Quality of ethnicity data within Scottish health records and implications of misclassification for ethnic inequalities in severe COVID-19: a national linked data study.

BACKGROUND: We compared the quality of ethnicity coding within the Public Health Scotland Ethnicity Look-up (PHS-EL) dataset, and other National Health Service datasets, with the 2011 Scottish Census. METHODS: Measures of quality included the level of missingness and misclassification. We examined the impact of misclassification using Cox proportional hazards to compare the risk of severe coronavirus disease (COVID-19) (hospitalization & death) by ethnic group. RESULTS: Misclassification within PHS-EL was higher for all minority ethnic groups [12.5 to 69.1%] compared with the White Scottish majority [5.1%] and highest in the White Gypsy/Traveller group [69.1%]. Missingness in PHS-EL was highest among the White Other British group [39%] and lowest among the Pakistani group [17%]. PHS-EL data often underestimated severe COVID-19 risk compared with Census data. e.g. in the White Gypsy/Traveller group the Hazard Ratio (HR) was 1.68 [95% Confidence Intervals (CI): 1.03, 2.74] compared with the White Scottish majority using Census ethnicity data and 0.73 [95% CI: 0.10, 5.15] using PHS-EL data; and HR was 2.03 [95% CI: 1.20, 3.44] in the Census for the Bangladeshi group versus 1.45 [95% CI: 0.75, 2.78] in PHS-EL. CONCLUSIONS: Poor quality ethnicity coding in health records can bias estimates, thereby threatening monitoring and understanding ethnic inequalities in health.

Marginalisation and distrust in the context of the COVID-19 vaccination programme: experiences of communities in a northern UK city region.

BACKGROUND: There are clear inequalities in COVID - 19 vaccination rates amongst marginalised groups, with lower rates for some minoritised ethnic and religious groups, younger people, those living in more deprived areas, and with lower socio-economic status. Existing research focuses on psychological and socio-economic factors that influence vaccine uptake and does not explore broader social and historical contexts. Understanding inequalities in COVID-19 vaccine uptake requires a critical examination of the drivers of, and barriers to, vaccination. METHODS: We present findings from a co-designed qualitative research study undertaken during the COVID-19 pandemic. Focus groups and interviews were used to examine the context underpinning responses to the COVID-19 vaccination in Greater Manchester, particularly focussing on experiences of marginalisation. Thematic framework analysis was used to analyse the data. RESULTS: We found that the public's responses to the COVID-19 vaccination programme are intertwined with a longstanding history of institutional distrust and disenfranchisement, resulting from experiences of marginalisation and social inequalities. This was exacerbated further by the disproportionate impacts of the COVID-19 pandemic on minoritised ethnic groups, younger people, and those with existing health conditions. CONCLUSIONS: Histories of structural inequalities experienced by minoritised groups invoked feelings of suspicion and scepticism at the motivations of the agencies behind the vaccination rollout. This highlights the need for a contextualised analysis of attitudes to vaccines, considering pre-existing inequalities, which may be especially relevant for conceptualising public responses to the vaccination programme. Finally, our study shows the important ways in which public (dis)trust can impact public health policies. We recommend this should be incorporated into responses to future public health crises.

The impact of social support on university students living with mental illness: a systematic review and narrative synthesis.

BACKGROUND: Limited reviews address the role of social support for university students with mental health issues, despite its proven significance for other vulnerable groups. AIMS: The current review aims to examine the current evidence on the nature and impact of social support for students with self-reported and diagnosed mental health problems, along with the availability and effectiveness of social support interventions. METHODS: Electronic databases (CENTRAL, CINAHL, Embase, HMIC, MEDLINE, PsycINFO, SCOPUS, Web of Science) and grey literature databases (EThOS, SSRN) were systematically searched from inception to March 2024 Articles were eligible for inclusion if they reported on the nature and role of social support for university students with mental health problems. Data from included articles were extracted and narratively synthesised. Quality of included studies was assessed using the Mixed Methods Appraisal Tool. RESULTS: Ten studies, involving 3669 participants, were included. Findings indicated high social support significantly mitigated against suicide, depression, anxiety, and psychological distress. Barriers to support access and both positive and negative impacts on mental health were identified. CONCLUSIONS: Results underscore the need to consider the distinct support requirements of students with mental health problems, who often face insufficient access to high social support. This emphasises the potential for effective interventions in this population.

The protocol for this review was registered with PROSPERO in December 2021 (CRD42022286385). The Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) guidelines were adhered to during the development and reporting of the systematic review (Page et al., 2021).

Stigma, mental illness & ethnicity: Time to centre racism and structural stigma.

This article critically reviews previous research in the field of stigma, mental illness and 'race' and ethnicity, and argues for a shift of focus from individual and community blame, as inferred by mental illness stigma, to a more comprehensive view of how stigma operates against a backdrop of structural and institutional racism. Ethnic minority people have poorer mental health outcomes compared with White majority populations. Dominant narratives of greater mental illness stigma in ethnic minority populations, due to religious, spiritual or traditional beliefs and leading to a lower use of services, have taken centre stage in the explanations for these consequent poorer outcomes. This article argues that this 'fact' has become taken for granted as knowledge without corresponding comparative research evidence. Research in the field has also failed to robustly consider how racism might operate in conjunction with different forms of mental illness stigma (particularly structural stigma) to exacerbate mental illness and influence pathways to mental health treatment. Future research should centre the role of racism and structural stigma in explaining the poorer mental health outcomes for ethnic minority people.

Investigating ethnic inequalities in hearing aid use in England and Wales: a cross-sectional study.

OBJECTIVE: To establish whether ethnic inequalities exist in levels of self-reported hearing difficulty and hearing aid use among middle-aged adults. DESIGN: Cross-sectional data from the UK Biobank resource. STUDY SAMPLE: 164,460 participants aged 40-69 who answered hearing questions at an assessment centre in England or Wales. RESULTS: After taking into account objectively assessed hearing performance and a corresponding correction for bias in non-native English speakers, as well as a range of correlates including demographic, socioeconomic, and health factors, there were lower levels of hearing aid use for people from Black African (OR 0.36, 95% CI 0.17-0.77), Black Caribbean (OR 0.38, 95% CI 0.22-0.65) and Indian (OR 0.60, 95% CI 0.41-0.86) ethnic groups, compared to the White British or Irish group. Men from most ethnic minority groups and women from Black African, Black Caribbean and Indian groups were less likely to report hearing difficulty than their White British or Irish counterparts. CONCLUSIONS: For equivalent levels of hearing loss, the use of hearing aids is lower among ethnic minority groups. Inequalities are partly due to lower levels of self-reported hearing difficulty among minority groups. However, even when self-reported hearing difficulty is considered, hearing aid use remains lower among many ethnic minority groups.

The practice of participatory action research: Complicity, power and prestige in dialogue with the 'racialised mad'.

Mental health service users in the UK have become increasingly involved in research over the last 2 decades partly as a consequence of research governance. Ethnic minority service users, however, point to power imbalances stemming from marginalisation and discrimination creating barriers to knowledge co-production (Kalathil, J. (2013). Hard to reach? Racialised groups and mental health service user involvement.). Heavily influenced by Freire's liberatory education, participatory action research (PAR) repoliticises participation where those most affected by injustice are central in both producing knowledge about injustice and implementing solutions. Ethnic minority people with lived experience of 'severe mental illness' ('the racialised mad') were appointed as coresearchers to work with academic researchers on a qualitative study exploring ethnic inequalities in 'severe mental illness'. Drawing on Foucault's notion of power as relational, we focus on three key aspects of productive power: (1) relational engagement and reciprocity, (2) positioning coresearchers as authentic researchers and (3) adopting an ethic of care, to explore complicity and resistance in reproducing hierarchies of knowledge and power when attempting to create and sustain a PAR process for collective analysis, action and solidarity. We utilise retrospective and recorded reflections over the course of the project. Finally, we discuss the ethical and methodological implications for contemporary sociological research into health and illness.

Socioeconomic inequalities in suicide in Europe: the widening gap.

BACKGROUND: Suicide has been decreasing over the past decade. However, we do not know whether socioeconomic inequality in suicide has been decreasing as well.AimsWe assessed recent trends in socioeconomic inequalities in suicide in 15 European populations. METHOD: The DEMETRIQ study collected and harmonised register-based data on suicide mortality follow-up of population censuses, from 1991 and 2001, in European populations aged 35-79. Absolute and relative inequalities of suicide according to education were computed on more than 300 million person-years. RESULTS: In the 1990s, people in the lowest educational group had 1.82 times more suicides than those in the highest group. In the 2000s, this ratio increased to 2.12. Among men, absolute and relative inequalities were substantial in both periods and generally did not decrease over time, whereas among women inequalities were absent in the first period and emerged in the second. CONCLUSIONS: The World Health Organization (WHO) plan for 'Fair opportunity of mental wellbeing' is not likely to be met.Declaration of interestNone.

Ethnic differences in women's use of mental health services: do social networks play a role? Findings from a national survey.

OBJECTIVES: The reasons for ethnic differences in women's mental health service use in England remain unclear. The aims of this study were to ascertain: ethnic differences in women's usage of mental health services, if social networks are independently associated with service use, and if the association between women's social networks and service use varies between ethnic groups. DESIGN: Logistic regression modelling of nationally representative data from the Ethnic Minority Psychiatric Illness Rates in the Community (EMPIRIC) survey conducted in England. The analytic sample (2260 women, aged 16-74 years) was drawn from the representative subsample of 2340 women in EMPIRIC for whom data on mental health services, and social networks were available. RESULTS: Pakistani and Bangladeshi women were less likely than White women to have used mental health services (Pakistani OR = 0.23, CI = 0.08-0.65, p = .005; Bangladeshi OR = 0.25, CI = 0.07-0.86, p = .027). Frequent contact with relatives reduced mental health service use (OR = 0.45, CI = 0.23-0.89, p = .023). An increase in perceived inadequate support in women's close networks was associated with increased odds of using mental health services (OR = 1.91, CI = 1.11-3.27, p = .019). The influence of social networks on mental health service use did not differ between ethnic groups. CONCLUSIONS: The differential treatment of women from Pakistani and Bangladeshi ethnic groups in primary care settings could be a possible reason for the observed differences in mental health service use.

The prevalence of common mental disorders across 18 ethnic groups in Britain during the COVID-19 pandemic: Evidence for Equality National Survey (EVENS).

BACKGROUND: The COVID-19 pandemic negatively impacted mental health in the general population in Britain. Ethnic minority people suffered disproportionately, in terms of health and economic outcomes, which may contribute to poorer mental health. We compare the prevalence of depression and anxiety across 18 ethnic groups in Britain during the COVID-19 pandemic. METHODS: Secondary analysis of cross-sectional data (February-November 2021) from 12,161 participants aged 18-60 years old (N with data on outcomes = 11,540 for depression & 11,825 for anxiety), obtained from the Evidence for Equality National Survey (EVENS). Data were weighted to account for selection bias and coverage bias. Weighted regression models examined ethnic differences in depression (Centre for Epidemiologic Studies Depression Scale) and anxiety (Generalised Anxiety Disorder-7). Effect modification analyses explored whether ethnic differences in outcomes were consistent within age and sex sub-groups. RESULTS: Compared to White British people, greater odds of anxiety caseness (and greater anxiety symptoms) were observed for Arab (OR = 2.57; 95 % CI = 1.35-4.91), Mixed White and Black Caribbean (1.57; 1.07-2.30), any other Black (2.22, 1.28-3.87) and any other Mixed (1.58; 1.08-2.31) ethnic groups. Lower odds of depression caseness (and lower depressive symptoms) were identified for Chinese (0.63; 0.46-0.85), Black African (0.60; 0.46-0.79), and any other Asian (0.55; 0.42-0.72) ethnic groups. LIMITATIONS: Cross-sectional data limits the opportunity to identify changes in ethnic inequalities in mental health over time. CONCLUSIONS: We have identified certain ethnic groups who may require more targeted mental health support to ensure equitable recovery post-pandemic. Despite finding lower levels of depression for some ethnic groups, approximately one third of people within each ethnic group met criteria for depression.

Ethnic inequalities in COVID-19 infection, hospitalisation, intensive care admission, and death: a global systematic review and meta-analysis of over 200 million study participants.

Background: COVID-19 has exacerbated existing ethnic inequalities in health. Little is known about whether inequalities in severe disease and deaths, observed globally among minoritised ethnic groups, relates to greater infection risk, poorer prognosis, or both. We analysed global data on COVID-19 clinical outcomes examining inequalities between people from minoritised ethnic groups compared to the ethnic majority group. Methods: Databases (MEDLINE, EMBASE, EMCARE, CINAHL, Cochrane Library) were searched from 1st December 2019 to 3rd October 2022, for studies reporting original clinical data for COVID-19 outcomes disaggregated by ethnicity: infection, hospitalisation, intensive care unit (ICU) admission, and mortality. We assessed inequalities in incidence and prognosis using random-effects meta-analyses, with Grading of Recommendations Assessment, Development, and Evaluation (GRADE) use to assess certainty of findings. Meta-regressions explored the impact of region and time-frame (vaccine roll-out) on heterogeneity. PROSPERO: CRD42021284981. Findings: 77 studies comprising over 200,000,000 participants were included. Compared with White majority populations, we observed an increased risk of testing positive for infection for people from Black (adjusted Risk Ratio [aRR]:1.78, 95% CI:1.59-1.99, I2 = 99.1), South Asian (aRR:3.00, 95% CI:1.59-5.66, I2 = 99.1), Mixed (aRR:1.64, 95% CI:1.02-1.67, I2 = 93.2) and Other ethnic groups (aRR:1.36, 95% CI:1.01-1.82, I2 = 85.6). Black, Hispanic, and South Asian people were more likely to be seropositive. Among population-based studies, Black and Hispanic ethnic groups and Indigenous peoples had an increased risk of hospitalisation; Black, Hispanic, South Asian, East Asian and Mixed ethnic groups and Indigenous peoples had an increased risk of ICU admission. Mortality risk was increased for Hispanic, Mixed, and Indigenous groups. Smaller differences were seen for prognosis following infection. Following hospitalisation, South Asian, East Asian, Black and Mixed ethnic groups had an increased risk of ICU admission, and mortality risk was greater in Mixed ethnic groups. Certainty of evidence ranged from very low to moderate. Interpretation: Our study suggests that systematic ethnic inequalities in COVID-19 health outcomes exist, with large differences in exposure risk and some differences in prognosis following hospitalisation. Response and recovery interventions must focus on tackling drivers of ethnic inequalities which increase exposure risk and vulnerabilities to severe disease, including structural racism and racial discrimination. Funding: ESRC:ES/W000849/1.

Pathways to ethnic inequalities in COVID-19 health outcomes in the United Kingdom: A systematic map.

BACKGROUND: Marked ethnic inequalities in COVID-19 infection and its consequences have been documented. The aim of this paper is to identify the range and nature of evidence on potential pathways which lead to ethnic inequalities in COVID-19 related health outcomes in the United Kingdom (UK). METHODS: We searched six bibliographic and five grey literature databases from 1st December 2019 to 23rd February 2022 for research on pathways to ethnic inequalities in COVID-19 health outcomes in the UK. Meta-data were extracted and coded, using a framework informed by a logic model. Open Science Framework Registration: DOI 10.17605/OSF.IO/HZRB7. RESULTS: The search returned 10,728 records after excluding duplicates, with 123 included (83% peer-reviewed). Mortality was the most common outcome investigated (N = 79), followed by infection (N = 52). The majority of studies were quantitative (N = 93, 75%), with four qualitative studies (3%), seven academic narrative reviews (6%), nine third sector reports (7%) and five government reports (4%), and four systematic reviews or meta-analyses (3%). There were 78 studies which examined comorbidities as a pathway to mortality, infection, and severe disease. Socioeconomic inequalities (N = 67) were also commonly investigated, with considerable research into neighbourhood infrastructure (N = 38) and occupational risk (N = 28). Few studies examined barriers to healthcare (N = 6) and consequences of infection control measures (N = 10). Only 11% of eligible studies theorised racism to be a driver of inequalities and 10% (typically government/third sector reports and qualitative studies) explored this as a pathway. CONCLUSION: This systematic map identified knowledge clusters that may be amenable to subsequent systematic reviews, and critical gaps in the evidence-base requiring additional primary research. Most studies do not incorporate or conceptualise racism as the fundamental cause of ethnic inequalities and therefore the contribution to literature and policy is limited.

The enduring effects of racism on health: Understanding direct and indirect effects over time.

Experiences of racism and racial discrimination are associated with poorer mental and physical health outcomes for people from minoritised ethnic groups. One mechanism by which racism leads to poor health is through reduced socio-economic resources, but the evidence documenting the direct and indirect effects of racism on health via socio-economic inequality over time is under-developed. The central aims of this paper are to better understand how racism affects health over time, by age, and via the key mechanism of socio-economic inequality. This paper analyses large-scale, nationally representative data from the UK Household Longitudinal Study (Understanding Society) 2009-2019. Findings from longitudinal structural equation models clearly indicate the enduring effects of racism on health, which operate over time both directly and indirectly through lower income and poorer prior health. Repeated exposure to racism severely and negatively impacts the health of people from minoritised ethnic groups. These findings make an important contribution to the existing evidence base, demonstrating the enduring effects of racism on health over time and across age groups.

Racism as the fundamental cause of ethnic inequities in COVID-19 vaccine hesitancy: A theoretical framework and empirical exploration using the UK Household Longitudinal Study.

Ethnic inequities in COVID-19 vaccine hesitancy have been reported in the United Kingdom (UK), and elsewhere. Explanations have mainly focused on differences in the level of concern about side effects, and in lack of trust in the development and efficacy of vaccines. Here we propose that racism is the fundamental cause of ethnic inequities in vaccine hesitancy. We introduce a theoretical framework detailing the mechanisms by which racism at the structural, institutional, and interpersonal level leads to higher vaccine hesitancy among minoritised ethnic groups. We then use data from Wave 6 of the UK Household Longitudinal Study COVID-19 Survey (November to December 2020) to empirically examine these pathways, operationalised into institutional, community, and individual-level factors. We use the Karlson-Holm-Breen method to formally compare the relationship between ethnicity and vaccine hesitancy once age and gender, sociodemographic variables, and institutional, community, and individual-level factors are accounted for. Based on the Average Partial Effects we calculate the percentage of ethnic inequities explained by each set of factors. Findings show that institutional-level factors (socioeconomic position, area-level deprivation, overcrowding) explained the largest part (42%) of the inequity in vaccine hesistancy for Pakistani or Bangladeshi people, and community-level factors (ethnic density, community cohesion, political efficacy, racism in the area) were the most important factors for Indian and Black groups, explaining 35% and 15% of the inequity, respectively. Our findings suggest that if policy intervened on institutional and community-level factors - shaped by structural and institutional racism - considerable success in reducing ethnic inequities might be achieved.

Socioeconomic disparities in suicide: Causation or confounding?

BACKGROUND: Despite an overall reduction in suicide, educational disparities in suicide have not decreased over the last decade. The mechanisms behind educational disparities in suicide, however, remain unclear: low educational status may increase the risk of suicide ("causation") or low educational status and suicide may share confounders. This paper assesses whether educational disparities in suicide (EDS) are more likely to be due to causation. METHOD: The DEMETRIQ study collected and harmonized register-based data on mortality follow-up from forty population censuses from twelve European populations. More than 102,000 suicides were registered over 392 million person-years. Three analyses were carried out. First, we applied an instrumental variable approach that exploits changes in the legislation on compulsory educational age to instrument educational status. Second, we analyzed EDS by age under the hypothesis that increasing EDS over the life cycle supports causation. Finally, we compared EDS in men and women under the assumption that greater EDS in women would support causation. FINDINGS: The instrumental variable analysis showed no evidence for causation between higher education and suicide, for men or women. The life-cycle analysis showed that the decrease of educational inequalities in suicide between the baseline 1991 period and the 2001 follow-up period was more pronounced and statistically significant in the first three younger age groups. The gender analysis indicated that EDS were systematic and greater in men than in women: the rate ratio of suicide for men with low level of education (RR = 2.51; 95%CI:2.44-2.58) was higher than the rate ratio in women (RR = 1.32; 95CI%:1.26-1.38). INTERPRETATION: Overall, there was little support for the causation hypothesis, suggesting that the association between education and suicide is confounded. Educational inequalities in suicide should be addressed in early life by early targeting of groups who struggle to complete their education and display higher risk of mental disorder or of mental health vulnerabilities.

Understanding ethnic inequalities in hearing health in the UK: a cross-sectional study of the link between language proficiency and performance on the Digit Triplet Test.

INTRODUCTION: Research using the UK Biobank data has shown ethnic inequalities in hearing health; however, the hearing test used may exhibit a disadvantage for non-native language speakers. OBJECTIVES: To validate the results of the UK Biobank hearing test (Digit Triplet Test, DTT) against self-reported measures of hearing in the dataset and create classifications of hearing health. To observe if language proficiency and migration age have the same effect on hearing health classification as on the DTT in isolation. Our hypothesis is that language proficiency acts differently on the DTT, demonstrating that the DTT is biased for non-native speakers of English. DESIGN: Latent classes representing profiles of hearing health were identified from the available hearing measures. Factors associated with class membership were tested using multinomial logistic regression models. Ethnicity was defined as (1) White, native English-speaking, (2) ethnic minority, arrived in the UK aged <12 or (3) ethnic minority, arrived aged >12. PARTICIPANTS: The UK Biobank participants with valid hearing test results and associated covariates (N=151 268). OUTCOME MEASURES: DTT score, self-reported hearing difficulty, self-reported hearing difficulty in noise and hearing aid use. RESULTS: Three classes of hearing health were found: 'normal', 'generally poor' and 'only subjectively poor'. In a model adjusting for known confounders of hearing loss, a poor or insufficient hearing test result was less likely for those with better language (OR 0.69, 95% CI 0.65 to 0.74) or numerical ability (OR 0.71, 95% CI 0.67 to 0.75) but more likely for those having migrated aged >12 (OR 3.85, 95% CI 3.64 to 4.07). CONCLUSIONS: The DTT showed evidence of bias, having greater dependence on language ability and migration age than other hearing indicators. Designers of future surveys and hearing screening applications may wish to consider the limitations of speech-in-noise tests in evaluating hearing acuity for populations that include non-native speakers.

The Autism Family Experience Questionnaire (AFEQ): An Ecologically-Valid, Parent-Nominated Measure of Family Experience, Quality of Life and Prioritised Outcomes for Early Intervention.

There is a lack of measures that reflect the intervention priorities of parents of children with autism spectrum disorder (ASD) and that assess the impact of interventions on family experience and quality of life. The Autism Family Experience Questionnaire (AFEQ) was developed through focus groups and online consultation with parents, and reflected parental priorities. It was then administered to the parents of children enrolled in the Pre-school Autism Communication Trial and its 6-year follow-up study. The AFEQ showed good convergent validity with well-established measures of child adaptive functioning, parental mental health and parental wellbeing. It was sensitive to change in response to a parent-mediated intervention for young children with autism, showing treatment effect at treatment endpoint which increased at six-year follow-up.

Pakistani women's use of mental health services and the role of social networks: a systematic review of quantitative and qualitative research.

Pakistani women in the UK are an at-risk group with high levels of mental health problems, but low levels of mental health service use. However, the rates of service use for Pakistani women are unclear, partly because research with South Asian women has been incorrectly generalised to Pakistani women. Further, this research has been largely undertaken within an individualistic paradigm, with little consideration of patients' social networks, and how these may drive decisions to seek help. This systematic review aimed to clarify usage rates, and describe the nature of Pakistani women's social networks and how they may influence mental health service use. Ten journal databases (ASSIA, CINAHL Plus, EMBASE, HMIC, IBSS, MEDLINE, PsycINFO, Social Sciences Abstracts, Social Science Citation Index and Sociological Abstracts) and six sources of grey literature were searched for studies published between 1960 and the end of March 2014. Twenty-one studies met inclusion criteria. Ten studies (quantitative) reported on inpatient or outpatient service use between ethnic groups. Seven studies (four quantitative, three qualitative) investigated the nature of social networks, and four studies (qualitative) commented on how social networks were involved in accessing mental health services. Pakistani women were less likely than white (British) women to use most specialist mental health services. No difference was found between Pakistani and white women for the consultation of general practitioners for mental health problems. Pakistani women's networks displayed high levels of stigmatising attitudes towards mental health problems and mental health services, which acted as a deterrent to seeking help. No studies were found which compared stigma in networks between Pakistani women and women of other ethnic groups. Pakistani women are at a considerable disadvantage in gaining access to and using statutory mental health services, compared with white women; this, in part, is due to negative attitudes to mental health problems evident in social support networks.

Social status and living with a chronic illness: an exploration of assessment and meaning attributed to work and employment.

BACKGROUND: Traditional measures of social status are predicated on position in the labour market. There has been less attention directed to the meanings of social position for people with a long-term condition whose relationship to employment is precarious. Previous research has demonstrated that the MacArthur scale is capable of capturing contextualised aspects of social status, which makes it a useful tool for exploring changes in meaning. AIMS: The paper explores the meanings and experiences of social status of people living with a long-term condition with particular reference to employment status. METHODS: A sample of 300 participants was drawn from diabetes and chronic heart disease registers of General Practices in North West England. A cross-sectional survey with nested qualitative interviews was used in collecting and analysing the data. FINDINGS: Having financial independence and participating in valued activities are more important for people with chronic illness than power and status mediated through the labour market. Income and the lack and loss of employment were given a central role in respondents' narratives reflecting the absence of acceptable alternative routes through which social status for those with a long-term condition can realistically be rebuilt outside of participation in the labour market. CONCLUSION: Social participation, where people with chronic illness feel valued and of tangible utility to other people, might offer some opportunities for rebuilding social status outside the labour market. Chronic illness management interventions need to focus on improving people's engagement with such activities.