Gavin Dean: I need your help for my study on how Usher syndrome affects psychological wellbeing (BSL)

To take part in Gavin’s study, which has a deadline of Jan 31st, click here.

Having Usher syndrome myself since I was a teenager, I have often found myself in many situations where both my deafness and blindness has left me feeling depressed, anxious, isolated, hopeless, and frustrated because of the many challenging and uncertain experiences encountered during everyday life.

To watch this in BSL, click play below:

These emotional feelings have often stemmed from barriers to communication, mobility, accessibility and the general lack of understanding, appreciation and acknowledgement around what Usher’s is and the issues faced throughout our lifetime both in terms of our physical and psychological wellbeing.

Even seeking help from health and social care professionals, who are supposed to be understanding and supportive in terms of our needs can be a frustrating experience!

There has been times when support has been Usher and patient centred, but often there is a big inconsistency and more often or not I am left feeling frustrated, unheard and left with unmet needs.

One experience that really sticks in my head, is the one when I went to see my GP about feeling anxious and depressed. At the time I was struggling at work as a Physiotherapist due a number of disability issues which where a consequence of my vision and hearing deteriorating. All part of having Usher type 3!

I was finding my mobility in terms of traveling to and from work was becoming effected, lip reading was becoming hard and straining, and tiredness affecting my social and family life outside of work.

Over time, I started to feel more and more anxious about leaving the house alone, looking after my son on my own and was becoming low in mood and losing my desire to care all because of the issues I was facing with my Ushers. I did not want sympathy just understanding and help to move forwards.

During the consultation with my GP I was asked to fill in a questionnaire which measured depression, this was in small print! There was no large print version at the practice, I even asked if they could enlarge it on a photocopy machine and for the GP to help read the questionnaire.

Apparently this could not be done for some reason, I suspect due to the current health climate. I was advised to take the questionnaire home and get someone to help me fill it in and then hand it back in to the reception.

This whole experience was totally stressful and upsetting. Firstly why couldn’t I not get the support I needed to access a form? Surely any deafblind or disabled person who requests something as simple as a large print form or for assistance to help read or understand a form then they should be supported. Secondly I did not want my closest friends or family to know I was suffering from depression. Lastly, commuting to the practice is challenging with limited sight!

I went away feeling like no one wanted to help, having to experience these barriers and feel my a total lack of understanding about my Ushers and now it was effecting my psychological wellbeing made me feel worse off then before going to see my GP!

Thankfully, I eventually opened up to friends and family, and their support was paramount in helping me cope and improve my psychological wellbeing.

If it was not for the strong social support, who knows what my psychological wellbeing would be like now. Even to this day, I still have ups and downs in terms of my mental and psychological wellbeing due to the ongoing challenges of living with Usher syndrome. I like to term it ‘lost in the world of Usher’!

That experience I had with my GP was never forgotten and has left me wondering how many more people with Usher syndrome are experiencing an impact to their psychological wellbeing and face barriers to the appropriate support they may need as a result of their visual and hearing losses?

Not everyone would have had the same social support as I did either. I felt there was a gap in this kind of support and there is a fundamental need for more awareness and specific support in terms of psychological wellbeing with people who siffer from forms of deafblindness.

During my Health Psychology master’s degree at Brunel University, London I had the opportunity to undertake a research study. I was adamant I wanted to undertake it around Usher syndrome and psychological wellbeing not just because of my personal experiences but also because when you look at published research there is very little on Usher syndrome and the effect on psychological and mental wellbeing.

I feel my study ‘Investigating the impact of Usher syndrome on psychological wellbeing’ which Brunel University is supportive of would be fundamentally important and benefit the Usher population. Undertaking this study would provide me the opportunity to get some hard scientific evidence in the public eye on the impact of Usher syndrome on psychological wellbeing.

Some of the aims of the research project is to:

• Investigate the psychological wellbeing of people with Usher syndrome in the UK
• Investigate the prevalence of depression and social isolation in people with Usher syndrome in the UK
• Investigate if levels of social support acts as a buffer in the relationship between depression, social isolation, poor wellbeing

There is a need for more participants to take part by the 31^st Jan 2016. I am therefore inviting those with Usher syndrome in the UK to take part in this questionnaire-based study, which can be done online at Survey Monkey link below.

https://www.surveymonkey.com/r/UsherResearch

 

If you feel alternative formats or ways of communicating is desired, then please email me on 0520860@my.brunel.ac.uk and I will assist in every way to allow participation in the study.

For those with Usher syndrome who take part and complete the study questionnaire a One4all £10 gift voucher which can be used in over 22,000 UK retailers is given as a thank you for your time and participation.

Your participation will greatly help this vital research and could contribute to improving future understanding and support to psychological wellbeing services for people with Usher syndrome. Together as an Usher community we can make our needs heard by undertaking such fundamental research and help shape our future!

Thanks in advance.

Gavin Dean

The Limping Chicken is the UK’s deaf blogs and news website, and is the world’s most popular deaf blog.