This website was created as part of a research project called 'Get CreActive', led by Dr Julie Latchem-Hastings at Cardiff University. The project explored the challenges faced by adults with hip dysplasia, and in particular how they can be supported to be more physically active.
The research identified 10 areas of research priorities. And there's now an opportunity for those of us with hip dysplasia to become involved with research to help pave the way to better support for all of us.
Hi – I’m Dr Julie Latchem-Hastings. I’m a researcher at Cardiff University and I led the project which underpins this website.
The project was called ‘Get CreActive’ and was funded by the Wellcome Trust’s Institutional Strategic Support Fund. The project was born after I met with my colleague Professor Tina Gambling who had hip dysplasia herself and had spent a lot of time researching the condition. Even though a lot of people have hip dysplasia, there isn’t as much research about the condition, how best to treat it and support young adults who have it, as you might think. Tina’s research with younger adults had shown that people with hip dysplasia face significant challenges in lots of areas of their lives – including difficulties with being as active as they want to be. We decided that for our first collaboration, we’d start by looking at this – exploring how people with hip dysplasia can best be supported to be physically active.
On this page I explain what we did during the project and reflect on what we’ve learned. I present the key research priorities for the future developed by the Get CreActive group and detail how you can take part in research.
Read more about hip dysplasia and the key issues for young adults with hip dysplasia.
The Get CreActive project aimed to bring 20 people with hip dysplasia together for a series of creative workshops to explore their experiences and to be active together in new ways. We initially planned for the workshops to be in person but when COVID-19 arrived, we had to change our plans. Instead of meeting in person, we met online – many times – talking together, sharing experiences, learning from one another and being cre-active together too!
The group started off by drawing timelines of experiences of hip dysplasia and sharing them with one another.
Read about the group's timelines and what we learned from sharing them.
Once we knew more about one another and the journeys everyone had been and were on, we started to think more about physical activity – what worked, what was challenging, how had people overcome challenges and what advice could they offer one another.
Through various group tasks and discussion, to our surprise, there was a lot of agreement about the type of activities everyone enjoyed and found helpful. You can learn more about what we found out and the tips from the group in this blog and through this website.
In our first few sessions we learned so much about one another and highlighted the many shared experiences of the group. Collectively we had found potential solutions to lots of issues being raised but we were still left with questions.
It felt important to get a handle on these ‘burning questions’ – things that individuals felt they had never had the answer to, or didn’t know how they could access information that might answer their question. We sought out a series of specialist health care professionals (HCPs) – some who we had already connected with during the project, some who we already worked with and some who we got in touch with via social media and asked for their help. We had a really warm response to a call for help and I put the group's burning questions to specialist hip dysplasia, pain and pelvic health physiotherapists and orthopaedic surgeons. Recording conversations with these professionals, I shared their responses with the group. You’ll see some of these conversations dotted through the website. Some of these conversations might help answer your burning questions too. Overall, the group found getting responses to their questions helpful. Not everything however was or could be answered and there is so much we still don’t know.
The journeys the group had gone on, their experiences and all the things that mattered to them were staggering. We wanted to capture this wealth of knowledge and experience. We worked with a digital story-teller Lisa Heledd-Jones to help pull out and pull together the stories the group had to tell. You can see what we created in the ‘Our Stories’ section, on the mindfulness page and in the blog below.
Creating and sharing everyone’s stories was emotional, for each member of the group and for us as researchers and clinicians. Having watched the stories we wanted to start tackling some of the challenges people were facing. Getting back to the initial aim of the project – to focus on being active, we organised two workshops with creative artists whose ‘art’ involves movement. We worked with dancer choreographer Jack Philp and comedy theatre company Rare Species.
After six months of meeting regularly, we wanted to collate all we had learned ready to share with others, and we wanted to think about the future. We started work on this website which houses the digital stories we created, shares our experiences and learning through the project and offers you a range of top tips on all sorts of topics.
On a mid-October weekend in 2021 we finally got to meet together in person.
Descending on Birmingham from all over the UK, we spent the day setting research priorities to drive future research. Some of our family members were able to join us too and contributed to these priorities.
Our top 10 research priorities for adults with hip dysplasia are:
1. Health care professional education
This first priority reflects the group's experiences of delayed diagnosis, meeting HCPs who are not familiar with their condition, feeling ignored or being treated dismissively, having limited access to (and the lack of) specialist clinicians or advice and support about their condition. This priority calls particularly for educational research, intervention development and evaluation.
This second priority dovetails into the first - and again reflects the group's frequent experience of meeting people who do not know anything about or their condition. This priority however seeks to focus on raising awareness of hip dysplasia across sectors (e.g. the general public, work and pensions, healthcare).
This third priority reflects the groups recognition that preparing physically, psychologically, emotionally and practically for surgery is critical to post op recovery. This priority calls for research exploring how best people with hip dysplasia can improve muscle function, strength and movement pre-surgery, along their call for initiatives, tools, support and advice to be developed to prepare these predominantly younger adults for surgery.
This fourth priority recognises the importance of post-surgical rehabilitation and support to maximise function through non-surgical interventions. Research evidencing the benefits of rehabilitative interventions and the importance of long-term rehabilitative support is at the heart of this priority.
This fifth priority recognises the therapeutic importance of water to the group and calls for research to explore and evidence water-based therapies and activities for prehabilitation and rehabilitation.
This sixth priority is service-based and calls for research and development to improve access people with hip dysplasia have to appropriate healthcare professionals, including, timely referral to specialist hip dysplasia health care professionals (e.g. specialist hip dysplasia and pelvic health physiotherapists and orthopaedic consultants) and into specialist services. Establishing clear clinical pathways for this patient group sits at the centre of this priority.
This seventh priority highlights the essential role peers play in supporting others with hip dysplasia - and calls particularly for research which examines, develops and trials models of peer support which could be rolled out nationally and internationally to ensure that everyone with hip dysplasia has access to a support circle.
This eighth priority reflects the impact of hip dysplasia on the wellbeing of individuals and families and calls for research which identifies the impact of hip dysplasia on mental health and seeks to drive the development of support mechanisms and access to appropriate services.
This ninth priority calls for research to better understand the mechanisms of pain in hip dysplasia and the development or application of pain management strategies to support those with hip dysplasia to understand and manage their pain.
10. Supporting family life
This tenth priority calls for research, education and service development to better support the needs of families units which include family members with hip dysplasia.
This priority calls for joined up working across sectors (e.g. education, work and pensions, health and social care) to support key challenges hip dysplasia can present - e.g. disrupted education, financial hardship during prolonged absence post surgery.
The Get CreActive project has now concluded but there is so much more that we want to do. Using the research priorities listed above we are working on forming other projects and applying for funding. Some of these projects will be formal research – and for that we need your help.
Research funds are often highly competitive. To help us get a head start, we need to be sure we can find people with hip dysplasia willing to take part in research.
That might mean being interviewed about your experiences, testing out new interventions, joining projects like Get CreActive etc. To help with this we are building a database of people with hip dysplasia willing to be contacted about taking part in research.
If you would be willing to help in this way – please fill in the form below. Your data will be stored on secure servers at Cardiff University. How your data will be stored and managed is explained further in the form below.
I was supported by five other wonderful colleagues at Cardiff University during the Get CreActive project – Professor Tina Gambling, Dr Kim Smallman, Gwyneth Richards, Dr Kate Button, Professor Monica Busse and Dr Geraldine Latchem-Hastings.
As a team we have learned a great deal from the time we have spent with people with hip dysplasia who took part in the Get CreActive project.
We’ve been shocked to learn about the length of time it can take adults with developmental dysplasia of the hip to be diagnosed, concerned about the apparent lack of awareness of the condition in frontline healthcare professionals and saddened to have learned all the challenges adults with hip dysplasia can face.
However, at the same time however, we are overjoyed that the Get CreActive project has highlighted so much shared experience and knowledge - and has provided clear direction for future hip dysplasia work.