Thursday, September 17, 2009

Emotional support for people losing their sight

Browsing the internet today, I chanced upon an article relating to a research study in the UK. This research study focussed in the need for emotional support and counselling for adults who have lost their sight. The issues highlighted pertaining to the concerns, fears, loss of confidence and difficulty coping with the new life, etc. The research study article extract copy can be read below. 
While reading the article, it dawned upon me that the research described what I went through 21 months ago when I lost my sight. Much to my regret there was no professional counselling services available from the various related support organisations in our country then. It was through my family's sheer strong love and undivided support that contributed and played the vital role in helping me to come to terms with my new life.  My determination and proactive attitude pushed me to make things happen and not waiting for things to happen. Certainly, there is still much to be done to help the new adult blind in our country to cope and adapt to the new life as it lacks professional counselling and support groups. There is a need for more local research studies to understand and to provide the much needed emotional support to those who have recently lost their sight or to those who are about to lose their sight due to various eye ailments, etc. There is also a need for support groups to counsel the caregivers as well as they too need to understand how to care for the loved ones who are blind or becoming blind.
Extracted Article
The need for emotional support for people losing their sight is great but the question of how best to provide it is under researched, underfunded, and remains seriously neglected, says a new study published today.

The study (1), commissioned by sight loss charity Thomas Pocklington Trust and carried out by researchers at the University of Reading, describes the emotional trauma of being diagnosed with sight loss as potentially devastating. Yet, while there is clear evidence of a need for emotional support, there is very little information on how best to provide it. Today, the charity calls for research to evaluate the effectiveness of current services, including counselling and rehabilitation, as well as other available kinds of support.

"Not enough attention has been given to the emotional impact of sight loss," says Dr. Angela McCullagh, Research and Development Director, Thomas Pocklington Trust, "but research shows that panic and distress can lead to
depression. There's a clear need for emotional support and an urgent need for work to establish the best ways to provide it."

Using a systematic review of literature the research team accumulated and updated evidence from previous studies. This was combined with a survey of counselling services for people with sight loss in the UK, as well as interviews with people with sight loss. The team found that adjusting to sight loss was like the stages of bereavement. Participants reported initial feelings of panic and distress, followed by devastation and depression, before finally coming to terms with sight loss. This is because sight loss dramatically changes a person's way of life, cutting short activities that bolster feelings of self-worth and quality of life. Not being able to drive was a major blow, adding to a general loss of independence that was a big factor in the onset of depression.

The survey found that sight loss particularly increased the risk of depression among older people. In particular, adults of working age and above were more likely to suffer
mental health problems and a reduction in their quality of life and social functioning.

However, the study found little published evaluation of how best to deal with this emotional trauma. What did exist were mostly published pilot studies by academic researchers and client satisfaction studies by voluntary organisations. From these and further interviews it was clear that:

- Although the practical and mobility support provided by current services was important, rehabilitation played only a minor role in improving emotional well-being and reducing the risk of depression.

- The very real issue of loneliness among people with sight loss was under researched. Participants reported that having to give up their job, or having acquaintances who couldn't cope with their sight loss often led to the loss of their friends. Emotional help came from family and friends, along with voluntary groups who organised welcome social contact. Counselling and group-based courses were helpful since they provided both information and peer support.

"There is currently no real understanding of the most effective way to deal with the emotional impact of sight loss," says McCullagh. "Properly funded research and a real commitment is essential if local services across the UK are ever to provide the emotional support that could ward off depression in those with sight loss."

1. The study "Emotional Support to People with Sight Loss" was commissioned and funded by Thomas Pocklington Trust. It was conducted by the University of Reading. Based at the Institute of Health Sciences, the principal investigators were Professors Margot A Gosney and Christina R Victor, and the postdoctoral research fellow was Dr Samuel R Nyman. From 11th September the study Findings can be seen at
More challenging times ahead!


Anonymous said...

There are a variety of self-help support groups that have been started by and for persons who were experiencing sight loss. Here in the northwest USA, there's "Vision Northwest" with over 40 groups in the states of Washington and Oregon.

The American Self-Help Group Clearinghouse has a guide to starting those types of groups which was piloted in New Jersey.

Yam TW said...

Appreciate your useful comment. Will certainly explore further into support groups.

Tara said...

Braille Institute of America also offers similar services to those with sight loss.

Anonymous said...

It's very difficult for those, who lose their sight later in life, to learn braille. The issues and problems are much different than those who are born blind, or lose their sight early on.

That's one reason why the loss is so devastating, and why self-help support groups are so very valuable - especially when there's little or no support available from e3xtended family.

Yam TW said...

Yes, I have found learning Braille to be difficult as an adult blind as the touch and feel sense is not so sensitive. Fortunately, I can depend on ICT to assist in my everyday communication needs.

Anonymous said...

Yes my son is 6 years only and has Retinitis Pigmentosa and is going all the way blind but is not there yet. He is learning Braille and learning to walk with a cane right now. He is doing great and learning fast but is always depressed because he doesn't have any friends like him that have a vision problem. There are no schools near us that have only visually impaired children just just VI teachers and other helpers to help him through this. this is a hard thing to go through but it is possible.

Yadira said...

My mother has retitinis pigmentosa and she is almost blind! The doctors said it is going to happened soon. She is really afraid because she has being an independent woman since the age of 17yrs. She is really afraid right now and I don't know how deal with it. Last Sunday it was my first time seeing her with a cane and I felt to hopeless, I wanted to do something for her but there is nothing I can do :( I feel so frustrated and I don't know where to look for help!