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Introduction

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

This unit is from our archive and it is an adapted extract from Understanding Health and Social Care (K100) which is no longer in presentation. If you wish to study formally at The Open University, you may wish to explore the courses we offer in this curriculum area.

Care is needed at all stages of life. This unit makes care in the family its focus because the overwhelming majority of care, including health care, is supplied in families, much of it in private, much of it unnoticed and unremarked upon. The meaning of the term (informal carer) and the word (care) itself are explored.

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Learning outcomes

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

After studying this unit you should be able to:

Appreciate the demands that care relationships place on people.
Describe how individuals might experience care.
Demonstrate an understanding of the difficulty of identifying carers when there is interdependence in the relationship.

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1 Caring: a family affair

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Dream parents

Mummy would love me, daddy would too,

We'd go out on picnics or off to the zoo,

We would play in the park and feed the birds,

Listen to their songs and imagine their words.

My life would be full of joy and laughter,

All because they cared, my mother and father,

Never would I feel all cold and alone,

Knowing that I could always go home.

They would teach me to care and always to share,

And never to forget that they will always be there.

Love is eternal, it's my life long dream

Thank you for this, you're my king and my queen.

(Anastasia Lee-Harmony, 1996)

It may seem odd to start with a poem, but it's there as a reminder that ideas about care have deep emotional roots, and that those deep emotional roots are closely associated with ideas about families and what they should be like. In fact, the reality of Anastasia Lee-Harmony's own experience of family care is very different from that offered by the idealised ‘dream parents’ in the poem.

We all have some personal knowledge of care. Much of that knowledge comes from experience in families. Babies do not survive unless someone gives them at least a minimum of care. Most people also know what it is like to care for others – as a parent, a son or daughter, a brother or sister, a partner. Being cared for, or giving care, is as near as you can come to finding a universal experience. For almost everyone their first experience of being cared for is in the family, as an infant in the arms of a mother or a mother substitute. Families are the starting point for care. You might even go as far as to say that families exist in order to provide care. And many ideas about what care is or should be come from experiences of families, or beliefs about what families ought to be and how they should behave. Lee-Harmony's poem is an example.

In the main, society is organised as if the need for care is exceptional, exclusive to the very young, the very old, and adults who are ill or have a mental or physical impairment. Care is needed when we cannot function in daily life without the practical help of others. Babies need the fairly constant attention of an adult until they learn to eat, move around independently, follow ‘rules’ of day-to-day behaviour. At the other end of life also, as people cope with declining health, limited physical mobility and sometimes degeneration of mental capacities, help with daily living is needed. Most adults, however, are usually seen to need ‘care’ only if they are unusual in some way – if they experience illness, disease, or physical or mental impairments.

Care is needed at all stages of life.

Long description

Yet most people, at all stages of life, need some kind of care – emotional support, advice, having their washing done, their food shopped for and cooked, their feet massaged, their bath run. This need for care is not usually met by any kind of specialist services. It is supplied by family, friends, lovers, workmates, neighbours. Take health care, for example. We usually think of health care as being supplied by paid professionals – doctors, nurses, chemists and the like. But in a book about women, health and the family, Hilary Graham argues that:

For most of us it is families who meet our health needs in childhood; for warmth and shelter, for love and comfort. Families, too, serve as our first and most significant health teachers. In adulthood, most people create new families (often more than one) to support them ‘in sickness and in health’. In old age, it is our family again who cares most and does most for us.
(Graham, 1984, p. 17)

This unit makes care in the family its focus because the overwhelming majority of care, including health care, is supplied in families, much of it in private, much of it unnoticed and unremarked upon. However, in the world of health and social care, that kind of care – all the work behind the scenes entailed in bringing up healthy children or maintaining adults – is not of interest until something goes wrong: the baby ‘fails to thrive’, the young child has ‘special needs’, the teenager becomes a drug addict, the parent ‘can't cope’. So, although all the private activity is immensely important, it is not our main focus. Our focus is on those occasions when that privately supplied care is not enough, when the private care world of the family meets the public world of official statistics, care agencies and paid workers. The effect is to make ‘care’, that everyday word, into an official term, and to make the people who deliver that care in families into semi-official beings – ‘informal carers’.

The idea that families do and should provide care sounds straightforward. But behind this apparently simple idea there are a number of unstated questions and some quite contentious political issues. Here are some of the questions we will be addressing in this unit.

Core questions

Who are the carers within families?
What do we mean by the word ‘care’?
What demands do care relationships place on people and when should the state play a part?
How do families and caring fit together?

We approach these questions through a case study. Case studies are a way of focusing on situations in detail and many are about people's lives.

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2.1 When is someone an informal carer?

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Who are informal carers?

Long description

Section 1 explores what is meant by the term ‘informal carer’. ‘Informal carer’ is an official term that is used when the private world of the family meets the public world of formalised care provision. To distinguish the care work that is done in families from the work done by paid workers – social workers, nurses, care assistants and the like – whose job is also related to care, the term ‘informal carer’ has been coined. But how do we actually know when someone is an informal carer, as opposed to being a mother, a daughter, a father or a son?

We approach this question through a case study about the Durrants.

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2.2 Introducing the Durrants

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The Arthur and Lynne case study

We will be focusing on a single case study, about Arthur and Lynne Durrant. This enables us to explore some broad questions about care, carers and caring which might be quite boring and divorced from real life if they were presented in the abstract – as official statistics, extracts from White Papers or legislation.

The case study is not ‘typical’. In fact, it presents a fairly unusual situation, one which you might not recognise from your own experience. It was chosen because it is unusual. It raises important questions in a particularly challenging way– questions about who carries responsibility for caring for whom, why they carry that responsibility, the impact caring has on their lives, the support they get, and the support they might need.

I use the case study to pose questions and test ideas which otherwise might be difficult to focus on. When you think about a practical situation in all its complexity, questions acquire a sharper edge. If you work in a hospital, say, or with children, do not be put off by the differences. Think instead about the similarities – how you would answer the questions we are exploring in relation to Lynne and Arthur, in a situation with which you are familiar.

The story is presented in the audio clip 'Caring in families: a case study'. It is based on a real-life incident, narrated during two long interviews about her life by the woman we have called Lynne Durrant. But it is not real life, because it has been dramatised to ensure no one can recognise the people or the places named, and some details have been changed. The drama introduces Lynne Durrant, a single woman born in 1947 who is in her forties at the time of the interviews. She lives with Arthur, her father, who is insulin-dependent. He also depends on others to meet many of his physical needs. As a child Lynne was certified as being a ‘mental defective’ in the language of the time, and excluded from school on those grounds. Although she now has a job, she is still known to social services as a person with a learning disability. Lynne and Arthur live in a high-rise flat on a large estate built by the local authority in the 1960s. The estate is still largely in public ownership, known locally as council housing.

Audio: click below to listen to the case study on 'Caring in Familes'

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Transcript

Click on 'View document' below to read 'Caring in familes: a case study'.

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Activity 1: Getting to know the case study

0 hours 45 minutes

This activity is designed to get you familiar with the Durrants’ case study. It is in two parts.

Read ‘Caring in families: a case study’. This tells you the basic story derived from research interviews with Lynne and Rita, her disability employment worker, whom she chose to have present at the interviews.
Play the audio clip 'Caring in families: a case study'. Listen to it all through once. Make sure you have a broad idea of what's going on.

When you have done both, jot down some ideas about how the Durrant family compares with the family conjured up in the poem, ‘Dream parents’.

Discussion

The Durrant family is a long way from the idealised family in the ‘Dream parents’ poem. This points to the sheer diversity of families. I noted in particular that there is no mother in the Durrant family, nor are there any young children.

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2.3 What is an informal carer?

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Lynne is a daughter and a sister. Is she also an informal carer?

Audio: click below to listen to the case study on 'Caring in Familes'

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Activity 2: What Lynne does and does not do

0 hours 15 minutes

Listen to the first two scenes of the audio clip 'Caring in families: a case study' again. After listening, write down the answers to the questions below.

What tasks does Lynne do for her father and what does she not do for him?
- Washing him?
- Washing his clothes?
- Shopping for him?
- Preparing and heating his meals?
- Helping him on the toilet?
- Dressing him?
- Giving him his injections?
- Paying the rent?
Think about how the things Lynne does not do for Arthur differ from those she does.
Is Lynne rewarded for what she does for Arthur?

Discussion

Here is what I noted:

Lynne mentions shopping, preparing and heating his meals, doing his washing. She pays the rent. She does not wash him, assist him in going to the toilet, dress him or give him his injections.
I thought that washing, toileting and dressing are tasks which demand considerable physical closeness and touching. This she avoids. Giving him his medication also requires a degree of physical closeness, perhaps, but its main difference from the tasks Lynne does lies in the level of responsibility implied. If she got the medication wrong consistently, her father's condition might get worse, and that would have serious consequences. So the things she does not do differ from those she does in two ways:
- she does not do things which demand a lot of touching, physical closeness;
- she does not do things which carry a high level of responsibility.
Well, Lynne is not rewarded in any conventional sense. She is not paid. It is possible she gets some kind of emotional reward, although that is not immediately obvious.

Why does Lynne draw the line where she does? As far as physical closeness goes, if Lynne were to dress or wash Arthur it would be deviating from the normal rules which govern social behavior. It is not common for women to touch men unless they are in a fairly intimate relationship – partners, lovers, mothers with young sons. To start taking her father to the toilet would mean breaking an unwritten social rule about how adults behave towards one another, specifically how adult daughters behave with their fathers. She would see his genitals, possibly have to wipe his bottom. When it comes to administering medication, we heard it is the community nurse's responsibility. The nurse might well be held responsible if anything went wrong.

So these are tasks Lynne does or does not do for Arthur. Is this what we mean by care? It is a long way from the sort of care the poem refers to. It is not care in the sense of an all-enveloping love and protection. But it is done without payment, and it involves doing things for a family member which need doing. In fact it is much more like the sort of caring assumed in policy documents and in research studies on health and social care.

In 1994, Parker and Lawton analysed census data and drew up a list of the sorts of tasks done by informal carers in the home.

What informal carers do

personal services, like washing someone, or taking them to the toilet
physical labour, like changing bedclothes, doing laundry, moving people who cannot move without assistance
paperwork, like paying bills, writing letters
practical assistance, like fetching prescriptions, shopping
keeping people company
taking people out
giving medicine
keeping people occupied.

So is Lynne what we might describe as an ‘informal carer’? She does not call herself one, but nowadays we have government policy and legislation about carers. Is she the sort of person they mean? This is the subject of your next activity.

Activity 3 Is Lynne a carer?

0 hours 5 minutes

Compare the tasks Lynne does for Arthur with Parker and Lawton's list of what informal carers do (see Box above). Which of them does she do? Which does she not do?

Discussion

These are my thoughts:

Lynne's contribution to her father's welfare includes physical labour, paying bills and practical assistance.
She does not do what Parker and Lawton term personal services, and expresses distaste at the prospect of even touching him. She does not give him medicine.
As far as we know she does not take him out, or keep him occupied, but she does keep him company to a limited extent, just by being around at times.

If she did not do any of these things, someone else would have to do them – possibly a paid carer. In these terms, Lynne probably is a carer although, as I noted earlier, she does not call herself one, and neither do other people in the drama. Arthur certainly does not see her as his carer. To him, she is his mentally handicapped daughter.

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2.3.1 A definition of an informal carer

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Are we any nearer to a definition of an informal carer which goes beyond the case study? Well, three points stand out so far. An informal carer:

Performs certain services for someone else with whom they already have a relationship
Is not paid a wage for those services
Is responsible for the welfare of someone who needs extra help with daily living, because they are ill or otherwise disabled.

I can therefore put forward a definition of an informal carer as:a person who takes unpaid responsibility for the physical and/or mental well-being of someone who cannot perform the tasks of daily living unaided, because of illness or disability.

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2.4 Defining terms

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Why are we spending so much time and energy on asking whether Lynne is a carer? Does it matter? It would matter if Lynne wanted to apply for financial or practical support as a carer. It matters to budget holders to know how many people qualify, because carers are eligible for financial assistance. It would also matter to organisations which campaign for the needs of carers – organisations like the Carers National Association, Mencap, Age Concern or MIND. It would matter to a social worker making an assessment of the Durrants’ situation.

A National Strategy for Carers

In 1999 the UK Department of Health published its National Strategy for Carers which recognised that ‘Carers play a vital role – looking after those who are sick, disabled, vulnerable or frail. The government believes that caring is something which people do with pride. We value the work that carers do. So we are giving new support to carers. Carers care for those in need of care. We now need to care about the carers.’ (Department of Health, 2000, p.11)

The Strategy has three elements:

Information, including a new charter laying down what help and support carers can expect.
Support – carers need to be involved in planning and providing services, and should be consulted.
Care – carers should have their own health needs met, should be able to expect services to help them care, and should be able to take a break.

The Strategy covers all four countries of the UK.

National Strategy for Carers, accessed 15 May 2002

Nowadays the internet is a major study resource. We include website links like the one above just in case you want to follow up a particular interest in a topic. Whether you do is entirely your choice.

If we are to understand society we need to be as clear as we can be about the meaning of the words we use. When discussing something as complex and controversial as society and social policy, there are very few words whose definition is universally agreed. People alter definitions to develop new arguments. Although we are never likely to come to a watertight definition of any word – as the philosopher said, ‘I know what a mountain is, but that doesn't mean I can define it’ - understanding the different meanings words carry is something that merits attention.

My definition of an informal carer sounds fairly straightforward, but there are problems. Here I will consider four complications:

interdependence
duration and frequency
labelling
networks.

After considering these in turn, I will return to the definition and try it out in a different context.

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2.4.1 Interdependence

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The definition suggests that it is a simple matter to recognise the carer in a given situation. In some, perhaps most, care relationships this is true. However, the case of the Durrant family is complicated. Both Arthur and Lynne are included in categories often seen as needing the services of a carer – Lynne has a learning disability, Arthur's health is impaired by illness. But both have a claim to be seen as carers, too.

Activity 4: Is Arthur a carer too?

0 hours 5 minutes

What does Arthur do for Lynne? Does he do any of the things listed in the ‘What informal carers do’ box? (Refer to Box in Section 1.2.)

Discussion

Arthur reminds Lynne that the rent is due, and writes out the cheque.

He gives her practical assistance. He manages her money. He gives her a shopping list and the cash to pay for the shopping.

He keeps her company – even though she says she doesn't want it! And he keeps her occupied, although in ways she resents.

The fact that Lynne believes she could very well do without Arthur's help does not change the fact that Arthur is also a carer in some of the ways identified in the ‘What informal carers do’ box. Indeed, he would probably recognise himself as a carer more readily than he would recognise Lynne.

On the basis of this example, it is possible to say that sometimes there is interdependence or reciprocity. People depend on one another, rather than one person always giving and the other always receiving care.

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2.4.2 Duration and frequency

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The second complication associated with identifying carers is related to how much caring they do and how often they do it. This aspect came to the fore when carers were first identified in the 1985 General Household Survey, an annual statistical survey carried out by the Office of Population, Censuses and Surveys in the UK (Green, 1988). From answers to a question in the survey which asked if respondents took on ‘extra responsibilities’ for someone who was ‘sick, handicapped or elderly’, it emerged that there were over six million carers in the UK. This figure was estimated at 5.7 million in 2000 (Department of Health, 2000). In a UK population of 55 million people, that amounts to around one person in every 10.

Stop for a moment and think of 20 people that you know of all ages. Are two of them informal carers?

This estimate has been modified by refining the category of carer to mean a person who both is the main carer and also spends 20 hours a week or more on caring. It is calculated that there were approximately 1.5 million people in this category in 1995 (Bytheway and Johnson, 1997).

Adding this requirement to the definition makes it easier to target services and support, but excludes many people who, like Lynne, do work of considerable importance but do not get recognition. Indeed, the Carers National Association, the main group campaigning for the needs of carers, resists this narrower definition, and still quotes the figure of seven million in its publicity and press releases.

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2.4.3 abelling

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The term ‘informal carer’ is a label. It was coined to describe people who take on unpaid responsibility for the welfare of another person. It is a term which has meaning only when the public world of care provision comes into contact with the private world of the family where caring is a day-to-day, unremarked-upon activity, like reminding a young child to clean her teeth. Labelling yourself as an informal carer requires a major shift in the way you see yourself, a shift neither Arthur nor Lynne has made.

Activity 5: Are you an informal carer?

0 hours 5 minutes

Have you ever had ‘extra responsibilities’ for someone who cannot perform the tasks of daily living unaided, because of illness or disability? If so, did you call yourself an informal carer?

Discussion

Perhaps you already saw yourself as a carer. Possibly you are now more likely to identify yourself as a carer than before you began to study this subject!

‘Carer’ is a word coined by professionals. It is a term that many ordinary people who fit the definition, like Lynne, do not apply to themselves. As Jill Pitkeathly, Director of the Carers National Association, put it:

Most of Great Britain's six million carers do not know that they are carers – ‘I'm not a carer, I'm a wife, a mother, a son’.
Pitkeathly, quoted in Burke and Signo, 1996, p. 24

It is sometimes quite hard to draw the line between what someone does as a member of a family and what constitutes being a carer. The task of recognising family carers has become more important as the importance of the job they do has been recognised. Carers are entitled to have their needs taken into account when decisions are made about what sort of extra help families need in caring for someone who is disabled or frail. Once they are identified, carers can be asked to take responsibility for someone who needs care. Carers can claim certain benefits like invalid care allowance, too. But to label yourself an informal carer means taking on a new identity.

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2.4.4 Networks

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The fourth complication of my definition of a carer was networks. The drive to recognise someone as an informal carer or main carer risks leaving out of the picture other people who play an important part in sustaining someone, but who are not the main carer. In Lynne's case, for example, we heard that her boyfriend, Eddie, was an important figure. If her needs for care were under the spotlight, would Eddie figure? He probably does not count as a main carer, but without him her quality of life would be impoverished.

So, although my definition may be helpful in pointing at what we are talking about, it is a very general definition, and risks over-simplifying what might be an extremely complex set of relationships: it may include a lot of people in the category ‘informal carer’ who may prefer not to be labelled in that way, and exclude others.

To explore these limitations further, I shall apply the definition to another care situation.

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1.5 Young carers

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Who is left out of the definition of informal carer? At first sight, taking account of the four complications noted above means that no one is left out. The definition can embrace anyone who is taking unpaid responsibility for the welfare of another person. Where do children and young people come into this? Maybe in answering Activity 5 you considered whether parenting young children makes you a carer. Looking after young children is not usually seen as making someone a carer. It is seen as mainly the private responsibility of families unless social services or other agencies have cause for concern, or families themselves ask for help. The public world which finds it necessary to identify informal carers does not concern itself with healthy children, although the parents of sick or disabled children do count. Informal carers are recognised when someone of any age has exceptional needs for care.

Now consider this scenario.

Katrina

Katrina's situation was reported in the weekly magazine Community Care. Katrina is 15 years old. She lives with her single mother and her younger brother and sister. Katrina's mother has agoraphobia – she is frightened to go out of the house, and subject to panic attacks. Much of the responsibility of care falls on Katrina - managing her mother's condition, taking her younger siblings to school and to evening activities, doing shopping and housework. She started to miss school because she had too much to do at home; then, she says, ‘I missed so much I did not see any point in going back’. Katrina does not resent her responsibilities. She is proud of them, and the important contribution she makes. But, she says, it leads to friction: ‘I often have arguments with my mum, usually over little things. I tell her I can't be an adult in the house, then be treated like a kid when I go out.’

(Adapted from Bond, 1995, p. 22)

Activity 6: Is Katrina an informal carer?

0 hours 5 minutes

Try out our definition of informal carer on Katrina. (See ‘What informal carers do’.) Is she an informal carer?

Discussion

Katrina seems to deserve the title ‘informal carer’. She is taking responsibility not only for her mother, but also for her younger siblings. She is not paid. And her mother is ill.

Katrina is by no means unique. In 2000 it was estimated that there were between 20,000 and 50,000 children who were carers (Department of Health, 2000), and the National Strategy for Carers made the needs of young carers a particular focus.

Yet for many years children and young people were omitted from considerations about informal carers. They did not figure in statistics, they were overlooked, unnoticed – and therefore unsupported. What we focus on here is some of the complexities of naming young carers, using the four complications of the definition identified earlier:

interdependence
duration and frequency
labelling
networks.

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1.5.1 Interdependence

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Although Katrina's mother depends on Katrina for some of her own needs and the needs of the younger children, she also cares for Katrina in that she is legally and financially responsible for her. She is also able to give love, advice and support. So it is a two-way relationship. Nevertheless, young carers challenge prevailing ideas about what children or young people do in families. There is apparently a ‘role reversal’ – as Katrina put it so neatly, her mum expected her to be an adult in the privacy of their own home, but a child in public. You might recognise parallels with Lynne Durrant here. Part of Lynne's frustration was that Arthur treated her as a child, while accepting and expecting an adult's contribution to his care and to the household finances.

As you saw in the case of the Durrants, both parties gave care as well as received it. In families with young carers, this is also likely to be the case.

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1.5.2 Duration and frequency

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

We do not know if Katrina's caring responsibilities took up more than 20 hours per week. In a sense, though, whether they did or not is immaterial. What is important is that her schooling was adversely affected. We can speculate that, even if caring accounted for less than 20 hours per week, the emotional impact of being a young carer overflowed into a far larger proportion of her life.

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1.5.3 Labelling

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Official language about informal carers is at variance with the way we normally talk about family life. How many children or young people who care – for parents or other relatives – would spontaneously label themselves a ‘young carer’? How many parents would describe their son or daughter in this way? How many people who frame census questions would have thought of including a question to find out, until ‘young carer’ became a category like ‘disability’ or ‘age’ that census takers consider important?

Labelling a child or a young person as a carer has an impact not only on their own identity, but also on that of the person they care for. Statistically speaking, this is usually a lone parent because otherwise a partner is likely to be the informal carer. But how does it feel as a parent to be designated as needing care from your child? Some disability activists argue that it is demeaning to disabled parents to be singled out in this way (Keith and Morris, 1994), and that it distorts the focus: support should be offered to the parent to function as a parent, not to the young person to function better as a young carer.

A particular issue when it comes to recognising young carers is fear - fear on the part of the adult that their child will be taken away so that they can enjoy a ‘normal’ childhood elsewhere, fear on the child's part that the relative they care for will be transferred to a home or a hospital. Despite the pressures young carers have to cope with, most seem to prefer that to the loss of their family. Indeed some, like Katrina, feel proud of what they do.

For all these reasons labelling a child as a young carer may be at variance with the way the family wants to present itself to the outside world.

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1.5.4 Networks

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The way Katrina's story is presented leaves out others who may be involved with the family. This is because the story was part of a campaign by Community Care magazine to highlight the plight of young carers. It made sense to emphasise Katrina's role and omit information which might detract from the impact of a single-issue campaign.

The discovery of young carers is an interesting example of what happens when the official spotlight is turned on a particular group in society. There have always been children and young people taking responsibility for other members of their families. Charles Dickens’ novel Little Dorrit, written in 1855, was about what we might nowadays call a young carer. But once it becomes recognised that these are not just isolated examples and that young carers are a sizeable minority, pressure builds up to provide support for them. Katrina, for example, was put in touch with a new service for young carers set up by her local authority, a service that would have been unheard of only ten years earlier.

The purpose of this section was to explore how informal carers are defined, and the topic of young carers was introduced to illustrate the complexity of defining them. I therefore won't digress any further into discussion of how young carers get support. The important point is that using labels like ‘informal’ or ‘young carers’ changes the way we look at the world. Twenty years ago Katrina would have been seen as an aberration, a phenomenon which went against the grain. Now she is a young carer. Naming her as such opens the way to thinking about how she and others like her can get support. But it also closes off options. Seeing her as only a young carer, and her family only in that light, can also blinker us to the complexity and individuality of their situation.

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1.6 Informal carers: summing up

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Section 1 has explored what is meant by the term ‘informal carer’. I have developed a definition of an informal carer and examined it in the context of two rather unusual family situations, the Durrants’ and Katrina's. I have also noted some of the complications that trying to define and identify informal carers gives rise to.

I have not yet begun to address the difficult question of what label to give the people on the receiving end of care, people like Arthur or Katrina's mother. That is discussed in Section 2, and, as you will see, finding the right word for these people can be even more controversial than finding the right word for people who deliver care in families.

In the end, are definitions useful? The answer is, yes, they do have some uses. If you are not labelled as being in a category that is eligible for services, then you will not be provided with anything. Being called a young carer or an informal carer opens doors to resources of various kinds. But it can also distort a very complicated picture of relationships within families. So any definition needs to be used with caution. And, as the position of the Carers National Association shows (Section 1.3), claiming the right to impose your own definition is a part of public life. There will always be competing definitions of terms like informal carer, as long as they are in the public arena.

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1.7 Key points

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

In the key points box below we sum up the main ideas introduced so far. You can use it now to check that you have grasped the main ideas, and later the key points will remind you of the content.

Key points

An informal carer is defined as a person who, without payment, does some tasks for someone (or some people) who are unable to do them for themselves.
Informal carers care for people whose needs for help in daily living are seen to be greater than normal.
Being a carer involves doing things for others on a regular basis. It can be a 24-hour commitment or it can be less intense.
It is important to be able to identify carers if help and support are to be offered to them.
Identifying carers can be difficult: many people who care for relatives do not see themselves as carers, and in some relationships identifying the carer is complicated because there is interdependence.

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3.1 What do we mean by the word ‘care’?

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

‘Care’ is a loaded word. Care is not just about tender loving feelings, it is about work as well. Being seen as someone who needs care says something about a person – their competence, their position in society, their status. This section explores those meanings.

In the poem which opened the unit, care is a warm ‘feel good’ word, associated with what happens in nice families. But in the discussion of what a carer is in Section 1, it seemed that doing care was also hard work for Lynne and Katrina. Care is a familiar word, yet it isn't a word Lynne used about the work she does in the household. In fact, the only time the word passes her lips is when she mentions ‘the home cares’. On the other hand, the paid staff in the drama refer to ‘care packages’, ‘community care’, ‘care skills’ and ‘care needs’. ‘Care’ is a word that they use frequently.

So care has a variety of meanings. It is a technical term when used by professionals, and it denotes some kind of work. When it is used by ordinary people like Anastasia Lee-Harmony, it has something to do with love, emotion and protection. What do we mean when we use the word ‘care’? This is the subject of the next activity, which involves doing some very basic research.

Activity 7 What does ‘care ‘mean?

0 hours 30 minutes

1. Do some research about what care means. Ask as many people as possible to give you an instant one-word or one-phrase answer to the question, ‘What do you understand by the word “care”?’ After you have done this, think of your own one-word or one-phrase answers.

If you cannot do this, look in newspapers or magazines, listen to the radio or watch TV, and make a list of ideas associated with care that you find.

2. To try to make sense of the jumble of ideas associated with care it is helpful to use some broader concepts.

I asked a range of people what they think care means. Some of the ideas they came up with are listed below. In which of the two categories would you put each of these words and phrases?

loving	making a cake
cuddling	changing nappies
making phone calls	changing soiled bedding
healing	looking after people
doing things for other people	taking pains for
feeding someone	bothering about
cooking for my family	avoiding anger
affection	protection

Discussion

Here are my ideas.

You have already encountered the idea that care is doing something for someone. We'll call this care work.

Care work
Doing things for other people; feeding someone; changing nappies; changing soiled bedding; looking after people.

These are like the tasks in the ‘What informal carers do’ box (Section 1.2). They fit one definition, drawn up to describe the sort of care nurses do: ‘Doing for the patient [tasks] which if they were physically or mentally fit they would be able to do for themselves’ (Henderson, 1960, p. 3).

Some of the other ideas could be described as expressions of love or affection.

Care – love or affection
Loving; cuddling; making phone calls; taking pains for; bothering about; protection.

But some things seem to come into both categories. ‘Making a cake’ for example, is both a task and, often, a way of expressing affection, as is ‘cooking for my family’. In these cases, love or affection is expressed through doing something. This might also be true of ‘healing’ and ‘protection’.

Broadly then, ‘care’ might mean both work and love. We can draw a distinction between:

work: ‘caring for’ someone – undertaking the physical or ‘tending’ tasks they might need

and

love: ‘caring about’ them – feeling affection, liking, love, wanting to protect.

Sometimes the two go together – people often express affection through doing things for other people.

Activity 8: Categorising ‘care’

0 hours 5 minutes

Try putting the list of words and phrases you came up with into the two categories. Note any that do not seem to fit, and any that fit into both ‘work’ and ‘love’ boxes. As you work through the rest of Section 2, you may find that you can see where the strays go.

Discussion

To return to the case study, does Lynne care for Arthur? She doesn't seem to care about her father much, does she? Although she is a daughter, and therefore might be expected to feel, at least, affection for her father, she appears to actively dislike and fear him. There are no expressions of affection or love, no cakes. Care as work – or care for him – is a different matter. To the extent that she performs some care work in the household, we might argue that Lynne is a carer, but not a very affectionate one!

Study skills: Studying actively

You have come across several activities now. How are you approaching them? Do you stop to think and make notes? Do you spend the amount of time suggested? Or are you tempted to skip straight to the discussion after the activities?

As a learner you are free to approach your studies as you think best. In fact, to do well, it is important that you achieve a sense of control over your own patterns of study. You need to be able to think strategically and make your own choices about how much time to give to each element. But so that you can allocate your time wisely, we should explain the purpose of the activities.

The point of studying is to learn new ideas. That takes more than just reading. It requires you to think for yourself as you go along. The activities are there to engage your thoughts – to help you make connections between your existing knowledge and experience and what you are reading about.

To make proper use of the activities you need to have a pen and notepad with you when you study. Writing down a few thoughts of your own is the essence. It turns study from a mainly passive process of ‘soaking up’ to an active process of ‘making sense’. The activities are very varied and some are quite challenging. But even if you can't get fully to grips with some, just get something jotted down before looking at our comments after the activity. Then you can compare your own thoughts with our notes. Often our notes will look quite different from yours. That doesn't matter. It is the effort of concentration in jotting down your own notes – and the stimulus to your thinking when you compare them with ours – which help lodge new ideas in your head.

Your notes from activities can be a very useful resource. It's a good idea to keep them all together in a folder. The activities are numbered, which should help you keep your folder in order.

We give a rough time guide for each activity. It's up to you whether you spend more or less time.

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3.2 Care labels

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Why is it important to explore the way language is used? Two reasons were suggested in Section 1. Definitions are important so that services and support can be targeted to where they are most needed. And words carry several meanings. One student included as an example in her answers to the activity about what care means:

‘In care’ means stigma for children and young people.

This did not fit either of the definitions – care is work or care is love. So, where does it fit? Being ‘in care’ is often assumed to be linked to being from a ‘problem family’ or being a ‘problem child’. So, although intervention by services to rescue the child is meant to be a good thing, children who have been in care often feel they have been given a label which says to the outside world ‘this child does not come from a good home, this child is probably odd’. It can carry a negative message about them, in other words a stigma. If you know someone has been ‘in care’, you might be curious to know more or you might be prejudiced against them. In some circumstances, therefore, care can be a label just like the term ‘carer’.

Take the case of Lynne Durrant. Lynne was labelled as someone in need of care. As a child, at the age of eight in 1956, she was certified as a ‘mental defective’. This meant that two doctors were prepared to sign a form to say she was ineducable, unable to benefit from schooling, and therefore should be excluded from school. She went instead to an occupation centre run by the local authority for children who had been labelled as ‘mentally defective’. The label defined Lynne as a particular sort of person, someone in need of care because it was thought that she would never be able to fend for herself as an independent adult. That label shaped Lynne's life to a great extent. She was excluded from school, never learnt to read or write, and got no educational qualifications. Little was expected of her. She did not try to get a job when she left the occupation centre. Instead she went to an adult training centre, another local authority service for people who had been labelled mental defective. Lynne's label defined her as eligible for special care provision. It both opened doors (to a sheltered life in the adult training centre and to certain financial benefits) and closed them (no job, no home of her own, no mature, long-term sexual relationship). Like ‘carer’, ‘mental defective’ was not a label Lynne applied to herself.

Lynne Durrant's life – main events and changing labels

Long description

Times changed, and along with them the label that was applied to Lynne. She went through periods of being labelled ‘sub-normal’, then ‘mentally handicapped’, and finally, when I met her in 1992, she was introduced to me as ‘a woman with learning disabilities’. In 35 years the official label applied to Lynne, and people like her, had changed at least four times, and that leaves aside the unofficial labels she was given by others – unflattering names like ‘dumbo’, ‘spastic’, ‘mental’, ‘thicko’. However, it wasn't just a matter of the label changing. Life changed for Lynne, too. At the time you met her in the drama she had left the training centre and had a paid job alongside people who were not labelled. Although she still aspired to a home of her own, she had escaped at least some of the negative expectations that her label carried. In fact, she had acquired a new label – ‘worker’ – one which she was prepared to own.

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3.2.1 Words and images

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Words like ‘mental defective’ are also linked with images. Together, the words and the images make a powerful impact.

Activity 9 Words and images

0 hours 10 minutes

Look at the photographs of ‘mental defectives’ below. They are taken from a standard textbook entitled Mental Deficiency published in 1947 (Tredgold, 1947).

A. Quadriplegic idiot

Long description

B. Epileptic ament with mania

Long description

C. A group of Mongols

Long description

What sort of ‘care’ do you think these people require?

Answer A, B, or C to match each photograph to one of the care needs listed below.

Loving care of a family or family type environment.
A form of care preventing contact with the public.
Medical care and a good deal of looking after.

Discussion

I found these images conjured up several types of care needs for me.

Photograph A is apparently taken in a hospital. The subject is naked, contorted and helpless. The photo suggests that he needs medical care to remedy the effects of the quadriplegia, and probably a good deal of looking after as he is apparently helpless.

The children in photograph C are also in some kind of institution. They are wearing uniforms. At first sight I thought they were probably orphans, and would benefit from loving care in a family or family type environment, but the caption labels them as ‘Mongols’, not ordinary children.

The man in photograph B is labelled as an ‘epileptic ament’. He may be a nice chap, but he looks decidedly alarming, and the label is, to a contemporary reader, both mystifying and alienating. Maybe he needs a form of care which would stop him coming into contact with the public?

Together, the term ‘mental defective’ and the images appear to stress difference. The message is that these people are abnormal, not like us.

Of course, you would want to know more about all these individuals before making any pronouncements. But the point of the activity is to show that knowledge that they are mental defectives, combined with the images, tends to lead to a particular set of assumptions about who they are and what sort of care they might need.

Nowadays, as explained earlier, the term ‘person with learning disabilities’ has largely superseded the earlier labels – mental defectives, mentally handicapped, sub-normal. Along with the changing names come changing ideas about the care needs of people so labelled.

The photographs below conjure up very different images.

Sara

Long description

Shirley

Long description

Sara is a woman with learning disabilities but, unlike the people in the previous set of photographs, she is portrayed as active and competent, doing the ironing.

Although she is obviously disabled, Shirley is in her own home, an ordinary house, not an institution. She has aids to help her with daily living – a wheelchair and a communication device on the arm of the wheelchair. Probably she will need some special support, especially if the built environment is not wheelchair-accessible. But she looks far from being someone who needs either medical care or looking after.

The message from these words and images taken together emphasises what these people have in common with other people, what is shared, not what is different.

The photographs show contrasting images of people who are categorised as being in need of care.

The mental defective label is linked to a highly medicalised form of care. These people, the photographs tell us, are very different from normal human beings. They need specialised medical treatment.
The learning disability label linked with the more positive images presented here is associated with a rather different type of care – care as a helping hand with life, for people who are not so very different from the rest of humanity.

The changing images of people with learning disabilities shown in the photographs are not conclusive proof that changing labels brings changed realities for people like Lynne. But they do suggest that language both shapes attitudes and reflects changes in attitude.

Activity 10 Changing labels

0 hours 10 minutes

Another group of people whose labels have changed over the past century is people who experience mental illness. Make a list of labels for them that you can remember and then consider what the name changes say about them.

Discussion

The broad range of terms has changed from ‘lunatic’ in nineteenth-century legislation through ‘insane’ or ‘mad’ to ‘mentally ill’ to ‘people with mental illness’ or ‘people with mental health problems’. Particular medical conditions also give rise to labels – a ‘schizophrenic’, a ‘manic depressive’, a ‘psychopath’. What is noticeable is that the range of terms moves from ‘lunatic’ which completely defines a person according to their mental state, rather like ‘mental defective’, to labels which put ‘people’ first and the condition second – like ‘people with learning disabilities’ or ‘people with mental health problems’. The message is that they are not only ‘a problem’, they are also people. It is considered more humane to make the label secondary to what the person has in common with the rest of humanity.

Some people who have experienced care in mental health services go further than this. Founded in 1986, Survivors Speak Out is an organisation composed of ‘users’ of mental health services. They argue for the term ‘survivor’ because it switches the location of the problem from the person to the operation of the health and social care system itself.

Words can carry very different messages, and that is why the question of what people are called is often the subject of heated debate.

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3.2.1 Ever-changing labels

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

A few years from now, there will undoubtedly be new labels for people with learning disabilities and mental health problems, and other groups who are seen to need care. This is because new labels which are intended to de-stigmatise get contaminated by some of the negative attitudes attached to the condition they are describing. Thus ‘sub-normal’, introduced to replace ‘mental defective’ in the Mental Health Act 1959, is now seen as a term of abuse. At the time, however, it was seen as a way of emphasising a change in official policy away from segregated hospital care to care in the community. Even as we write, we are aware of controversy about the labels used to describe people with learning disabilities. People First, an organisation representing people with learning disabilities, prefers ‘people with learning difficulties’. Rescare, an organisation representing parents who want to retain hospital care, prefers to use the term ‘mentally handicapped’, because they believe the terms ‘learning disability’ or ‘learning difficulties’ understate the very real needs for care and protection their sons and daughters have.

There will probably never be an end to this contest about the right terms to use. What is important is to be aware of the ideas they carry with them.

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3.3 Care: a contested word

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

You have seen that the words used to label people who are seen as needing care can stigmatise them. By picking them out as unlike ‘normal’ people, people who do not need care, they can feel belittled, de-humanised and deprived of respect. But it is not just the labels like ‘mentally handicapped’, ‘lunatic’ or ‘mentally ill’ that are at issue. ‘Care’ as a word is itself under attack:

The terminology used in this area is important because it colours non disabled people's attitudes to disabled people and their needs … ‘Care’ is being rejected by growing numbers of disabled people because it … relates their needs to a society which treats them with compassion rather than to a society which respects their civil rights.
(Kestenbaum, 1996, p. 6)

In other words, some disabled people are arguing that to be seen as a person in need of care is demeaning. It suggests dependence rather than interdependence, inequality rather than equality, charity not rights. They are saying that ideas about disabled people being citizens with basic rights, rather than pitiful objects of charity, need to be reflected in the language we use.

‘Care’ is a word that is not going to be abandoned overnight because some disabled people dislike it. It is enshrined in legislation, such as the National Health Service and Community Care Act 1990, the Carers (Recognition and Services) Act 1995, and in high profile government policy like the National Strategy for Carers. And it is hard to think of another word which does not have problems of its own. But it is important to remember, as you meet the term, that care is a word that carries a lot of meanings, and that for some people those meanings are negative.

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3.3.1 Care: a cautious definition

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

For study purposes, we do need a definition of care, just as we needed a definition of informal carer. So we propose that in the context of health and social care we define care as:

something that is needed when people cannot function in daily life without the practical help of others.

But, as I have shown, care is a loaded word. It is both a word used by ordinary people to mean love, tenderness and protection, and a word used by professionals to mean a range of tasks concerned with supporting people who cannot function without the help of others. It is associated both with medical care and with support to people in living normal lives. And it is, to some people, a term which, when applied to them, is belittling and demeaning. It is a word we have to use, for lack of good alternatives. But it is a word to use with care!

Key points

Care is both love and work – caring about and caring for. Sometimes the two go together, but this is not always the case.
Labelling people as being in categories who need care is a way of targeting benefits and support: it can also lead to restricted opportunities and negative attitudes.
Changing labels can help to change attitudes; and changing attitudes give rise to changes in language.

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Next steps

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

After completing this unit you may wish to study another OpenLearn Study Unit or find out more about this topic. Here are some suggestions:

If you wish to study formally at The Open University, you may wish to explore the courses we offer in this curriculum area:

Or find out about studying and developing your skills with The Open University:

Or you might like to:

Post a message to the unit forum, to share your thoughts about the unit or talk to other OpenLearners
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References

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

Care Sector Consortium (1992) Care Awards, Local Government Management Board, London.

Care Sector Consortium (1997) Review of the Care Sector Awards: Values and Principles of Good Practice and their Implementation, CCS, London.

Northern Ireland Statistics and Research Agency (1997) Northern Ireland Annual Abstract of Statistics, No. 15, HMSO, London.

The Open University (1996) K503 Learning Disability: Working as Equal People, Building Your Portfolio, The Open University, Milton Keynes.

Redman, W. (1994) Portfolio for Development: A Guide for Trainers and Managers, Kogan Page, London.

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Acknowledgements

The Open University — Thu, 07 Jul 2011 10:03:25 GMT

The content acknowledged below is Proprietary (see terms and conditions) and is used under a Creative Commons Attribution-NonCommercial-ShareAlike 2.0 Licence.

Grateful acknowledgement is made to the following sources:

Text: 'Dream parents': courtesy of Anastasia Lee-Harmony

Illustrations: Photographs 'Who are informal carers?' (top right): Ed Clark; (top left and bottom): John Birdsall Photography; Photographs for Activity 9: reproduced from A.F. Tredgold (1947) Mental Deficiency; Photograph of Shirley: Philip Hatfield Photography.

Unit Image

Mike Carroll, photos

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