Financial insecurity at end of life for people on work related visas

Terminal illness poses substantial financial risks to individuals and families. For people in the UK on work-dependent visas, the impact of changed work practices due to illness (changed/reduced hours, or terminating work) is extraordinarily disproportionate. This creates a dilemma of working while unwell, potentially violating visa requirements, or moving country/deportation.

The group we focus on in this proposal is deeply hidden behind multiple layers of inequity and superficial privileges: right to health care, and social/cultural capital in accessing health care, racialised and classed experiences of receiving health care, and the precarity of life and employment on a work visa, while diagnosed with (or supporting a relative with) a life-limiting illness.

Aims: The study therefore aims to understand financial precarity within the nexus of anxiety, legalities, cultural differences in confidence/ trust in authorities, language issues, isolation, and social and cultural capital. We will understand if/how people develop strategies to manage the financial precarity, e.g. undocumented work, relatives taking on more work (despite caregiving roles), or additional (local/global) family members contributing to household income.

Methods: This is an embedded multiple methods design with patient and public involvement and engagement (PPIE) woven throughout. Two work packages (WP) will be conducted, with each element following national reporting guidelines.

Work Package 1 is desk-based research comprising three elements: (i) systematic review, (ii) policy analysis, (iii) media analysis.

i. The systematic review is an integrative synthesis of studies reporting employment while receiving palliative care, for patients, relatives and unpaid carers, since 2000.

ii. The policy analysis, informed by Bacchi’s approach, is an examination of how people on employment visas (including family) and serious illness/dying are represented in the policy landscape since 2014, capturing the Immigration Act of 2014, and subsequent 2016 Immigration Act and 2015 commencement of the NHS visa surcharge).

iii. The media analysis seeks will adopt a framing analysis approach to examine and report how different framings of illness are presented, represented and naturalised by media outlets 2016, capturing post-Brexit coverage of migration.

Work Package 2 is a primary interview study. We will recruit three groups of participants:

i. n=10 people with lived experience of employment visas and palliative care (patient and/or family).

ii. n=10-20 professional supporters (e.g. citizens’ advice volunteers and health/social care practitioners, immigration lawyers).

iii. n=6-10 policy staff (employees or former employees of the Home Office or local/national governments).

Separate interview schedules will elicit accounts of financial/health/social precarity. Recruitment will draw on our extensive networks within palliative care, immigration professionals, migrant organisations, local and national policy networks, and third sector providers.

Analysis will be thematic and inductive; data interpretation will be intersectional and draw from theories such as feminism and critical race theory.

Impact: Through creative and engaging impact pathways we will inform and change public and policy discourse around financial precarity for people in the UK on employment visas. Extensive networks within palliative care, policy, migrant organisations will be used to share powerful stories of the issues, experiences and solutions. These stories will seek to adjust the discourse around migrants on employment visas and provide policy-makers much needed evidence and insights.

PPIE: we will include lay members in all elements of the project, including preparation ofinformation/consent sheets, recruitment methods, interview questions, data analysis, and dissemination. Four PPIE individuals will be core members of the study team, and provided feedback on proposal drafts including recruitment, ethics, and data-sharing