Healthcare Independence

Blog post by Colin Hung.

This week’s HCLDR chat falls right between the Canadian and US Independence celebrations. July 1st is Canada Day, the day Canadians celebrate the creation of the Dominion of Canada – an important milestone on the road to independence. July 4th is Independence Day in the US, the day Americans celebrate the Declaration of Independence, the first step to breaking away from British rule.

Given the theme of independence I thought it would be interesting to discuss the concept of healthcare independence on this week’s HCLDR chat…specifically for children, teenagers and young adults.

In 2015, the C.S Mott Children’s Hospital polled parents of teens aged 13-18 to describe their involvement in their teen’s healthcare visits. The results were both encouraging and disheartening.

I was genuinely surprised that 16% of parents have teens that discuss physical health problems alone with their doctor. That number was higher than I expected. However, 65% of parents responded that they alone fill out health history forms for their teens. I expected more parents to involve their teens in this simple healthcare task. C.S. Mott had this to say on the topic:

Results of this national poll suggest that parents may not fully appreciate their role in promoting teens’ independence in the healthcare setting. From completing health history forms at registration, to describing symptoms of health problems, many parents report that they—not their teen—play a greater role in the healthcare interaction. Parents’ top reason for not having their teen take the lead in talking with the healthcare provider about physical, emotional, or behavioral health problems is that the teen isn’t comfortable in that role. However, when parents step in to manage the healthcare interaction, teens do not have the opportunity to develop confidence and comfort in having discussions with the provider, asking questions about their condition or treatment, and taking responsibility for their own health.

As a father of a teenager, I admit that my wife and I have fallen into the “Only Parent” category. It wasn’t until this past year that I began to think about how to prepare my son for healthcare on his own. It scares me a bit.

There are plenty of courses to help him get his driver’s license. There are even courses designed to help teenagers learn how to cook and clean for themselves. However, there are no training courses that I could find that would help prepare him for getting healthcare. It falls on us as parents to teach him.

But what is the best approach? Should I focus on teaching healthcare basics? Or am I better off teaching/coaching my son on how to create a relationship with his doctor? I’m leaning towards the latter, but I’m a bit worried about low health literacy (my son has shown very little interest on health-related topics and isn’t very curious about healthcare in general).

After doing the background research for this chat, I have picked up a few helpful suggestions such as:

  • Sitting down prior to an appointment and asking them to think about the questions they want to ask the doctor (and writing them down)
  • Suggesting they create their own medication reminders into their electronic calendars and recording when they take their meds
  • Researching non-sensitive healthcare topics together (to help them discern trust-worthy information from bad)

If you are a parent you might find this video series from PACER helpful. It features several teenagers talking about their healthcare. The videos are short and full of useful information. The fourth video was particularly interesting as teens discussed who they see as gateways to healthcare information.

As a HealthIT person, I would feel remiss if I didn’t point out that teaching kids about healthcare technology is quickly becoming a “must have” for healthcare literacy. It’s less about using the apps and portals themselves (for the most part the UIs are easy to use) and more about knowing what apps and electronic information is needed in the first place. Kaiser Permanente is doing something unique in this area. In 2017, Kaiser Permanente Washington began providing “limited ‘teen-proxy’ access for parents of adolescents. This allows parents to see their child’s electronic vaccine records online and send secure email messages to their teen’s health-care providers. With this solution parents have some access during those critical teen years while preserving the child’s privacy.”

Please join me this week as we discuss the challenge of helping teenagers/children become healthcare independent. Be part of the conversation on Tuesday July 3rd at 8:30pm ET (for your local time click here) when we will be discussing:

  • T1 What criteria would you use to determine whether a child is ready for healthcare independence?
  • T2 What can parents do to help our children become healthcare independent? What can the system do?
  • T3 In your opinion, what is the single biggest gap in the healthcare education of teenagers today?
  • T4 What role, if any, does technology play in helping children become healthcare independent?
  • Bonus Your holiday shout-outs!

References

Klass, Perri. “When Should Children Take Part in Medical Decisions” New York Times, 20 September 2016, https://www.nytimes.com/2016/09/19/well/family/when-should-children-take-part-in-medical-decisions.html, accessed 2 July 2018

“Preparing for Adulthood: Taking Charge of My Own Healthcare”, PACER’s National Parent Center on Transition and Employment, https://www.pacer.org/transition/video/series.asp?se=43, accessed 2 July 2018

“Back off: Parents impeding teens’ healthcare independence?”, CS Mott Children’s Hospital, 14 December 2015, https://mottpoll.org/reports-surveys/back-parents-impeding-teens-healthcare-independence, accessed 2 July 2018

Rapaport, Lisa. “Does illness help young adults take charge of their own health?”, Reuters Health, 15 March 2017, https://www.reuters.com/article/us-health-adolescents-care-transition/does-illness-help-young-adults-take-charge-of-their-own-health-idUSKBN16N007, accessed 2 July 2018

Walker, Connie. “Makayla Sault, girl who refused chemo for leukemia, dies”, CBC, 19 January 2015, https://www.cbc.ca/news/indigenous/makayla-sault-girl-who-refused-chemo-for-leukemia-dies-1.2829885, accessed 2 July 2018

“Shared decision making in child and adolescent mental health care”, The Health Foundation, https://www.health.org.uk/programmes/closing-gap-through-changing-relationships/projects/shared-decision-making-child-and, accessed 2 July 2018

“Informed Consent in Decision-Making in Pediatric Practice”, American Academy of Pediatrics Committee on Bioethics, 2 August 2016, http://pediatrics.aappublications.org/content/pediatrics/138/2/e20161484.full.pdf, accessed 2 July 2018

“Preparing for First Adult Appointments”, SickKids, http://www.sickkids.ca/Good2Go/for-health-care-providers/Transition-Tools-and-Supports/preparing-for-first-adult-appointments/Index.html, accessed 2 July 2018

“Preparing your teen (and yourself) for a doctor visit”, Kaiser Permanente, https://wa-health.kaiserpermanente.org/health-transitions-preparing-your-teen-and-yourself-for-a-doctors-visit/, accessed 2 July 2018

“Giving Teens a Voice in Health Care Decisions”, KidsHealth, https://kidshealth.org/en/parents/teen-health-care.html, accessed 2 July 2018

“Teen Health Services and One-on-One Time with a Healthcare Provider”, CDC, https://www.cdc.gov/healthyyouth/healthservices/pdf/oneononetime_factsheet.pdf, accessed 2 July 2018

Hong, Matthew K. et al. “Care Partnerships: Toward Technology to Support Teens’ Participation in Their Health Care.” Proceedings of the SIGCHI conference on human factors in computing systems. CHI Conference 2016 (2016): 5337–5349. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5291175/, accessed 2 July 2018

Pirisi, Angela. “Preparing Your Teen for Solo Doctor’s Visit”, Canadian Family, https://canadianfamily.ca/kids/tween-and-teen/is-your-teen-ready-manage-her-own-health-care/, accessed 2 July 2018

Image Credit

“High School students in various classroom settings” – Government of Prince Edward Island https://flic.kr/p/MTPKqd

One comment

  1. As a father whose four kids are 23, 25, 27 & 29, I can attest to the fact that it’s not just teenagers that need some help with their “healthcare.” Those in their young 20’s need help too. In my experience, they’re largely competent in articulating their ‘issues,’ needs and questions. But not so great with the coverage, administrative, and financial aspects.

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