Hip Dysplasia Life: A How-To Guide For Surviving And Thriving With Hip Dysplasia, For You And Your Family11 April 2022
The Get CreActive project explored the experiences of starting and staying physically active for 20 adults with hip dysplasia. Through exploring physical activity, the broader impact of hip dysplasia on all aspects of life emerged through discussion and an array of creative activities.
The final aim of the Get CreActive project was to produce a peer support website to support people living with hip dysplasia and their families. In this final blog of the series, we present the resultant website.
Throughout the Get CreActive project we ‘captured’ all our activities and by working with creative artists, had amassed an array of ‘outputs’ ripe for sharing with other people with hip dysplasia. We had 20 stunning digital stories, timelines, pieces of art, recordings of movement sessions, bize-size conversations with specialist health care professionals. Plenty to get started with.
Mapping the core challenges and key learning shared by the group, a draft plan for a potential website was developed. Discussing key design features, look and ‘feel’, level of interactivity and long-term management the groups ideas fed into the website design, developed by web designer Dan Jones (iamDan).
The site comprises of 6 key pages. Alongside the ‘Home’ page introducing the website with a friendly welcome for people with hip dysplasia and their family and friends, the site explores ‘Diagnosis’, Being physically active’, ‘Mind and Spirit’ – thinking about how to enhance ones mental health and general wellbeing, ‘Pre and post-surgery’ – preparing for surgery and rehabilitating afterwards.
The digital stories – each with their own particular emphasis sit in their own ‘our stories’ page and are threaded through the site enabling viewers to hear directly from people with hip dysplasia all the way through.
The site is populated with a range of blogs written by the group – providing support and information about topics such as – preparing for surgery, what to pack in your hospital bag and what you might need to think about if you’re having to travel for surgery. ‘Burning questions’ asked of health care professions during the project feature in each section, displayed as short videos or audio recordings. A recording of the projects commissioned movement workshop by Jack Philp is displayed, enabling anyone to try out the workshop.
Throughout each key page, a series of ‘top tips’ are provided – key tips from the group about any given topic area. These feature heavily in physical activity sections where the group provide specific tips for getting involved with key physical activities that have worked for them.
In peripheral areas of the website sits information about the Get CreActive project, the 10 research priorities developed as part of the project and a ‘Join us’ option for adults with hip dysplasia to sign up to receive information about studies about hip dysplasia they may want to take part in. In a final acknowledgements page, we pay tribute to our Get CreActive team member Tina Gambling, sadly lost to a short illness at the outset of the project.
The Get CreActive website www.hipdysplasialife.org is now live. Although it is the end point for the project, it is certainly not the end point for the group. With plans shaping up for hip dysplasia awareness month in June and our onward ambition to take what we have learned from this project into future research grants, the Get CreActive project will have a long-lasting legacy.
Our thanks to the Get CreActive group for a wonderful 18 months and to the Wellcome Trust Institutional Strategic Support Fund for funding this fantastic project.
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.