A blog about a paper about a tweet chat about a paper…

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A couple of years ago I was deep in a policy class at UBC as part of my EdD. My final paper was about policies in LGBTQ healthcare – from global (like the WHO resources) to local (what my department didn’t have and why). Tracing the web of policies, legislation and guidelines around LGBTQ health was fascinating and depressing. Canada is one of the best countries in the world when it comes to anti-discrimination laws and every hospital has a statement about diversity. However, there are still lesbians who avoid screening appointments because of their past experiences with healthcare, trans patients who get treated terribly in the ER and gay men with cancer who can’t find local resources that include them and their loved ones.  Polices and legislation are great, but we also need healthcare professionals who understand what the issues are, know how to work with LGBTQ patients and work towards fixing some of the systematic gaps that some of our patients fall through.

I adapted the work I’d done in the policy class and the sought the insight and lived experience of UK radiographer Sean Ralph to co-author a paper that was a kind of “LGBTQ health issues 101 (and how you can help)” for Radiography. It was packed with references and we hoped it would be used by people wanting an overview of the issue. It was the first paper about LGBTQ issues in any of the three major radiography journals. In the meantime, our Twitter journal club (MedRadJClub) was getting going. The paper that Sean and I had written was suggested for one of the monthly chats. One of the regular chat participants was Sophia Thom, a student diagnostic radiographer from the UK. We’d met in real life at a conference (UKRCO) where I’d been talking about my EdD research – and we’d gone out with Sean to Canal Street in Manchester to drink gin and talk about research, coming out in healthcare and the perils of online dating. Sophia wanted to do some research but wasn’t sure where to start. I said something like “Oh, we’re doing a MedRadJClub chat later this year about our LGBTQ paper, why don’t we use the data from that and submit it to a conference – how about UKRCO next year?”

So we did. In this case we were interested in how much education the participants had received around LGBTQ people and healthcare, and what was going on in their departments. We had 44 people join the chat and a lot of conversation. We weren’t surprised that most people hadn’t had a lot of formal education – although participants shared an amazing list of self-found resources. We co-wrote the conference abstract in the fall with Julia Watson (a MedRadJClub friend) and Kim Meeking (Kim’s research area is social media) and submitted it to UKRCO with crossed fingers. When it was accepted we analysed the chat data and Google Drive’d the poster design together complete with Sophia’s rainbow Twitter symbol! As we’d done the analysis it seemed wasteful to stop there. There’s very little in print about this – and someone, somewhere might need citeable evidence. So we wrote the paper based on the tweet chat, based on the paper based on the policy class.

I think this process illustrates a few points. Firstly, if you want to get started use the resources you have, projects, essays, people and connections – the inspiration and material for writing a paper can come from many different sources. If you’re a new researcher, reach out to people who can help. Most of us are happy to give advice, edit, cheerlead or (sometimes) collaborate with you. Finally, if you’re an established researcher and have the skills, bring a few people along for the ride next time you do a project or write a paper. There’s a lot out there to investigate and we need more people to help!

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Explosive Knowledge: Freddie Mercury and my Literature Review

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I am deep in my literature review. Having finished (for now) my results section I made an attempt to write the discussion. It was a sad effort. My results section is my stories, written very much from the heart and from being immersed in the transcripts from my participant interviews. I got very lost in the discussion section, trying to tie the stories back to the literature review I had done for my proposal, about ten million years ago. I kept writing little notes to myself like “add a section on how cancer care is gendered” and “stick in lots more about coming out”. Then I’d get sidetracked for days reading more about cancer and gender (that stuff is interesting!) and forget what I’d been doing.

My supervisor advised me to continue with the discussion – I had the stories in my head, she said, it’s the ideal time to put them in context, relate them back to your research questions. I do have the stories in my head. It’s reassuring. I read about patients being misidentified as sisters, not partners, and I think “oh, that happened to Lisa and Alex” – as if I know them instead of having invented them as characters in a story. It wasn’t enough though – there were big gaps to fill back at the literature review section.

The part I’m building at the moment is on coming out. I originally had a couple of pages in my proposal, which looked fine to me at the time, discussing the metaphor of the closet and how coming out isn’t a one-time act. That small section has grown to many, many pages. I might know more about coming out at this point than anyone in Edmonton (in theory anyway). Watching Bohemian Rhapsody last weekend, I found myself categorising Freddie Mercury’s identity management strategies in my head. He didn’t exactly hide it, most of the time, but used a combination of non-verbal disclosure such as covering and using clues to signal affiliation with a non-heterosexual identity. He was possibly one of the most queer rock stars in history, but some of his fans didn’t pick up the clues, the social context of a rock band served to mute the effectiveness of the message. Similar to Freddie, most LGB people use a combination of methods to come out, a process which is both continual and contextual. See how much fun I am to go to the movies with?

One thing that has struck me, as I wade through my papers, is how this is still very relevant. I did wonder, starting out, if being LGB was still (sometimes) something to be managed at work, or out in the world. In the last few days my news feed has popped up stories about two women being asked to leave a concert for kissing (in EDMONTON!) and a woman in Ontario being kicked out of her church for being in a same-sex relationship. Coming out, for them, had consequences. Watching TV, Drag Race is full of coming out stories, and Transparent is a study in coming out as trans*. At one-point Maura (the lead character, a transwoman) is told not to tell Grandma Rose because it would kill her. “Hey, that’s called ‘explosive knowledge’” I told my fascinated partner, “the idea that coming out could blow up a relationship** and/or cause physical or emotional violence!”

So, the take home message is mainly that I watch a lot of gay stuff, but also that I am mentally and physically immersed in my literature review. I think it was a good decision to do this before my discussion. I hope I will have both the theory and the emotional resonance of the stories available to me when I get there. I’m certainly seeing a lot of connections and hoping I won’t have to do a lot of backfilling if and when I come across an idea or theme I hadn’t  included. Knowledge, explosive or not, that will help me get to the end of this dissertation journey.

 

*I  know, I can’t believe it has taken this long for me to watch it!

** Orne, 2011

 

 

 

 

 

FASday: Patients and families and healthcare

It’s FASDay – September 9th and my blog is about Fetal Alcohol Spectrum Disorders (FASD) – but also about patient and family engagement. If you’d like to know more check out FASworld. If you want a great and engaging read about FASD – Bonnie Buxton’s book Damaged Angels was a huge help to us and our families (and the support groups she started at St. Mike’s Hospital in Toronto).

At a job interview recently, someone asked me why I focused on patients and family experience more than the technology we use in our job. I wasn’t sure at first, I like stories and storytelling, maybe that’s part of it? I’ve had a few bad healthcare encounters as a patient (and seen a few) – but I am sure we’ve all had some. Family experiences with cancer? Check. Again, pretty common in the caring professions.

I think what put the pieces together was the case conference I attended a couple of weeks ago as a parent. My oldest son (P) has FASD. He’s struggled with this debilitating (and preventable) neurological condition his whole life. What people used to see was a little blonde boy acting out, running away, hitting other children – and parents who couldn’t handle the behaviours, parents who sometimes yelled back, walked away and (eventually) ignored them. We stopped going out for meals, taking him to friend’s houses, doing anything outside the routine that would throw him into a spiral of anger. The eventual diagnosis at aged six was a relief at first. But as he became older, and we learned more, we settled into a kind of waking despair. “Kids like him” don’t go to college, “kids like him” drop out, get addicted to drugs, end up on the street. “Kids like him” – with messed up executive functioning and zero sense – are the most common inmates in Canadian jails. Today at seventeen P’s living in a group home with supervision, we’re hoping he goes back into a special education program this fall because it will keep him busy, safe, for a few hours a day. He didn’t graduate high school, but he held down a job for a few weeks last summer. Better than we’d hoped.

My ex-wife and have been to parenting classes, support groups, retreats – read all the books, combed all the websites. We were told by various social workers, mental health workers, key workers, play therapists, psychiatrists, psychologists and physicians that we should be able to cope, we needed positive strategies, a male role model, a time out zone, a safety plan, yet another class to teach us how to stay calm, a sticker chart, visual aids, a rewards jar. We have seen, and talked to, and been talked at by hundreds of healthcare professionals. We’re lucky – we live in a country that has supports for kids like my son. Whenever there is a crisis the troops rally round – P’s “high risk” care team consists of at least ten people and we’re all trying to keep him safe, alive, until he gets older and his brain develops more.

We went for long stretches when he was younger just coping at home. It was impossible to get him comprehensively assessed and his medications reviewed between crises. All the help was time-limited, temporary. and we’d end up in the ER again and again We learned how to navigate the broken system and how to game it. Supports for kids with FASD are few and far between. In Ontario (a few years ago) there was one special education classroom for kids with FASD in a limited age bracket, in a different school district. We needed respite, most of all, for a break. We ended up paying for this ourselves and it was hard to find the right person who “got” FASD so P ended up with a patchwork of carers all over the city. At one point I found myself in the living room of a “private consultant” who would train parents what to say to get a diagnosis of autism for their kid with FASD – because the support was better, there was funding, educational assistants, sympathy. We seriously thought about it.

So – back to the case conference. It was fairly typical as these things go. I was “the mom” and there were about eight healthcare professionals and mental health workers around the table. As we waited, they started chatting about colleagues, conferences they were planning to go to as I sat and scrolled through my phone. My son had overdosed and was in a local hospital, he was coming out that day but the week before had been rough. He’s also been beaten up and robbed, maced. This had happened a few times but he refused to stay away from the location, the people – still talked shit about them on social media. So I felt there were a few things to focus on. The woman on my left was joking with the table about her upcoming retirement. Just a few weeks to go. The mental health worker was in her early twenties and showing her neighbour pictures of her new dog.

When we got started we did a round table of introductions. It always feels odd to me not to use my professional designation – because that comes with some value – there’s little value in being the “mom” in this situation. My ex-wife and I have been in hundreds of these sessions. We’ve cried, brought binders of tests and assessments, circulated a special “getting to know P” book that was strengths-based (he loved Pokemon, has a wicked sense of humour, he loves to rap) – we’re there as his advocates and to tell his story. But mostly they don’t want to hear it. There’s a rhythm to these meetings. We hear reports from his social worker, care worker, Ministry worker, mental health worker, the people from his residence etc. Unbelievably I hear he’s “doing well”, he’s attended one of the youth sessions, one of the drumming circles, begged off the music class that was arranged for him with studio time but said he’s like to go next time. I interrupt – he’s in the hospital today – he overdosed again, what can we do. They look at me – I’ve cut off the tirade of “I’m retiring soon” who was telling the social worker it was illegal to keep clean gear in a Ministry home (even though it’s a harm reduction – kids can’t keep any drug paraphernalia where they live). He’d suggested it might keep P safer. She vehemently disagrees. They suddenly seem to remember I am there.

One of the women leans across to me and reminds me we’re doing Naxolone training next week – one of the hardest things for moms is to realise we have no control over the risky behaviours – she says sympathetically. I lean back. The talk shifts again to the issue of clean gear – they’re laughing now because they have to hide the tin foil in group homes, because of crack I guess? When the minutes of this meeting come out I’m not mentioned – my words aren’t there. I’m neither surprised nor disappointed.

I’ve got no easy answers – I know the system is flawed and I also know that most of us do our best. The healthcare professionals that I remember the most are the ones that listened to us, believed us and didn’t suggest a sticker chart because we’d already tried that and it didn’t work! They recognised the love and the pain of the situation and were respectful. They saw us as a resource, not a box to be ticked. They didn’t have all the answers, but they were willing to bet we had the most lived experience with our son. They acknowledged the limitations in the system but they still held out hope. They met us in our living room, and not at the hospital – and they asked us what we wanted from them – rather than telling us what they were going to do for us. I can think of a lot of ways that case conference could have gone better – perhaps by giving me space to speak, ask me what I thought for a start? It’s sometimes as simple as that.

 

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Deadlines and headlines*

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There’s a natural hiatus in July and August. Things slow down, people are away. Here in Western Canada it’s been hot and dry and we’ve had forest fires, lots of them. The skies have been gray with smoke, the sun struggling to appear. Before working at a university I assumed the faculty would be whooping it up in far flung locations in the summer, drinks in hand – academia far from their minds. This doesn’t seem to be true. Our students are away but most people are still here, working on courses for the fall and reviewing and revising courses from this past year. Our new students are here next week for their orientation. We get to attend some of this and I’m excited for the drumming ceremony and slightly disappointed to be missing Wednesday’s student-organized party at the local gay bar.  They also have MANDATORY (yes, in capitals) sessions on professional standards, team building and social accountability. How cool is that?

Among all this preparation and pondering, I’ve been looking at my own deadlines. Not a lot to report on the EdD front but a lot going on in the rest of my life. I’m helping to develop a post-graduate course on a subject I know nothing about (magnetic resonance imaging) and getting used to a new life and a new city. I’ve been travelling back and forth to BC and adapting to remote parenting/joint custody. The “I should be writing” guilt has taken a bit of a backseat to the “faculty imposter syndrome” and “extra-mega-ramped-up-maternal-angst”. I’m aware that time is ticking away (and feeling that itch in the back of my brain that means I want to sit down and write something) but I’m busy, it’s still August and my last blog said I was fine with not worrying about end dates**!

A doctoral degree has its own momentum, but there are deadlines to consider when thinking about graduation. The first one (for UBC) is the appointing of the external examiner. This person has to be familiar with the field and joins your supervisory team, and one or more university appointed examiners to dissect your dissertation.  After the external examiner has been appointed, the clock – essentially – starts ticking. A couple of months later is another deadline, the submission of the finished and formatted dissertation to the full committee. A month or two later, comes the oral defense and then the revision and resubmission process. Once the revised dissertation is approved you can apply to graduate (another series of dates and deadlines). For UBC, there are four dates for graduation in the year.

Although this sounds very structured, it’s really only the graduation dates that are hard deadlines. When I asked my supervisor about this and suggested I aim for a fall 2019 grad she told me not to focus too much on the deadlines, but envisage the huge party I’d throw when I’m done. Great advice – but what do I put in the rest of my Gantt*** chart? I’m feeling the back-to-schoolness of the new academic term and wanting to set some goals. We have an EdD educational event in October where I’m presenting. At this point I’ll just be reading everyone one of my stories (which I actually love as a concept!)

So my deadline is still September to start the discussion section, and if you asked me the headline it would be – “Overwhelmed Researcher Reluctantly Learns to Live with Uncertainty”. Nothing new there!

 

 

* Not to be confused with Headlines and Deadlines, the compilation album by the great eurosynth masters A-Ha (1991, Warner Bros Records)

**Yes, yes, OK, obviously slightly untrue

***Fun fact: named after its inventor, Henry Gantt

 

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Plans, progress and dinosaurs

This time last year I was in the midst of my comprehensive exams, trying to pull together my research ideas into a coherent whole, enough to convince the examiners at UBC that I had enough knowledge to move into the research phase of my doctorate.

This time last year I was in a different job, in a different province and married. Things have changed.

It’s axiomatic that doing this kind of in depth introspective work alters you. Also that you’ll smugly assume at the beginning that you are somehow exempt from that. You’re not.

This last year has reminded me that when we think we have it all figured out, life throws us a curve ball. Or as the old Yiddish proverb goes – Man plans and God laughs. Which reminds me of my all-time favourite:

Dr. Ian Malcolm, “God creates dinosaurs, God destroys dinosaurs. God creates Man, Man destroys God. Man creates dinosaurs”
Dr. Ellie Sattler, “Dinosaurs eat Man….. Woman inherits the earth” (Jurassic Park)

 Yeah, OK, not really the same but chaos theory, am I right?

This last year has also shown me the need for cheerleaders. As well as from my EdD cohort (shout out to Chickadee Nation!) I draw a lot of doctoral-type support from Twitter. The recent #ImmodestWomen tweets have got me cheering. Women with doctorates are changing their Twitter handles to ‘Dr’ to make a point that if they’ve achieved something, they should be able to be proud of itPostings from people doing doctorates can also be inspiring, encouraging and motivating. I love reading the “I finally did it” posts with the pictures of happy people in funny hats. The “OMG why did I start this” tweets can be funny or sad – depending – but usually trail a number of comments like “you got this” and “keep going!” I’d like to think if I was having a terrible day/week/month I’d get my share of cyber hugs as well. Recently my virtual buddy Janice posted about taking a break – people shared with her how hard it had been for them, and how taking a break was sensible and necessary if she needed one. It sounds trite (and I would have scoffed at this three years ago) – but sometimes it really IS about the journey. We don’t want to burn out before we get there.

So after a move to Alberta (home of many dinosaurs!) I’m unpacking my notes, downloading the reference management software on my new laptop, and getting on with it. Or starting to. Or thinking seriously about it. I’ve posted the “things I need to do to be called Dr. Bolderston” table on my wall (see pic!) and put up my “you should be writing” memes so it’s a good start.

Even though my dissertation is about 11% done* since I started my EdD I’ve developed an LGBT healthcare research niche, published, presented and changed a few things for the better. It’s hard to separate the doctoral work from my daily practice (which is the whole point of a professional doctorate – so well played UBC). As an example, I was talking to a volunteer patient last week – she generously gives her time to be “treated” by our radiation therapy students at the University of Alberta. She told me that last year she had to play a patient with prostate cancer. I said, that’s amazing! It must have been so cool for the students to learn about trans patients. She looked at me strangely and said – well, no, we just didn’t have any men volunteering! But think of the missed opportunity, I said, we could rework the whole scenario! I’m not sure if she is going to sign up for that but it’s an easy way to queer the curriculum just a little bit. Impact – right?

So whether I start on my discussion section tomorrow, or next month – graduate this fall or in 2021, I’m (89%) OK with that.  Just remind me when I post the “OMG why did I start this” tweet!

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*probably a generous estimate