Research about the need for emotional support among people with sight loss Sarah Buchanan Research and Development Manager Thomas Pocklington Trust

Background Knowledge and experience that significant needs exist Parallel experiences of people affected by other long term conditions Identifying research priorities: – A Pocklington workshop (2007) emphasised gaps in knowledge about the nature of need for emotional support and about the effectiveness of different responses

Emotional support for people with sight loss A study by the University of Reading, Reviews of published research A survey of support services provided by NALSVI members Interviews with people with sight loss. Research publications Insight Radio VINCE conference

Research findings: people’s needs Compared to people without sight loss, people with sight loss are likely to have: increased needs for emotional support increased risks of depression and depressive symptoms lower levels of mental health and quality of life experiences of trauma, anxiety, panic and distress, especially at and soon after diagnosis experiences of loneliness.

Research findings: interventions that work? Very little evidence of the effectiveness of different responses to needs Practical and mobility support appear to play a minor role in improving emotional wellbeing or reducing risks of depression and depressive symptoms Emotional support from family and friends appears to be important, but may be felt to be over-protective Social contact and peer support through voluntary groups and courses are valued Counselling and informal group based support are valued

Next steps Continuing services, incl NALSVI members The RNIB Lost and Found campaign: highlighting the emotional impact of sight loss and the need for responses Pocklington research identified the need for systematic evaluations of initiatives that respond to emotional needs RNIB and Pocklington identify the need for audits of NHS referrals and support at the point of diagnosis VINCE conference 1 st October 2009

Contact details Sarah Buchanan Research and Development Manager Thomas Pocklington Trust