You’re cast away on a desert island and ….. – exploring physical activity experiences with adults with hip dysplasia28 July 2021
“You’re cast away on a desert island and …..”
When my office mate and experienced qualitative researcher Dr Kim Smallman suggested we used a ‘castaway’ style elicitation activity/task in our Get CreActive sessions to explore physical activity I thought it sounded fun but was very unsure about how the group we were working with would respond to it and what it would yield.
The project had started with another of Kim’s ideas – encouraging each member of the project to draw a timeline which represented their experience of hip dysplasia. The timelines were about giving participants a map to speak to when first meeting this group of friendly strangers. In my previous blog that activity sparked a deep and detailed sharing of experience – showing us and everyone taking part, the variety in their journeys but also the extraordinary similarities between their stories.
Get CreActive group
The Get CreActive group vary in age from early 20’s to 60. Some were diagnosed with hip dysplasia as young children, some only recently diagnosed in their 20’s and some not diagnosed until their 40’s. They are all at different stages of pre and post-surgical interventions with some having their first surgeries now, some having further rounds of surgery to come, some who had surgeries long ago and some, for whom surgeries were decided against.
Having met each of the group and listened to the trials, tribulations and triumphs of their individual lives, our first collective task was to encourage the group to think and talk about being (and trying to be) physically active with hip dysplasia. The project has a physical activity focus and we wanted to know what this group had found worked for them (and what didn’t).
Given this range and the variety of experiences within the group I anticipated a tangled mesh of responses that would feel like treacle to wade through and would be challenging to say the least, to pull together. But instead – it went like this:
The group is meeting in a purely digital space. Covid has made it that way but it’s far from the sterile and impersonal environment I hear so many people complain about. It’s pretty much the opposite – it’s packed with emotion, it’s sensitive and warm. Together, we’ve built a space and sense of real community and we’ve done it quickly. Having shared mini life stories last session and started this one talking about challenges, facilitators, barriers and hopes and ambitions – we do need a bit of light relief. I pose Kim’s castaway elicitations:
“You’re cast away on a desert island and you can only take 2 items of physical activity equipment, 2 exercises/physical activities, 1 piece of wisdom/knowledge/understanding about hip dysplasia and physical activity, 2 soundtracks and 1 luxury item”
We start with the ‘two pieces of physical activity equipment’. The chat box quickly comes alive as the group pile in their responses in amongst a bit of open chatter.
Resistance bands! A spin bike. My swim suit. A yoga mat. My bike with solid tyres and my turbo trainer! A gymball…..the list goes on.
Although the odd bit of variety creeps in in places – ‘my hockey stick’, ‘boxing gloves’ – in the main the equipment choices fall easily into three categories:
1. Water-based activities
2. Resistance exercise/strength training
A similar thing happens when we move to ‘two exercises/physical activities’ – ‘swimming/aqua aerobics and Pilates’, ‘swimming and strengthening exercises’, ‘yoga’, ‘plank for core and squats’, ‘cycling’. Again, the choices fall into three categories:
1. Water-based activities
2. Strength training
3. Cycling. I’m stunned that there are such evident preferences.
As we talk more about these activities and exercises the group have a clear understanding that keeping their core and hip muscles strong is key to their function and pain management. How they go about that seems to depend on how they can best exercise pain free (or largely pain free). For most of them water features in that with on or in the water activities working well and the soothing, therapeutic nature of water coming to the fore. Most, if not all of the group, engage in some form of strengthening activity – often using resistance bands, resistance of water or body-weight exercises through activities such as Yoga or Pilates. The group are also largely, big fans of cycling. Lots of them find cycling helpful, freeing – and often much easier than running. The cyclists are on it immediately and are setting cycling meet ups on Strava.
Knowledge and Wisdom
So what about their knowledge and wisdom? Again the chat box is quickly filled as the group offer a wealth of thoughts. Given their choices above, it’s clear that their lived experience has taught them much – and now, unsurprisingly, comments pour out which closely reflect core rehabilitative principles.
Their pearls of wisdom start with clear messages of individuality and a need to pace activities – “It’s your journey at your pace, forward is forward its not a race!!”, “Build up new activities slowly and pace yourself”, “Take it one day at a time”and the consequence of not pacing being made clear – “Pace yourself – just because it doesn’t hurt now doesn’t mean you won’t be in agony later!” There was also recognition that sometimes taking a break is needed too – “it’s okay to take a break sometimes from rehab, as long as you get back to it, and just not overly stressing about it.”
Their advice also mirrors the ups and downs of a life with hip dysplasia – dealing with constant change and the reset surgery brings and the commencement of another period of rehabilitation – “Slowly slowly reintroduction of exercise, and learning to accept your new baseline to progress from.”
Listening to your body
Knowing and listening to your body to help guide pacing was also a clear message from the group – “Know your own boundaries and when to stop”, “Knowing when my hip pain is because I have done too little, too much exercise or I just need to stretch” and was followed by more specific advice encouraging focus on the form (quality and accuracy) of activities and their intensity – “Quality of exercises rather than quantity”, “Less is sometimes more, but being consistent is everything”.
With the group already establishing in previous session that pain could and had played such a large part in their decision making for surgery, their abilities and inability to engage with activity – encouragement was also offered about the possibility of finding pain free activities “You can find a way to build/maintain hip which doesn’t cause pain”.
Activity and effort
Despite challenges faced however there was also clear recognition that activity and efforts made to exercise made a difference – “Movement and exercise is important even if you don’t want to do it – the gain in mobility, strength and independence will be worth it.”
Looking at this range of advice – as a physiotherapist, it’s the type of knowledge and understanding that you work towards instilling in every patient rehabilitating or seeking to maintain their function. This advice is ‘spot on’.
To complete the session we asked our final questions – for their selection of songs and luxury items. Their music choices reflected their personality, represented key points in time, stories of special moments and often reflected major triumphs. To deepen our connection with one another we then built a project playlist and have used that throughout the project in a variety of ways.
Luxury item choices brought much welcomed humour to the proceedings and again taught us much about one another. The list featured choices of chocolate and dressing gowns to dogs and husbands!
Consistency and Similarities
These activities drew out surprising consistency and similarities around physical activity preferences. Their choices and words of wisdom demonstrated an embodied understanding of rehabilitative and training principles – all of which are now ripe for sharing in a bid to support other people with hip dysplasia. Now in the final stretch of the Get CreActive project we are developing a website to do just that, with a launch planned for late autumn. In the meantime however, there are more stories to tell. Look out for my forthcoming blogs on digital storytelling and getting ‘CreActive’.
The Centre for Trials Research is a UKCRC-registered clinical trials unit. It is publicly-funded to enable applied research that informs policy in health and social care in Wales and the UK, and is currently running studies across Wales, the UK and internationally. The Centre is funded through Welsh government by Health and Care Research Wales, and Cancer Research UK.