PPI Project For Carers with Experience of Home Enteral Feeding: Experiences, issues and tips & tricks

This is a Patient and Public Involvement (PPI) project: we would like carers to help us refine a survey, advise on how to distribute it, and comment on the findings. This is to help us make the research questions more relevant and meaningful.

Our focus

We would like to speak to carers who have experience of home enteral feeding. Home enteral feeding is normally for patients who have a problem with feeding through their mouth and down their throat, so nutrients are delivered straight to the stomach. This might be through a tube in their nose (e.g. nasogastric or NG tubes), or a tube that goes into their tummy (e.g. PEG tubes).

We want to find out more about experiences, issues and tips & tricks focused on:

  • A) The usability of the equipment that is used, e.g. are the pumps easy or hard to programme, do they alarm a lot, do they disturb you at night, do they give error messages that you cannot understand, and are blockages frequent?
  • B) Issues with taking medication, e.g. have you ever had difficulties trying to give medication because you were given pills, or maybe some medication is more difficult to give than others?

Project plan

The project is divided into three activities that we would like to run over Summer and Autumn of 2014:

  • Activity 1) We will draft a survey and send it to our Carer Advisory Group for feedback on whether the questions are the right ones and to check how they are worded. This should take 1-2hrs.
  • Activity 2) We will disseminate the survey. This should take about 30mins.
  • Activity 3) After analysing the survey results we will share them with our Carer Advisory Group. This should take 1-2hrs.

How can I take part?

We would like carers with relevant experience of home enteral feeding to be part of our Carer Advisory Group, and to fill out the survey that is developed. If you would like to take part, or just would like further information then please get in touch.

Why should I take part?

There has been very little research on the experiences of carers who have had to deal with home enteral feeding. We would like to find out more about the issues that carers have faced, particularly in terms of the usability of the pumps and the equipment that is used and in terms of giving medication. We would also like to investigate the tips & tricks that carers develop to cope with these issues, e.g. are blockages experienced and how are these dealt with. What would you tell someone who was just starting out in this area? These experiences could help new carers. We can also disseminate our research to service managers and manufacturers of equipment.

How will I be compensated for my time?

As a thank-you for your input people in the Carer Advisory Group will be given £50 for Activity 1 and Activity 3, so £100 in total.

People who fill out the survey in Activity 2 will be entered into a prize draw – details to follow.

In both cases please get in touch.

Who is funding and organising the project?

This project is being organised by Dominic Furniss and Mine Orlu Gul. This project is funded by University College London – Grand Challenges of Human Wellbeing small grant. A project summary page can be found here.

Contact

Please contact Dominic Furniss if you would like more information.

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