This is the second paper to emerge from the research on My Health Record that I have been a part of at the Centre for Health Communication and Participation.
It is published in the fall 2017 edition of Perspectives in Health Information Management and is available as open access here.
My first paper from this research can be accessed here.
As part of my role at the Centre for Health Communication and Participation I have been working on research analysing the health literacy demands of My Health Record, Australia’s personally controlled electronic health record system.
The first journal article to emerge from this research, ‘A content analysis of the consumer-facing online information about My Health Record: Implications for increasing knowledge and awareness to facilitate uptake and use‘ has just been published in the Health Information Managment Journal and is available via open access.
Throughout 2016 I have been working for the Centre for Health Communication and Participation and have just had my first piece of academic writing published in Best Practice & Research Clinical Rheumatology. The article about consumer involvement in Models of Care for musculoskeletal conditions on which I’m the lead author can be found here and is open access for a limited time (until late Feb 2017).
It’s longer and drier than other writing on this blog.. be warned!
This article first appeared in 65 Roses Winter 2016 edition.
When I was in my early twenties I met a guy. He was gorgeous, he was funny, he was smart, and I was smitten. So, he didn’t want people to know about me – we were having fun. So, he was very quick to point out we weren’t actually ‘going out’ – I was sure that would change with time. So, he found my CF difficult to cope with, wouldn’t speak to me when I was in hospital, said that ‘people like me’ maybe should be allowed to just die as a child… but these were just attitudes that could change.. right?
I was a late bloomer when it came to dating. I’d always had lots of male friends, but had never been in a relationship. I was really confident in many other areas of my life – friendships, school, work, but I lacked confidence in myself when it came to sex, relationships and love. While that’s not unusual for many young people, I’d also convinced myself that I had this ‘extra’ thing that made me unloveable – my CF.
When I finally found myself in a relationship (of sorts) that was more than just a snog on a dancefloor or a night in someone’s bed, I was overwhelmed with feelings of insecurity. I felt that I had to be perfect, not cause any issues, not rock the boat, because there was this thing – my CF – that was so wrong with me that I had to make up for it in other ways. And the way I chose to make up for it was by never challenging the hurtful behaviour. Behaviour that I would never accept from anyone else in my life.
I stayed hung up on this guy for months and months, cycling through being treated amazingly well followed by periods of rejection, sadness, and what I now recognise as emotional abuse. I accepted it all because I was so scared that this was my only chance at love. It took him asking to stay at my place to go to a music festival with his girlfriend – a girlfriend I hadn’t known about until that moment – for me to come to my senses and cut him out of my life.
Looking back on this experience almost 15 years later, I now realise he did me a favour. Had we actually ended up together, I think at best he would have eroded my self-confidence and cheated on me, at worse he may have continued and escalated the cycle of abuse he was already showing signs of when we were together.
Unfortunately, domestic partner abuse is not uncommon. In the general public, 1 in 4 women and 1 in 7 men have experienced emotional abuse from a current or former partner (ANROWS, 2013, p. 1). 1 in 6 women and 1 in 19 men have experienced physical or sexual violence from a current or former partner (ANROWS, 2013). Women with disabilities (including chronic illness) are 40% more likely than women without disabilities to experience physical or sexual abuse from a partner (Frohmader & Connor, 2015, p. 12). Men are three times more likely to perpetrators of abuse than women (ANROWS, 2013, p. 1).
People who abuse prey on vulnerability, and people with CF can be vulnerable. Our vulnerability comes not just from the fact we are sometimes less physically capable than other people, but also from a society that tells us that we have to be grateful for any love we get because our condition makes us somehow ‘defective’. Even throughout my current, awesome, 8-year, relationship, I’ve had well-meaning friends and family members tell me that I’m lucky my partner has stayed with me despite my CF. These sentiments, while not intending to harm, reinforce the idea that I’m somehow less deserving of love and relationships, that I’m automatically a burden on my partner, and that my partner is a saint for putting up with me. Even in my current relationship enduring feelings of inadequacy have meant I have not always stood up for myself when I should have, for fear that my partner will decide it’s all just too hard, and leave. Those feelings have decreased over the years, but they do still sneak in from time to time.
So, to all my CF friends, you are fabulous. You are strong, and wise, and have life experiences that make you a fantastic partner and person. You are deserving of love. Relationships are about give and take – sometimes you’ll need help, and sometimes your partner will. You need to stand up for yourself even when it is scary, because what you need from your relationship is just as important as what your partner needs. There are heaps of fantastic people in the world for whom your CF won’t be an issue when it comes to loving you – if that’s not the person you’re with now, find someone else. And if you are experiencing emotional, physical or sexual abuse, talk to someone, get help, get out, get safe.
Need help? Get help: 1800 RESPECT (1800 737 732) – National sexual assault, family and domestic violence hotline, 24 hours.
References:
Australia’s National Research Organisation for Women’s Safety (ANROWS) (2013). Violence against women: key statistics. Fact sheet. Viewed at http://wwda.org.au/wp-content/uploads/2015/10/1800RESPECT_WWDA_Webinar_Oct15.pdf
Frohmader, C. & Connor, S. (2015). Understanding violence against women with disabilities. Powerpoint presentation. Viewed at http://wwda.org.au/wp-content/uploads/2015/10/1800RESPECT_WWDA_Webinar_Oct15.pdf
I’m currently studying a Masters in Strategic Communication at La Trobe University, and this semester I’m undertaking a Digital Journalism subject.
The stories I complete as part of the subject can be found on Medium at www.medium.com/@laqwalsh
My first story (which is not health writing – be warned!) can be found here.
I’m a busy person. I currently work three jobs, volunteer for two not-for-profit organisations, and have lots of different hobbies. Yet still I recently subscribed to Netflix and have been binge watching TV shows. How do I find the time to waste? Why is it that I can watch the entire first season of Kimmy Schmidt and yet not find time to get to the gym? Is there any way I could trick my brain into using the time I set aside for TV to actually get something productive done? Well actually there is – and it’s called ‘temptation bundling’.
The term ‘temptation bundling’ puts a label on something that many people do naturally. When you bundle your temptations, you take something that you should do but that might not be 100% desirable (like going to the gym) and pair that activity with something that is very desirable (like watching the next episode of Game of Thrones). When we bundle our temptations, we make a pact with ourselves such as “I will only watch The Simpsons when I’m on the exercise bike” or “I will only listen to my favourite album when I’m out jogging”. Ironically enough, I first heard about Temptation Bundling when I was listening to a podcast in the gym. I listen to a lot of podcasts – and I’ve found that by only allowing myself to listen to the more interesting ones when I’m working out I go to the gym more often. However, I must admit that I save the most interesting ones for when I’m vacuuming.
Temptation bundling works for me, but is there any evidence that it works for others? A 2013 study published in the journal Management Science paired an audiobook version of The Hunger Games with going to the gym to test whether temptation bundling worked to help participants commit to exercise. Participants were divided into three groups – the first group could only access the audiobook at the gym; the second group were encouraged to only access the book at the gym but could access it anywhere; and a third (control) group were advised to use the gym, but with no audio book access. The study found that the first group – with gym-only access to the book – went to the gym 51% more frequently than the control group, while the second group who were encouraged to only listen to the book at the gym went 29% more than the control group. The difference in gym attendance between groups did decrease over time, but the most interesting finding of the study was that after it finished, 61% of participants paid to have gym-only access to iPods with tempting audiobooks – indicating that participants found significant benefit from the temptation bundling approach.
How can you implement some temptation bundles to boost your exercise? The first thing to do is to think of some of your pleasures – activities that you find time for, no matter what. They might be podcasts, audiobooks, watching television series, even brunch with friends. The second step is to think of how you could pair those pleasures with parts of your exercise regime. Listen to your favourite podcast only when going for a walk. You can go to brunch, but you can only go on your bike. The third step is to commit to your bundles – ‘I will only do X when I do Y’. The final step is to put those bundles into practice and see if, and how, they change your exercise routine.
One last word of caution – be sure to keep those temptations healthy! While it may be tempting to bundle red wine or chocolate with your cross training session, you could end up undoing all your good work. Good luck Bundlers!
Reference: Milkman K.L., Minson J.A., Volpp K.G.M. (2013). Holding the Hunger Games hostage at the gym: an evaluation of temptation bundling. Management Science. 60(2), 283-299.
This article first appeared in Oxygen Magazine Issue 84.
‘Overwhelmed’. That’s the most common feeling expressed by the people I coach. It doesn’t matter if they’re trying to lose weight, start an exercise program, manage their medication better, find a job or declutter their house – if the task in front of them is big, they feel its uncomfortable weight. Often, by the time they come to see me, they have sat with this feeling of discomfort for weeks, months or even years. They have been frozen in their inaction while their issue has just gotten bigger and bigger, and harder and harder to solve. Being overwhelmed has led to them doing nothing, and doing nothing has led to the problem getting worse, and the problem getting worse has led to them feeling even more overwhelmed.
The issue is that while we often know, or are told, what we should do, it’s not common that someone spends the time to sit with us and plan how we can achieve it. ‘Lose 20 kilos and you’ll be healthier.’ ‘Exercise 5 times a week for 30 minutes and decrease your chance of heart disease.’ We get told the start (this is where you are now) and the desired end result (this is where you want to be) but no one helps us to fill in the gaps. If our end result is very different from our current situation we are in danger of getting overwhelmed and stuck before we have even started.
How do you eat an elephant? One bite at a time.
One way to approach the feeling of being overwhelmed is to break down your large, long term goal, into smaller, short term goals. Let’s say our ‘elephant’ is a goal of losing 20 kilograms. To lose that weight and keep it off long term, you’d be looking at lots of changes over a long period of time – probably more than a year. Even just thinking ‘this will take more than a year’ can lead to a sinking feeling that can make you want to give up. A long term goal like this is great to have in the back of your mind, but it won’t keep you motivated over the weeks and months it takes to achieve it. You need to start breaking down your elephant into more manageable chunks.
What is a reasonable short term goal that you can do this month? Maybe you can aim to exercise at the gym on 15 days out of the month? Or perhaps you can investigate seeing a dietitian and start developing a healthy meal plan? Already those things seem more achievable than our large ‘elephant’ goal of losing 20 kilograms. But goals you can achieve in a month also aren’t quite bite-sized.
What is a goal that you can achieve this week? On Wednesday you will go to the spin class at your local gym. On Monday you will call your community health centre and book an appointment with the dietitian. For some people breaking down their goals to daily or weekly tasks is enough to feel like they can realistically achieve them. For others, the feeling of being overwhelmed and stuck can mean that goal setting needs to be even shorter-term to achieve results. That’s when I work with clients to break down their goals into a series of bite-sized ‘action steps’.
Take, for example, the goal of going to the spin class on Wednesday. What are all the steps you need to achieve that? The action step list might look like: on Tuesday night put workout gear, sneakers and gym membership card in gym bag; hang gym bag on front door handle; on Wednesday morning put gym bag in car; call gym at lunchtime on Wednesday to book a spot in class; leave work by 5:30 on Wednesday; drive straight to gym from work; attend class. By taking this approach, suddenly a goal of ‘lose 20 kilograms’ starts with a goal of ‘pack gym bag’ – a bite sized piece of the elephant that is much more achievable. The goal that was getting bigger and bigger is made smaller and smaller, and negative thoughts are replaced by feelings of ‘I can do this’.
In my experience, success breed success, and people who are achieving their action steps and weekly goals start needing these intense goal-setting approaches less and less. However, the great thing is that once you have learnt these tools you can come back to them if you have a slip up, or as you set new, even more ambitious, goals. Eating an elephant isn’t hard – all you need to do is take the time to break it down into bite-sized pieces.
This article first appeared in the Summer 2015 edition of 65 Roses from Cystic Fibrosis Victoria.
When I found out that I needed to have a transplant, my first feeling was guilt. I felt that I had failed. I felt that I hadn’t done enough to keep myself well. I thought that if only I’d exercised more, eaten more, done more physio, had just done “better”, I wouldn’t be in this position. My second feeling was fear, but my first – and most overwhelming feeling – was guilt. Guilt about my personal failure.
After my transplant – as I got well and strong again – a realisation slowly started to dawn on me. I realised that living with CF pre-transplant had been hard. It had been time consuming. It had been effortful. But that effort also increased slowly, over time, so gradually that I just adapted to the changes and kept going. After transplant, everything was so much easier. I woke up refreshed from sleep. I could get ready to leave the house in under 30 minutes. Going to work was easy. Playing sport was joyful. I had extra time at the start and end of each day because I didn’t have to do nebs and physio any more. Suddenly I had lots of time and lots of energy, and I came to realise that this is how other people go through life all the time – and that pre-transplant my life with my CF lungs had been very different from everyone else’s every day. This knowledge allowed me to work through my feelings of guilt and failure. I was able to finally properly understand what living with a chronic, progressive disease meant. It meant that I could only control up my health up until a certain point, and that I had actually done a really great job of living with CF and managing my health through really tough times. My new lungs didn’t only extend my life – they took away my guilt and showed me that I wasn’t to blame for needing a transplant. Cystic fibrosis, a weird infection and some blood clots in my lungs were to blame.
Guilt is a very common emotion for people with chronic conditions. We are constantly being told that we need to exercise, eat right, take medications, do therapies. Underlying these instructions is the message that if we do all the things that we’re told, then we will stay healthy, and if we don’t, we’ll get sick. Often, when we have acute episodes of illness, the first thing that our health teams look at is what we have been doing that could have led to this exacerbation. Have we skipped meds, physio, exercise or eating? Unfortunately, the story isn’t always that simple. Yes – there are things we can do to manage our health, but CF is so complex that many things are out of our control. The complexity of CF also makes prioritising the different treatments incredibly difficult – so we get told ‘you have to do everything’ – but even our health team know it’s impossible to do everything all the time. The end result can be feelings of guilt and blame when our health declines.
There are no easy answers when it comes to these guilty feelings. I’m lucky to have had the experience of a very successful transplant to show me that I have no reason to be guilty, but I still do have occasional ‘guilt flare-ups’ around different aspects of my health. The things that work for me to manage this guilt (apart from getting a new set of lungs) are setting goals around my health and being kind to myself if I occasionally miss parts of my regime. I also seek out other people with CF, people who are post-transplant, and people with other chronic illnesses to share advice, stories, and to support me when I feel I am slipping in my own care.
Alongside these individual strategies, families and health care teams have a vital role in providing positive feedback when someone is managing well. I can probably count on one hand the number of times I have been told I was doing a good job at managing my health, but I can tell you countless stories of being on the receiving end of accusations of failing in my self management – especially during times when I was acutely unwell. While it is definitely important to identify and address areas of care that could be improved, it would be great to also see more acknowledgement of things that are going well. It’s also important for people with CF to be able to have honest discussions about disease progression and prognosis, so we know the outcomes we can reasonably expect from our self management efforts.
As I sit here, writing this, it is DonateLife Thank You Day. I am so grateful to have had the experience of transplant, not only because it saved my life, but also because it has changed my perspective on my CF and has allowed me to treat myself a bit more kindly. I hope that, with some good self management strategies, and supportive people around them, other people with CF are able to reach a point of managing their feelings of guilt without needing to have a transplant to get there.
As part of the Just One Breath competition from the Lung Foundation Australia a friend and I created a fun, short, video to inspire lung health. We’ve called it “Breathless Bubble Party” only because we had to think of a name in about 2 minutes.
You can find it on YouTube here or head to the Just One Breath Facebook page and give it a like!
This article first appeared in the Autumn 2015 edition of the 65 Roses Magazine from Cystic Fibrosis Victoria.
Confession time: I’m a massive complainer. An angry letter, a post on a company’s Facebook page or a terse phone call really gives me satisfaction. Put the word ‘formal’ in front of complaint and my love increases 10-fold. And nowhere do I enjoy complaining more than in a hospital.
Ok – so that might be a bit of an exaggeration. I don’t love complaining. But I definitely love it more than the feeling of impotent rage that come with inaction, and my friends definitely love me writing a letter or an email to an offending organisation rather than having to listen to me get mad in the retelling of a story.
People with CF and their families deal with more than their fair share of frustration, poor treatment and seemingly pointless bureaucracy at the hands of health and other government services. Often it feels as though we are stuck and helpless – especially because the small numbers of people with CF mean that there are limits to choice when it comes to accessing care. I used to feel worried about speaking out when what was happening in hospital didn’t feel right to me – but in the past 6 or 7 years I have definitely embraced the power of the complaint – both for improving the quality of my own care, and – hopefully – to provide evidence of faulty systems that need to change for all patients.
One event turned me into a fearless complainer. I was working in a large community health service that had only received a handful od complaints over the previous year. It was a service with over 400 staff, and treated thousands of clients annually – and it seemed unlikely that we were doing things near-perfectly. In fact, we knew we weren’t perfect because our clients were quietly telling us about their frustrations, but because no one was writing it down or formalising their complaints they could be ignored. In a bid to gather evidence for change, the CEO of the organisation decided that all staff needed to go on a complaint hunt! If someone voiced an issue to a staff member, we were encouraged to ask, or help, the client to formalise their complaint and provide it in writing. These written complaints could then be presented to the senior management team and board as evidence of what needed to change. Now, Whenever I encounter significant frustrations in the health services I’m a patient of, I think of this experience, and I write my concerns into a complaint letter – because complaints are one of the ways that a hospitals monitor issues and know when a problem needs to be dealt with.
A few tips for making a good complaint:
Complaining can be scary and many people avoid complaints because they don’t want to ‘rock the boat’ or be seen as the ‘bad patient’. But complaints really do help to improve a health service and will help you to have a better experience with the hospitals in the long run. If you would like support or more information about making complaints, the Programs and Support Services Team at CFV are happy to speak with you.
