Companions through cancer:

Abstract

This paper explores the care-giving experiences of informal carers in cancer contexts, drawing on both quantitative and qualitative data generated in a 3 year study in the UK on the psychosocial needs of cancer patients and their main carers. The study adopted a sociological approach to psychosocial needs, in contrast to dominant psychological and psychiatric perspectives on such needs in psycho-oncology. Data collection methods involved a descriptive cross-sectional survey of carers (an achieved sample of 262 respondents, with similar numbers of male and female carers) followed by in-depth guided interviews with a sub-sample of surveyed carers (n=32). Key findings are presented in three sections: (i) the characteristics of the survey and interview samples; (ii) the examination of the care work undertaken by informal carers; and (iii), the exploration of the emotion work undertaken by informal carers.

Care work findings: additional care work demands were an important feature of informal carers’ experiences, although this varied with the stage of the patient's disease and with the presence of either co-morbidity in patients or morbidity in carers. Specific groups of carers expressed the need for help with particular practical tasks and with the personal effects of the burden of care work. Emotion work findings: carers of either gender worked hard to manage the emotions of the patient as well as their own feeling states, and these aspects of emotion work were intimately connected. Carers felt that they had to be, and often wanted to be, ‘strong’ and ‘positive’, and to try to maximise the sense of ‘life carrying on as normal’. In doing this emotion work, carers, especially spousal carers, often symbolically shared in the illness and presented the struggle with cancer as a joint one. A concluding section considers the significance of our findings for cancer service provision.

Introduction

This paper explores the care-giving experiences of informal carers in cancer contexts, drawing on both quantitative and qualitative data generated in a three year study entitled The psychosocial needs of cancer patients and the main carers.¹ It has long been recognised by medical sociologists and other health researchers that patients’ illness experiences cannot be understood as individualised, socially isolated phenomena (Anderson & Bury, 1988; Social Science and Medicine, 1990; Bury (1991), Bury (1997); Kelly & Field, 1996). Spouses, partners, other family members and close friends actively participate in shaping the patient's illness experience, and share in this experience. The practical and emotional involvement of these socially significant others in patients’ journeys through illness affects these companions’ own lives, sometimes in profound ways (Anderson & Bury, 1988). Particularly if they actively ‘look after’ people with chronic illnesses and long-standing impairments by undertaking practical care work tasks (‘caring for’) and/or by supporting them emotionally (‘caring about’), they are now commonly referred to as ‘carers’ or ‘care-givers’ (Thomas, 1993; Heaton, 1999).

Social scientists and policy makers often use the term ‘informal carer’ to identify those people who undertake care work for kin or friends on an unpaid basis in the domestic domain (Thomas, 1993). Particularly in the 1980s and early 1990s in Britain, a significant body of literature was produced by feminist and other researchers on informal carers (Finch & Groves, 1983; Green, 1988; Arber & Gilbert, 1989; Ungerson (1990), Parker (1993); Ungerson, 1990; Graham, 1991; Twigg, 1992; Twigg & Atkin, 1994). Feminists drew attention to the extensive and gendered character of informal caring—it was seen as work undertaken mainly by women—and highlighted the negative consequences for women's social position of community care policies that shifted the burden of care from the welfare state onto women's shoulders (Finch & Groves, 1983; Ungerson, 1990; Thomas, 1993; but see the critique by Morris, 1995). This research, together with other developments, most notably the growth of campaigning groups of carers pressing for their contribution to be politically recognised and practically supported, led to carers becoming established as a prominent group on the health and social care policy agenda in the UK (Heaton, 1999, p. 759). As a result the Carers (Recognition and Services) Act 1995 came onto the statute books (Department of Health, 1995a), implemented in 1996, followed by the Carers and Disabled Children Act 2000 (Department of Health, 2000a; see also Department of Health, 1999). In 1998 the Office of National Statistics estimated the number of informal carers in Britain at 5.7 million (ONS, 1998). What carers did, and the personal costs and needs involved in so doing, were widely socially acknowledged.

But does it make sense to talk of the spouses, partners, family members and close friends who ‘look after’ people with cancer as constituting informal carers? The enduring cultural image of cancer is of an acute and deadly disease that acts swiftly to end life. From this point of view the care role, at least in the care work sense, is one of short duration. However, the reality of cancer is otherwise. Whilst it is the case that cancer mortality rates remain obstinately high in industrial countries, cancers are now seen within medicine as a set of differentiated diseases with very variable rates of cure (WHO, 1998). Lung cancer, for example, does fit the cultural stereotype—it has a very poor prognosis and is likely to lead to death not long after diagnosis (Coleman et al., 1999). Hodgkin's disease, on the other hand, has a high survival rate: 72% at five years in 1986–90 in England and Wales (Coleman et al., 1999). Breast cancer is somewhere in-between with a survival rate averaging 66% at 5 years (1986–90, England and Wales) (Coleman et al., 1999). The duration of periods in which illness symptoms are experienced, and of active treatment, is therefore variable for different types of tumour, and may last for some years. And there are increasing numbers of people in the population who no longer experience illness symptoms but are in remission rather than ‘cured’ of cancer, prompting Arthur Frank to speak of our ‘remission society’ (Frank, 1995, p. 8). All of this means that, once diagnosed, cancer patients often carry their patienthood status for long periods of time. During what is referred to by many in the cancer services as the patient's ‘cancer journey’, there are likely to be times when levels of impairment are relatively severe so that informal care work is required, for example, whilst undergoing chemotherapy, surgery or palliative care. In addition to periods of informal care work, a cancer diagnosis also initiates a more continuous patient need for high levels of emotional support, for being ‘cared about’. Precisely because cancer is culturally perceived to be a life threatening disease, people in close personal relationships with newly diagnosed patients have little choice but to engage in difficult emotion work (Hochschild, 1979; James, 1992; Bendelow & Williams, 1998a)—both to help the person with cancer and to cope with their own distress. Thus it is certainly appropriate to use the term informal carer for people who undertake both care work and emotion work for their spouse, partner, family member, or close friend with cancer.

In the UK, alongside the growing policy awareness of the valuable role played by informal carers in the community in general, there has been increasing recognition in the cancer services of the importance of informal carers—both as supporters of cancer patients and as people who have cancer-related psychosocial needs of their own. This is well expressed in the influential Calman–Hine Report (Department of Health, 1995b), the recommendations of which are currently re-shaping cancer treatment services nationally, and in the Department of Health's recently published The NHS Cancer Plan (DoH, 2000b):

The development of cancer services should be patient centred and should take account of patients’, families’ and carers’ views and preferences as well as those of professionals involved in cancer care. Individuals’ perceptions of their needs may differ from those of the professional (DoH, 1995b, p. 6).

Patients, families and carers need access to support from the time that the cancer is first suspected through to death and into bereavement (DoH, 2000b, p. 62)

Users and their carers should have choice, voice and control over what happens to them at each stage of their care (DoH, 2000b, p. 66).

However, compared with a large literature on the psychosocial support needs of cancer patients in the literature on psycho-oncology, there is relatively little published research on the independent support needs of informal carers in cancer contexts (for examples, see Kissane et al., 1994; Harrison, Haddad, & Maguire, 1995; Houts, Rusenas, Simmonds, & Hufford, 1991; Toseland, Blanchard, & McCallion, 1995; Pitceathly & Maguire, 1997; Katz, Boesch, & Herzog, 1998). Rather more attention has been paid to informal carers in the cancer palliative care literature, but their contribution remains relatively under-explored (see Fakhoury, McCarthy, & Addington-Hall, 1996; Rose, Webb, & Waters, 1997; Beaver, Luker, & Woods, 1999; Payne, Smith, & Dean, 1999; Rhodes & Shaw, 1999; Rogers, Karlsen, & Addington-Hall, 2000).