The family – or lack of one
7.1 Family structure in the late modern world
My mother, who is old enough to recall when the UK National Health Service (NHS) began in 1948, still refers to her general practitioner (GP) as her ‘family doctor’. The start of the NHS marks the time in the history of Britain’s Welfare State when free medical care came to be offered not just to working men (as part of an employer’s insurance package) but to the whole family. This change was a landmark event, producing almost overnight improvements in antena- tal care, developmental surveillance of babies and young children and care of the vulnerable elderly.1Looking after the whole family from ‘cradle to grave’
has been a defining characteristic of British general practice for over 60 years, and it is a feature of which we are justifiably proud.2 Developing countries, and those in transition (e.g. the former Eastern Europe), rightly place high em- phasis on developing a programme of family medicine based in primary care that promotes maternal and child health, family planning and comprehen- sive (if basic) medical care for the retired, out-of-work and uninsured.3Such provision is the least a civilised society can offer its most vulnerable citizens.
Research by epidemiologists and economists has shown that investments in the health of mothers and young children and in the prevention of unwanted preg- nancy are two of the most cost-effective ways of spending a limited healthcare budget.4
All textbooks of general practice rightly emphasise the importance of the family in both the generation of illness (we catch infections from our nearest and dearest, and our relationships with them account for a good deal of our neuroses too) and in the support of the sick person (informal carers within the family help us get better and enable us to cope effectively with disability, disfigurement, loss of function, loss of independence and dying). Box 7.1 shows some examples from my own practice of the impact of the family relationships on the origin and course of illness.
The first example in Box 7.1, Brian, was unlucky to develop a severe form of multiple sclerosis but very fortunate to spend his 25 years of disability cared for by a loving family who readily made compromises in their own lives to accommodate their sick member. Note that Brian’s family – white, middle- class, educated and well-connected – were able to tap into a range of available resources such as government-subsidised modifications to their home, a ‘dial- a-ride’ service paid for by the local council, trained carers and various state benefits such as Incapacity Benefit (paid to someone who is unable to work), Attendance Allowance (paid to an individual who needs 24-hour care) and Mobility Allowance (paid to people who cannot get about without special
Box 7.1 Examples of the importance of the family in the illness experience.
These cases, based on real patients, have been fictionalised to protect confidentiality.
The story of Brian
Brian was a university lecturer who had a wife Jane and three grown-up children. When he was 45, he developed progressive neurological symptoms which were subsequently diagnosed as multiple sclerosis. By the time he was 55, he was wheelchair bound and required assistance with every aspect of daily living. The family rallied round. Jane changed her job so that she could provide 2 hours’ input to help Brian get ready every morning and put him in the taxi that took him to work, where he continued to teach students until his retire- ment. The children organised their lives so that they visited their parents every week or so, and friends also dropped in regularly as they knew that Brian and Jane found it more difficult to go out than other couples. Eventually, Brian’s condition deteriorated to the point where he could only move one finger, but this was enough to operate the entry phone to the door to let helpers in and an emergency alarm. This arrangement allowed Jane to continue her part-time job, gaining respite from her work as a carer and bringing in much-needed income. Brian occasionally went through periods of low mood, and wondered
‘why me?’, but benefited from the support of his family until he died after a brief stay in hospital at the age of 69.
The story of John
John developed Type 1 diabetes when he was 7. At the time, he lived with his parents and younger brother Stuart in a semi-detached house on an estate close to his primary school. John developed a close relationship with the diabetes specialist nurse at the local hospital, and the family attended weekend ‘camps’
organised through the charity Diabetes UK, where he met other children with diabetes. At these camps, John’s parents discussed the challenges of bringing up a diabetic child with other parents in the same situation. On Wednesday evenings and Saturday mornings, John’s father took him to play football at the local club and made sure he adjusted his food and insulin according to the instructions given by the nurse. When John was 11, his parents got divorced.
His mother, who had worked part time from home, took on a full-time job in a local supermarket where she was required to work shifts, including some evenings and weekends. His father moved to a small flat in a town 40 miles away to live with his new fianc´ee. After a difficult few months, a routine was established where John and Stuart spent alternate weekends with their father.
John was dropped from the football team after ‘missing too many training sessions’, and became increasingly interested in Play Station games. John’s mother was unable to make the Diabetes UK weekends because of her shift work, and his father was preoccupied by the impending arrival of a new baby.
As John entered adolescence, he spent more time going out with his peer group
and worked out how to ‘run high’ to avoid the risk of hypoglycaemic attacks.
Neither of his parents seemed to mind that he was controlling his diabetes without asking for help. At his annual check-up soon after his 16th birthday, John was found to have diabetes control in the ‘very poor’ range and early retinopathy.
The story of Nermal
Nermal is a 24-year-old Kurdish asylum seeker, originally from Afghanistan.
She lives in north London with her three children aged 5, 3 and 2, in a refuge for women who have suffered domestic violence. Her immigration status is insecure because the British government have not yet decided whether to al- low her permanent residence in the UK. She has consulted her GP 19 times in the past year, with complaints that might be broadly categorised as ‘med- ically unexplained symptoms’.5 These include headaches (for which she has had a neurological referral, CT brain scan and a course of cognitive behaviour therapy), upper abdominal pain (for which she has had a gastro-enterological referral, upper GI endoscopy, a course of treatment for H. Pylori that had no impact on her symptoms, and five different antacid drugs), non-specific skin rash (for which she has had 12 different skin creams and a dermatological referral at which no diagnosis was made despite a skin biopsy) and depres- sion (for which she has had counselling, three different antidepressants and a psychiatric referral, though she failed to attend her appointment). A thorough assessment undertaken 2 years ago by the UK charity, the Medical Foundation for the Care of Victims of Torture (http://www.torturecare.org.uk/), via an interpreter trained to deal with people with complex needs, established that Nermal’s husband is a drug trafficker who was physically and sexually violent towards her and ‘put her on the streets’in Pakistan where they lived for 2 years.
Her husband is now living in mainland Europe but visits the UK regularly – illegally, since he is wanted by the police. He is the father of the oldest child but the fathers of the other two children are unknown. Nermal lives in fear that she will be sent back to Afghanistan and that her husband will discover where she lives and return to rape her. The two youngest children are being monitored by the health visitor for underweight and ‘poor bonding’ with their mother.
means)∗ Brian was also eligible for a modest supplementary pension from his employer that added to his state benefits. He owned his house, so there
∗Please do not use this book as a reference text on the UK benefits system, which, like that of many other countries, is complex and constantly changing. The point about benefits is that it takes someone who knows the system to identify which benefits the person is eligible for and how to apply for them. In Brian’s case, he and his wife were able to access the relevant information and act on it – but consider how much more difficult this would have been for Nermal (case 3 in Box 7.1).
were no clauses from a landlord prohibiting him from making the necessary modifications. And so on. You can probably see how ‘the family’ in Brian’s case was not only supportive at an emotional level but was also nested in a particular social situation that allowed them to operationalise that support at a practical level.
Now consider John. At the beginning of the story he enjoyed a comparable package of family support, with the various family members doing their bit to help him live with his illness. Diabetes, especially in a child, is a family chal- lenge rather than an individual one. Parents can learn the theory of healthy eating, safe exercising and striking a balance between ‘protecting the child’ and
‘promoting independence’ in the clinic, but making that theory work in reality needs a different kind of learning – the informal learning gleaned from the per- sonal stories and practical tips of other parents, and from seeing other families actually enacting these worthy principles (see Section 2.8). John’s parents’ di- vorce, a distressing enough event for any child, had a particularly devastating impact on his illness experience. The shift from a two-parent to a one-parent family requires the children to manage with much less parental attention (and less money), and whole-family events such as the Diabetes UK weekend camps become more difficult to organise. Like many children who pick up on the sig- nals that parents have other issues to attend to, John got on with managing his diabetes – but the limited support and reduced family cohesion contributed to an inexorable drift towards poor control and complications.6
The saddest case in Box 7.1, Nermal, is (somewhat ironically) the individual who has no formally diagnosed disease. Even the ‘depression’ for which she was treated was not diagnosed on ICD10 criteria (see Section 5.2) but assumed to be present because no physical cause was identified for her multiple symp- toms. The problem here is not merely that the family is fragmented, but the social context in which it became fragmented. Despite her young age, Nermal carries the scars of living under the Taliban regime in Afghanistan in which women were not allowed to be educated and had to remain behind the most restrictive of veils; a brutal war that killed many of her relatives; 2 years in a refugee camp and a further spell, living illegally while her husband drifted into criminal behaviour; and (a common solution to abject poverty in times of civil unrest) a period of enforced prostitution. Two of Nermal’s children are the products of sexual encounters with strangers in the absence of true con- sent (and where she was powerless to negotiate contraception), so it is small wonder that she has problems relating to them.
How can we begin to get an academic perspective on the family when the term means so many different things? How can we design primary care systems that recognise the different levels of family support available in the real world, for which Brian, John and Nermal illustrate the contemporary extremes? The
‘ologies’ set out in Chapter 2 offer several important ways into this complex territory.
Let’s start with epidemiology – or at least, applying the tools of epidemiology to provide demographic data on the family at a population level. The mapping
of population statistics and trends is explained in more detail in Section 8.1.
The latest data from the UK Office of National Statistics, based on survey data from 2005 (see www.statistics.gov.uk),7plus a research report based on this and other data sources8show that:
rThe proportion of one-person households in Great Britain continues to in- crease – from 17% in 1971 to 29% in 2005.
rOlder people are more likely to live alone than younger ones. The overall solo living rate of 30% in the people over 60s masks some important subgroup differences. For example, nearly 60% of women aged 75 and over now live alone.
rMen who live alone have often never married, whereas women who live alone often do so after the break-up of a relationship or the death of a partner.
rPeople living alone are less likely to own their home, more likely to smoke and to drink more than the recommended alcohol limits and have a lower income than those living with others. However, people living alone tend to have similar numbers of friends and social contacts than people living with others, so the idea that solo living is linked to loneliness is largely unfounded.
rPeople are marrying later. In 1971 the average age at first marriage was 25 for men and 23 for women; in 2003 it was 31 for men and 29 for women. Many people now go through a temporary period of solo living before marrying or cohabiting.
rThe divorce rate is high (one couple in two who marry subsequently get divorced), but has been stable for 20 years and has recently fallen slightly, especially amongst the under 40s – perhaps because an increasing proportion of this group cohabit rather than marry. Divorces in people over 50, though still relatively uncommon, are rising.
rFewer women are having children (one woman in five now remains childless all her life), and more than two-thirds of 25-year-old women today are childless.
rChildren are living in an increasing variety of family structures. In 2005, 42% of children born in Britain were born out of wedlock, compared to 12% in 1980 (see Figure 7.1); one in four dependent children lived in a single-parent family; and one in ten lived with a stepfamily (i.e. with father’s or mother’s new partner).
rMultiple births are becoming commoner, especially in older women: 21% of all births to women over 35 in 2005 were a twin pregnancy.
rThe teenage pregnancy rate in Britain is the highest in Europe. In 2005, 6%
of young women aged 16–19 became pregnant and 2.5% had a live birth.
rAn increasing proportion of people were born abroad (Table 7.1); of these, almost all will have important personal ties to family outside the UK, whom they may never see again.
These quantitative data are interesting for three reasons. Firstly, they have important implications for the organisation and delivery of healthcare. Imagine an epidemic of severe influenza (flu), for example. In previous epidemics (1918, 1957, 1968, 1975 and 1988), most people who developed flu, especially the frail elderly, were living in households where someone could care for them. If a flu
0 10 20 30 40 50 60
1980 1990 2000 2002 2003 2004
Year
Percentage
Sweden United Kingdom Spain Greece
Figure 7.1 Percentage of children born out of wedlock in four countries from 1980 to 2004.
epidemic broke out tomorrow, the health care system (and society in general) would have to consider how to deliver the kind of care in the community that was hitherto provided by families, and on an unprecedented scale.
Secondly, changes in family structure may lead to changes in patterns of illness, disease and risk, as well as to important economic changes that have a crucial indirect impact on health. The dramatic changes in family structure
Table 7.1 UK population and proportion of people living in UK who were born abroad.
People living in Britain
1971 1981 1991 2001
All people 52,559,260 53,550,270 54,888,744 57,103,331
People born abroad 2,390,759 2,751,130 3,153,375 4,301,280
People born abroad as percentage of total
4.55% 5.14% 5.75% 7.53%
Source: UK Office of National Statistics (www.ons.org).
seen in China over the past 25 years as a result of the one-child policy have, arguably, lifted hundreds of millions of people out of abject poverty and un- derpinned China’s dramatic economic growth,9but they have also left China in danger of not being able to look after its expanding elderly population in the medium-term future.10The loss of large numbers of parents to AIDS has created a highly unstable family structure in many African countries, where AIDS orphans are now looked after by grandparents or simply left to walk the streets. An infant born to an HIV-positive mother in Africa has a virtually 100% chance of being orphaned by the age of 10.11Furthermore, because AIDS affects the working generation more than the extremes of age, the impact on both family and national economies may be devastating.12These somewhat dramatic examples highlight a more general principle – that family structure affects illness and illness affects family structure. The examples also illustrate how family structure is linked to family income and, as we shall see in Section 9.1, income is closely linked to health outcomes.
Interestingly, whilst numerous variations on the nuclear family model are prevalent in today’s society, relatively few structural variables are consistently associated with poor health outcomes in epidemiological studies (Box 7.2).13 Immigrant families (after controlling for poverty), families headed by a grand- parent, families with multiple adults who share childcare and families with gay or lesbian partnerships have not been consistently associated with any adverse health outcome.13,14The impact of divorce per se on children’s health and development is difficult to disentangle from the impact of having a lone parent – which in turn may be confounded by the impact of poverty. There is some (but not much) evidence that even when parents divorce amicably and then remarry quickly into a new family of comparable or higher income, there is still an impact on children’s cognitive performance, behaviour and social adjustment. However, the effect, if present, is small relative to the impact of poverty. The impact of working mothers on children’s health is discussed in the next section.
Thirdly, the numerical data referred to above raise questions about quali- tative changes in the nature of society. Two more ‘ologies’ have an important
Box 7.2 Family structures that have been consistently associated with ill health and disadvantage in epidemiological studies.13
r Lone parents with children, especially those headed by a single unmarried mother and/or a teenage mother (the effect is still present, though much di- minished, after controlling for poverty)
r Unemployed parents, especially those experiencing long-term (>1 year) un- employment
r Families with only one wage earner, and that a low earner r Large families (i.e. with three or more children)