2 posts tagged “condition in context”

Discussing your health condition with kids? 5 handy resources

Posted 2 months ago by

With Father’s Day coming up this weekend, parenting is on our minds. Do you talk about your health with your kids, and how do you go about it? Read on to see where to get pointers as a parent living with cancer, a mental health condition or chronic illness.

5 sites or articles to bookmark

Every situation and child is different, but the following resources may come in handy before your heart-to-heart.

  • Wonders & Worries’ Illness Discussion Tips – “Honesty is your best asset,” explains Wonders & Worries, an organization that provides support to children whose parents are facing chronic or serious illnesses. Their detailed guide recommends providing “accurate information that is appropriate for your child’s developmental level related to the illness and its treatment.” For example, say the name of your disease when talking with your child (who’s likely to overhear it eventually) and keep kids (and their school) informed about your current medical status and what it’ll mean for your routine, such as: “Nana will pick you up from school this week.”
  • Michigan Health’s “What Kids of Different Ages Understand” – This article is specifically geared toward parents with cancer, but it has some tips that can be helpful for people with various health conditions. The “Children’s perspectives” section explains what children typically understand at different ages. Babies and toddlers may not comprehend a serious illness like cancer, but can pick up on worries or sadness and changes in routine. School-age children (5-11 years) may have heard untrue information (like “cancer is contagious”) or experience “magical thinking” (e.g. – “Mom’s cancer is because of something I did.”). Tweens and teens may be tempted to turn to “Dr. Google” and get misinformation if you don’t fill them in.
  • Dana-Farber Cancer Institute’s “Talking with Children About Cancer” – This guide offers more information about sharing a cancer diagnosis with your kids. Some of the main takeaways? Take a bit of time to prepare yourself for the discussion but don’t wait too long or follow a script. It’s healthy to acknowledge your own feelings, like: “This is all new to me, too, and I feel worried and sad right now. But we will get through this together, and I will feel better sometime soon.” Also, don’t expect perfection. “There is no ‘perfect’ way to have this conversation. You may burst into tears before saying a word, or snap at your partner for telling your kids to ‘behave,’ or cringe when your son makes light of the whole conversation. Forgive quickly. This is a tough time for everyone.”
  • AACAP’s “Talking to Kids About Mental Illnesses” – The American Academy of Child and Adolescent Psychiatry says that parents (with or without mental health conditions) can help prevent stigma and stereotypes by discussing these conditions. “When explaining to a child about how a mental illness affects a person, it may be helpful to make a comparison to a physical illness. For example, many people get sick with a cold or the flu, but only a few get really sick with something serious like pneumonia. People who have a cold are usually able to do their normal activities. However, if they get pneumonia, they will have to take medicine and may have to go to the hospital. Similarly, feelings of sadness, anxiety, worry, irritability, or sleep problems are common for most people. However, when these feelings get very strong, last for a long period of time, and begin to interfere with school, work, and relationships, it may be a sign of a mental illness that requires treatment.” PsychCentral and The Mighty also have helpful ideas for informing and supporting kids.
  • PBS Parents’ Kid-Friendly Medical Dictionary – This glossary covers only some health-related lingo (mostly related to illnesses kids might encounter themselves). But it gives a sense of how to explain complex terms to curious kids. “Kids think about their bodies in very visual, literal ways. Therefore, experts recommend parents answer medical questions using age-appropriate, simple, easy-to-visualize terms. Be brief and only tell your child what she needs to know, as too much information may overwhelm her. At the same time, respect your child’s intelligence and try not to dumb ideas down. It is useful to explain both what a condition or illness is and how it’s treated.” You can also look for children’s books that can help explain cancermental health conditions, the human body and more.

On PatientsLikeMe, nearly 17,000 members include “parenting” as an interest on their profile. Join the community today to connect with fellow moms and dads, and log in to explore thousands of forum posts about parenting and topics tagged with “parenting.”

Have you talked about your diagnosis or condition with your kid(s) (or grandkids)? Any pointers or resources to add? Make a comment below or in the forum discussion!

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Share and Compare: Be a PRO! Understand Your Experiences in Context

Posted December 6th, 2010 by

This week on our blog, we’ve been highlighting how patients like you are putting their experiences in context.  With the launch of InstantMe and some of the design updates you read about, you can see we’re listening to your call for more functionality that lets you understand how your condition affects the whole you.

Patient Reported Outcomes (PRO) questionnaires are a great tool to illuminate the physical, mental, and social dimensions of your overall health. In fact, PROs are increasingly used in clinical trials, and in December 2009 the FDA approved the use of PROs to support product claims. Best of all, PROs are free of clinical interpretation, which empowers you, the patient, to have your voice heard in the real world.

PatientsLikeMe is an unparalleled platform for electronic PROs, which have a few advantages over traditional pen-and-paper ones, such as:

  • Patients are more likely to share and share truthfully using electronic interfaces;
  • Researchers have real-time access to the data;
  • Electronic PROs enable alerts for specific concerns (such as adverse side effects), ensuring better safety for all patients (1).

Early on in our partnership, our colleagues at the biopharmaceutical company UCB proposed a longitudinal PRO survey: members of our Epilepsy Community would have access to surveys that reveal the effect of their condition on everyday life over distinct periods. That’s right — you could see your progress over time! Together with UCB,  we decided to take the concept of an electronic PRO one step further: not only would you be able better understand your own experience with epilepsy, but you would also be able to put it in context. When you complete a PRO survey, you’ll see that you can compare your results to the larger Epilepsy Community!

Figure 1

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Figure 2

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Such commitment to patient health reveals two interesting things about UCB: First, patients really do come first; and secondly, UCB is committed to understanding how their products work in the real world, and not just in clinical trials. It is not easy to take a leadership position in an innovative arena such as this, and we are proud to partner with such a company.

screen-shot-2010-12-03-at-95803-amAs of today, members of our Epilepsy Community have completed more than 1,300 PRO surveys. By the end of 2010, many of you will have contributed to the largest patient-led study ever in epilepsy.

Are you in on what our communities already know?  Share…and then compare. If you understand your condition in the broader context, you’ll be a PRO too.

1. Dupont et al. “Use of Tablet Personal Computers for Sensitive Patient-Reported Information.”  Journal of Supportive Oncology. Volume 7, Number 3. May/June 2009.

PatientsLikeMe member AMGraham