Tag Archives: parent grand rounds

UnConference for Caregivers of Children with Disabilities – proposal

Here’s how it works:

A large grid is taped to the wall – Rooms or Meeting Areas across the top, timeslots down the side.
The event starts with an orientation and ‘rules of the road’.
Then, whoever wants to post a topic writes it on a piece of paper and tapes it to the wall. When all slots are filled (except for the last timeslot, which is filled later), the conference starts.
Participants choose which sessions to attend and can move freely between sessions. (You must attend your own event, at least to start.) Smaller breakouts can happen spontaneously. There is no pressure to attend or stay. Popular topics will be well attended, unpopular topics will not be. Regardless of how many people are in a session, each person commits to speaking and listening proportional to the attendance – for example, if 5 people are in a session, each person speaks approximately 1/5 of the time.
A scribe is appointed at each session to record the conversation.
The full group convenes afterwards and shares salient points.
The last timeslot of the day is reserved for a final round of topic suggestions, based on a distillation of the day’s conversations.

Who can attend?

Anyone with an interest in talking about caring for and raising a child with disabilities. Parents, caregivers, clinicians, physicians, therapists, educators etc. The unconference model assumes that whoever shows up is supposed to be there.

What topics will be discussed?

No one knows until the event starts! Bring your ideas and ‘propose’ them on the big grid. If the topic is interesting to others, your session will be attended. If not, well, you can join another conversation. This is your chance to bring challenging questions, solicit ideas and share information! It can be as general as ‘Coping Strategies’ and as specific as ‘Is X therapy actually helpful?’

Will there be a fee?

Probably, unless I can get donations to cover everything. I will do my best to keep the fee as low as possible.

How can I help?

Funny you should ask! Please fill this out so I can gauge interest. I’ll post the results in a couple of weeks.

____________________________________

(all fields below are optional)

Groupthink and the value of friction (or, Why contrary opinions are helpful)

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I read a great article recently about brainstorming, in the late January issue of The New Yorker. Groupthink: The brainstorming myth., by Jonah Lehrer, is about how, despite its popularity as a corporate creativity booster, ‘brainstorming’ is not a terribly creative exercise. Do you remember brainstorming in school, or maybe at work? A group is assigned a creative task and told to write down all ideas. Emphasis is on quantity, not quality. No criticism allowed. From the article:

The underlying assumption of brainstorming is that if people are scared of saying the wrong thing, they’ll end up saying nothing at all. The appeal of this idea is obvious: it’s always nice to be saturated in positive feedback. Typically, participants leave a brainstorming session proud of their contribution. The whiteboard has been filled with free associations. Brainstorming seems like an ideal technique, a feel-good way to boost productivity. But there is a problem with brainstorming. It doesn’t work.

The author goes on to discuss examples of studies that put the idea of brainstorming to the test, describing one such study where groups of students were given a creative task, then divided into three kinds of groups. One type of group was the brainstorming group – all ideas should be shared, no criticisms. Another group was given no instruction – just figure it out. The third group was told to say whatever came to mind, and were encourage to debate with each other. Here are the results:

The brainstorming groups slightly outperformed the groups given no instructions, but teams given the debate condition were the most creative by far. On average, they generated nearly twenty per cent more ideas. And, after the teams disbanded, another interesting result became apparent. Researchers asked each subject individually if she had any more ideas about [the subject]. The brainstormers and the people given no guidelines produced an average of three additional ideas; the debaters produced seven.

Nemeth’s studies suggest that the ineffectiveness of brainstorming stems from the very thing that Osborn thought was most important. As Nemeth puts it, “While the instruction ‘Do not criticize’ is often cited as the important instruction in brainstorming, this appears to be a counterproductive strategy. Our findings show that debate and criticism do not inhibit ideas but, rather, stimulate them relative to every other condition.” Osborn thought that imagination is inhibited by the merest hint of criticism, but Nemeth’s work and a number of other studies have demonstrated that it can thrive on conflict.

I find this immensely interesting because of a recent comment conversation on my blog with a reader, Nancy, who has a blog of her own. She commented on my post about Hope as Snake-Oil, offering another perspective on how she perceives the word ‘hope’.

Nancy has an adult daughter, Jessie, with Down Syndrome. We were chatting (in the comments) after I had read her blog:

Me:

I imagine that Jessie herself also guides or frames much of your decision-making. She is an independent young woman with much to say and contribute. And I am guessing the two of you don’t always agree :) So moving forward with anything requires a huge amount of give and take, as in all relationships – perhaps your own personal ‘hopes’ are kept in check by the will and preferences of your daughter.

In my case, the decisions were all mine with no constructive input or feedback from Owen. If I ‘sensed’ a response from him it was all still imagined by my own brain. I think what I’m saying is that some kinds of hope, if unchecked or unchallenged or unexposed to any kind of friction, can do more damage than good.

Nancy:

You are too right about Jessie guiding (sic! grin) us. And that does make it a whole different ballgame. And even when there is speech or some other form of communication we are often such poor listeners (or listen only to our selves, our needs, our unchecked and unquestioned assumptions and expectations) that our garbled translation may be way off the mark. You are so right about that friction and its importance in shaping hope, or in shaping anything. All is in relationship, and some relationships are much more obvious than others.

My point?

If parents of severely disabled children only surround themselves with opinions of those who tend to agree, they may be missing a chance for a great idea or creative solution.
Most children push back on us as parents. Require us to continually revise our assumptions and plans in order to accommodate their emerging selves. Children without that voice will only ever live their lives through the filter of one or two perspectives–the parents’. Unless the parents actively seek debate.
Parent Grand Rounds, anyone? Somehow, I keep coming back to this.

Follow up post: ‘Grand Rounds’ for patients/parents

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Since I posted the original idea for parent ‘grand rounds’, much dialogue has taken place! I’m sure no one will be surprised to learn that there is strong support from us regular folks… so I’d like to share some of the (generalized) responses I’ve received from some professionals with whom I’ve corresponded.

I had a twitter conversation with an old work acquaintance who shared this idea with a physician. The response was an unequivocal No. Unworkable, the doctor (via my friend) said. Risks outweigh the benefits. Limited value. Significant risks. No two cases are alike. Parents aren’t at the same level. My thoughts: Imperialist thinking that started all this power imbalance and disconnect in the first place. Equal parts fear and control. Troubling to note this mindset still exists and depressing to see it on full display. Of course twitter plays a guilty role in this reductionist dialogue, so I leave room for the possibility that there is a more fully-developed argument lurking somewhere behind these tweeted gems.
Several administrators/professionals offered up examples where this idea is ‘already in place’, citing examples of patient-to-patient matching and buddy/support programs. My thoughts:
- these are well-meaning suggestions pointing to programs that are not at all like what I am suggesting, which speaks to the dearth of actual programs like the one I am suggesting,
- responders possibly missed the point I was making (admittedly poorly) that these programs are not enough. They do nothing to equalize the power imbalance between clinicians and patients – in fact, these programs can sometimes make things worse. My partner, Carsten, gave me permission to quote him from an email exchange on this topic:
  
  Claire (see comments here) says that “parents feel powerless in medical institutions.” She’s right: it’s designed to be that way. The privacy stuff – but more importantly also the belittling, disempowering attempts at relegating the exchanges parents/patients have with one another to the realm of emotional support is a balkanization/ghetto-ization of the patient. This kind of mechanism is widely used everywhere – hospitals, medical practices, prisons, psychiatric wards, schools – to protect the knowledge of the specialists, and to ensure order and hegemony in its delivery. Institutions benefit tremendously from having only “one version of the truth” and will do almost anything to protect it. Because what they are protecting is their supremacy, their continuing ability to function – their jobs.
  
  What you’re suggesting is deeply subversive. The first wave of responses is the “friendly wave” – they are pretending that it already exists by pointing to their initiatives where patients/parents are relegated to the realm of emotional support structures.
  
  Subversive?! How intriguing. I see Carsten’s point now, although I made the suggestion quite innocently, thinking it was such a no-brainer it would be widely embraced. I like Carsten’s calling-out of what often amounts to mollifying strategies, which can subdue and distract patients from noticing their lack of real participation.
Some participants in the dialogue engaged with the suggestion, gave their own feedback:
- in fast-moving diseases like some cancers, time is of the essence and these sorts of workshops may not come around at convenient times.
- Logistics, expense, accessibility?
My response: Great issues/questions. Let’s talk more.
A couple of participants in my email conversations responded with real interest and a spirit of exploration and curiosity. Said they would send the idea to others in their organization and see what they think, start a dialogue. My response: Where do I sign up?!

An idea: Grand Rounds for patients/parents

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I had a thought recently, while speaking at a pediatric conference here in Toronto. I looked around at the attendees–chatting, sharing notes, comparing stories and anecdotes, listening to presenters delivering the latest research and case studies. Why, I thought, do parents and patients not do this? Or rather, why do we do this only online? Where are our conferences?

I reflected on what opportunities I had ever been given by an institution to connect with families where I would be invited to openly share and compare details of our circumstances, diagnoses, conditions, home life–with the goal of soliciting opinions, ideas, creative solutions from other patients or parents. The answer? Never. Instead, I was aware of various support groups for emotional sharing, or groups formed by administrators/social workers/family resource staff to deliver how-to information sessions (or, as I experienced once, to deliver propaganda on a particular surgery. I’m looking at you, cochlear implant.)

Truth is, institutions discourage this (sharing amongst families). I attended a symposium last month – it was about how hospitals should respond to contentious cases that go viral through social media. The discussion was a good start but a bit depressing. Social media is so clearly misunderstood by those who don’t participate. And there seemed to be a conflation of the term ‘media’ and ‘social media’, as though there was some kind of agency called “The Press” who was managing all those tweets (?!).

Anyway, the most surprising statement of the afternoon was this, spoken by a well-intentioned but flustered administrator: “We as institutions need to look at what we are doing wrong if families are turning to each other online and sharing their stories. Obviously it means we are not doing our jobs right.” Laughable, yes? I almost fell out of my chair. In this statement, the desire to own and control all aspects of a patient’s medical experience came through loud and clear.

Let me run with this idea a minute. Imagine this:

Parents gather once a month in the Sick Kids Hollywood theater, or in Holland Bloorview’s auditorium. Maybe cap it at 100. Whoever wants to present their case to the group for feedback puts their ‘problem’ up on a whiteboard. Then, the group votes on which ones get airtime. You get 15 minutes (or whatever) to present your problems – kid not sleeping, can’t decide whether or not to get a g-tube, surgery is recommended but you’re not sure, medications aren’t working etc etc. With light moderation, the audience responds – with ideas, things to consider, sharing their own anecdotes, recommended ways to deal with the child, suggestions for how to negotiate with the doctor… Maybe a physician or two is in attendance, as a resource.

(I can hear the whole patient privacy argument rearing its head – I will say just two things: I don’t have it all figured out, AND I think it’s the institutions most worried about patient privacy, not parents who are willingly sharing information.)

What do you think? An idea worth exploring?

Jennifer Johannesen, author and web developer

essays, stories and pictures