Ageing Differently: the health and independence of UK Thalidomide Survivors as they grow older

Background - In the late 1950s/early 1960s Thalidomide was given to thousands of pregnant women across the world to relieve morning sickness. The drug caused severe birth defects including missing/short limbs and sensory impairments, collectively referred to as Thalidomide Embryopathy (TE). However, Thalidomide is not just a historical tragedy, it is a contemporary disability issue. Across the world more than 5000 Thalidomide survivors are still living with TE. Aim and Objectives - We know relatively little about the long-term effects of Thalidomide damage nor about the survivors’ present day experiences. The aim of this study was to address this knowledge gap by exploring the changing nature of health and independence amongst UK Thalidomide survivors as they age. Methods - A mixed methods grounded theory study, comprised of four stages: a scoping literature review; primary content analysis of semi-structured interviews with a sample of 38 Thalidomide survivors; a cross-sectional survey of all UK Thalidomide survivors (to which 375/75% responded); and secondary grounded theory analysis of the semi-structured interviews. Findings - Whilst TE is regarded as a non-progressive condition, it is not static. As they age Thalidomide survivors are experiencing new Thalidomide-related health problems and deterioration in their original impairments alongside the accumulated disabling consequences of a life lived with a rare condition. Shifting impairment was leading to efforts to preserve function and the need to rethink independence, which in turn had implications for mental wellbeing. Discussion - Thalidomide survivors are at a stage in their lives where disability and ageing are beginning to intersect. They are ageing differently to their peers in the general population but there are both differences and similarities to other people with early acquired disabilities. Importantly, what is happening to Thalidomide survivors, needs to be seen in the particular historical, social and economic context of their lives