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Investigating the Impact a Child’s Diagnosis of Hydrocephalus has on Parental Wellbeing

6th March 2021


Parents of children aged 0-17 in England, Northern Ireland and Wales are invited to take part in a research study which is being conducted by Monae Lees, an Applied Developmental Psychology Masters student at The University of Derby. The study aims to investigate the impact a child diagnosis of hydrocephalus may have on parental wellbeing. Monae has a niece who has hydrocephalus and is a member of Shine.

Hydrocephalus has been selected as the topic area due to the limited research available, this research area requires further exploration. Little research focuses on the effect a hydrocephalus diagnosis has on parents and their wellbeing. The study aims to provide an understanding of the types of worry parents may undergo when caring for a child with hydrocephalus. The information gathered from the study intends to raise awareness of hydrocephalus and provide an insight into parental wellbeing when caring for a child with hydrocephalus.

All parents of children up to and including the age of 17, who have received a diagnosis of hydrocephalus and are a registered member of the Shine are invited to participate in this study.

If you are happy to take part a detailed information sheet will be provided which will outline all information about the study. It will provide you with detailed answers to questions you may have regarding the research process. You will be invited to fill out a questionnaire that explores parental concerns towards hydrocephalus, self-confidence within parenting, fear of Covid-19 and will also measure your wellbeing. The questionnaire will be completed via Qualtrics, a survey building site and will take approximately 15 minutes to complete.

The survey is available for you to complete here.

It is understood that Hydrocephalus is a very sensitive topic and appreciate that you may change your mind on whether you would like to participate. Your participation is entirely voluntary and there are no consequences of not taking part. You have the right to withdraw from the research at any point during the questionnaire without any justification. Additionally, if you have submitted the questionnaire you have up to 14 days after submission to withdraw your data.

Thank you for considering participation in this study.

Yours faithfully,                                                                                                     

Monae Lees (Lead Researcher)                                             

Nicola Griffiths (Shine)

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