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New research explores parental experience of their child’s diagnosis

What is the psychological impact on parents immediately following a child’s diagnosis of congenital sensory impairment?

Rebecca Greenhalgh, Trainee Clinical Psychologist at Coventry University is leading a new research project, funded by Coventry University, School of Psychological, Social and Behavioural Sciences, designed to gain a better understanding of parents’ experiences immediately following their child’s diagnosis with a sensory impairment. It’s hoped that this information will help medical staff, midwives, psychologists and social workers provide better support during the period of the diagnosis.

The research was granted ethical approval by Coventry University’s Research Ethics Committee.

Participants will be interviewed by the lead researcher and be asked a number of questions about their experiences of receiving their child’s diagnosis of congenital sensory impairment, including speaking about how they felt at the time, what their thoughts were and their immediate reactions.

The interview will last between 60 and 90 minutes and will take place either remotely via a secure online platform, or face to face, according to participants’ preferences.

If you would like to take part, please contact the lead researcher Rebecca Greenhalgh (see contact details below). You will receive participant information and be asked to complete a consent form before taking part.

Researcher contact details:
Lead Researcher
Rebecca Greenhalgh, Trainee Clinical Psychologist
Email: [email protected]

The logo of BIOJ.

Nystagmus in Down Syndrome – a Retrospective Notes Review

Nystagmus has been reported in up to 30% of people with Down Syndrome (DS), and yet is still not well understood. This study, by a team at Moorfields Eye Hospital, aims to characterise the clinical features of patients with DS and nystagmus. It is recently published in the British and Irish Orthoptic Journal (BIOJ).

The article sheds light on the different types of nystagmus which can be present in someone who has DS and, in particular, that these can arise from a variety of causes, not always linked directly with DS.

Full clinical assessment of the nystagmus is needed in order to inform support and management of the sight.

Read the full article in BIOJ online here

A woman holds her head in her hands.

A new article on oscillopsia

Many people who have acquired nystagmus experience oscillopsia from time to time. This is where they see a moving image of the world around them, rather than a still one. People with congenital nystagmus can also, occasionally, see objects moving around when they are not.

A new article, published online by Medical News Today, details some of the causes of oscillopsia, including, of course, nystagmus. It also details the diagnostic testing which can be carried out by the ophthalmologist when investigating the cause, describes the symptoms and mentions a few treatments which may be appropriate.

There is, sadly, no amazing new therapy to try, but the article does provide a useful summary.

Read the full article online by clicking here.