Take Part
Final Survey
We are looking for families who have previously completed the CoIN Study survey to complete one final survey, in order to capture data for one whole year of the Covid-19 pandemic.
The final survey is very similar to the first survey and encourages families to look forward to life after lockdown, as well as reflect on their experiences throughout the turbulent year we have had. There is also an optional section where families can discuss how the pandemic has affected one of the siblings of their child with a rare neurogenetic disorder.
We are inviting parents who have a child with a rare neurogenetic disorder aged 0-16 years old, and who have already completed one of the CoIN Study surveys previously, to complete the final survey.
The final survey will take approximately 30-40 minutes to complete. At the end of the survey families will be given the opportunity to enter into a prize draw where they can win 1 of 12 vouchers up to £50 in value!
Please note: If you have not previously completed the CoIN Study survey, your responses may not be included and you will not be eligible for the prize draw.
If you're eligible to participate, you can take part here. You can also view the information sheet here.
The CoIN Study - CLOSED
We are investigating the impact of the Covid-19 pandemic on mental health and wellbeing in families of children with rare genetic and neurodevelopmental disorders.
The CoIN Study will track changes in wellbeing during and after the pandemic in order to understand the specific challenges facing families of children with rare disorders and how these relate to mental health and wellbeing. Your responses will be rapidly fed back to charities and support organisations, and used to identify and provide better ways of supporting you both now and in the future.
We are inviting those who have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder to participate in the study. You must be at least 16 years old to take part, and able to understand and communicate in English.
The survey will take up to 40 minutes to complete the first time you do it and about 15 minutes to complete thereafter. We will ask you to complete the survey each month while social isolation is taking place, a month after schools have re- opened, and/or when there are major changes in government advice around isolation.
If you're eligible to participate, you can take part here. You can also view the information sheet.
Parent/carer Interviews - CLOSED
We are looking for 10-15 parents who have already completed the CoIN study to complete a one-off interview that will ask about their family’s experiences during the Covid-19 pandemic. An interview offers the opportunity for us to ask detailed questions to elaborate on and complement information collected in the CoIN study surveys. Additionally, it facilitates the exploration of individual family's priorities and issues important to them that were not addressed by the survey. Information gathered in parent/carer interviews will enable us to develop our survey such that it considers the priorities of and is sensitive to the specific challenges faced by families of children with rare neurogenetic disorders. It will also better inform us of changes in parental and child wellbeing and mental health during and after the Covid-19 pandemic, so we can better support families now and in the future.
The parent/carer interview registration form will remain open until mid-January 2021, so as many parents/carers can register their interest in completing an interview. Interviews will take place in January and February 2021. Once parents have registered interest they will be contacted via email to organise an interview time that is appropriate for both themselves and the interviewer.
Completing a parent/carer interview will take around 30-40 minutes. We will only ask you to complete an interview once. You must have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder, be at least 16 years old, and able to understand and communicate in English.
If you're eligible to participate, you can register your interest here. You can also view the information sheet here.
Community Feedback - CLOSED
In order to ensure we are capturing the specific challenges faced by families of children with rare neurogenetic disorders it is important that we receive feedback from the community about the survey completed as part of the CoIN study. Developing the survey will enable us to ask questions that prioritise the challenges faced by these families and their needs. Therefore, we can better understand the impact of the novel coronavirus pandemic on the mental health and wellbeing of families of children with rare disorders.
We are looking for 10 parents who have already completed the CoIN study to complete a one-off survey that will ask about their experience of completing the CoIN study survey and the information they were asked to provide. Once 10 parents have consented to provide community feedback it will not be possible to submit a new response. We will update the website once we have reached 1o parents and will aim to publish a summary of our findings soon after this. You must have a child aged 0-16 years old with a rare genetic or neurodevelopmental disorder, be at least 16 years old and able to understand and communicate in English.
Reading through the survey and completing the community feedback questionnaire will take around 30 minutes. We will only ask you to complete the questionnaire once.
If you're eligible to participate, you can take part here. You can also view the information sheet and the survey.