Page 1: Participant Information Sheet

Feeling Good Despite Ehlers-Danlos – An online Positive Psychology Intervention for Ehlers-Danlos Syndrome Patients.

The Research Project

My name is Larissa Kalisch and I am a master student at the Department of Psychology in Anglia Ruskin University. I am conducting a study on the effects of a positive psychology based online programme for Ehlers-Danlos Syndrome patients. You are invited to participate. My supervisor is Dr Ilona Boniwell (ilona.boniwell@anglia.ac.uk).

I am conducting this study to examine whether an online intervention based on positive psychology increases health, well-being and life satisfaction in patients suffering from Ehlers-Danlos Syndrome. The intervention consists of topics such as strengths, kindness, gratitude, mindfulness, etc. lasting for one week and including activities, writing or reflection tasks.

Data recorded in the course of this study will be analysed statistically with the aim of writing my master thesis. A publication in journals might follow.

If you wish to contact me for further information about the study, please do so via larissa.kalisch@anglia.student.ac.uk. This research is not funded.

Your Participation in the Research Project

You have been invited to take part in this research because you are diagnosed with Ehlers-Danlos Syndrome. There is no obligation to take part in this study. Should you choose not to take part in this study, there will be no penalty involved.

If you decide to take part in this study and wish to withdraw, you are free to do so without prejudice at any time. If you choose to withdraw from the study, you can do so by contacting me via email noting your withdrawal.

If you agree to take part in the study, you will be asked to do the following:

  • To give informed consent
  • To complete an online questionnaire that will take around 20 minutes
  • To complete a 5-week online intervention (provided via email) consisting of different exercises to do individually (45-60 minutes in total a week) and a 2 minute online questionnaire evaluating the satisfaction with those exercises*
  • To complete an online questionnaire that will take around 15 minutes at the end of the 5 week program
  • To complete a third and last online questionnaire that will take around 15 minutes one month later
* Please note that participants will be randomly assigned to one of three intervention groups, which means that the starting point of the five-week program will vary between May and August.

There will be no risk involved in participating in this study, beyond that experienced in day-to-day life such as boredom, fatigue or temporary distress. The study team can be contacted any time via email. All standard health and safety regulations will be adhered to, and a risk assessment will be completed prior to testing. There are no special precautions that you need to take before, during or after taking part in the study. Agreement to participate in this research does not compromise your legal rights should something go wrong.

Individual participants’ results from this research will remain completely confidential, accessed only by me and my supervisor. Data collected from your participation will be stored securely for three years. After this period, all data will be securely disposed of. For data analysis, participants will be assigned a code number and any personal identifiable information (e.g. consent forms) will be kept separately from the data.

If following your participation you would like to withdraw from the study, please email me within one week and you will have the option to have your data removed or to allow the use of their data, which has been collected up to that point.

Please visit Sections 3.2 and 6.1 in the Code of Practice for Applying for Ethical Approval at Anglia Ruskin University for further information about consent and the Data Protection Act (1998).

YOU WILL BE GIVEN A COPY OF THIS TO KEEP, TOGETHER WITH A COPY OF YOUR CONSENT FORM UPON REQUEST