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 (2) 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.”
Later this month, RNIB will launch a new campaign to highlight the emotional impact of sight loss and the pressing need for emotional support. Says Angela McCullagh, “Thomas Pocklington Trust welcomes the RNIB campaign and hopes it will trigger action on this important but neglected issue – the obvious need to provide emotional support for those with sight loss.”
Notes
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 pocklington-trust
2. Thomas Pocklington Trust is a charity which aims to improve the quality of life of people with sight loss. It is a leading provider of housing, care and support services for people with sight loss in the UK, and is a major research and development body.
Source
Thomas Pocklington Trust