A process and impact evaluation of the Thalidomide Health Grant

Background: Thalidomide survivors are ageing differently to their peers in the general population.

In the UK and internationally, there is a growing body of medical research about the health issues thalidomide survivors are experiencing as they age.

However, published research into their health and wellbeing (HWB) and care needs is less extensive and could valuably be updated to reflect the changes thalidomide survivors have experienced over the past decade. A better understanding of their needs will ensure these continue to be met by the Thalidomide Health Grant.

Aims and objectives: This evaluation will provide an up-to-date picture of the changing HWB support needs of thalidomide survivors.

It will explore how, as they age, thalidomide survivors are using their Health Grants to address current needs and plan for the future.

It will also examine the relationships between original impairment and current disability, experiences over the life course, and comorbidities associated with ageing, as these may have implications for the level and distribution of the Grant. Research Questions: How are the HWB needs of thalidomide survivors evolving with age?

To what extent does the Grant currently meet the needs of people affected by thalidomide? Is funding distributed in a way that best takes account of individual needs, and what are the alternatives?

Methods: Over 30-months from September 2024 a process and impact evaluation of the Grant will be conducted, consisting of: (1) Inception – set up structures for research conduct and governance, and communication with key stakeholder groups. (2) WP1 - preliminary scoping work including interviews with Thalidomide Trust staff, to define the scope of the evaluation and determine practicalities. (3) WP2 – international review of the literature to identify gaps to be filled by primary data collection and support WP3-WP5. (4) WP3 - distribution of a HWB survey to beneficiaries, building upon existing data collection by the Thalidomide Trust, and analysing the cohort cross-sectionally and longitudinally. (5) WP4 - conduct and analysis of biographical narrative interviews and focus groups with beneficiaries, enabling the location of the value of the Grant within participants broader biographical and lived experience.

Interviews with other stakeholders (including experts in models of - and ethics underpinning - the distribution of funds). (6) WP5 – analysis and integration of quantitative and qualitative data using the Pillar Integration Process (PIP) to assess if/how the Grant may benefit from adjustments.

Anticipated impact and dissemination: findings will be of value to the DHSC and thalidomide survivors in the UK by ensuring decision making is grounded in sensitively and objectively collected evidence; and other groups living with lifelong disabilities, through the generation of knowledge and understanding about ageing with a disability and associated needs for support.

Outputs will be created and disseminated, tailored to stakeholder groups and will include policy briefs, infographics and a series of presentations.