Can you spare around 30 minutes to take part in our new UK Home Care Study?

Home Care Survey

We would love to hear your views …

You are invited to take part in a new UK Home Care Survey, in the form of an online questionnaire, which asks about your experience of UK provision of care support for your child or children with myotubular or centronuclear myopathy (under 18 years). The survey is being run by Myotubular Trust with the help of Orla Lynch at University College Cork.

Having helped to support some of our community with their children’s home care awards, we identified that the process can sometimes be challenging for our families, while for others it is made much easier. Also we have listened to you about the positive and negative impacts that care has upon a family and would like to evidence how adequate care can support the whole family’s needs. We hope this survey will formalise our community’s lived experiences of care provision, in order for us to help this process be as straightforward as possible.

We welcome participation from ALL of our families, who have experienced applying for home care support for their children. All we will ask is that the survey is completed by a primary carer – like a parent, or someone else, who is or has been wholly responsible for the child.

Please email wendyhughes@myotubulartrust.org if you wish to take part. You can read on for more information about how we are conducting the survey too.

Please note: The survey will take approximately 30 minutes to complete yourself via a link. Your answers on the form will not be received or seen by us until you submit the form at the end.

What’s the purpose of the home care survey?

We hope that the survey will provide us with evidence and data to:-

find out the type of care being provided to our patient community, funded by UK national providers (NHS Continuing Healthcare & Social Care Services);
examine the experience of primary carers in negotiating a care package for their child;
help identify if there is an equal level of care being provided in relation to need, regardless of where you live in the UK, and;
find out the impact of this care package on the family unit.

How do I take part in the survey?

Please email wendyhughes@myotubulartrust.org in the first instance, who will send you an information leaflet and consent form to read.

We will send you a link in order to complete the survey online by yourself and would encourage you to complete it in one sitting from your smart phone or computer.

You don’t need any information to hand to complete the questionnaire, it can be completed from your recollection in approximately 30 minutes.

You can stop at any time, or skip any questions you prefer not to answer.

We cannot know who has gone on to complete the questionnaire, and may send other communications asking you to take part. Apologies if you have already taken part – feel free to ignore the reminders.

We won’t see any responses until you hit the ‘submit‘ button at the end.

Additionally, and should you specifically agree to it, you might also be asked to participate in an interview with a member of the Myotubular Trust team. The interview would take approximately one hour and your anonymised quotes may be used to supplement the survey report.

Participation is completely voluntary and there is no obligation to take part. But the more people who take part, the better and more accurate our understanding will be. Thank you.

Can I withdraw my data from the study?

Once the survey is completed you cannot withdraw your answers because we will not know which survey is yours. This is because we will not record your name or other identifying details. If you take part in the interview, we will still not identify you or where you live, for example.

How will the data be stored?

All the information collected will be kept anonymous, so that no one who takes part can be identified. The information you provide will only be available only to Wendy Hughes (Myotubular Trust) and Orla Lynch (University College Cork, Ireland). Any identifiable information will be deleted by them after a week of collecting it, and the data will be stored for a minimum of ten years.