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Keywords:

  • chronic illness;
  • the family;
  • diet-related medical conditions;
  • family relationships;
  • family practices;
  • gender

Abstract

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

This paper discusses the ways in which family practices and family relationships interact with the demands of diet-related chronic illness. It uses a study that examined the management of food and diet in families where one member had been diagnosed with one of two medical conditions: coronary heart disease (CHD) and coeliac disease (CD). The data revealed a propensity for family members, especially female partners/wives, to see the tasks and activities related to the special diet in terms of family practices rather than individual (patients’) responsibilities. These family practices could be seen to be gendered but also part of the ongoing lived experience of the family relationship. It is speculated that this is part of a desire for what Giddens has described as ‘ontological security’. Thus, the special diet tends to be assimilated into family practices in ways that promote a sense of continuity that is described as ‘normality’ or ‘leading a normal life’.


Introduction

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

Chronic illnesses vary considerably in seriousness or potential disability, but many are capable of being managed by the ‘patient’ him/herself within the normal course of everyday life. The patient, once diagnosed and treated (where necessary) for any acute phase of the condition, is often told that, provided they follow medical advice, they should be able to lead ‘a normal life’. In this paper I present data that illustrate the day-to-day and ongoing experience of managing chronic illness in the family setting. The illnesses are coronary heart disease (CHD)1 and coeliac disease (CD)2. Advice3 is usually offered to the person with the condition (the ‘patient’), although family members are sometimes invited to attend when the advice is given and encouraged to support the patient to follow the advice.

The term ‘chronic illness’ often means medical conditions identifiable more by their social consequences than by their physical symptoms or medical treatment. In Meg Stacey's words, ‘nowadays with infectious diseases far less threatening in mass terms, chronic illnesses have assumed a greater importance, and sickness has become a way of life, not a way of dying’ (1988: 143, original emphasis). The experience of chronic illness, for the patient and for the rest of the family, is, quite literally, an on-going lived experience (Anderson and Bury 1988, Williams 1984). There is a tension between the notion of being able to ‘lead a normal life’ and the requirement to follow medical advice. ‘Being normal’ implies not being ill, contradicting the need to follow medical advice. The ‘normality’ of ‘the family’ can be found within understandings and expectations that will have been developed, negotiated and refined over the course of family members’ lives together (Morgan 1996, Bernardes 1997, Atkin et al. 2002). Food and eating form a large part of the ‘normal’ but essential activities of families, across cultures. Equally, food and diet form a large part of advice related to CHD and CD. As a consequence, this study focused on the management of dietary advice within families where a member had either coronary heart disease or coeliac disease. I suggest that an analysis of the experience of chronic illness is incomplete if it does not acknowledge the influence of the family setting, not just as a location, or as a set of kin influencing and influenced by the experience, but as an ongoing process which constitutes and reconstitutes meanings on a daily basis.

Managing ‘family’ as ‘normal’

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

Whilst we all like to think of ourselves as somehow ‘special’, we also like to think of ourselves as essentially ‘normal’. Some part of that personal sense of normality comes from our own understandings of ‘normal family life’ (Bernardes 1997: 54).

Whilst many debates acknowledge the significance of the home and family as a location for care related to illness, the constitutive nature of the family for such caring is rarely addressed. I am suggesting that it is through the organisation, negotiation and construction of normal everyday activities that the meaning that care has for the family is manifested and sustained. Commenting upon the informal sector of welfare, Graham (1999) notes that ‘[t]he informal arrangements made for the care of dependent people emerge out of, and are embedded within, the routines through which families are reconstituted both day by day and generation by generation’ (1999: 287).

Finch and Mason (1993, 1999), who were concerned with responsibilities between kin, found that there were no precise norms or rules of obligation in families. Rather, they identified a process of interaction around care and support, which they defined as ‘developing commitments’, that operated through everyday activities and interaction to constitute relationships over time (1993). That is, rather than caring being a consequence of relationships, the act of providing care, especially if repeated routinely over time, creates the relationship.

Much of the (unpaid) work undertaken in the home involves care in different guises. ‘Caring about’ others can be seen as a (welcome) option for all family members. ‘Caring for’ others to ensure their continued health or to help them recover from (chronic) illness is frequently seen as a responsibility most appropriately undertaken by women, and in the home (Graham 1984, C. Thomas 1995, 1997). This is done routinely and is often seen as just part of the ‘normal’ task of running the home. The private domain of the home and family has consistently been seen as the ‘natural’ location of tasks and activities which are predominantly undertaken by women (Sevenhuijsen 1998, VanEvery 1997, DeVault 1991, Morris 1990, Oakley 1974, 1981). Whilst, however, gender is clearly a crucial factor, the process of conducting domestic tasks and practices incorporates the construction of roles that take their meanings from the nature and character of the family relationship.

Domestic tasks and activities continue to be seen as ‘non-work’ not just because they are not paid, but also because they are seen as born out of love and affection and are contained within duty and obligation (for example, see Morgan 1996, Leonard and Speakman 1986, Graham 1983, 1984). Bringing together family members for the family meal is seen as ‘doing family’ rather than an event requiring a wide range of skills and abilities (Bowlby et al. 1997, DeVault 1991). Equally, tasks ensuring the health, or responding to the illness, of family members are subsumed within assumptions about the caring nature of the family setting. Much of the social interaction which takes place in families also ensures the wellbeing – emotionally, physically, psychologically – of family members. The intrusion of the unexpected and the unwelcome, such as illness or disability, can mean considerable disruption to family life, sometimes permanently (Bernardes 1997). Nevertheless, families, faced with adverse contingency, may make strong attempts to maintain the characteristics of their ‘normal’ family life.

I am suggesting that the normality of the ordinary and the everyday is a consequence of the individual actor making sense of a world constrained by structural assumptions, and allows social meaning to emerge through day-to-day activities, rather than as a product of ‘discursive consciousness’ (Giddens 1991, Shilling 1997, Tucker 1998). Personal identity as individual, as gendered, as family, is established and sustained through an ongoing process of interaction. These acts of construction and re-construction create a continuous sense of ‘ontological security’; meaning a desire for the continuity of self-identity and the reliability of social life over the lifecourse and across different settings (Giddens 1979, 1991, Shilling 1997, Tucker 1998). Giddens (1991) suggests that ontological security is achieved through taken-for-granted awareness of social rules and norms that seem simple, but embody complex, culturally-specific knowledge. People monitor themselves and others, not just through taking part in everyday activities, a family meal, for example, but also by the knowledge they have of their family meals generally, and interpretations of the behaviours being given off at any one family meal. The acting out of specific family events and activities routinely‘serves to construct and reinforce a sense of “being family”’ (Bernardes 1997: 90), and, as well, being male or being female, and being normal. This routinisation seems natural and normal and so renders invisible the ‘consciously crafted structure of family life’ (DeVault 1991: 78).

Food and the family relationship

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

Food and meals tasks tend to be construed instrumentally by those undertaking and receiving them. Whilst the affective meaning behind, say, cooking a special birthday cake, would probably be recognised, many acts of ‘caring about’ are taken for granted in the busy everyday run-of-the-mill business of getting on with life. Relationships between family members often tend to be evident in what people do rather than how they say they feel, and feelings are often expressed through ordinary everyday monitoring and ‘being with’ activities (Graham 1984). Activities around food, whether the practical aspects of producing family meals or the communal aspects of eating a meal together, fulfil two roles. They may be a convenient way to achieve regular nourishment, but they provide also a vehicle through which family and individual identities are produced and reproduced day to day (DeVault 1991, West and Zimmerman 1991). A ‘healthy diet’ has come to mean something beyond its component properties, by implying behaviour which is in balance and in moderation (Lupton 1996). Expectations about ‘appropriate’ behaviour, whether mothers in families or sick people in families, assume an independence of choice that ignores the constraints and demands of social settings, and the role played by food and eating practices.

The home and family, as a location for individual and collective consumption, is part of a process of transformation of social facts into social meanings that are negotiated, often contested, but ultimately produce family identities and relationships (Valentine 1999, Lupton 1996). Activities around food, meals and eating have been seen, amongst other things, to embody family identities. Murcott (1982), some time ago, suggested that ‘the cooked dinner . . . symbolises the home itself, a man's relation to that home and a woman's place in it’ (1982: 693). This continues to be the case as a concept despite evidence that it is disappearing as a reality (Murcott 1997, Sullivan 2000).

Although the literature has recognised the influence of activities around meals and eating in the family setting (DeVault 1991, Charles and Kerr 1988), this has not been the case when considering the experience of chronic illness. Work by Graham (1984, 1999) and by Thomas (1995, 1997) has drawn attention to the significance of the nature and form of domestic work to the monitoring and maintenance of health within the family setting. Much of the research on the experience of chronic illness has acknowledged the impact upon the home and family of the incidence of illness (Bury 1982, 1991, Williams 1984). It has also recognised that it is frequently, if not exclusively, women who have had to bear the burden of caring for the chronically ill in the home (see Anderson and Bury 1988). Nevertheless, what has not been identified is ways that the constitutive nature of the family contributes to the form, function and meaning of illness experience in the home. It is the everyday that offers the opportunity to reconstruct or reinterpret social identities. Activities around food and eating provide a language for that discourse. Within families the language of food and eating derives its strength through the repetition of the routine and the expected. Ill health is both unexpected and unwelcome and can test the fabric of normal family life.

The study

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

The aim of the study was to explore how family members managed tasks and activities around food and meals when having to deal with a diet-related illness. A qualitative approach was chosen as the most appropriate to explore social processes that create and sustain individual and shared meanings that are dynamic, interactive and contextual (Gilgun 1992, Mason 1996, Shakespeare et al. 1997, Silverman 1997, Seale 1999). The study employed in-depth interviews that were taped and fully transcribed.

Two medical conditions were chosen that, diagnostically, were very different: coeliac disease and coronary heart disease. The coeliac group had a little-known condition, with a purely dietary treatment, whilst the coronary heart disease group had a well-known and widespread condition of which dietary advice was just a part of the treatment. Despite these differences, however, both conditions usually result in the recommendation that a dietary regime be followed for life. So, once stabilised, these conditions can be considered to be ‘chronic’ rather than ‘acute’. This means that the potential dangers from the diagnosis are present for the life-time of the patient, but, with careful management, the risks should be reduced considerably.

An important difference between the two conditions is the diet itself. Coeliac disease requires the exclusion of gluten from the diet completely. Gluten is found in food which forms a major part of contemporary Western diet, including bread, pasta and biscuits, as well as unexpected products such as sausages. This diet is very different from that of the general population, and creates major dilemmas for the creation and production of meals, especially in families, despite the availability of specially produced gluten-free foods. In contrast, the dietary requirements associated with coronary heart disease are similar to those recommended to the general population as ‘a healthy diet’, centred on the lowering of cholesterol specifically, and controlling weight generally, as found in much public health policy.

The study focused on the person in the family most likely to be affected by a member's change in diet, that is the person taking main responsibility for food and meals, i.e. cooking, all aspects of meal preparation, as well as planning, shopping and provisioning. This did not presume the person to be female or male, and, in fact, task allocation often involved sharing in different ways. Nevertheless, it was usual, in this study, to find that it was mainly female partners who took overall responsibility for these tasks. There were just three couples who might be described as reversing these roles; that is the male partners took full responsibility for all decisions over, and the conducting of the provisioning and meal preparation tasks.

The study was located in the south of England and participants were recruited through a number of medical and health professionals and the co-ordinator of a medical condition support group, who approached participants on behalf of the researcher. A symmetry of gender and medical condition was planned with a target of 20 families with a member with CHD (ten male and ten female) and 20 families with a member with coeliac disease (ten male and ten female), from which would be recruited the person mainly responsible for food tasks. In the event, whilst it was relatively straightforward to recruit people from families with someone with CD and those with men with CHD, there were considerable difficulties in recruiting people from families with women with CHD. Also, whilst in some families just the person responsible for food and meal tasks was interviewed, in a number of families, the couples preferred to be interviewed together. This was, in fact, found to be advantageous in that a dialogue between members of each couple often revealed interesting nuances in their views. The final number of people interviewed was 61 people in 41 families, the breakdown of which is indicated in Tables 1 and 2.

Table 1. Number of families by sex and condition
Sex of participantCD groupCHD groupTotal
Male101323
Female12 618
Total221941
Table 2. Number of people interviewed by condition, sex and spouse
ParticipantsCDCHD
Males
Patient 611
(female) spouse1113
Totals1724
Females
Patient126
(Male) Spouse 12
Totals138

As can be seen, in the families where the patient was male, more (female) partners took part in the interviews. That is, in the CHD group, eleven couples were interviewed together and only two home managers4 were interviewed alone; in the CD group, six couples were interviewed together and four home managers were interviewed alone. In contrast, in the families where the patient was female, fewer (male) partners chose to be interviewed: in the CD group only one couple was interviewed together, with 11 home managers interviewed alone; in the CHD group, two couples were interviewed and four home managers interviewed alone.

Other characteristics that allow a fuller picture of the people who took part in the study are age, employment and whether they had children. Table 3 shows the age range of participants, which, not surprisingly, shows a broader range in the CD group than the CHD group, as heart disease tends to be found mainly in older age groups.

Table 3. Age range of participants by condition
 25–3435–4445–5455–6465+Total
Coeliac Disease16 712 430
Coronary Heart Disease 4 91932
Total1611212362

For the purposes of this study it was not essential to the notion of ‘family’ for participants to be formally married or to have children. In fact, all participants were in heterosexual relationships and in only five families were there no children, as shown in table 4. It is, however, interesting to note that participants from these five nevertheless described regular interaction with children from their extended families.

Table 4. Families with and without children (children still in the family home)
 Coeliac diseaseCoronary heart diseaseTotal
No children 2 3 5
Children (still at home)20 (7)16 (2)36 (9)
Total221941

More people (who had the condition) in the CD group were in paid employment (14) with eight not employed, compared with the CHD group with three employed and 16 unemployed. Again, this is not unexpected as coeliac disease is a condition that usually leaves people better able to remain in employment once diagnosed. Despite the small-scale nature of this study, these participants reflected the full range of social class differences. Most notable was, in fact, not occupation but a high level of part-time paid employment among the female participants. The study was designed to allow the inclusion of people from all ethnic backgrounds provided they spoke English; just one participant came from a minority ethnic background (South Asian).

The analysis of the data was undertaken using general and thematic coding of transcriptions, overviews taken from fieldnotes and through a process of constantly returning to the transcripts and tapes to check detail. Conceptual themes were constructed with the raw data kept to the fore, but moved forward, through the distillation of working themes, to overarching concepts. This analytical strategy had the advantage of containing the search for illustrative or exemplary quotations within the constraints of the emerging concepts, whilst allowing the identification of an abstract conceptual framework grounded in data.

Findings

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

The data that follow will show how people with two contrasting medical conditions (and members of their families) seem to have preserved a sense of continuity through the disruptive process of attending to medically-recommended dietary advice. It was not the intention of this study to determine how successful these people had been, but to explore the hitherto largely invisible social context within which these experiences take place. Tasks and activities within the family, whilst essential for the smooth running of any individual family group (and society at large), are also a fundamental part of the daily (re)constructing of identities of family members (and for members of society). The requirement to follow a dietary regime after being diagnosed with a medical condition draws attention to the tacit but regular and routine roles and rules that construct family life. The process of becoming ill and becoming well will be shown within the context of family relationships, with the interplay between gender and the family relationship seen to underpin the ways family members dealt with the intrusion of illness. An overarching theme of ‘normality’ has been identified as a yardstick against which family practices, whether routine or novel, were conducted.

Being healthy – not being ill5

‘. . . Before then he was never ill. He has always been such a strong fit man. Never ill. Hates going to the doctor's. Hates taking tablets. Absolutely detests it. He is just one of those people that it never happens to him, it is always other people’ (Mrs Calman CHD M)6.

This section traces reactions to symptoms; the ways in which symptoms and risks were managed, ignored, accepted and the process of diagnosis. The diagnosis of a medical condition might be seen to mark the turning point between the experience of symptoms and the experience of treatment, but imposed upon a set of ongoing experiences and meanings which are the family relationship.

Mrs Calman (CHD M) described her husband as shocked after she had persuaded him to consult the doctor about the chest pain he was experiencing:

Mrs Calman: Yes, I drove him up there. He walked quite happily to the assessment unit and they did an ECG and said ‘you have actually had a heart attack’. Which I think was sort of more of a shock to him than me.

Int: But you were pretty sure?

Mrs Calman:  Oh I was pretty sure yes. I was almost sure what had happened.

Int: And did he have an explanation for the pain?

Mrs Calman: He kept thinking he had pulled a muscle or strained himself, because he does a lot of heavy lifting at work so that is what he put it down to. But as I say it was when she [the doctor] said it was indigestion and I thought ‘no it is not’. I left him and he was taking these tablets and I thought ‘What is going on, you must go back, I think it is angina’. But I don't think at that stage he realised that angina could lead to a heart attack. I don't think he did. It wasn't until he got home and I started explaining it and we started reading about it that he then realised . . .

Mrs Calman described how she took a great deal of trouble to help her husband eat well. He had been a smoker with poor eating habits when his wife was not at home to cook the meals, had high cholesterol and a family history of heart trouble. It was clear that she had seen monitoring his health as her responsibility for some time before he became ill.

Those with CD were more likely to describe a lifetime of uncomfortable, sometimes severely distressing, symptoms, although some only recognised the life-long nature of their symptoms in retrospect. Some chose to identify themselves as ‘not ill’ despite quite disabling experiences, such as severe diarrhoea resulting in being house bound, or regular vomiting after every meal, both associated with weight loss or long-term low weight. Mrs Kelner (CD F) was particularly vivid in her description of how ‘you never know you are ill until you kind of collapse all over’. This view had been encouraged by her doctor –‘she had never thought I was sick. Because you are not lying on a bed and not taking time off work, you are fine’. Mrs Kelner was an articulate professional woman who had suffered disruptive symptoms throughout her life. She had been prescribed folic acid for 10 years before the diagnosis of CD, because blood tests regularly registered her as anaemic. She had made her own connections, since her diagnosis, between the condition and the loss of two babies, one stillborn and one shortly after it was born. In all of this, neither she nor her GP saw her as ‘being ill’. In fact it was her partner whose increasing concern led him to press her eventually to further referral.

Mrs Lawton (CD F) also had had a lifetime experience of non-diagnosed symptoms and which had affected her pregnancies. She had had two children, but she had also had one child still-born and four miscarriages. Her last pregnancy at the age of 37 was unexpected and the most problematic full-term pregnancy. These problems continued after the birth:

Mrs Lawton: He was fine. But after he was born I was terrible as regards . . . I had this problem, bad, I was forever-lasting running to the loo, all the time. I can remember in the morning when he was like a tiny baby and I would be bathing him and we never had a cloakroom downstairs then and I would have to tear off to the toilet. I just used to take him out of the bath, wrap him in a towel, put him in the carrycot, while I tore off to the loo and he was only like a few weeks old. And then I would come back and carry on again and then I would have to tear off again and do the same again. I had quite a few weeks like that and I went to the doctor and told the doctor and still he did tests and couldn't find anything wrong and then it passed. . . .

According to Mrs Lawton, her husband had, traditionally, never been involved in culinary activities. This did not change much when his wife's symptoms grew worse:

Mrs Lawton: Yes, it was a terrible struggle it really was, to do it. He used to wash up for me . . . 

These examples show that, within the family, well or ill, members are also mother, father, spouse, child, but these identities do not always allow concessions to be made for illness. In this light, denial by the person with the symptoms (or risk factors) or by other family members, especially with a lack of formal diagnosis, can, perhaps, be understood.

In contrast, in some cases, seeking medical help, as with making changes, was enabled by other family members. In both medical conditions, a number of those interviewed mentioned a partner pressing for further help from medical professionals. Mrs Calman and Mrs Kelner have been mentioned. Mr Flow, was part of the CD group but, it transpired, had also had a heart attack, and described the lead up to his diagnosis:

Mr Flow: Yes I felt really bad. And of course . . . I think it was the Tuesday after that, I went and saw her on the Friday, and my own doctor was away at the time, and on the Tuesday morning I felt bad in the morning, I didn't want to get up and she [Mrs Flow] said ‘I can send for the doctor’. But I said ‘No, don't bother’. She said ‘I am going to’. And my daughter came and insisted as well. So they sent for the doctor and he examined me and said ‘Right we will get you into hospital . . .’

Mrs Calman (CHD M) had had a major influence on the diagnosis of her husband's heart condition. When the GP diagnosed indigestion in response to her husband's description of chest pains, she described taking the situation into her own hands: ‘. . . a fortnight later it was no better so I sent him back because I had my own suspicions it was angina . . .’. She explained her reasoning: ‘. . . Because I know what he is like. He doesn't describe things properly to doctors and I had seen him so I guessed what it was. I sent him back’. She took this even further ‘. . . Well, I actually phoned her [the doctor] up. I said I know what he was like and he doesn't describe things properly so I actually told her the symptoms and she agreed with me’.

These examples show how potential illness could be ignored, but also how other family members could influence diagnosis. For many of the participants of this study, the disruption caused by the intrusion of illness was not a clearcut change from wellness to illness. The characteristics of the illness, together with the social meaning through which the participants construed their lives, found them choosing to ignore indicators (symptoms or risk factors) of the presence of (potential) illness. The family relationship can be seen to be a major influence upon how the participants made the movement from ‘being healthy’ to ‘being ill’ without disrupting too much the state of ‘being normal’.

Being ill – being normal

. . . since I have been what you call being ill (Mrs Hulse CHD F).

This section describes attitudes towards and dilemmas around the illness, the diet and the repercussions encountered after diagnosis. The tension in reconciling normality and illness is shown through descriptions of the feelings of both patient and spouse. A number of participants (both CHD and CD) reported that medical practitioners had said that they would be able to ‘lead a normal life’. Family members who had to deal with the CD diet often mentioned that it took about a year to come to terms with all aspects of it. This involved learning the prescription system, identifying gluten-free food when shopping, finding out about the new ways of cooking, and other practical activities. Nevertheless, most seemed positive about the mechanics of the diet. For example, Mr and Mrs Unwin (CD M) agreed that: ‘. . . it was plain sailing once they diagnosed it . . .’ as did Mr and Mrs Bain (CD M): ‘Yes, we found the adjustment reasonably straightforward. Certainly at home: Mrs Smythe had to deal with her own diagnosis of CD, as well as her husband's heart disease’. When asked about dealing with two diets responded: ‘. . . I have got used to them. If they had both come at once that would have been more difficult, but after five years [her husband's illness] we have got used to it’. Coming to terms with the condition and the new diet in a positive manner are summed up in her final words: ‘So I think you have just got to smile and get on with it’.

Those with CHD rarely said the diet was daunting, with the main problem being to avoid foods seen as ‘naughty’. The notion of ‘a healthy diet’ was one that all CHD participants aspired to, some feeling that they had, in fact, achieved this even before the advent of the heart disease. For example, Mr Royle (CHD M) felt that: ‘As a family we were very sensible because we never ate junk foods, we never brought that’, and Mr Howard (CHD M) was sure that: ‘. . . we have always been health conscious and we have always watched what we have eaten in the last few years, like everybody else’. This couple identified the influence of their own ‘health conscious’ children in the improvement of the family diet.

This positive approach was conveyed through a sense of ‘being normal’. This was explicit in some cases, but could also be inferred through the idea of ‘not being different’. Mrs Clarke (CD M) said: ‘But what I try and do is not make him feel that he is different to us or remind him’. In a similar vein, Mr Garside (CD F) pointed out, about his wife's diet: ‘as far as I am concerned anyone who comes here I can sit anyone down at the table and I give them a meal which they would enjoy and which Maureen can eat and nobody will know the difference or that Maureen is on a diet . . .’.

Mrs Nayme's (CD M) description of her husband's reaction to feeling different is, perhaps, the most telling:

Mrs Nayme: Yes, you see he is terribly embarrassed by it all. He hates the fact . . . I mean, we joke, the biggest joke was David would say ‘Well I am the one who is normal, it is the rest of you that are wrong’ and when he was diagnosed the kids just said to him ‘Who is normal now? We are normal, you are the one that is not’. And that is his philosophy on life, he wants to be normal. So therefore, in a situation where he is the odd one out, he loathes it, he hates it.

The desire to appear normal and unchanged by the intrusion of a disease was also evident in the assertions made by participants about a ‘return’ to normality after a period of adjustment. Mr Scruton (CHD M) drew attention to the need to return to a normal life, whilst at the same time recognising the daunting nature of this aim: ‘Oh yes, without a doubt. Return to your normal activities as quickly as possible . . . It is a challenge. You are either prepared to accept the challenge and live as you did, or you are prepared to say, well, I am going to shut myself away in cotton wool . . .’ Mr Scruton's approach is resonant of the concept of ‘fighting’ the disease (Bury 1991, Pinder 1988), but also uses ‘what went before’ as a yardstick for what should come after.

Despite the fact that many participants claimed that the new diet had become a way of life, a number, like Mrs Wheen (CD F) admitted that ‘Yes, and it can get you down if you let it, but I won't let it. It did the first year, I mean I was very frustrated in the first year, but not now’. But she also confessed that ‘Oh yes, you have got to think about it all the time, but it becomes a way of life, and that is your life’, again revealing the tension between normality and illness as a way of life.

Roles, reversals and dilemmas

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

I have argued that, through (often tacit) negotiation and construction of normal everyday activities, these couples have sustained a meaning for the term ‘family’ in which caring is implicit. Most the examples offered in the previous two sections suggest underlying assumptions about the conventionally-gendered nature of ‘caring for’ in families. However, whilst a gendered view of caring tasks pervades most of these couples’ family practices, it also emerges that this view can be transcended. Three couples in this study overturned this convention; in two cases on pragmatic grounds, that is, because the male partner had more time available after they had retired. In this section the role reversal in domestic tasks is explored.

Mr and Mrs Rice (CHD F) were one of the more unusual examples of couples negotiating a path between relationship and health needs, with the husband taking over food responsibilities at the beginning of the marriage relationship. When they had married 12 years earlier, they had agreed to reverse roles because he had retired and she was continuing in employment. Since Mrs Rice's retirement her husband had remained the person in charge of shopping and cooking. Her heart attack had increased her desire to make changes to her eating patterns with little response from her husband:

Int: . . . So you are having to negotiate [with her husband] these changes in your diet . . . ?

Mrs Rice: Yes. But it is OK because we can vary it a bit. But you know, that is John's realm I think and that is his role and I have to get over his feeling slightly hurt if I don't eat what he eats. But since I know that it would be good for him, if he didn't eat so much and because I certainly know it would be for me I am sticking to my guns a bit . . . 

Later

Mrs Rice: No. It is quite interesting the power struggles that go on . . .

Here and in other parts of the interviews Mrs Rice expressed her frustration over her desire to follow particular eating patterns, to which her husband was less than sensitive. Nevertheless her reluctance to express this forcefully to her husband, or even state it clearly in the interview, was also evident. It seemed that the need to maintain recognised patterns of responsibility and control within the relationship vied for priority with her desire to attend to her own dietary needs.

She also betrayed a wistfulness when she regretted not being allowed to do the cooking now that she was retired:

Mrs Rice: Oh it was – well, my husband really had taken over the cooking and he likes doing it, so it was something he could do.

Int: So does he still do that now?

Mrs Rice: Yes I would say he does – and then of course I have had various illnesses you see, I have had the business of the leg, I had a hysterectomy, I had the glandular fever, I had the heart attack, and he enjoys taking over and doing it really. I mean I do lots of other things and he likes cooking rather than being cooked for.

Int: Oh, right, that sounds wonderful to me.

Mrs Rice: It is a kind of little element of caring that you rather miss, because I enjoyed doing that for my brother, but he doesn't like – he likes the roles reversed in that respect. It is quite convenient so I just give up.

Mrs Rice had relinquished her cooking role (which she had undertaken for herself and her mother and brother) for practical reasons when she was first married. Mr Rice had begun to cook during his previous marriage, when he retired from work to nurse his first wife through her final illness. This case seems to describe circumstances which go beyond merely justifying the transgression of conventional family roles. Mrs Rice had, in the past, been able to indulge her ‘little element of caring’ when catering for her mother and her brother. Although now retired and more in a position to undertake this role, she did not feel able to because of the role reversal established when she was first married. This, despite the fact that her husband's choice of food was not her own. She also revealed a concern over how (un)healthy her husband's choice of food was for him as well as herself:

Mrs Rice: . . . I have read all the leaflets assiduously, I have followed the very good [hospital] ex cardiac problem course { . . . } because I had been following all the advice on high fibre and lots of fruit and lots of vegetables and brown bread, all my life more or less, so I was there really. My husband, I don't know where I slip this in, he is overweight and has high blood pressure, so he ought to follow a similar diet and, generally speaking does, though he does differ.

and later

Mrs Rice: . . . So as far as me looking after him by saving him from himself, I have given up.

Mrs Rice reveals the double dilemma of trying to conform to a togetherness of eating the same food as her husband, something she knows he would prefer, but also the desire to improve their nutritional intake, something he does not seem to want to take on board.

Another role reversal example is that of Mr Cotton (CHD M), who had been pressured by his employer to retire after his heart surgery. He and his wife decided to make major changes to their lives. Mrs Cotton developed the part-time employment that she had begun when their children reached their teens into full-time work, whilst Mr Cotton experimented with baking as well as providing regular meals. His descriptions of how he and his wife came to this arrangement showed a background with a very traditional division of family responsibilities:

Int: . . . so the two of you would arrive home at the same time most of the time, and so, before you retired, has much changed in terms of who did what in the kitchen?

Mr Cotton: Yes, she used to cook most of the time. We had a method of . . . When we had children we thought that Sandra's place was at home with the children. And, in effect, the job she has now, my youngest daughter – she is 26 – she had the job first, and after I retired, we decided that she should take over. She manages [the shop] now and loves every minute. So for a long time for a period in her life she was at home.

This decision to reverse roles took place despite a long relationship which had operated on a traditional assumption about who should care for the children. Earlier in their marriage Mrs Cotton had given up a job in a bank (in which she had risen to the position of supervisor) in order to care for their children.

Role reversal might be described as the least conforming to a traditionally gendered division of domestic labour. Nevertheless, this case had followed a conventional path through family life until specific events triggered a decision to change. For Mr (CHD M) and Mrs Cotton, early in their marriage, before the children had arrived, they both worked full time ‘. . . and the first one in was to get the dinner, start the dinner’. When they came to reverse roles, Mr Cotton said he did not see taking over from his wife in this respect as a radical change because he ‘. . . had always dabbled’. Thus a bridge was built between past and present to explain and minimise the level of change that had taken place.

Unlike Mr Rice and Mr Cotton, Mr Garside proved the exception to waiting until retirement to reverse roles and undertook most of the meal planning and preparation whilst he was in full-time employment. His wife explained that he rather enjoyed cooking and that he had trained as a chef in an earlier career. Comments made by Mrs Garside also suggested his considerable concern over his wife's health (coeliac disease aggravated by an ulcerated colitis) to which his chef's training could usefully contribute.

Mrs Garside: . . . he does breakfast in the morning which is two small pieces of toast of this coeliac bread and scrambled egg, so I have got something substantial and with nutrients and without anything that would kind of over-aggravate.

And later

Mrs Garside: Yes, but he has taken over because he feels that he can keep . . . What he wants to do is to make sure that I am eating some kind of protein and he will stop me if he sees me going to the fridge and perhaps pigging out on something!

In the examples offered in all three sections, the gendered nature of caring is very clear, with active intervention in the process of diagnosis, or the treatment, most notably instigated by female partners. However, it also seems clear that this is not simply a matter of women doing caring and men not doing caring in the home. The concern and support from male partners is in evidence here. The discussion that follows draws out meanings conveyed through these descriptions and explanations of everyday activities (i.e. tasks and activities around food), particularly how changes have been facilitated or prevented.

Discussion

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

The aim of this study has been to explore how members of the participants’ families managed dietary recommendations within their ordinary everyday lives. At the outset it was assumed that there would be a tension between ‘leading a normal life’ and adjusting specific lifestyles as ‘treatment’. Activities in the home represent an on-going process of maintaining continuity whilst accommodating change along the lifecourse, and this study has revealed the part played by simple family tasks around food and meals in the understanding of complex social processes. The study was built upon previous research (Henson et al. 1996, 1998, Murcott 1998, Gregory 1999) that recognised the significance of family processes for the management of diet change, and it was assumed that this study would reveal gender differences in both action and understandings concerning chronic illness. This study has revealed that, in family relationships, gender remains an important part of how people accommodate the unexpected (a new diet) into family practices. It has also shown how gender can only be part of the story and that both the practical and the ‘caring about’ can overturn conventional gendered roles.

Despite the fact that ‘the family’ has attracted criticism related to oppression, abuse and manipulation, it is still seen, and used, as the expected, the normal, form within which most people will live for large parts of their lives. The family is not just what people are, but what they do, with, to and for each other, on a day-to-day basis and contingent upon events often thrust upon them rather than chosen. There is a consistent theme that can be traced through all of these participants’ contributions which suggest that constructions of the family relationship display a gendered nature which relies upon notions of the natural and the normal to sustain it. But, for these participants, gender roles were not set in stone, and contingency played a significant part in the ways in which domestic activities were undertaken.

The better to understand the constitutive nature of family practices for individual and group identity and agency, it is useful to follow Morgan's suggestion that ‘the family’ be seen as a process rather than an entity (1996, 1999). I would like to go on to suggest that the term ‘family relationship’ suggests a processual acting out of everyday, sometimes mundane, domestic tasks and activities that constitute individual and family identities, through understandings of ‘the normal family life’.

Even within the context of the diagnosis of a medical condition, there is likely to be a desire, at least to try, to restore a sense of ‘the normal’, with the maintenance of ordinariness paramount in the goal of achieving ‘a normal life’ (Prout et al. 1999). ‘Normality’ can become a significant factor in how people choose to respond to illness in the family setting. Within the context of this study, normality might be seen as ‘the same as other people’, but also ‘the same as what went before’.

The onset of illness, whether sudden or gradual, has the potential to challenge views about gendered roles and responsibilities, but, notable in this study was that these participants found ways of preserving a sense of normality through the family relationship. The participants did not have to express a desire for predictability over time because they could assume this through the acting out of their daily domestic tasks and activities; an ontological security offered by these routine and repeated family practices.

The sense of ‘naturalness’ associated with gendered caring specifically in the home involves ‘being with’ aspects of family life that allow awareness of family members needs and preferences to be built up overtime. These observing and monitoring aspects of family relationships provide a major, but largely silent, part of family negotiation. At the same time these actions create and reinforce the sense of ‘being a family’ in ways that are described and prescribed by society at large. The enduring image of ‘family as natural’, which has survived academic critique and lived diversity, does so through the ontological security of ‘gendered caring as natural’ and ‘family relationship as normal’. Thus, whilst each family relationship may ‘negotiate’ the minutiae of their individual family practices, this will be conducted through the everyday lived experience, and accomplished tacitly rather than explicitly.

The suggestion that gender continues to provide a major contributor to the shaping and operating of family relationships has been born out in these data. However, it also seems clear that the participants understood personal identity, in many ways, through what they did and who they did it with within the family relationship, rather than simply what they were. Personal identity and family identity combined in the form of, say, wife, husband, cook, carer, but allowed contingency to overcome traditional gendered assumptions about domestic roles in ways that could be seen as acceptable and not transgressive.

The participants in this study accommodated the intrusion of chronic illness by relying upon an understanding of both personal and family identities for which gender was just one (important) factor. The relief that many of them expressed at being able to continue with a lifestyle that was manageable and (seemingly) involved little change, or inconvenience, was often couched in terms of the welcome ordinariness and normality of their lives. Dealing with illness in the family setting could be seen to be a juggling of what went before, what the illness required, and how a sense of change could be minimised.

Over the course of the study, it became clear that the ‘family relationship’ was important as a location for social life, but equally for its constitutive role. The participants in this study were aware of gender expectations attached to domestic tasks and activities and none had made changes in order to challenge these expectations. Nevertheless, changes were made that, in a few cases, involved gender role reversal. In most cases, however, participants found ways in which the demands of the recommended diet could be accommodated without challenging existing roles and arrangements.

This study has provided a useful contribution by identifying the ‘the family’ as a powerful social institution which endures through the dual purpose of the functional and the constitutive. The organisation of family life can be seen to be conducted through a process of normalising family practices which are construed as predictable and stable, whilst encompassing change and uncertainty. It confirms ‘a sense of self as a product of the public roles that we play, not a cause of them’ (Tucker 1998: 77).

Family practices, as a means by which social life can be organised and understood, interact with gender and other factors (such as age and kinship), to produce the daily social encounters deemed necessary for social integration. These encounters may be regular and routine but they are not formulaic or inflexible. They provide the pivot upon which agency and structure interact to both constrain and sustain everyday life as ‘normal’. In this study the experience of illness and the requirement of the special diet generated demands upon family members that were variable in both actual and perceived difficulty. Those responsible for food and the special diet construed those demands within the context of existing family relationships so that, in Gidden's sense of ontological security, they could construct and lead ‘a normal life’.

Notes
  • 1

    Coronary Heart Disease: according to the Manual of Dietetic Practice: is a term which ‘represents a group of clinical disorders including angina pectoris, acute myocardial infarction and sudden ischaemic death. The pathological basis of CHD is atherosclerosis, a proliferative process which ultimately results in the narrowing of the blood vessels, subsequent impairment of blood flow and thrombosis. It is the concurrence of atherosclerosis and thrombosis which results in infarction’ (Thomas 1994: 475).

  • 2

    Coeliac Disease: according to the Manual of Dietetic Practice: ‘is a condition in which the lining of the small intestine is damaged by gluten, a protein found in wheat and rye . . . [which] impairs the absorption of nutrients . . . causing wasting and ultimately severe illness resembling malnutrition’ (Thomas 1994: 378).

  • 3

    For someone with coeliac disease this means following a diet that excludes gluten (found in wheat and rye). For someone with coronary heart disease this means paying attention to the major risk factors associated with lifestyle behaviour that contributes to heart disease, such as cholesterol levels, blood pressure, obesity and smoking. People with heart disease are encouraged to lose weight, give up smoking, eat a healthy diet and take regular exercise.

  • 4

    ‘Home manager’ is being used to describe succinctly the person mainly responsible for food and meals in the home.

  • 5

    For the purposes of this study, ‘being healthy’ is being defined as the absence of symptoms, and ‘being ill’ as the experience of symptoms legitimated by diagnosis by a medical practitioner. These definitions were formulated through participants’ descriptions of the experience of symptoms and reaching diagnosis.

  • 6

    Participants quoted have been identified by the (anonymised) name of the person, together with an indication of the condition (CHD = coronary heart disease or CD = coeliac disease) and an indication of the sex of the person with the condition (M = male and F = female).

Acknowledgements

  1. Top of page
  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References

I would like to thank members of RUHBC, Linda McKie, David Morgan and Hilary Thomas, as well as two anonymous referees for constructive comments on earlier versions of this paper.

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  2. Abstract
  3. Introduction
  4. Managing ‘family’ as ‘normal’
  5. Food and the family relationship
  6. The study
  7. Findings
  8. Roles, reversals and dilemmas
  9. Discussion
  10. Acknowledgements
  11. References
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