Pandemic-relevant experiences of living with diagnosed and undiagnosed chronic conditions or disabilities (considering the full range) with a particular focus on racialised/minoritised ethnic groups. Not Applicable
Conditions
Interventions
We aim to survey 4,000 community-dwelling people in the UK from racialised groups and for contrast 1000 white British, 3 times over 15 months. We will compare their health, social networks (who they h
a transformative community migrant-majority research-active group will be our main London co- researcher.
After each of surveys 2 and 3, interviewees will be invited to research workshops to discuss f
Sponsors
University College London
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: Survey 1. Community dwelling adults living in the UK 2. Aged 18 years or above 3. We have two versions of the survey, one for adults living with chronic conditions/disability or their carer, and one for any other adult Main interview/research workshops inclusion criteria 1. White British comparators or people of Arab, C/E European, S Asian or sub-Saharan African ancestry, aged 18+ (undocumented, on temporary visas, indefinite leave to remain, British citizenship). Comprising people born outside the UK or whose parents were status in the UK as skilled migration, humanitarian or family streams, the ‘irregular’ or undocumented, on temporary visas, with indefinite leave to remain, or with British citizenship. 2. Any condition/disability, including self-diagnosis, that chronically affects daily activities. We have not defined chronicity using standard definitions, to avoid excluding studies and people that do not fit their tight criteria but who/which may be relevant but in general we mean by this that the condition has lasted for at least 12 weeks and has no defined end-point. Eligibility criteria for key informant interviews • Inclusion and exclusion criteria will be determined by our advisory and Co-create workshop members as a result of earlier analyses. Eligibility criteria for Co-create workshops • We will seek representation from a cross-section of relevant lay and professional stakeholders; the inclusion criterion will be that participants should be stakeholders in the health and social care of people with any condition/disability from racialised groups. Eligibility criteria for interventions • We will try out adaptations of two existing training programmes run by study collaborators, one for community members and one for practitioners, at key sites across the UK for proof-of- concept. We may also evaluate other small interventions that involve expansion or adaptation of existing provision. Inclusion and exclusion criteria will be determined by our advisory and co- create workshop members as a result of earlier analyses.
Exclusion criteria
Exclusion criteria: Main interview/research workshops 1. Student migrants as likely to have structured educational institution support 2. Residents of detention centres/closed facilities linked to national migration policies (e.g. new asylum- seekers/refugees, displaced or trafficked persons), as complex cases with specific considerations.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| 1. Resource access measured using QOCS–ID at 4, 10, and 16 months by online survey 2. Formal/informal care measured using de novo questions and QOCS-ID at 4, 10, and 16 months by online survey 3. Quality of life measured using WHOQOL-BREF-ID at 4, 10, and 16 months by online survey 4. Control of life measured using 'control of life' validated questionnaire at 4, 10, and 16 months by online survey 5. Physical and mental health measured using WHO ADS at 4, 10, and 16 months ; Vulnerability Assessment Framework at 10 and 16 months, Global Mental Health Assessment Tool at 10 and 16 months by online survey 6. Social networks measured using an adapted Close persons questionnaire (for online work) at 4, 10, and 16 months by both online survey and as part of semi-structured interview (using closed questions, open questions, photographs taken by participants to represent their networks (no personal identifying information of anyone), and maps drawn of networks The survey at 4 months also includes demographic data; the same respondents will complete the survey also at 10 and 16 months hence this is only collected at 4 months. | — |
Secondary
| Measure | Time frame |
|---|---|
| 1. Fear of death using the Templer Death Anxiety Scale (1970) at 10 and 16 months by online survey 2. Thematic qualitative data from survey freetext, interviews and workshops: 2.1 Patient experiences of heath and social care and other forms of formal and informal support during the pandemic, and their perspectives on the impacts on their health 2.2 Consideration of the impacts of their identity (e.g. as disabled, as from a specific race, as of low income) on these experiences. 2.3 Consideration of their beliefs (health beliefs, covid beliefs, vaccination beliefs) and how this affect other themes 2.4 Consideration of coping mechanisms and strategies and assets used in relation to their access to and use of resources, services and support as this affects their health and wellbeing. For most secondary outcomes, semi-structured interviews are used to collect data at 3-7 months, with one interview per participant recruited to interview, lasting approximately 40 min- 1 hr. Data will be analysed using framework analysis and KeyWord in Context for rapid dissemination and some themes will be explored in more depth using discourse and narrative analysis. At 10 and 16 months analysis of the interview data will be explored with the same participants in mostly remote (video conference) arts-based workshops (one per participant per time point) to consider changes and gain further understandings of themes. The primary approach is to use vignettes of hypothetical people and discuss these, we will also use other approaches such as collage but the precise arts-based work will be co-designed with our advisory and stakeholder groups. Face to face workshops will be used when participants require or interviews as an alternative. | — |
Countries
England, United Kingdom
Outcome results
None listed