Social consequences of illness (Chapter 5)

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DOI: 10.1111/j.1468-2397.2007.00518.x Int J Soc Welfare 2007: 16: S105–S126

© 2007 National Board of Health and Welfare Journal compilation © 2007 Blackwell Publishing Ltd and the International Journal of Social Welfare. Published by Blackwell Publishing, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA

Introduction

This chapter describes some of the social consequences of illness� It begins by analysing the effects on adults of working age, and then examines how illness and dis-abilities in children affect the family� Neither the con-sequences of illness in older people nor the situation of disabled persons, however, are dealt with here�

There is considerable support for the claim that ill-ness affects different socioeconomic groups differently (Marmot, 2001; Smith, 2004; Socialstyrelsen, 2005)� Low socioeconomic status, social problems and insol-vency in families and individuals, however, may also be caused by poor health� The causal chains are compli-cated, and much depends on what type of morbidity or disability is studied� Disability and chronic illness at a young age may have serious and lasting consequences, while acute conditions that can be cured fairly quickly may have few social consequences or none at all�

A report from the World Bank argues that the evidence for how ‘health shocks’ – i�e� sudden deteriorations in a family member’s health – affect family finances is more anecdotal than scientific (Wagstaff, 2005)� One of the reasons for this, no doubt, is the lack of comparable data� International work based on questionnaire surveys of low-income and middle-income countries shows that the social consequences of illness are closely linked to the degree of insurance coverage in the population�

Swedish social policy in respect of illness

In high-income countries, too, illness has been shown to have social consequences (Riphahn, 1999)� Welfare societies such as Sweden should be analysed on the ba-sis of their stated policy goals of protecting the population from disadvantage due to illness� Swedish social policy seeks to protect the sick against loss, particularly financial loss� Public funding via taxes covers much of the costs of health and medical care� For those in regular employment, loss of income is covered by the national health insurance scheme� Initially, social insurance focuses on short-term cost coverage, on compensation for loss of income and on rehabilitation programmes aimed at restoring those on sick leave to the labour market� Later, it seeks to compen-sate for negative effects of a more long-term kind on work

capacity and cost of living by means of the pension scheme and long-term benefits that offset increased costs�

However, current research shows that adverse finan-cial consequences of illness persist, e�g� as regards ability to pay, income, and labour force participation (Andrén, 2001; Burström, Whitehead, Lindholm & Diderichsen, 2000; Lindholm, Burström & Diderichsen, 2001, 2002)� The social insurance model currently in place in Sweden is based on full employment� In recent years, growing unemployment among young adults and the growing number of temporary employees has meant that many people do not qualify for regular insurance coverage�1 It is worth discussing, therefore, whether the Swedish model in fact protects all groups in the com-munity in the event of sudden or chronic illness�

Serious and chronic health problems in early life may place the sick and the healthy on different income levels from the outset� Young people with health problems may have difficulty gaining a foothold in the labour market� The aim of Swedish social policy in this area is without doubt to protect people from the consequences of sudden illness� Whether, however, it also sets out to compensate people for life-long income disadvantages due to illness or disability in early life is a moot question�

The analysis in this section focuses primarily on the consequences of illness for persons hospitalised for the first time, or for the first time in years� Thus, the study looks at the consequences for those who were previ-ously healthy or whose illnesses suddenly deteriorated�

Social consequences of illness may also be non-finan-cial in character� These are often more difficult to deal with, and the aims of social policy in this respect are less clear� In the present chapter, we study whether illness leads to separation from husband/wife/cohabitant and/or from children living at home� For obvious reasons, there is no general system of insurance coverage for dealing with problems of this non-financial nature�

1 Large groups of foreign-born inhabitants, for instance, are both outside the labour market and lack health insurance coverage. Among Swedish-born inhabitants, 5 per cent are neither entitled to sickness allowance nor claim sickness and activity compensation. The corresponding figure for for-eign-born persons is much higher; among individuals born in Somalia, e.g., it is 40 per cent and among those born in the Middle East approx. 28 per cent (Försäkringskassan, 2005).

Social consequences of illness (Chapter 5)Magnus Stenbeck, Anders HjernKey words: social consequence, illness, welfare state, poverty, social assistance, separation, disease groups, hospitalisation, disabled children, child cancer, CP, Down’s syndrome

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Chapter 5

© 2007 National Board of Health and Welfare Journal compilation © 2007 Blackwell Publishing Ltd and the International Journal of Social Welfare.

Register data – opportunities and limitations

Few studies have had access to sufficient data to enable distinctions to be made between the social effects of different illnesses� The results described in the present chapter show that the social consequences differ radi-cally between disease groups�

The chapter looks at those consequences than can be identified with the aid of register data from public health registers, civil registration systems and social registers focusing on income and family situations� Application of register data means that health problems leading to hospi-talisation or death can be more accurately studied than if sample studies were used� Morbidity can be described in closer detail and its duration can be more easily determined� It also becomes possible to measure socioeconomic outcome in greater detail, including income, education, dependence on public assistance, and family structure over time� Rare situations that cannot be addressed in question-naire surveys can also be analysed, since access to regis-ters enables the researcher to monitor the population as a whole and gather information over many years�

The registers used here have been established for ad-ministrative purposes� This means that there are limits to what issues can be analysed� Also, the distribution be-tween primary care and hospital care has changed over time, which in turn means that the diagnostic categories used in the Hospital Discharge Register vary over time� As the income statistics based on administrative registers are drawn from tax returns, only assessed households are identified, which means that we over-estimate the number of single householders both with and without children� Thus, we cannot achieve total accuracy in measuring the number of new cases of illness in each individual diag-nostic category, the prevalence of hidden income or the proportion of single householders� We comment on these problems in each relevant section below�

The analyses in this chapter use register data gathered from 1987 to 2002 inclusive� Studying how individual health develops in relation to the whole life cycle would have required an even longer period� Without doubt, however, access to 15 years’ detailed information about illnesses, finances and family situations for the total pop-ulation gives us greater opportunities for studying pro-cesses in the medium term than are available elsewhere�

Scope of the study

Social Report 2001 described the differences in dispos-able income and in income growth between people in different diagnostic categories, and also differences in the divorce rate between disease groups� One problem was that when analysing income it was difficult to dis-tinguish between what happened before and after the person was hospitalised� In this chapter we have either

excluded those who experienced the problem in ques-tion before falling ill or we have estimated the degree of difference prior to illness� How we have proceeded in this respect is described in greater detail in the fact sheets that accompany the text�

We have focused on two areas� Firstly, we have examined the prevalence of financial problems in the wake of morbidity using three criteria: 1) change in family-based disposable income; 2) social assistance in the family; and 3) poverty – below 60 per cent of mean income (based on disposable family income)�

One financial aspect that we were unable to exam-ine was how illness affects individual and family living costs� Equating low disposable income with poverty, therefore, might seem hazardous or even wrong� The reasons we use the term here is because a direct connec-tion is often made between income and poverty, e�g� in European statistics� For a more thorough discussion of poverty as a concept, see Chapter 3: Financial poverty�

Secondly, we examine two aspects of the sick per-son’s family situation as it appears in public registers:

1) separation from husband/wife/cohabitant (the risk of becoming single); and 2) separation from children (up to 15 years of age, living at home)�

The results reflect some important aspects of life for the sick� However, this does not necessarily mean that people who have managed to avoid these problems have suffered no harm from their illnesses� We do not, for instance, study factors such as cash margin, general sense of wellbeing, impact on friends and other social networks outside the core family, how social interaction and family interplay are affected, or changes in people’s ability to engage in education or training or in their per-sonal development at work and in their leisure time� To do so would require different avenues of approach, such as longitudinal questionnaire surveys focusing specifi-cally on certain disease groups of particular interest�

The study group

Identifying the sick and the healthy presents special prob-lems� In theory, the terms ‘sick’ and ‘healthy’ are difficult

SeparationSeparation from husband/wife/cohabitant is defined as a change in family type – from cohabitant or spouse at the end of the year prior to hospitalisation to single with or without children at the end of each follow-up year�

Separation from children is defined as a lack of children in the family during the follow-up years after hospitalisation for those members of the family who had children up to 15 years of age living at home in the year prior to hospitalisation�

Follow-ups were carried out one, three and five years after the first year of hospitalisation�

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Social consequences of illness


to define or delimit, and not all sick persons are regis-tered in public health records� Since 1987, record has been kept of all hospitalised persons, and in the present study the sick are represented by persons in this register�

The study population comprises all residents of Sweden who were hospitalised in two selected years, 1992 and 1997, with a principal diagnosis from one of the nine diagnostic categories listed in Table 5:1� The compari-son group is a random selection of some 278,000 persons who were of the same age as the hospitalised group but who did not receive the type of hospital care studied in 1987–2002� We are assuming that the hospitalised in the nine diagnostic categories were sicker on average than those who did not appear in the hospital statistics (the non-hospitalised)� This can be partially verified by means of the analysis of mortality in the two groups presented in the next section� See the fact sheet for a more detailed description of the study group�

The fact that the group has been restricted to persons of working age means that on the basis of this study no statements concerning the consequences of morbidity among children or old-age pensioners are possible� Nor does the study deal with the situation of the disabled,

although some of the diseases under review doubtless caused permanent disability� This section is followed by a section on the consequences of certain illnesses and disabilities among children�

In each analysis section, the study group has been fur-ther restricted in order to minimise the impact of condi-tions that were already present prior to hospitalisation:

1� Poverty� The analysis does not encompass persons whose family-based disposable income was less than 60 per cent of the mean income during the two indi-vidual years preceding hospitalisation�

2� Social assistance. The analysis does not encompass persons with social assistance in the family during the two years preceding hospitalisation�

3� Separation� The analysis encompasses married and cohabiting persons prior to hospitalisation as recorded in the income registers�

4� Children� The analysis encompasses persons who, during the year preceding hospitalisation, had chil-dren living at home (up to the age of 15)�

Description of the study groupThe study group was restricted to all residents of Sweden who were of working age during the study period 1990–2002, i�e� aged 24–67 (year of birth 1936–1965)� Those defined as hospitalised were people who in two selected years, 1992 and 1997, were hospital in-patients with principal diagnoses from one of the nine diagnostic categories shown in Table 5:1� In order to exclude serious morbid-ity that occurred prior to the relevant care episode as far as possible, the study encompasses only people who had not been registered hospital patients during the five-year period immediately preceding the two selected years� This means that people given care in 1992 did not appear in the group recruited from 1997� Within the same diagnostic category, no distinction has been made between one or more care episodes or the number of care days involved� All persons who were hospitalised, to whatever extent, have been compared with those who were not hospitalised (the non-hospitalised)� However, the study has to some extent taken into account whether care was provided for more than one principal diagnosis in different categories (see grouping below) in the same year� Such a situation, though, is very infrequent at these ages (see Table 5:1)� The hospitalised group under review totalled about 65,000 people�

Over two million people were hospitalised in Sweden in 1992 and 1997� The majority were old-age pensioners� Thus, the study group of around 65,000 amounted to only a small fraction of all hospitalised persons�

Versions 9 and 10 of the International Classification of Diseases (ICD) (Socialstyrelsen, 1987, 1997) were used to group the diseases� The hospitalised were categorised according to their principal diagnosis when discharged� This gave us the following disease groups:

• Acute myocardial infarction: ICD-9:410; ICD-10:I21-I22

• Musculoskeletal diseases: ICD-9:710-739; ICD-10:M00-M99

• Mental (and behavioural) disorders due to alcohol: ICD-9:291, 303, 305A; ICD-10:F10

• Diseases due to alcohol: ICD-9:375F, 425F, 535D, 571A-D, 980; ICD-10:G62�1, I42�6, K29�2, K70, T51+X45, T51+X65

• Mental and behavioural disorders: ICD-9: 290, 292-302, 304, 305B-319; ICD-10: F00-F09, F11-F99

• Chronic obstructive pulmonary disease (and bronchiectasis) (COPD): ICD-9: 490-492, 494-496; ICD-10: J40-J44, J47

• Stroke: ICD-9:430-438; ICD-10:I60-I69

• Road injuries: ICD-9:Ekod 1-2:810-829; ICD-10:Ekod1-2:V01-V89

• Cancer: ICD-9:140-208; ICD-10:C00-C97

The comparison group used in the study was a random selection of approximately 278,000 people from the population born in 1936–1965 who were domiciled in the country and who had not received hospital care for any of the specified disease groups dur-ing the period 1987–2002� People in this group may, however, have been hospitalised with other diagnoses� They may also have received primary care or out-patient care�

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In analysing disposable income, a delimitation of this type was not possible� Instead we have described the various groups’ income status in the year prior to hospitalisation in comparison with that of the non-hospitalised�

Among people of working age, hospital care was dominated by musculoskeletal diseases (40 per cent for both sexes) and mental disorders, which accounted for 28 per cent of the men’s and 26 per cent of the women’s care (Table 5:1)� The rarest disease group was mental dis-orders due to alcohol – just over 400 cases� As the results were so specific for this group, the outcome was reliable despite the low numbers involved� Other low-frequency diagnoses such as chronic obstructive pulmonary disease and acute myocardial infarction in women were some-times too infrequent for general conclusions to be drawn about the results with any degree of certainty�

Mortality or social consequences?

It is not surprising that hospitalised people of working age have a significantly higher mortality rate than the non-hospitalised� This has an impact on comparisons of social consequences between the various diagnostic categories� For this reason, the analyses are confined to those persons who survived up to and including each follow-up year under review�

While mortality in the five follow-up years was negligible in the comparison group, it was significant among the hospitalised (Table 5:2)� Figure 5�1 shows

the proportion of deceased persons after five years, by diagnostic category� Mortality was particularly high among persons who had contracted cancer or alcohol-related diseases (25–50)� In both these groups, the social effects of premature death among people in particularly vulnerable social situations were probably under-estimated� Just three years later, some 35 per cent of the male cancer patients and about 18 per cent of all alcohol patients had died�

The mortality rate among people with ‘purely’ physi-cal diseases was higher than that of people with mental diseases� The following section shows that mental illness, on the other hand, had more numerous adverse social consequences� Persons hospitalised with alcohol-related

Table 5:1. Study population: Hospital in-patients in 1992 and 1997 without care during the preceding five-year period, and comparison group of non-recipients of hospital care in 1987–2002. Persons born in 1936–1965.

Men Women All

Number % Number % Number %

Hospital in-patients by diagnostic group

Acute myocardial infarction 2,314 7 439 1 2,753 4

Musculoskeletal disease 13,395 40 12,632 40 26,027 40

Chronic obstructive pulmonary disease (COPD) 323 1 431 1 754 1

Stroke 2,025 6 1,337 4 3,362 5

Road injury 3,720 11 2,425 8 6,145 9

Cancer 2,056 6 5,888 19 7,944 12

Mental/behavioural disorders 5,810 17 6,839 22 12,649 19

Diseases due to alcohol 271 1 147 0.5 418 0,6

Mental disorders due to alcohol 3,858 11 1,302 4 5,160 8

Total number of hospital in-patients in 1992 or 1997 who had not received care for 5 years

33,772 100 31,440 100 65,212 100

Number of patients in more than one diagnostic group 36 25 61

Non-recipients of hospital care 1987–2002* 139,642 137,907 277,549

Total number in study population 173,414 169,347 342,761

* Comparison group.Source: Sociomedical database, EpC/National Board of Health and Welfare.

Table 5:2. Proportion of deceased during the follow-up period of all hos-pital in-patients in 1992 or 1997, and of all non-recipients of hospital care in 1987–2002.

Proportion of deceased (%) year

0–1 2–3 3–4 0–4

Of all in-patients* Men 7 3 3 12

Women 6 3 3 11

Of all non-recipients* Men 0.5 0.4 0.4 1

Women 0.2 0.2 0.2 0.5

* For numbers, see Figure 5:1.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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conditions were among those who suffered most in this regard� In a number of diagnostic categories, including acute myocardial infarction among women, the already low number of hospitalised decreased to such an extent that certain unusual social problems became difficult to study due to a lack of appropriate data� Accordingly, both (statistically) significant and non-significant estimates of risks are shown in all figures, and this aspect is com-mented on in the main text where relevant�

The question arises whether certain diseases with a high mortality rate perhaps only appear to have less severe social consequences because the person dies and thus can-not experience social problems� An examination of dispos-able income levels among those who died during the first two years partially confirms this suspicion� There is some support for the assumption that had they survived, those who died would have experienced more extensive social problems than others with the same diagnosis�

The greatest mortality risk was found in the cancer and alcohol categories� A large number of the cancer patients who died in hospital or in the year after hos-pitalisation had slightly lower incomes than those can-cer patients who survived� They also had slightly lower income levels than the comparison group, while the sur-viving cancer patients had slightly higher levels� This is probably because the most lethal forms of cancer, such as tobacco-related cancer, tend to strike at the less

well-off, while types of cancer where a relatively long survival period can be expected (breast and prostate cancer) either do not strike unequally or are found more frequently among the well-off�

Persons hospitalised for alcohol-related diseases who died during the first five years had a substantially lower level of income than the comparison group, as did the survivors� Men in this category had SEK 18,000 lower incomes than the comparison group, while those who survived had about SEK 11,000 lower incomes than those who died� In the case of women, the difference between the deceased and the survivors was even more noticeable� Here, the deceased had approximately SEK 27,000 lower income levels than the comparison group prior to hospitalisation, while the survivors had ap-proximately SEK 10,000 lower incomes� The analysis shows, therefore, that the fact that many of the sick who died appear to have had a more difficult social situation than those who survived is of relevance here, especially in connection with alcohol-related diseases�

Financial consequences of illness – changes in disposable income

Most of the chronically ill are older people� The fore-most instrument of social policy in protecting adult incomes against loss through illness is the old-age pension scheme� Insurance systems protect people of working age against loss of income due to temporary or permanent health problems� A careful analysis of how this system works needs to focus on its various component parts� In analysing permanent disabilities, the amount of income from work and its share of total income should be examined�

An analysis summarising the income-related con-sequences for people of working age is feasible if one studies disposable income among the surviving sick, which is what we do in this section� The income com-parison between survivors refers to the individualised, family-based disposable income of the economically active, which roughly corresponds to income after taxes per person in the family, including benefits and other transfers (see fact sheet)� The analysis focuses on the individual’s share of family income� Thus, finances are viewed as part of the family’s overall income scenario, which means that the direct effects of illness on the in-dividual’s contribution to total income represent only a small part of that which is measured here� Outcome is also affected by the effects on family members’ in-comes and changes in family structure� The question of how illness affects family costs has not been analysed� The comparison group had an average disposable fam-ily income of approximately SEK 104,000 for both women and men when extreme income was excluded� In general, income in the group hospitalised for physical

Non-hospitalised

Cancer

Diseases due to alcohol

Stroke

Myocardial infarction

COPD*

Mental disorder

Road injury

Musculoskeletal disease

0 10 20 30 40 50 60

Men

Women

%

Mental disorderdue to alcohol

Figure 5:1. Proportion of deceased in the original study popula-tion five years after hospital care. Women and men.* Chronic Obstructive Pulmonary Disease.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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diagnoses was slightly higher when the fact that its mem-bers tended to be older than the comparison group was taken into account� Some groups had lower incomes, par-ticularly those whose members had mental or alcohol- related diseases, but also those with chronic obstructive pulmonary disease� The comparison does not become in-teresting, however, until the influence of age and certain other factors are brought into the equation�

The decision to use the individual share of dispos-able family income as a measure of outcome affects the comparison between men and women� Family income, e�g�, is probably influenced most when the person with the higher income, usually the man, becomes ill� By the same token, women’s incomes are often affected more adversely by a separation in the wake of an illness, assuming that both parties keep their jobs and their in-comes� Naturally, to lose both one’s income from work and one’s family is a harsh blow for either sex� This should be borne in mind when interpreting the gender differences in the results�

Income was registered on four separate occasions: the year prior to hospitalisation and one, three and five years after discharge� No adjustment has been made for changes in current prices, which means that income can be expected to increase over time� Nor have we ana-lysed changes in source of income, i�e� a transition from employment to social assistance or some other source� Thus the question of whether illness and greater de-

pendence on social assistance are interconnected has not been examined here� The link between care and social assistance will be discussed later� In the supporting data, persons with extreme incomes have been excluded, i�e� those who at one time or another had negative incomes or a disposable income in excess of SEK 1 million�

Family conditions, e�g� single status or children in the family, educational background, area of residence and the age of care recipients, may partly explain the income disparities that arise in the study� But even after allowance has been made for these factors, differences between the hospitalised and non-hospitalised persist� The multifactorial models used here are described in closer detail in the fact sheet�

The results in Figure 5:2 are relatively unambiguous� On average, hospitalised persons had lower disposable incomes than the non-hospitalised� These income dis-

Measuring incomeAn overall measure of a family’s income is disposable income, i�e� the income that a family has at its disposal (‘wages plus benefits minus tax’) for living costs� To compare the finan-cial situations of different households, we divide disposable income by the number of consumption units in the family� These units reflect both the number of family members and the fact that living costs for older members are higher than those for young children, for instance� Equivalent disposable income is the most frequent measure of income when com-paring the financial status of different families�

An average income, however, often conceals substantial income disparities� One way of illustrating financial vulner-ability, therefore, is to compare the proportions of people with low incomes� International comparisons tend to use 50 or 60 per cent of disposable mean income as low-income margins (poverty lines)� In Sweden, we tend to use the social assistance level to describe how many people are not ex-pected to achieve a reasonable standard of living� The fact that a person claims social assistance in itself indicates the presence of maintenance problems� But social assistance recipiency is not synonymous with poverty – it is provid-ed to help the person concerned avoid poverty� It is a last resort or safety net� Also, to qualify for social assistance, the person must have exhausted all other means of support, e�g� he/she must have withdrawn savings and sold certain assets� See further Chapter 3: Financial poverty�

Multifactorial modelsPoverty, social assistance and family conditions were ana-lysed in logistic regression models, with log odds as the criteria� Log odds is a technical transformation of probabil-ity (p) that enables ordinary methods of linear multivariate regression analysis to be used when analysing probabilities� (See fact sheet on logistic regression in Chapter 2: Employ-ment and the labour market, for a more detailed explanation of how odds and odds quotas should be interpreted)� Dis-posable incomes were analysed as multifactorial ordinary least squares regression models with income in SEK as the outcome criteria�

The analyses began by delimiting the study material to match the questions – see the running text for a closer account of this procedure� Excluded from the material were the posts with previous hospitalisation periods and previous occurrences of the outcome studied (all those with previous social assistance, for instance, were excluded from analyses of social assistance)�

The next step was to assess the links between disease diagnosis and outcome criteria while keeping constant other factors that could affect these links� Men and women were analysed separately� All analyses controlled for:

• the impact of age;

• whether the person lived in a metropolitan area, an urban area or elsewhere in Sweden prior to illness;

• education (long or short cycle) prior to illness;

• whether the person had received hospital care within more than one diagnostic category in the same year�

The analysis of disposable income included an examination of income both before and after hospitalisation� In analysing disposable income, we also controlled for:

• whether the person was living alone or married/cohabit-ing prior to illness;

• whether the person had children living at home (up to the age of 15) prior to illness�

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parities were present before hospitalisation occurred� As a rule, they increased following care, and this pat-tern persisted up to five years after hospitalisation� The analysis does not extend any further than this�

Throughout, there were substantial differences be-tween the various diagnostic categories� It is difficult, therefore, to make any general statements about how extensive the financial consequences of hospitalisa-tion are without knowing from which illness the per-son was suffering� In the case of cancer diseases, no negative differences in income were observed, either before or after hospitalisation� People who were suf-fering from mental and alcohol-related conditions had

distinctly lower incomes than all other categories prior to hospitalisation, and income trends in their case were far more negative than in the case of other groups over the ensuing five years�

There were also differences in the extent to which men’s and women’s illnesses affected family income� Often, but not always, disposable income was affected more adversely when the man became ill� Post-illness changes in family relations, housing situation and edu-cation etc� affect income and may therefore be viewed as indirect paths to change in disposable income in the wake of illness� Hospitalisation may, for instance, be followed by divorce or separation from one’s partner or

COPD* Road injuryMyocardialinfarction

Musculo-skeletaldisease

Mentaldisorder

Diseasesdue to alcohol

Mental dis-order dueto alcohol

StrokeCancer

Previous year 1 year 3 years 5 years

-35,000

-25,000

-15,000

-5,000

5,000

Disposable income SEK

Time after care episode

Men

Figure 5:2. Difference in family-based disposable income per person, between persons hospitalised in 1992 or 1997 and those non- hospitalised in 1987–2002. The calendar year previous to and calendar years 1, 3 and 5 following the care episode year, by type of diagnosis. Women and men born in 1936–1965.Striped pattern: non-significant result. * Chronic Obstructive Pulmonary Disease.Source: Sociomedical database, EpC/National Board of Health and Welfare.

-35,000

-25,000

-15,000

-5,000

5,000

Disposable income SEK



Mentaldisorder



StrokeCancer

Previous year 1 year 3 years 5 yearsWomen


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children, which in itself leads to changes in the income situation� Whether the illness was a direct cause of such changes is not easy to say� Family changes are analysed later in this chapter�

The effects on family income were:

• slightly more substantial for men than women in the case of mental or alcohol-related diseases,

• fairly similar for women and men in the case of can-cer, musculoskeletal diseases and stroke,

• much more substantial for women with acute myo-cardial infarction,

• much more substantial in the case of men with road injuries�

An examination of the direct effects on, e�g�, individual wage income would probably have yielded a different gender pattern� Usually, the differences between the hos-pitalised and the comparison group were already percep-tible prior to hospitalisation, except in the case of acute myocardial infarction, where the women’s family-based income was not strongly (adversely) affected until after discharge� The fact that incomes often differed prior to hospitalisation can be interpreted in two ways:

• partly as evidence that social differences unrelated to illness were the underlying cause and in one sense led to morbidity, which then reinforced the differences,

• partly as evidence that morbidity was already present before the condition became so serious as to warrant hospitalisation and therefore had already had an ad-verse effect on income�

The two explanations may both be true simultaneously� Illness is most likely to have been present prior to hos-pitalisation in the case of conditions that warrant hos-pital care only in their most serious form, i�e� mental disorders and alcohol-related diseases in particular� As noted above, people with such diagnoses were signifi-cantly disadvantaged both before and after hospitalisa-tion� From the outset, their family-based incomes were between SEK 8,000 and 17,000 lower than those of the non-hospitalised� Income levels per person then declined further to between SEK 17,000 and 30,000 below those of the non-hospitalised (Figure 5:2)� Im-pact on income was greater when the man became ill� This pattern suggests that hospitalisation may mark the beginning of a long-term decline that started not when the person entered hospital but long before� Rather than diminishing, the effects became more pronounced be-tween the first and fifth follow-up years�

Thus the differences do not seem to have disappeared over time� Instead, they usually persisted� This was par-ticularly true of women suffering from acute myocar-dial infarction, mental and alcohol-related conditions or stroke� A contributory cause may be that these women

lived alone to a greater extent than the comparison group� Separation will be analysed later in this chapter�

Except in the case of mental disorders and alcohol-related diseases, and also of chronic obstructive pulmo-nary disease (COPD), it seems that although income levels did fall to a greater extent among the hospitalised than among the non-hospitalised, the impact on their disposable income was nevertheless fairly moderate� This was so despite the fact that many patients had re-curring bouts of illness during the five-year follow-up, while the comparison group remained ‘healthy’ in the sense that it received no such hospital care whatsoever�

Risk of poverty and dependence on social assistance

The previous section looked at how average disposable income levels change when a family member becomes ill� This affects distribution policy in general and may serve as a basis for discussion of the financial protection available to broad sections of the population when they are sick�

A further task of Social Report 2006 is to examine the situation of particularly vulnerable or disadvantaged groups� In defining particular disadvantage in the finan-cial sense for the purposes of this chapter, we have cho-sen two indicators:

1� Dependence on social assistance. This measures one of several interesting component parts of income� It is defined here as the presence of social assistance in the family� Neither the size nor duration of benefits, their relative share of the income, nor the presence of other forms of assistance have been considered� For the pur-poses of the analysis, persons who received social as-sistance in one or other of the two years preceding hos-pitalisation have been excluded� The same procedure was observed in the case of the comparison group�

2� Poverty. The poor are defined here as those whose disposable mean income is below 60 per cent of that of the population during the year in question� Mean income is calculated for the population as a whole and not just for the age group being analysed� People whose incomes were below the 60 per cent margin prior to hospitalisation have been excluded from the analysis� A similar selection procedure was observed in the case of the comparison group�

Risk of dependence on social assistance

Social assistance is a public measure for dealing with financial problems� Using this indicator for the express purpose of measuring the prevalence of financial prob-lems may seem like a back-to-front approach� In most analyses, however, it has provided a strong indication of the presence of problems, including poor health (see for instance Chapter 7: Children and young people at risk)�

S11�



In the group under review, we have excluded all whose families received social assistance in one or other of the two years prior to hospitalisation� After discharge, the proportion receiving social assistance varied between 2 and 7�5 per cent and was highest in families with hospi-talised men in the year immediately following discharge� Among the non-hospitalised, the proportion with social assistance in the family varied between 3 and 5 per cent during the same period, but there were no significant dif-ferences between the sexes or over time�

When we took into account differences in age, educa-tion, place of domicile, and whether the person concerned

was cohabiting/married or lived alone prior to hospitalisa-tion, and also for whether there were children still living in the family, hospitalisation emerged as a clear factor� There was often a strong excess risk of social assistance recipiency among the hospitalised, and the risk increased the longer such cases were followed up�

Excess risk of social assistance recipiency in the families of those diagnosed with mental and alcohol-related conditions was extremely high (Figure 5:)� Five years after diagnosis, the odds for men with this type of condition were 17 times higher and for women with the same diagnoses 35 times higher� While the levels

0.1

1

10

100



Mentaldisorder



StrokeCancer

Odds ratio Men 1 year 3 years 5 years


Figure 5:3. Social assistance in the family 1, 2 and 3 calendar years after the care episode year, by type of diagnosis. Hospitalised persons 1992 or 1997 compared with non-hospitalised persons. Individuals in families without social assistance two years prior to the care episode. Women and men born in 1936–1965. Estimated odds ratios based on logistic regression.Striped pattern: non-significant result. * Chronic Obstructive Pulmonary Disease.Source: Sociomedical database, EpC/National Board of Health and Welfare.

0.1

1

10

100



Mentaldisorder



StrokeCancer

Odds ratio Women 1 year 3 years 5 years


S11�

Chapter 5


for the non-hospitalised were between 3 and 5 per cent, between 50 and 67 per cent of the hospitalised in these diagnostic categories were receiving social assistance five years later� There was also a distinctly elevated risk for both sexes suffering from chronic obstructive pul-monary diseases or road injuries� The results were less reliable in the case of the three physical diseases acute myocardial infarction, cancer and stroke, both because estimated risk levels were lower and because there was insufficient data to allow for any firm conclusions� (We were unable to find, for instance, any woman of working

age who suffered an acute myocardial infarction in either 1992 or 1997, survived for five years and then received social assistance, which is due mainly to the infrequency of this disease in these age groups�)

Risk of poverty

The poverty line was based on individualised dispos-able family income for all age groups appearing in the income statistics, i�e� the adult population from the age of 16 upwards, and was set each year at 60 per cent of mean income for that year�

0.1

1

10

Odds ratio Men



Mentaldisorder



StrokeCancer

1 year 3 years 5 years


Figure 5:4. Low** family-based disposable income 1, 3 and 5 calendar years after the care episode year, by type of diagnosis. Hospitalised persons 1992 or 1997 compared with non-hospitalised persons. Women and born in 1936–1965. Estimated odds ratios based on logistic regression.Striped pattern: non-significant result. * Chronic Obstructive Pulmonary Disease. ** Maximum 60% of mean income.Source: Sociomedical database, EpC/National Board of Health and Welfare.

0.1

1

10



Mentaldisorder



StrokeCancer



Odds ratio Women

S11�



The results were not unequivocal� In some cases, in-creased risk was observed, while in others the risk de-clined� The elevated risks we found were all considerably more modest than in the case of social assistance� Nor, in contrast to the latter, did the risk of low incomes increase consistently over time for all diagnostic categories�

The substantial increases in risk were found in the same diagnostic categories, however� Thus persons suf-fering from mental disorders with or without alcohol problems were more at risk than other categories (Fig-ure 5:4)� The odds were between 1�25 and 1�8 higher for hospitalised than for non-hospitalised persons� This may be compared with the odds quotas of between 16 and 37 times recorded for social assistance� In the case of alcohol-related conditions without a mental diagnosis, the data available for women were too limited to allow for any firm conclusions� The non-significant estimates, however, suggest that the women who survived did not experience any increased risk of poverty except for the first year after discharge�

In the case of cancer patients, the reverse tendency was observed� The risk of low income in the family appears to have been less pronounced among the hospitalised than among the non-hospitalised� Similar tendencies were also observed, at least at the beginning of the period, among persons suffering from musculoskeletal diseases, which perhaps was more unexpected� The substantially reduced risk of poverty that appears in Figure 5:4 in the case of women with chronic obstructive pulmonary disease after the first follow-up year was not significant and in fact disappeared after the third year�

Summary of financial consequences

Among people of working age, illnesses that entailed hospitalisation had a negative effect on income in both the short and long terms�

This suggests that for many diagnoses the impact on income was relatively moderate, as long as we confine the analysis to disposable income� The differences vis-à-vis the comparison group, however, increased in the long term (five years), probably due to such factors as continuing illness, but the results here were not totally unequivocal� Substantially increased levels of risk were evident throughout in the case of mental disorders and alcohol-related diseases�

The risk of falling below the poverty line does not increase to any great degree� The risk of requiring social assistance, however, is very substantial� The question then arises why illness affects the likelihood of social assistance recipiency so much more than it affects other criteria� One explanation could be that dependence on social assistance is a result not only of loss of income but also of the fact that this group has cost increases that are covered by the regular insurance system� Seri-

ous alcohol abuse and mental incapacity, e�g�, are much more likely to wreck household finances, which creates a need for social assistance�

Another possibility is that hospitalisation affects the individual’s willingness to apply for social assist-ance, or that a diagnosed illness in the applicant may affect the case officer’s willingness to approve such an application� People who do not abuse alcohol may also find themselves in such a situation� By examining the prevalence of social assistance, then, we are able to bring indirect consequences of illness into the equation to a greater extent�

As when the social assistance variable is applied in other contexts (see Chapter 7: Children and young peo-ple at risk), our analysis suggests that the presence of such assistance in the family strongly indicates severe problems that are not exclusively financial in character� While public assistance is unusual in the comparison group, mentally ill people and alcohol abusers often have to be looked after by the social services and be given social assistance�

Changes in family conditions after illness

Changes in family conditions probably underlie some of the adverse effects on income� These impact directly on disposable income and on the need for social assist-ance� As a rule, the family member with the lowest per-sonal income suffers most from a separation, in finan-cial terms� For women, therefore, the risk of separation is closely linked to reduced financial status�

Separation

Our analysis of separation includes only those per-sons who prior to hospitalisation were classified in the income statistics based on administrative registers as being either cohabitants or spouses� This group is significantly smaller than the actual group of cohabi-tants, since unmarried partners without shared children are classified in the registers as lone householders� The level of underestimation is probably the same for hospi-talised and non-hospitalised�

Risk of separation is expressed in terms of the prob-ability of a person who was cohabiting one year prior to hospitalisation having experienced a change of family status and been registered as a single householder (with or without children in the family) after one, three and five years� The register data do not show whether the separation was caused by the couple moving apart or by the death of one of the partners� Analyses of separation are complicated still further by the fact that a partner to a hospitalised person is at slightly greater risk of death than the partner of a non-hospitalised person� Whether morbidity in a partner is more frequent among those who are sick themselves is not known, but it may be

S11�

Chapter 5


assumed that this risk increases with age� We take this into account by adjusting for age�

Hospitalised persons in all diagnostic categories except acute myocardial infarction and chronic obstructive pul-monary disease were at greater risk of separation after discharge than non-hospitalised� In the case of cancer, this excess risk applied only to men, and then only after the first follow-up year� Otherwise, the risk was greatest in the first year after discharge but was always present at the end of the five-year period as well� In the case of the three somatic diagnoses musculoskeletal disease, stroke

and road injury, we found excess risks of roughly the same magnitude for both women and men�

Excess risk was most pronounced among persons with mental disorders and alcohol-related diseases� Among men with mental disorders, the odds of separation were 7–9 times higher than for the comparison group, while among women it was 5–6 times as high (Figure 5:5)� Ex-cess risk for women with alcohol-related diseases, on the other hand, was higher than that for men�

In contrast to the financial results, the differences in the separation rate were most pronounced during the

0.1

1

10

Odds ratio Men



Mentaldisorder



StrokeCancer



Figure 5:5. Separation from spouse/cohabitant 1, 3 and 5 calendar years after the care episode year among persons who were married/cohabiting in the year prior to the care episode, by type of diagnosis. Hospitalised persons 1992 or 1997 compared with non-hospitalised persons. Women and born in 1936–1965. Estimated odds ratios based on logistic regression.Striped pattern: non-significant result. * Chronic Obstructive Pulmonary Disease.Source: Sociomedical database, EpC/National Board of Health and Welfare.

0.1

1

10

Odds ratio Women



Mentaldisorder



StrokeCancer



S11�



first follow-up year, after which they diminished some-what in most diagnostic categories�

Children in the family

Separation from children living at home is another po-tential consequence of hospitalisation� There may be a number of reasons for this� From a social viewpoint, the interesting question is whether the illness entails being separated from one’s own children� The person concerned may, for instance, lose contact with or move away from the family he/she lived with previously, or

may lose the ability or forfeit the right to look after his/her own children� Here, unfortunately, the register data at our disposal do not distinguish between a person’s own children and the other children in the family� As an estimate, therefore, we use data in the register concern-ing children in the family up to the age of 15� The group studied comprises persons with children in the family during the year prior to hospitalisation� Outcome is measured in terms of the probability of children under 15 still remaining in the hospitalised person’s family one, three and five years after discharge�

0.1

1

10

Odds ratio Men



Mentaldisorder



StrokeCancer



Figure 5:6. Risk of no longer taking care at home children aged 0–15, 1, 3 and 5 calendar years after the care episode year, by type of dia-gnosis. Hospitalised persons 1992 or 1997 compared with non-hospitalised persons. Women and born in 1936–1965. Estimated odds ratios based on logistic regression.Striped pattern: non-significant result. * Chronic Obstructive Pulmonary Disease.Source: Sociomedical database, EpC/National Board of Health and Welfare.

0.1

1

10

Odds ratio Women



Mentaldisorder



StrokeCancer



S11�

Chapter 5


The mean age in the study group was 43 years� The lowest age after five years of follow-up was 32 and the highest 67� Thus, the proportion of people with children living at home tends to diminish over time in the co-hort� The hospitalised are generally older than the non-hospitalised, and their children are therefore likely to be older� For age reasons alone, then, the proportion of children in the hospitalised group may decline some-what more rapidly� We make allowances for this source of error by controlling for age in the adults�

Not surprisingly, the risk of no longer being part of a family with children living at home is higher among hospitalised men, but excess risk was substantial for both sexes (Figure 5:6)� Persons with chronic obstruc-tive pulmonary disease had no significant excess or re-duced risks, and only in one case was there a slightly elevated risk in the cancer category (women after five years)� Nor was there any significant excess risk among women with stroke� The highest levels of excess risk were observed among persons with mental disorders and alcohol-related diseases� In these categories, the odds quotas were about twice as high among men as among women�

Women, on the other hand, were more likely to have lost the children in connection with an acute myocardial infarction� In terms of social consequences, the pattern here is in marked contrast to what we have normally found� The odds quotas are stronger than in the case of mental and alcohol-related hospitalisation, which is both surprising and hard to interpret� The age error noted above may be a possible explanation for this�

The psychosocial consequences to the family of chronic illness and disability in children

In the mid-1900s, it was still unusual for children with a severe illness or disability to grow up with their par-ents� Vastly improved ways of treating potentially lethal diseases in children, along with the realisation that in-stitutional care could almost never compete with care in the home, led to a gradual change in the situation over the latter part of the century� The Medical Board, prede-cessor to the National Board of Health and Welfare, was instrumental in effecting change by focusing atten-tion on the straitened circumstances in which disabled children and adults lived in institutions (Graninger & Loven, 1994)�

Today, children with chronic illnesses or disabilities are seldom cared for outside the home, except during short periods of treatment or respite care� This in turn has meant that only in very exceptional cases do the social services assume parental responsibility for these children� As Figure 5:7 shows, no more than 1–2 per cent of children with cerebral palsy or Down’s syn-drome were cared for outside the home for any length

of time in the 1990s, either under the Social Services Act (SoL 2001:453) or under the Care of Young Persons (Special Provisions) Act (1990:52)�

An important reason for this revolutionary devel-opment is the establishment of new support measures targeting families with disabled or sick children� These consist of social security benefits whereby parents are compensated by the Social Insurance Agency for loss of income and the additional expenditure involved in caring for the child� Also providing support are a core group of people and institutions at municipal and county council level whose task is to participate in or facilitate the child’s care provision in various ways�

Public support to families with a chronically ill or disabled child in the home has not been properly evaluated� One of the reasons for this is that national registers contain no details of disabilities, which means that evaluations have largely been based on small-scale interview studies that may not be representative of all families in this situation� In the present section, we will seek to shed light on this area by drawing on informa-tion from various national databases and registers� The databases used here are the National Board of Health and Welfare’s national health databases (the Hospital Discharge Register, the Cause of Death Register and the Cancer Register), the Social Insurance Agency’s register of benefits under the Assistance Benefit Act (1993:389), and Statistics Sweden’s database of statistics on place of domicile, education and income (LOUISE)�

Two important components in the support provided to children with disabilities and their families are the care allowance and the Act Concerning Support and Service for Persons with Certain Functional Impair-ments (1993:387), LSS�

0

3

6

9

12

15

Per 1,000 children

Children with CP Children withDown's syndrome

All childrenborn in 1987–93

Figure 5:7. Proportion of children born in 1987–93 who spent at least 25 months at an institution or in a foster home in 1987–2001 under the Care of Young Persons (Special Provisions) Act or the Social Services Act.Source: Sociomedical database, EpC/National Board of Health and Welfare.

S11�



The psychosocial situation of families with children suffering from cancer, children with cerebral palsy (CP) and children with Down’s syndrome will be discussed below� These groups can be identified with reasonable accuracy in national databases� Children with cancer represent families requiring a great deal of support over a relatively long but limited period, children with CP represent children with physical disabilities (impaired mobility), and children with Down’s syndrome represent children with significant intellectual disabilities� It should be noted here that the scope of the data sources avail-able to us imposes clear limits on what can be described� We cannot, for instance, reliably describe the extent of children’s disabilities or health problems, or the extra costs to the family that these entail� Nor is it possible to describe the quality or quantity aspects of public support programmes in the shape of institutions or staff, except as benefit decisions under the Assistance Benefit Act�

The analyses presented below seek to ascertain whether the Swedish social insurance system gives families with sick or disabled children adequate compensation for the loss of income that caring for the child entails, or whether the child’s illness/disability places the family in a finan-cially vulnerable position� We also attempt to identify any effects that may develop along the way, such as parental separation, illness or unemployment�

Child cancer

In Sweden, around 200 children per year aged 0–14 develop malignant tumours, known as child cancer� Over the past three decades, the survival rate for many forms of child cancer has increased dramatically� This applies

e�g� to acute lymphatic leukaemia, which is the second most common form of cancer in children� In the case of brain tumours, which are the most common form, mor-tality has remained largely unchanged� Consequently, brain tumours were a major factor in the 15–20 per cent mortality rate among children who developed cancer in the 1990s� During that decade, the risk of developing child cancer differed only marginally between children who grew up in families with differing socioeconomic positions and children with cancer in these families had roughly the same chance of survival (Socialstyrelsen, 2005)�

Thus, it is true to say that the majority of children who develop cancer survive, but often only after a long and dif-ficult period of treatment� Parents participate as best they can in the treatment provided at hospitals and are expected to take responsibility for much of the child’s rehabilita-tion on his/her return home� The child’s illness then has a profound effect on family life for a considerable time� At the end of their treatment, some of the child cancer survi-vors suffer persistent after-effects in the form of hormonal deficiency, learning difficulties etc, but only in exceptional cases are these so extensive that the child needs special support in the management of daily life� Families in which children develop cancer, therefore, are usually dependent on public support for a limited period of illness, treatment and rehabilitation� After that, they no longer receive special financial support from public sources�

When a child becomes ill, one or both of the parents usually becomes sick-listed due to crisis reaction and thus qualify for sickness compensation themselves� Another possibility is that parents apply for temporary parental benefit due to the child’s illness� During the treatment and rehabilitation period, the parents of children with cancer are usually eligible for a care allowance to cover extra costs incurred as a result of the illness, such as medical travel, visits to other areas and loss of income� There has been some dispute as to whether the allowance is large enough to cover extra costs of this kind� It has also been noted that providing care to a sick child may create difficulties for the person concerned in the labour market, especially in the case of those who lack perma-nent employment or are self-employed (Forinder, 2000)�

To address this issue, the situation of the parents of 740 children aged 0–14 who developed cancer in 1991–93 was compared with the situation of other families in Sweden with children in the same age group over the same period who did not have cancer� The compara-tive work was carried out by researchers at the National Board of Health and Welfare’s Centre for Epidemiology, in collaboration with Karolinska Institutet� To study how changes in the national health insurance system of the 1990s affected the situation of these families, their situation was also compared with that of 234 families where children had developed cancer in 1996�

Care allowanceThe care allowance compensates parents for the extra work and special care and supervision required of them as a result of the child’s illness or disability� The allowance is taxable and carries pension entitlement but is not counted as pa-rental income qualifying for sickness benefit� The care al-lowance is divided into quarter shares� In November 2005, a full care allowance was SEK 8,208 per month� There is also a tax-free component, known as an allowance for extra expenses, to be used for such items as medical travel, visits to the doctor and medicines� In the description of the care allowance in this chapter, only the taxable part is analysed�

The Act Concerning Support and Service for Persons with Certain Functional Impairments is a rights-based law that seeks to guarantee people with extensive and lasting dis-abilities a good living standard, whatever assistance they may need in their daily lives, and the chance to influence the support and services provided to them� Besides the support available under this law, people with disabilities are entitled under the Assistance Benefit Act to personal assistance if they require it for at least 20 hours a week�

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Chapter 5


Finances

Parents’ work-related income (including income from health insurance) declined as expected in connection with the child’s period of illness, treatment and reha-bilitation (Figure 5:8)�

This relative loss of income persisted at the same level throughout the five-year period under review� Compensation was provided, however, in the form of other benefits and allowances, primarily the care allowance, which meant that families’ relative dispos-able income per consumption unit was slightly higher than the national average (Figure 5:9)�

In the case of families in rural municipalities, relative disposable income was 12 per cent higher in the year the child became ill than in the previous year, while the dif-ference was marginal for families living in Stockholm, Göteborg and Malmö� This suggests that the costs for dual accommodation in connection with hospital treat-ment and care affected the size of the care allowance to some extent� A comparison between the situation of families with children hospitalised in 1991–93 and that of families with children hospitalised in 1996 shows that work-related incomes were slightly larger in 1996, which may reflect a trend towards shorter hospital stays� As regards disposable income per consumption unit, there were no differences of any note between the two sets of families in 1991–93 and 1996�

To study the more long-term consequences of child illness on families’ psychosocial situations, the situation that prevailed five years after the child became ill was compared with the situation in the year prior to illness� Compared with other families with children and parents of the same age, no significant differences were observed in respect of social assistance, single parental house-

holds, unemployment or hospitalisation due to mental illness� There were, however, differences in terms of the proportion of parents who were dependent for most of their income on a disability pension or on sickness com-pensation (Figure 5:10)� The proportion was particularly high in the case of families in which the child had died of cancer (6�1 per cent for mothers and 4�4 per cent for fathers, compared with 2�4 per and 1�4 per cent, respec-tively, in the comparison group)�

Children with disabilities

Two large groups of disabled children that can be iden-tified from national registers with a reasonable degree of accuracy are children with cerebral palsy and children with

Year of Year 1 Year 2 Year 3 Year 475

80

85

90

95

100

Fathers Mothers%

diagnosis

Figure 5:8. Work-related income among parents of children aged 0–14 who developed cancer in 1991–93 as a percentage of the age-standardised income of other parents of children born in Sweden in 1991–93.Source: Sociomedical database, EpC/National Board of Health and Welfare.

Previous Year of Year 1 Year 2 Year 3 Year 4 Year 5100

105

110

115

% of income in previous year

All familiesFamilies with child cancer

year diagnosis

Figure 5:9. Relative equivalent disposable income, CPI-stand-ardised, among families with children aged 0–14 who developed cancer in 1991–93 compared with the age-standardised income of other parents of children born in Sweden in 1991–93.Source: Sociomedical database, EpC/National Board of Health and Welfare.

Parents whose Parents whose All parents0

2

4

6

8

10

Mothers Fathers% of all parents

children developedcancer and survived

children developedcancer and died

Figure 5:10. Proportion of parents of children aged 0–14 in 1991–93 whose principal income five years later comprised sick-ness benefit/disability pension. Age-standardised figures.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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Down’s syndrome� Below, we examine the situations in 1997, 2000 and 2002 of the parents of 1,303 children with cerebral palsy and 792 children with Down’s syndrome who were born in Sweden in 1987–1993 and who in 2002 were still alive and living in Sweden� In our multivariate regression models, the situations of these parents were compared with those of approximately 500,000 parfents with children born in the same years who did not meet these criteria for either of these two disabilities�

To illustrate more closely the situation of families with children who have significant physical disabili-ties, we also describe the results of a questionnaire survey carried out in 1997 by the National Association for Disabled Children and Adolescents as part of its ’Conditions of Life’ project� This study was based on the responses of some 900 families out of a nationally representative population of 1,500 families registered with child habilitation clinics around the country due to a significant physical disability (Paulsson & Fasth, 1999)� Just over a quarter of the children in these fami-lies had both physical and intellectual disabilities, and many also had medical problems�

Cerebral palsy

In the analyses on which this section is based, the children with cerebral palsy (CP) are drawn from the National Patient Register for the period 1987-2002 re-lating to hospitalisation� Previous studies suggest that this method enables researchers to identify 80 per cent of all children with CP (Thorngren-Jerneck, 2002)� The children identified here probably represent a selection of children with more severe symptoms�

CP symptoms are caused by disturbances in the brain’s ability to control the muscles of the body� The level of disability varies considerably from scarcely perceptible to an inability to control any body mus-cles� CP usually develops as a result of defects, viral infections or some other effect on the central nervous system occurring during the prenatal period or in con-nection with childbirth� The odd case may also develop later in childhood in connection with an infection or an accident� Children with severe CP often have other problems such as impaired hearing and/or vision, in-testinal disorders, respiratory problems or intellectual disabilities that are also associated with brain defects�

The proportion of CP sufferers per birth cohort has gradually declined since the mid-1980s (Himmelmann, Hagberg, Beckung, Hagberg & Uvebrant, 2005) and cur-rently stands at approximately 1�8 per thousand in chil-dren under six years of age� CP is more common among the children of families in rural areas (Figure 5:11) and is slightly more common in families where the parents had short educational cycles compared with families where the parents were university-trained (Hjern & Thorngren-Jerneck, 2006)�

Down’s syndrome

Down’s syndrome is caused by a congenital disorder in the genes that adds an extra copy of chromosome 21 to the two normally present in the body’s cells� This is why the condition is sometimes known as trisomy 21� The additional genetic material almost always leads to some form of developmental delay/intellectual disability, where the degree of impairment varies from slight to very severe� Impaired sight and hearing are other disabilities commonly found in connection with Down’s syndrome� About half of all children with this condition are born with some form of heart defect, while over-sensitivity to infection is another frequent medical problem�

The proportion of children born with Down’s syn-drome in Sweden has remained fairly stable at around one per thousand for several decades� Survival in chil-dren with Down’s has improved dramatically in re-cent decades� In the early 1970s, mean survival was approximately 35 years� Better methods for treating the congenital heart defects found in about 40 per cent of children with this condition have since brought life ex-pectancy up to almost 60 years (Socialstyrelsen, 2005)�

Eighty per cent of families with Down’s children born in 1987–93 had at least three quarters of the full care allowance in 2002, while in the case of CP only 29 per cent had three quarters of the allowance or more and a further 29 per cent had no allowance whatsoever� The lower proportion of CP families with a large allowance may be explained by the fact that more of them received personal assistance for at least 40 hours/week under the Assistance Benefit Act (15 per cent versus 1 per cent)�

Finances

A child with a severe physical disability means that the family incurs extra costs for such things as medicines/nutrients, visits to the health and medical services and care-related travel�

Children with CP Children with Down's syndrome0.0

0.4

0.8

1.2

1.6

2.0

Metropolitan areas

Major cities/towns

Rural/Sparsely populated areas

Per 1,000 children

Figure 5:11. Regional distribution of cerebral palsy (CP) and Down’s syndrome among children born in Sweden in 1987–93. H-region division.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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Chapter 5


Also, there are substantial regional variations in the fees families pay for health and medical care� In a study of household types, the National Board of Health and Welfare compared care fees for certain households with illness and/or disabilities in the family (Socialstyrelsen, 2002)� One of the cases cited was that of an 11-year-old boy with CP damage� He was assumed to require extensive habilitation measures and many technical aids� The fees paid by the family for health and medical care ranged from SEK 500 to over 6,500� But the avail-ability of such aids in the first place varied considerably between county councils� If a county council did not provide any technical aids for leisure-time activities, e�g�, the family had to defray the entire cost itself�

In the Conditions of Life project, almost 40 per cent of the families reported a wide range of additional costs that were not covered by public assistance� These included dearer cars and housing but also higher costs for electricity, clothing, food, telephony, laundry and cleaning, training aids and special toys, training and treatment, wear and tear in the home, holidays and leisure activities, medical care, charges for medicines, specially adapted leisure-time and training facilities, transport services for disabled people, and treatment-related travel (Paulsson & Fasth, 1999)�

When disposable income per consumption unit was analysed in 2002 for all families with children born in the 1987–93 cohorts, the income level in families in which a child had CP was SEK 8,200 per annum higher than the national average (once the analysis had been standardised for the family’s place of domicile and the mother’s age and education)� In the case of families in which a child had Down’s syndrome, the difference was smaller: SEK 2,600 per annum above the average� Factors such as parental education, whether the family lived in a metropolitan or a rural area and whether the parents were foreign-born or Swedish-born, did not affect these differences to any great degree, either for CP or Down’s syndrome�

Social assistance is granted to households lacking the income to cover reasonable expenditure according to a set standard reviewed from year to year� It might be assumed, therefore, that inadequate public support to families with disabled children would be reflected in an increasing proportion of social assistance recipi-ents� There is, however, no sign of this, as Figure 5:12 shows� Rather, social assistance recipiency appears to be more or less independent of these children’s disabili-ties� Nor does the picture change to any great extent if the analysis compensates for social and demographic background factors in a logistic regression model� An analysis of the proportion of families with a disposable income per consumption unit of less than 60 per cent of the mean yields the same result� In 2002, e�g�, 4 per cent of families with a child with CP fell below the low-

income line, compared with 6 per cent in the rest of the population�

In the Conditions of Life project, families were asked if they found it harder to meet day-to-day expenses for food, rent and bills – the same question as is asked in Statistics Sweden’s Survey of Living Conditions (ULF)� Here, a more worrying picture emerges� Over 30 per cent of the families with cohabiting parents in the Conditions of Life project answered this question in the affirmative, compared with 23 per cent of families with children and cohabiting parents in the ULF survey (Paulsson & Fasth, 1999)� The financial situation of families with children may also affect the adults’ spending on essentials, such as dental care� In the ULF survey for 1988-99, parents in families claiming care allowance reported that they had forgone dental care to a greater extent than other families with children� One in four said that they could not afford such care, compared with one in seven among other families�

Work and family

In the Conditions of Life project, 40 per cent of the mothers of children with physical disabilities reported that they worked in the home either full time or part time� Some of these mothers had completely withdrawn from the labour market, with or without a care allow-ance, while others were employed as a personal assist-ant or family carer looking after their own children� Among fathers, work in the home was less widespread – only 8 per cent fell into this category� Most of the par-ents who had chosen to work exclusively in the home did so because in their experience it was impossible to find or keep a job outside the home that could be com-bined with the disabled child’s need of care and atten-tion (Paulsson & Fasth, 1999)� Gainful employment in

0

5

10

15

20

25

30

% of all mothers Children with CP

Children with Down's syndrome

All children born in 1987–93

Year prior tochild's birth

1997 2000 2002

Figure 5:12. Proportion of mothers with at least one child born in Sweden in 1987–93 where the household received social assist-ance at some point during the year.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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or outside the home among parents of disabled children cannot be ascertained from register data� It seems likely, therefore, that the relatively high proportion of parents in gainful employment among families with children with CP (Figure 5:13) would decline significantly were only work outside the home to be included� Clearly, mothers and some of the fathers of children with Down’s syn-drome forgo gainful employment (Figure 5:13)� Since only 2�6 per cent of these families have any kind of per-sonal assistance under the Assistance Benefits Act, the picture that Figure 5:13 gives of work outside the home is probably more accurate�

The care of a disabled child affects family life in many different ways� Ninety per cent of the parents in the Conditions of Life project believed that they had less access than others to a stimulating recreational and cultural life, while 60 per cent felt that the family’s social life had changed either to some degree or to a consider-able degree� It might reasonably be assumed that care of a disabled child imposes a severe strain on couple relationships and that the child’s disability, therefore, sometimes leads to parental separation� This could not be confirmed in the Conditions of Life project, how-ever, which found that the divorce rate in such families was no different from the rate in other families in Sweden (Paulsson & Fasth, 1999)� Nor did the analyses of families with children born in 1987–93 reveal any such tendencies� Households with single mothers were neither more nor less prevalent among families where children had CP or Down’s syndrome (Figure 5:14), and the picture is the same if the 5 per cent who lived with a single father in 2002 are included�

Health

A disability affects not only the child’s health but that of the parents as well� In the Conditions of Life project (Paulsson & Fasth, 1999) and the recently published follow-up study, ‘Time for Bed’ (Stenhammar, 2005), the parents of physi-cally disabled children describe their health problems� Almost 80 per cent of mothers and 60 per cent of fathers describe bodily aches and pains from the strain of heavy lifts� Disturbed sleep due to the child’s irregular sleep-ing habits was reported by more than half of the parents, and muscular tension and headaches were also frequent symptoms� Mental conditions involving exhaustion and depression were other significant health problems that the parents associated with their care of the child�

A register analysis yields a similar pattern� Disabil-ity pensions and hospitalisation due to mental illness or alcohol abuse are more common among both the fathers and mothers of children with CP� In terms of health pa-rameters, however, parents of children with Down’s syndrome are no different from other parents of chil-dren born in the same year (Figures 5:15 and 5:16)�

Specially vulnerable groups

In Sweden, parents with short education cycles, parents in rural areas, parents of non-European origin and single parents have all been identified in previous studies as groups that find it particularly difficult to obtain em-ployment and whose incapacity rate is particularly high (Socialstyrelsen, 2005)� An analysis of these groups’ benefit recipiency when caring for disabled children found no significant differences compared with the rest of the population in terms either of the size of care allowances or of access to assistance benefits under the Assistance Benefits Act� Assistance benefit recipiency

Fathers Mothers0

20

40

60

80

100

% of all parentsChildren with CP



Figure 5:13. Parents of children born in 1987–93 earning some form of income from gainful employment in November 2002.Predicted percentage based on logistic regression and adjusted for the parents’ level of education, age, type of household, region of birth* and type of residential locality**.* Born in Sweden, in another European country or outside Europe.** According to Statistics Sweden’s H-region division.Source: Sociomedical database, EpC/National Board of Health and Welfare.

0

5

10

15

20

25

30

% of all mothersin each group Children with CP



During year ofpregnancy

1997 2000 2002

Figure 5:14. Proportion of mothers of children born 1987–93 who were single parents in each respective year.Source: Swedish Tax Agency (1997, 2000, 2002) and (during pregnancy), Sociomedical database, EpC/National Board of Health and Welfare.

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among families in rural areas, however, tended to be higher than among families in periurban areas� Parents with short education cycles and parents in rural areas tended to have roughly the same employment and health patterns as the rest of the population�

In the case of parents of non-European origin, a different gender pattern was observed as regards disability pensions in 2002 in families with CP children� The link with disability pensions was stronger for mothers of non-European origin than for parents of Swedish or European origin, while the opposite was the case for fathers of non-European origin (p<0�05 in in-teraction analyses in logistic regression analysis)�

Single parents

For obvious reasons, managing the care of a disabled child is a particularly tough challenge for a single parent� The Conditions of Life project identified single mothers of physically disabled children as an especially vulnerable parent group (Paulsson & Fasth, 1999)� These mothers were three times as likely to receive a disability pensions, to be chronically ill or to be unemployed than were co-habiting parents� Register analyses in 2002 of children born in 1987–93 revealed a similar tendency, with single mothers of CP children running a 60 per cent higher risk of disability pension than cohabiting mothers� In the case of single mothers of Down’s children, however, there were no significant differences in terms of health and employment compared with cohabiting parents�

We also find that the average disposable income per consumption unit of CP children in single-parent house-holds in 2002 was SEK 23,000 lower per annum/child than that of CP children in a family with cohabiting

parents� The difference between single parents and co-habiting parents of Down’s children was SEK 9,000�

Concluding discussion

Illness leading to hospitalisation has both financial consequences and consequences for the family� Hospitalised persons often have lower disposable in-comes, separate more often from their partners and children and become more dependent on social assist-ance than persons who are not hospitalised� There are very significant differences between physical diseases, on the one hand, and mental and social diseases, on the other� Hospitalised persons with alcohol-related condi-tions tend to have a high mortality rate, and the social consequences for this group one year after the diagnosis year are often serious� The effects of earlier morbidity that did not necessitate hospitalisation may be a factor in this context, particularly for people in the above group� This is mainly because only a small proportion of mental illnesses lead to hospitalisation�

Among cancer patients, death is frequently the out-come� Changes in income and family situations are less frequent among those who survive a cancer illness� Also, they are less adversely affected in social terms than those hospitalised for mental or alcohol-related diseases�

On the whole, the system of compensation for severe illness works efficiently, but it does not offer full protec-tion, either to the individual patients or to their families� In some groups, social assistance recipiency increased significantly� The social consequences were lasting, or grew more severe over the five-year follow-up period�

Fathers Mothers0

2

4

6

8

10

% of all parents Children with CP



Figure 5:15. Proportion of parents of children born in 1987–93 who received some form of disability pension income in 2002.Predicted percentage based on logistic regression and adjusted for the parents’ level of education, age, type of household, region of birth* and type of residential locality**.* Born in Sweden, in another European country or outside Europe.** According to Statistics Sweden’s H-region division.Source: Sociomedical database, EpC/National Board of Health and Welfare.

Fathers Mothers0

2

4

6

8

10

Children with CP



% of all parents

Figure 5:16. Proportion of parents of children born in 1987–93 who were hospital in-patients with a mental or a substance abuse-related diagnosis in 1997–2002.Predicted percentage based on logistic regression and adjusted for the parents’ level of education, age, type of household, region of birth* and type of residential locality**.* Born in Sweden, in another European country or outside Europe.** According to Statistics Sweden’s H-region division.Source: Sociomedical database, EpC/National Board of Health and Welfare.

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It may reasonably be assumed that morbidity often con-tinued after the period studied here�

Separation from cohabitants and children appears to be a frequent consequence of illness, especially in the case of persons with mental disorders or alcohol-related diseases� The family consequences would appear to affect men particularly severely� There is also an excess risk of women being separated from both their husbands and children, but they are much more likely than men to keep custody of children living at home� If women retain custody of the children to a greater extent than men when couples separate, this may explain the extreme increases in social assistance recipiency in this group�

The analyses on which this chapter is based did not reveal any great changes in the general pattern over the 13-year period under review� For the purposes of this chapter, therefore, we have merged persons hospitalised in 1992 and those hospitalised in 1997� This, however, might benefit from further study� From a social policy viewpoint, it would also be interesting to examine the effects of illness in families where the sick person has died� This perspec-tive has not been dealt with in the present analysis�

The analytical model used in this chapter for the pur-pose of estimating the scale and scope of public benefits to families with sick or disabled children is completely lacking in information about the extra costs involved for these families� It is neither possible nor meaning-ful, therefore, to draw any conclusions as to whether the social insurance system compensates these families adequately or not� Based on the analyses of social assist-ance and the proportion of families with low incomes, however, it may be concluded that there is little likeli-hood of a disability in a child causing families severe financial problems to any great extent� The same applies to families with a child who has a serious illness over a limited period of time or who has a lifelong disability�

Parents – both fathers and mothers – of children with substantial physical disabilities occupy a special position as regards health problems� There is a significant risk here of premature retirement and hospitalisation for mental dis-orders� Such morbidity is probably associated with both repetitive strain injuries and mental strain, including lack of sleep� Families with single parents also appear to be par-ticularly vulnerable if the children have substantial physi-cal disabilities (see also Chapter 7: Children and young people at risk)� Their financial resources are significantly less and their state of health is considerably worse� There is also a clear tendency towards disability pension among parents whose children have died of cancer�

Acknowledgments

The authors would particularly like to thank Karin Paulsson at Jerringfonden for her valuable comments and advice in connection with this chapter�

References

Andrén D (2001). Work, sickness, earnings, and early exits from the labor market. An empirical analysis using Swedish longi-tudinal data. Doctoral dissertation. Economic Studies 107. Department of Economics, Göteborg University.

Burström B, Whitehead M, Lindholm C, Diderichsen F (2000). Inequality in the Social Consequences of Illness: How Well Do People with Long-Term Illness Fare in the British and Swedish Labor Markets? International Journal of Health Services 30(3): 435–451.

Forinder U (2000). I skuggan av cancer – benmärgstransplan-tation hos barn i ett föräldraperspektiv [In the shadow of cancer: bone marrow transplants in children from a parental viewpoint]. Doctoral dissertation. Stockholm, Socialhögskolan, Stockholms universitet.

Försäkringskassan (2005). Socialförsäkringsboken 2005 [Social Insurance in Sweden 2005]. Stockholm.

Graninger G, Loven J (1994). 40 år med utvecklingsstörda. Samtal med Karl Grunewald [Forty years with the intellectually dis-abled: conversations with Karl Grunewald]. Moheda, Fontes.

Himmelmann K, Hagberg G, Beckung E, Hagberg B, Uvebrant P (2005). The changing panorama of cerebral palsy in Sweden. IX. Prevalence and origin in the birth-year period 1995–1998. Acta Paediatrica 94: 287–94.

Hjern A, Thorngren-Jerneck K (2006). Perinatal health mediate socio-economic differences in cerebral palsy in Sweden – a national cohort study. Equity in child health and health care. ESSOP 2006 Annual Meeting, Cardiff.

Lindholm C, Burström B, Diderichsen F (2001). Does chronic ill-ness cause adverse social and economic consequences among Swedes? Scandinavian Journal of Public Health 29: 63–70.

Lindholm C, Burström B, Diderichsen F (2002). Class dif-ferences in the social consequences of illness? Journal of Epidemiology and Community Health 56: 188–92.

Marmot M (2001). Inequalities in health. New England Journal of Medicine 345(2): 134–136.

Paulsson K, Fasth Å (1999). Man måste alltid slåss på byråkra-ternas planhalva [You have to fight the bureaucrats on their own terms]. Livsvillkorsprojektet – en studie av livsvillko-ren för familjer med barn med rörelsehinder [The Conditions of Life project – a study of the situations of families with physically disabled children]. Stockholm, Riksförbundet för Rörelsehindrade Barn och Ungdomar.

Riphahn RT (1999). Income and employment effects of health shocks – A test case for the German welfare state. Journal of Population Economics 12(3): 363–389.

Smith JP (2004). Unravelling the SES health connection. IFS Working Papers W04/02. Institute for Fiscal Studies.

Socialstyrelsen (1987). Klassifikation av sjukdomar (ICD–9) [Classification of diseases (ICD–9)]. Systematisk förteckning [A systematic inventory].

Socialstyrelsen (1997). Klassifikation av sjukdomar och hälso-problem (ICD–10) [Classification of diseases and health problems (ICD–10)]. Systematisk förteckning [A systematic inventory].

Socialstyrelsen (2002). Vad kostar det att vara sjuk eller funktions-hindrad? [What does it cost to be ill or disabled?]. Stockholm.

Socialstyrelsen (2005). Folkhälsorapport 2005 [Health in Sweden – The National Public Health Report 2005]. Stockholm.

Stenhammar A-M (2005). Läggdax – en undersökning om sömn-svårigheter hos barn och ungdomar med rörelsehinder [Time for bed: a study of sleep problems among disabled children and young people]. Stockholm, Riksförbundet för Rörelse-hindrade Barn och Ungdomar.

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Thorngren-Jerneck K (2002). Cerebral Injury in Perinatal As-phyxia, epidemiological, clinical, neurophysiological and neuromatabolic investigations. Doctoral dissertation. Paedi-atrics, Faculty of Medicine, Lund University.

Wagstaff A (2005). The Economic Consequences of Health Shocks. World Bank Policy Research Working Paper WPS3644. World Bank.

Social consequences of illness (Chapter 5)

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