Children and Disease Stigma – What Are We Doing To Teach Tolerance?

recessImage courtesy of Disney’s Recess

By Kimberly Reyes (@CommDuCoeur)

As adults, nearly all of us look back on our middle school days and shudder: some of us were too skinny, too large, too tall, or too short; pimply with bad haircuts and clothes that didn’t quite fit right. It was a time for braces, oversized plastic glasses, and the seemingly distant promise that we would one day “grow into our faces.” Yet, it was also a time for some children to direct their own insecurities towards others with taunting, bullying, and name-calling. And pre-teens with chronic diseases or other conditions were no less prone to torment than the rest of us.

A LACK OF INFORMATION

A recent survey by the National Psoriasis Foundation found that 44% of kids with psoriasis have been bullied by their peers, and 38% attribute the taunting to their skin condition. The press release goes on to point out that “nearly one-third of people develop psoriasis before age 20, yet this youth population is often underserved.” Underserved indeed – even as I write this blog post, I am finding very few references and resources to draw information from, which is disheartening to say the least.

Despite this lack of resources, adolescents still seek out information about managing their health, and they’re looking to the Internet for answers. The Pew Research Center reports that 93% of teens are online – more than any other age group. It is not shocking that 73% of those teens spend the majority of their time on social networking sites; it is, however, surprising that 31% are looking for information about health, fitness, and dieting online – with 17% seeking information on sensitive health topics, including their own chronic health conditions. Here’s the real scary part: last year, researchers at Cincinnati Children’s Hospital discovered 195 forums and 36 groups on asthma management on MySpace, mostly containing serious misinformation.

There is a serious need for accurate disease information that speaks to teens in a unique way.

DEALING WITH STIGMA

On a day-to-day basis, teenagers and pre-teens deal with volatile social structures, finding their identities, gaining independence, and handling the drastic changes to their bodies as a result of puberty. For this sensitive age group, the social side effects of dealing with health issues is often more painful than the physical side effects. Having a chronic condition gives adolescents the added stress of adhering to treatment, suffering from social stigma, and personal insecurity. Visual signs, such as rashes and medical apparatus, make children with chronic conditions a target for bullying. In addition, teens and pre-teens are more likely to develop self-esteem issues around their conditions that may lead to adverse physiological effects on their health. In his book Behavioral Approaches to Chronic Disease in Adolescence, clinical psychologist William T. O’Donohue points out that it is common for pre-teens and teens to develop comorbid psychological problems such as depression, anxiety, and poor diet.

FINDING A SOLUTION

O’Donohue argues that adolescence is a crucial developmental stage that sets the tone for how individuals manage their diseases as adults, which is why it is so important to give them the support they need. It is not just our responsibility as healthcare marketers to provide the much-needed resources for adolescents to learn about and manage their conditions; it is also our responsibility to raise awareness and foster tolerance for these conditions among non-afflicted children.

Last month, I had the pleasure of attending a session at ad:tech New York entitled Marketing to Teens and Millennials: A New Kind of Customer, in which Isobar’s Evan Gerber provided the following tips for effective communication with a pre-teen/teen audience:

  1. Facilitate conversation, but don’t interrupt it.
  2. Be authentic; don’t try to be “cool.”
  3. Create places for teens to go.
  4. Badge your brand – make it something they want to associate with.
  5. Don’t shout or spam; they have little tolerance & know how to ignore.

The truth is, we as digital marketers should be excited about this opportunity. This age group is decidedly more dynamic and more open to innovation than other demographics. They love gaming. They download apps to their mobile devices. They are constantly on social media. So why are we ignoring them?

In a later post, I will provide some case studies of people who are doing it right, like our friends across the pond at shift.ms. The site’s administrator, an ambitious twenty-something named George Pepper, did an amazing job building a community of young people leading active lifestyles despite being diagnosed with multiple sclerosis. Shift.ms is a truly innovative – and unprecedented – way for adolescents to connect with other sufferers and obtain valuable information without letting the disease take over their lives. We’ll take a look at the precious few (even fewer in the US) who fall into this category.

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