'out' group."

The data also showed that higher perceptions of certain types of stigmas (disclosure concerns and negative public attitudes) meant that adolescents were less receptive to medication but more receptive to counseling. Receptivity to counseling and drugs was also affected by age.

"[T]hat may be helpful as we try and engage patients so that we end up with a treatment plan that somebody can live with and comply with…. [It] would be good to inquire what their thoughts and expectations are," Dr. Bussing suggested.  

DosReis found in a recent study that caregivers report experiences with some sort of stigma as well.

For the study, 48 adults who were living in an inner city and caring for children (n=49, aged 6-18 years) with a recent ADHD diagnosis participated in semi-structured telephone interviews. Of these adults, 75% were the biological mothers of the children they cared for.

The caregivers expressed both personalized stigma (how society views them or their family) and nonpersonalized stigma (what they had learned from society about ADHD and treatment). In terms of personalized stigma, 38 of the caregivers said they felt that people viewed them or their families as deviating from normal societal expectations, that their views were dismissed by clinicians or school personnel, or that they or their child were isolated or separated from society. Forty-four of the caregivers had experienced nonpersonalized stigma, such as mistrust of medical assessments or not wanting their children to become "zombies" while on medication to treat the ADHD.

But even with these stigmas, all of the caregivers still sought medical evaluations, and some were able to identify the benefits of drug treatment for their children.

DosReis summarized, "This information can help us understand better some of the psychoeducational needs of parents when they first come in for an evaluation in terms of maybe dispelling some of the misperceptions around … their child being a zombie or even discussing the various ways in which [diagnostic] evaluations are done and how they differ from a biological test and also being receptive to the fact that because a parent walks in the door doesn't necessarily mean that they are ready for medication, but they need to know what are some of the options."

If clinicians lay out these various options, it would allow them to "tailor a treatment plan that a parent is very comfortable with and that [this] might improve their adherence to the therapy would be certainly of benefit to the child and the family," she concluded.

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