IMPORTANT NOTES - Please read carefully
The survey is hosted on SurveyMonkey and is expected to take approximately 45 minutes to complete. The survey will need to be done in one sitting as you cannot save your answers, so please do settle down with a cuppa if you can.
We recognise that some questions may be difficult to answer as not every possible answer for every demographic can be captured in a list. Please respond in the way that best reflects your experience, and if you feel a question is not relevant to you, please choose the N/A option or use the ‘Other’ comment box to provide more more detailed answers. Every comment will be read and valued.
We also understand that PANS and PANDAS are complex conditions and it's not possible to capture the full experience within the limitations of a survey, however we invite you to complete the survey as best you can.
This survey is only for parents/carers to complete:
This survey is for parents and carers of children, young people and young adults of any age with a diagnosis of, or suspected to have PANS or PANDAS. We may undertake further surveys in the future to capture the voice of the child, young person or young adult themselves, however this survey is only for parent/carers to complete as we are capturing their perspective.
Please complete one survey per child:
If you have more than one child, young person, or young adult affected (of any age), please submit a separate response for each. Throughout this survey, the term 'young person' refers collectively to children, young people, and young adults.
Trigger Warning:
Some of the questions included may be difficult to read or respond to because of the nature of the information we are gathering. We understand how challenging it can be to share certain experiences, and we truly appreciate the time and care you are giving to this survey and thank you sincerely for your contribution.
Participation Details:
Participation is entirely voluntary. You may withdraw at any point before submitting the survey and your responses will not be used. Once submitted, we will be unable to remove your data.
Data Privacy and Use:
This survey is completely anonymous. SurveyMonkey will provide anonymised, aggregated responses. No individual participant can be identified by the Charity or any third party. All data will be stored securely on password-protected devices and accessed only by those directly involved in the survey and data analysis. Aggregated data will be retained indefinitely for use in this and future relevant projects.
Free text boxes:
Please note there are free text boxes within the survey. We invite you to elaborate on your answers within these boxes, but please do not provide any personal identifiable information.
