Young adult (age 18 to 35) engagement on a health or patient community

engagement

(Kelsey Chawla) #1

Should different strategies be used to engage young adults (age 18 to 35) on an online health or patient community (for adults of any age) that provides information and support related to coping with a health condition?


(Sarah Hawk) #2

Hi @KChawla – welcome. Great question. Are you currently in the planning stages of the community, or are you established but having trouble engaging that demographic?

Let me call in some members that have experience in this area.
@BetsyMc works in health communities so will be able to weigh in here.
@dmurphy623 specialises in patient engagement so will be a goldmine of information on this subject.
@Priscilla and @colleenyoung also work in related communities and always have value to add.


(Priscilla McClay) #3

An interesting question, and I have to say I’m not actually sure.

I don’t have a specific strategy for engaging this age group. Our community is relatively new and our top priority group to target when we launched was older than this. (Although we do actually have a fair few young adult members as well).

I think it would depend on whether there is a big target audience out there that you are failing to engage. So, if the health condition affects a high proportion of young people, but your membership doesn’t reflect this then, yes, it would seem to make sense to do something specific to target them - either with your recruitment or engagement strategy.

Sorry I don’t have the expertise to be more specific, but maybe you could contact some online communities aimed specifically at young people to see how they do things?

CLIC Sargent has an online community aimed at 16-24 year-olds with cancer and YouthNet has a community called The Site for under-25s. I don’t think their community managers are on here, but they both have contact details on their sites.


(christopher w) #4

My son was diagnosed with blood cancer in 2012. At the time he was 16. Other than contact with other teenagers during daily chemotherapy sessions 60 miles away in Oxford Children’s Hospital, he found support very lacking, both in person and online. His college was of little help too.

We ended up creating a private Facebook group and invited his friends to join. I ran an ongoing campaign informing them of his treatment, posting photos (not very nice), and arranged visits to our house, or occasional trips out. We were all learning, but there’s no doubting how effective it proved to be and for once we were thankful to see him giggling into his phone all hours of the day and night.

He’s currently in remission and studying at university and physiologically scared as you can imagine - as we all are. But in saying that, I think it would have been a lot worse without Facebook - or a similar facility - with real people of his own age, offering support 24/7.


(Colleen Young) #5

Thanks for tagging me on this conversation @hawk. I actually recommended that @KChawla post on Feverbee after she interviewed me in her research for this project.

A few top level thoughts:

  1. Interview young adults themselves for their ideas
  2. Look beyond health communities for examples of appealing to this age demographic.

Many of the principles of building online community apply regardless of age. When deciding what tools or platform features to offer, roll them out gradually and watch how they use them. Support their behaviour rather than making them fit into the tools.

I gave a workshop about Virtual Hospice to a group of young adults with metastatic cancer (terminal). I guarantee you that I learned more in the workshop than they did! One huge insight - don’t assume that digital natives are savvy in using their social networks. Many of them had been seriously hurt by friends on social networks such as Facebook. When sharing personal health experiences (and very heavy stuff when you’re going through toxic treatment and facing end of life), their friends asked them (some not very politely) to stop sharing because it was upsetting them. They struggled to find peer groups. Then one workshop participant piped up “I really like ‘old school’ forums where I can just talk with other cancer patients.” Turns out this was a revelation to quite a few in the group.

@ccdw thank you for sharing the story of your son. I have seen the connectivity of online communities do amazing things for people of all ages coping with rare and chronic conditions, from helping them manage their health to actually saving lives. It’s why I love my work.


(christopher w) #6

I’m touched by the level of dedication and warmth you manage to convey at Mayo Clinic Connect @colleenyoung. I should imagine, given some of the subject matters there, that it must be exhausting at times. At least bricks and mortar facilities have a break when the doors close - but with online communities, as we know, there’s always that temptation to be there whenever we’ve got a spare moment.


(Priscilla McClay) #7

@ccdw So sorry to hear about everything your son has been through, and that he’s still struggling with the after-effects. From the communities that I’ve worked on, I know that the emotional and psychological effects of cancer can sometimes hit harder after treatment has finished. I hope he’s still getting plenty of support.

The CLIC Sargent community that I mentioned above was set up to try to meet the exact gap in support that you found. It’s only been up and running about a year, though. I went to a workshop to advise them when they were in the development stage, so it’s interesting to hear a first-hand account of the need that they had identified.

It’s good to hear that you were able to do so much to put an online support network in place for your son. I wish him all the best for the future.


(christopher w) #8

Thanks @Priscilla :slight_smile:

As you’ve identified it’s the ongoing emotional issues that linger and glad to see CLIC Sargent helping in this area. Clic was very helpful during my son’s treatment for Hodgkins Lymphoma. Lots of offers to go on trips plus a modest financial grant - hand delivered by the most delightful of CLIC Sargent volunteers. Let’s hope that same level of caring comes across online too.


(Nick Emmett) #9

Hi @KChawla, firstly welcome to the forums here at FeverBee, there’s some great minds, experiences and opinions to tap in to whenever you have the need, so please be sure to draw tap in to that hive!

So, I don’t have any dealings with any kind of health/illness based community in a professional sense but have a member of various ones for a condition I have, Colitis. My first thought around your post though was what sort of engagement are you looking for from these members? And, I ask this a lot in my replies here but, what’s the purpose of your community in general - why would people be coming there, in particular the age group you mention? Do their needs differ dramatically from other, older users?

I’m not sure the strategies need to be especially different (depending on what your current strategies are I guess) but perhaps the content that you target them with needs to be different, the kinds of posts they’re going to respond to might be slightly different. @colleenyoung’s suggestion around actually asking members in the age group what they want is one I’d second - how will you know what they’re looking for other than asking them.

Keep us updated on how you get on and let us know if you have any more thoughts and questions.


(Kelsey Chawla) #10

Hi @HAWK. Thanks for the welcome to feverbee. I am working with an existing online community that supports individuals experiencing cancer. The community has existed for about 5 years and has had low engagement among young adult users, so we are trying to find ways to increase their engagement.


(Kelsey Chawla) #11

@Priscilla thanks for recommending those YA health communities.

@ccdw thanks for sharing the story of how online community personally impacted your son.


(Kelsey Chawla) #12

@colleenyoung and @Nick_Emmett thanks for the additional thoughts to consider.


(Priscilla McClay) #13

I have worked on a cancer support community before and we also didn’t have a very large audience in this age group. This is probably to be expected, at least to a certain extent, because fewer young adults are diagnosed with cancer/are cancer carers, but it would have been interesting to look into this more closely.

Do you know what proportion of people with cancer fall into this age group, and how that compares to the proportions on your community?


(christopher w) #14

Cancer amongst 15-24 year olds is very rare @Priscilla :

Cancer Research, UK


(Priscilla McClay) #15

Thanks, that was what I was trying to say, but I didn’t have any precise stats to hand. :slight_smile: The point I was trying to make was that Kelsey’s community isn’t necessarily failing to meet the needs of this group - there may be fewer of them on her community because there are fewer of them in total.

(Apologies, Kelsey - you may well have already thought have this and looked into these numbers for the country your community is aimed at.)


(Dan Broadbent) #16

Hi guys!

Firstly, brilliant contributions from you all so far; every one has been so lovely and genuine. You guys are awesome!

So I oversee an online community of young people aged 12-24 living with cancer Australia. This may be a direct diagnosis themselves, or alternatively may involve the diagnosis of a parent or sibling, or the death of a parent or sibling from cancer. So whilst my age/target group may be a little different from yours @KChawla, there is a little bit of cross over!

In terms of our population, approximately 23,000 new young people in Australia every year have an experience with cancer in their family, with approximately 1,000 of those being young people who have a diagnosis themselves. Despite the difference in population sizes, we actually find that young people with a diagnosis are hugely overrepresented in the online space. The way it allows them to connect in with other people who have undergone similar experiences/treatments really seems to resonate.

One huge piece of feedback we have consistently received from the young people we have worked with is how hard it can be as an AYA (adolescent/young adult) when so many of the information/resources available are targeted specifically at either children (too basic) or adults (too complex/potentially lacks relevance). It’s such a difficult place to straddle and they tell us how they often feel like they fall through the gaps between the ‘child’ and ‘adult’ worlds. So I would definitely encourage separate and specific strategies for any AYA people you work with. What that looks like for you I’m not sure, but I agree that community consultation is a pretty great start. But failing that, just use heaps of cat memes!! Everyone loves that.


(Mark Schwanke) #17

@KChawla

From the people in that demographic… Were you able to reach out to any engaged members to see why they liked the community, what kept them engaged and what they felt was lacking?

I would also try to identify people who fit the demographic but aren’t engaged any more but were at one time. If you can get them engaged again (post on their threads or comment on their comments), perhaps you can also reach out to them and find out what made them leave the community/engage only for a short period of time. Sending them a PM might be a bit creepy so I wouldn’t be that direct.

Getting feedback and knowing what your community wants/needs is critical. It changes over time too so you can’t be afraid to keep asking.

Certainly no one wants to be asked flat out what strategies should I use on you to get you more engaged so you need to think about how you ask those questions.

Lastly for someone who has a terminal illness 18-35 they are probably a lot more distracted and worried about living life than participating in an online community. They have school or work or young kids they’re focusing on. They’re trying to optimize their time if they feel they are on a fixed timeline.

As someone said above, socially it can be challenging if they’ve shared their struggle with an illness to Facebook/Twitter and have been met with negativity about openly sharing information in those channels. This may then prevent them to consider sharing in a community of strangers even though they might be the most supportive.

Mark