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.
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.
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.