Children, ethnicity and long- term illness Paper presented to Childhoods 2005: Oslo, June 2005 Lucinda Platt University of Essex

Background The research presented here is part of a project (joint with colleagues at the University of Sheffield and the London School of Hygiene and Social Action for Health) on long-term illness and poverty and how the relationship between the two -- and the strategies in dealing with them -- vary by ethnic group. This project engages in a complex area that is receiving increasing research and policy attention in relation to such issues as caring, extra costs of disability, the relationship between sickness and work, the role of social security benefits and the interface between work and benefits, and the impact of long-term illness on other household members. However, many gaps still remain, and some current research could benefit from further development and this project hopes to explore a number of the gaps and contribute to evidence base and understanding of patterning of illness across households, specifically contributing to our understanding of how it varies by ethnic group.

Background: the research project (1) Details of the research project: Limiting illness and poverty: breaking the vicious cycle, January 2005-June 2006 Funded by the Joseph Rowntree Foundation Research team Sarah Salway, University of Sheffield (project leader) Punita Chowbey, University of Sheffield Kaveri Harriss, London School of Hygiene and Tropical Medicine Lucinda Platt, University of Essex Elizabeth Bayliss, Social Action for Health

Background: the research project (2) Specific contribution of the project:  Exploring ethnic group differences in rates of illness, coping with illness and in the relationship between illness and various indicators of poverty (including worklessness)  Looking at and within households, considering the whole unit and the interplay between different household members.  Focusing on social relationships and social participation among those with long-term illness and those with caring responsibilities and other members of their households  Looking at use of benefits by those with long-term illnesses  Using the livelihoods approach to examine coping strategies, and how people use their strengths

Framework of the project Approach: Predominantly qualitative project (focused on ethnographic work in the East End of London) supplemented by quantitative exploration of some of the issues (including what is being presented in this paper), but integrated approach. Focusing on four main groups: Ghanaians, Punjabi Pakistanis, Bangladeshis and White English.

What do we know? 1. We know that those who are long-term sick and disabled are more likely to be poor than those not, largely through economic inactivity, but also through lower wages and higher risks of unemployment. 2. We know that there is a relationship between poverty and ill- health that appears to work both ways if examined over time: those who are at the lower end of the social class scale are more likely to get sick, but sickness itself also brings increased poverty. 3. We also know that certain minority ethnic groups are much more likely to be unemployed and economically active than others and rates of long-term illness one of the main causes of economic activity vary enormously between groups.

Ethnicity and health Source: Health Survey for England, 1999, Department of Health, in Focus on Ethnicity: wnloads/theme_social/social_fo cus_in_brief/ethnicity/ethnicity. pdf

Low income and ethnicity Notes:1. Low income household is defined as having less than 60 per cent of the median disposable income. Source: Households Below Average Income, Family Resources Survey, 2000/01, Department for Work and Pensions, in Focus on Ethnicity: ocial/social_focus_in_bri ef/ethnicity/ethnicity.pdf

Economic Activity by ethnic group and sex Source: Annual Local Area Labour Force Survey, 2001/02, Office for National Statistics in Focus on Ethnicity: gov.uk/downloads/th eme_social/social_fo cus_in_brief/ethnicity /ethnicity.pdf

What don’t we know? 1. It is hard to disentangle the causal relationship between long-term illness and economic inactivity, particularly for those at the more deprived end of the class spectrum 2. We don’t know much about whether the relationship between worklessness and ill health varies from ethnic group to ethnic group and the chances of being in particular types of job

What don’t we know? (2) 3. We don’t know much about how much coping strategies for dealing with ill-health and the associated financial strain vary much – and in particular whether they vary between groups 4. We don’t know much about the impact of ill- health on other members of the household and how this varies by ethnic group. This last area is the focus of today’s paper

Today’s paper One of a number of quantitative analyses using different data and exploring social participation, relationship between ethncity, illness and the chances of being employed, also earnings, this paper focuses on what the impact of long-term illness is on children, so far as we can determine it from a large-scale cross-sectional survey of the British population.

Focus It focuses on two main areas: Measurement issues:  should we be looking at households with children or with children by the characteristics of children? Given the differences in fertility across ethnic groups, we might hypothesise that the story of the impact on children will look different either way – but does it?  what are the possible impacts on children (and ethnic group differences). Can think of these in terms of financial (number of earners around), and caring (potential burden of having an long-term ill adult in the household, especially if no other adults available for care.

Policy context Child poverty pledge Changes to incapacity benefit and policy focus on inactivity through ill-health Differential employment rates of ethnic groups and target to reduce the employment gap

Data The household file of the Labour Force Survey, a nationally representative sample survey that is carried out quarterly with a semi- (short) panel structure. About 58, 000 households are covered at each quarter. Questions focus on labour market and other related issues (e.g. education), but there are some general demographic questions as well. The household file, which enables analysis of households rather than individuals, is produced for just the Spring and Autumn quarters each year.

Data cont. This analysis pools (to increase numbers from minority ethnic groups) quarters from (6 data extracts altogether). Due to the semi-panel structure of the survey there is some overlap between households, however, in future statistical analyses the standard errors will be adjusted for these. Acknowledgement: I am grateful to ONS for use of the data and to the UK Data Archive for making them available. Neither ONS or the UK Data Archive, however, bear and responsibility for the analysis or interpretation offered here. Crown copyright material is reproduced with the permission of the Controller of HMSO and the Queen's Printer for Scotland

Data References Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, September - November, 2004 [computer file]. Colchester, Essex: UK Data Archive [distributor], February SN: Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, March - May, 2004 [computer file]. Colchester, Essex: UK Data Archive [distributor], August SN: Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, September - November, 2003 [computer file]. 3rd Edition. Colchester, Essex: UK Data Archive [distributor], June SN: Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, March - May, 2003 [computer file]. 3rd Edition. Colchester, Essex: UK Data Archive [distributor], June SN: Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, September - November, 2002 [computer file]. 2nd Edition. Colchester, Essex: UK Data Archive [distributor], August SN: Office for National Statistics. Socio-Economic Statistics and Analysis Group, Quarterly Labour Force Survey Household Dataset, March - May, 2002 [computer file]. 3rd Edition. Colchester, Essex: UK Data Archive [distributor], August SN: 4575.

Sample numbers by ethnic group Households with children Children in households White British Pakistani Bangladeshi Black African All (including other ethnic groups)

Some definitions Questions on illness: Do you have any health problems or disabilities that you expect will last for more than a year? If yes: Do these health problems or disabilities, when taken singly or together, substantially limit your ability to carry out normal day to day activities? If you are receiving medication or treatment, please consider what the situation would be without the medication or treatment. NB some standard questions (e.g. census) ask about long-standing illness that limits work or daily activity but as this question allows partialling out of the work-limiting element that is not included in the current definition in order to make more sense of analysis of employment patterns of those with long-term illness Ethnic group Focus on this paper on just certain ethnic group, defined according to self-identification in relation to a compound question as used in 2001 census. Household ethnicity is defined on the basis of the household reference person, however the impact of alternative ways of defining household ethnicity will be explored in the next stage. Child For simplicity have only considered children aged 0-15.

Results: rates of long-term illness % with long-standing illness % with longstanding illness that restricts daily activity All households 5236 Households with 1 or more working age adults 4430 Households with 1 or more working age adults and 1 or more children 3523

Ethnic groups and age profiles Notes:Sample size too small for a reliable estimate of the Other Black group aged 65 and over. Source: Annual Local Area Labour force Survey, 2001/02, Office for National Statistics in Focus on Ethnicity: uk/downloads/theme_so cial/social_focus_in_brief /ethnicity/ethnicity.pdf

And by ethnicity All households with longstanding illness Households with children and longstanding illness All households with restrictive illness Households with restrictive illness with children White British Pakistani Bangladeshi Black African

Households with children and illness of working age adults Where any adult has long- term illness Where a working age adult has a long-term illness Where any adult has a restrictive illness Where any working age adult has a restrictive illness White British Pakistani Bangladeshi Black African

Measurement issues: households with children or children in households? Rate by type of hh (restrictive long term illness) Shares of hhs (children in hhs) by hh type Composition of hhs with children with restricted long- term ill Composition of children in households with restricted long-term ill All hhs with children 23%100 (100)%100% (23% hhs w children) 100% (23% of children) Hhs with 1 child 25%44 (24)%47%27% Hhs with 2 children 20%40 (45)%36%40% Hhs with 3 children 23%12 (21)%13%21% Hhs with 4 or more children 27%4 (10)%5%12%

And by ethnic group: white British Rate by type of hh (restrictive long term illness) Shares of hhs (children in hhs) by hh type Composition of hhs with children with restricted long-term ill Composition of children in households with restricted long-term ill All hhs with children Hhs with 1 child 2544 (25)4828 Hhs with 2 children 2041 (47)3642 Hhs with 3 children 2212 (20)1220 Hhs with 4 or more children 263 (8)410

Pakistani Rate by type of hh (restrictive long term illness) Shares of hhs (children in hhs) by hh type Composition of hhs with children with restricted long-term ill Composition of children in households with restricted long-term ill All hhs with children Hhs with 1 child 5030 (13)3616 Hhs with 2 children 3631 (27)2724 Hhs with 3 children 3725 (32)2229 Hhs with 4 or more children 4514 (28)1531

Bangladeshi Rate by type of hh (restrictive long term illness) Shares of hhs (children in hhs) by hh type Composition of hhs with children with restricted long-term ill Composition of children in households with restricted long-term ill All hhs with children Hhs with 1 child 4626 (11)3012 Hhs with 2 children 3932 (26)3125 Hhs with 3 children 3023 (28)1721 Hhs with 4 or more children 4819 (35)2242

Black African Rate by type of hh (restrictive long term illness) Shares of hhs (children in hhs) by hh type Composition of hhs with children with restricted long-term ill Composition of children in households with restricted long-term ill All hhs with children Hhs with 1 child 1838 (18)4119 Hhs with 2 children 1434 (34)2827 Hhs with 3 children 1818 (26)1927 Hhs with 4 or more children 1710 (22)1227

Distributions by family type  Defining family type to take account of economic status and potential caring burden: 1 = one working age adult, not ill and in employment 2 = one working age adult, ill, and in employment 3 = one working age adult, ill, and not in employment 4 = more than one working age adult, no working age illness, and at least one adult in employment 5 = more than one working age adult, at least one ill (unemployed), and all well in employment 6 = more than one working age adult, at least one ill (employed), and all well in employment 7 = more than one working age adult, at least one ill, and at least one well working age adult not in employment 8 = other combinations  Also created for restrictive illness

Overall distributions of hh types for all hhs and hhs with children All hhs (using all long-term ill) Hhs with children (using all long-term ill) All hhs (using restrictive illness) Hhs with children (using restrictive illness)

And by ethnic group: just those hhs with children for restrictive illness Type White British PakistaniBangladeshiBlack African

And also looking at numbers of children in such households Type White British PakistaniBangladeshiBlack African

Conclusions  It is important to take account of who is affected by illness within households in addition to the sick person themselves.  Despite the fact that illness is associated with age and this greater among those above working age, approaching a quarter of children live in a household containing someone with a restrictive long-term illness and over a third live in a household with an adult with a long-standing illness.  Over 40% of Bangladeshi and Pakistani households with children have someone with a restrictive long-term illness, but the rate for Black African households with children is as low as 16%  Overall households with few and households with many children have higher rates of long-term illness. This means that using households or children as the unit of analysis makes little difference to the picture. However, by ethnic group there are some striking differences, as rates interact with prevalence of households of different sizes. Thus 30% of children in white British households with an adult with a restricting long- term illness come from families with 3 or more children but 60% of Pakistani and Bangladeshi children do, and over 50% of Black African children do.  It is worth considering a range of aspects of family type when investigating the impact of long-term illness on other household members. Financial impacts and caring responsibilities may operate differently and different groups may be at different risks of them

Next steps  To look at the role of disability and other benefits in households with long-standing illness and containing children, and examine differences by ethnic group  To consider alternative ways of constructing typologies of household structure to pick up on the intersection of employment and illness in more refined ways (including introducing the gender of the adults concerned)  To utilise further questions on attitudes to work in understanding configurations of households  To look at patterns separating out pre-school and school-age children; and investigate by child’s ethnic group rather than that of the household reference person  To identify clear questions to follow up in the in-depth qualitative phase of the research