Psychosocial impact of recurrent cancer

Psychosocial impact of recurrent cancer Karen Burnet, Lorraine Robinson The experience of cancer recurrence is multifaceted and is influenced by social support, family support and medical and nursing intervention.The diagnosis of recurrence is often more traumatic than the initial diagnosis and the future for the patient becomes less certain. A chronic illness model provides a useful framework for understanding the experience of recurrent cancer. People who are diagnosed with recurrent cancer recognize that it is a time of re-evaluation, transformation and redefinition. Relationships take on an important significance and informational and support needs are paramount. Much of the literature suggests that the role transformation, or the adaptation of the individual to their circumstances, is a central theme of the experience of cancer recurrence.The development of a specific model to assess the role transformation that patients appear to experience in the face of the uncertainty of their recurrent disease, would be invaluable when developing a theoretical framework to guide future research and nursing care. # 2000 Harcourt Publishers Ltd Keywords: cancer recurrence, role transformation, adaptation, uncertainty Psychosozialer EinfluÞ von Krebsrezidiven Die Erfahrung eines Rezidivs hat viele Facetten und wird durch soziale UnterstÏtzung, familiare UnterstÏtzung und medizinische sowie pflegerische MaÞnahmen beeinflusst. Die Diagnose eines Rezidivs ist oft traumatischer als die Initialdiagnose und die Zukunft des Patienten wird ungewisser. Das Modell einer chronischen Krankheit bietet einen sinnvollen Rahmen, um die Erfahrung eines Rezidivs zu verstehen. Menschen mit einer Rezidivdiagnose erkennen, deÞ dies eine Zeit der Neubewertung, Transformation und Neudef|nition ist. Beziehungen gewinnen eine groÞe Bedeutung und die BedÏrfnisse nach Information und UnterstÏtzung Ïberwiegen alles andere: V|ele Literaturquellen gehen davon aus, daÞ die Rollentransformation, oder die Anpassung des Individuums en seine Lebensbedingungen ein zentrales Thema im Erleban des Rezidivs sind. Die Entwicklung eines spezif|schen Modells mit dem man die Rollentransformation, die die Patienten angesichts der Ungewissheit ihrer wiederkehrenden Erkrankung durchzumachen scheinen, erfassen kann, wÌre bei der Entwicklung eines theoratischen Rahmens fÏr weitere Forschungen von unschÌtzbarem Wert.

Karen Burnet MSc, BSc, RN, Nurse Practitioner (Breast Care), Oncology Centre, Addenbrooke's Hospital, Hills Road, Cambridge CB2 2QQ, UK Lorraine Robinson MSc, BSc (Hons), PGDE, RN, Principal Lecturer, Florence Nightingale Division of Nursing and Midwifery, King's College London, Waterloo Bridge House, Waterloo Road, London SE1 8TY, UK Correspondence and o¡print requests to: Karen Burnet

Impacto psicosocial ante una reca|¨ da de ca¨ncer La experiencia de padecer una progresio¨n de enfermedad o de una recaida es multifactorial y esta¨ influenciada por el apoyo social que recibe el paciente, el soporte familiar y la intervencio¨n me¨dica y de enfermer|¨ a. El diagno¨stico de reca|¨ da es a menudo ma¨s trauma¨t|¨ co que el diagno¨stico inicial por lo que el futuro del paciente se convierte en ma¨s incierto. El modelo de enfermedad cro¨nica es una gu|¨ a u¨til de trabajo para un mejor entendimiento de lo que es padecer un ca¨ncer recurrente. Las personas que han sido diagnosticadas de reca|¨ da o progres|¨ o¨n de enfermedad reconoccn que este es el momento para reevaluar, transformarse y def|nirse. Las relaciones personales toman una importancia signif|cativa y el aporte emocional es fundamental Mucha de la bibliograf|a sugiere que el rule de la transformac|¨ o¨n o de la adaptac|¨ o¨n del individuo a su circunstancia, es el toma principal de la mayoria de los pacientes que han recaido. Desarrollar un modelo especif|co para valorar el role de transformac|¨ o¨n que los pacientes experimentan de cara a una recaida, podria scr no valorable a la hora de desarrollar unas guias de trabajo para una futura investigac|¨ o¨n en este campo.

INTRODUCTION The impact and meaning of cancer recurrence have received little attention in the nursing literature, despite Mahon's (1991) observation

European Journal of Oncology Nursing 4 (1), 29^38 # 2000 Harcourt Publishers Ltd doi:10.1054/ejon.1999.0033, available online at http://www.idealibrary.com on

that many patients with cancer experience recurrence of their malignancy at one or more points along their illness pathway. Weisman (1979) commented over two decades ago that `strangely, little psychosocial investigation into

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this phase has been done, although it may be the most discouraging and dicult that a patient has to face'. This paper sets out to identify the substantive themes that constitute the experience of cancer recurrence. The intention is not to o€er an exhaustive review but rather to highlight key considerations for cancer nursing practice and research. Research to date has focused on the psychosocial concerns and adjustment of those individuals with newly diagnosed cancer, but minimal attention has been paid to the experiences of those living through or with cancer recurrence. The discovery of cancer is a stressful and traumatic event (Elund & Sneed 1989), and a new diagnosis of cancer is associated with increased distress for the patient, manifested by feelings of anxiety, fear, depression and helplessness (Krouse & Krouse 1982). For individuals faced with a life-threatening illness, denial may serve as an important protective function (Germino & McCorkle 1985). Other responses may include anger, disbelief, self pity and hostility (e.g. Cooper 1984, Westbrook & Nordholm 1986). The person with cancer may be required to deal with symptoms, manage healthcare regimens, adjust to body-image changes, live with uncertainty, and revise personal, social and occupational goals (Lambert & Lambert 1987). Shan®eld (1980) describes the experience of having cancer as a permanent one, characterized by easy recall of initial feelings and emotions associated with the illness, a continued concern for one's own mortality and an enduring sense of vulnerability. When the experience of cancer recurrence is considered, what ®rst emerges is that the course of the illness is less clearly de®ned for the individual, their family and health-care professionals than the course at initial diagnosis. The agenda for cancer treatment does not necessarily centre on cure as it might have done at the time of diagnosis, but on promoting quality of life, relieving symptoms and extending life expectancy (Powles & Smith 1991). The choices for each person are complex with a variety of personal, social and disease-related factors in¯uencing the course of treatment, its consequences and potential outcomes. There is, for example, con¯icting evidence as to whether chemotherapy improves quality of life (Coates et al 1987, Ramirez et al 1998). Questions centre on whether chemotherapy is essential for symptom control or an unnecessary intrusion for the individual with recurrent cancer. A key theme throughout the experience of cancer recurrence is uncertainty±uncertainty about the future; the choices to be made; relationships with family, friends and health-care professionals; how to live life when the cancer has returned and role transformation. For many individuals and health-care European Journal of Oncology Nursing 4 (1), 29^38

professionals the notion is that the scales have been tipped in favour of the disease rather than the individual, that the balance is disturbed (Robinson 1994).

RECURRENT CANCER: A CHRONIC CONDITION The event of cancer recurrence often means that individuals are faced with a disease that cannot be cured and has to be endured over time. Their condition becomes chronic, causing the individual to undergo a change in personal perspective and a change to the world in which they live. The assumption that chronic illness is a multidimensional experience some aspects of which are common to di€erent diseases, is re¯ected in recent research. Strauss et al (1984) identi®ed several tasks common to the variety of chronic illnesses (such as diabetes, arthritis and pulmonary disease). These include preventing and managing medical crises, controlling symptoms, re-ordering time, managing the trajectory of the illness, living with the imposed social isolation and normalizing life (Woods et al 1993). Chronic illness and recurrent cancer are events that happen over time and have profound e€ects on the individual, their family and signi®cant others. For individuals there is a time of diagnosis, the time of living with the disease and coping with interventions o€ered, and ®nally a time of acceptance that the illness is not going to go away. Strauss's chronic illness trajectory framework has been used to order the limited information on recurrent cancer and to facilitate understanding of the unique experience of recurrent cancer on the individual and their relationship with others (Strauss et al 1984). Two parts of this framework are explored here: the `diagnosis of ', or the onset of the illness trajectory, and the `living with' the disease whilst the individual travels along the illness trajectory, experiencing the stabilization and destabilization of the disease process. The major unifying concept of this theoretical framework is `trajectory' which denotes the course of the illness over time. The illness, in this case recurrent cancer, and the treatments used to manage it, not only have consequences for the a€ected individual but also their family and carers. Strauss noted that the biography (identity over time) of the individual is altered as they cope with their chronic condition. The experience itself is complex and the use of a framework has the potential to reduce a holistic experience to categories. However, a framework does assist us to extricate and conceptualize some key issues for debate.

Psychosocial impact of recurrent cancer 31

THE DIAGNOSIS OF CANCER RECURRENCE Methodological Issues To date, research on the experience of cancer recurrence is sparse and dominated by qualitative work. The focus of these studies can be categorized under three headings, as shown in Table 1. It is beyond the scope of this paper to give a detailed discussion of the methods used for each study. Instead some general comments on the focus of these papers will be made. Most of these studies originate in the USA and are therefore able to inform us of the American experience of cancer recurrence. These studies may be able to inform us of the personal experience of recurrent cancer which, perhaps, can be extrapolated to other countries or cultures, but will not identify the e€ect the American health-care system can have on that experience. A variety of di€erent qualitative methods were used to study the e€ect that a diagnosis of recurrent cancer can have, although most of the papers relied on some form of validated psychometric testing combined with an interview. The number of research approaches for exploring an individual's response to disease recurrence only allows for a limited comparison of ®ndings, although some general conclusions can be drawn. The variety in study design is indicative of the uncertainty concerning the way to assess the impact of recurrent cancer and highlights that there is no one validated psychometric test designed for the study of the recurrent cancer experience. Qualitative research methods seem the best way to understand the subjective e€ect of recurrent cancer on the individual but, in future, could be combined with quantitative methods to analyse the physical experience of recurrent cancer and to complete our understanding of the recurrent illness experience.

The fear of cancer recurrence The fear of cancer recurrence can be considered as the pre-trajectory phase when the patient has no signs or symptoms present and the course of the chronic illness has not begun. The literature has begun to debate the impact and legacy of recurrence for cancer survivors. Welch-McCa€ery et al (1989), in an extensive analysis of the literature, reported that, unlike survivors of other life-threatening events, survivors of cancer are faced with uncertainty and fear of recurrence. Recovering from the acute experience of diagnosis and treatment therefore incorporates living with the possibility that the cancer may return.

THE ONSETOF THE ILLNESS TRAJECTORY Being told Robinson (1994) argued that feelings of panic, uncertainty and being in a state of ¯ux characterized the time between the discovery of a problem and medical con®rmation of cancer recurrence. Mahon and Casperson (1997) describe similar observations in their study which set out to describe the meaning of cancer recurrence. They noted that whatever their expectations, subjects were overwhelmed and devastated by the diagnosis of cancer recurrence. There are parallel descriptions related to the original diagnosis and a number of studies (e.g. Shinsheimer & Holland 1987, Northouse 1989) have indicated that the most stressful time for women with breast cancer is between the discovery of a problem and the start of treatment. The experience of being told of a diagnosis of cancer recurrence is similar to that of the original diagnosis. Surprise, shock, disbelief, devastation and a sense of turmoil characterize this time even though the possibility of cancer recurrence is

Table 1 Focus of published studies on the psychosocial e¡ects of recurrent cancer E¡ect on patient

Example reference

.

The e¡ect of the recurrent diagnosis on the psychosocial functioning of the individual

Weisman and Worden (1985/6) Mahon et al (1990) Mahon and Casperson (1997)

.

The e¡ect of psychosocial factors on the development of cancer recurrence and on the individual with recurrent disease

Levy et al (1988) Ramirez et al (1989) Spiegel et al (1989)

.

The e¡ect of family and other social support on the individual's ability to adapt to their diagnosis and the e¡ect of recurrent disease on the individual and their family

Chekryn (1984) Kissane et al (1994) Northouse et al (1995) Lewis and Deal (1995) Robinson (1994) T|erney (1996)

These studies were identif|ed using MedLine and Cinhal, searching between 1979 and 1998. European Journal of Oncology Nursing 4 (1), 29^38

32 European Journal of Oncology Nursing

something that individuals do consider from the time of their initial diagnosis (Robinson 1994, Tierney 1996, Mahon & Casperson 1997). Weisman and Worden (1985/6) in their study which set out to assess the emotional and psychosocial states of patients with recurrent cancer, reported that the degree of surprise correlated directly with the emotional impact of recurrence. However, Cella and Tross (1986) found no signi®cant di€erences between psychological adjustment and de®ned levels of expectation. It is important to stress that, whatever the expectation, hearing the news of cancer recurrence can be painful and may still constitute a shock for the patient and family. Women in Tierney's (1996) study censored what they told their family, particularly their children, choosing to impart the information at a time of their choice and in a kind, caring way. Notwithstanding these negative components, some researchers have reported that for some women there are potentially positive e€ects of having a cancer recurrence con®rmed, such as the opportunity for re-prioritization (Mahon & Casperson 1997, Hilton 1988). Practitioners have reported anecdotal evidence of women expressing relief at the cancer returning; they could now stop worrying about the `cancer coming back' as the worst has happened and they were no longer waiting for the `Sword of Damocles' to drop (Weisman & Worden 1985/6).

Recurrence versus initial diagnosis A central issue in research related to the psychosocial impact of cancer recurrence is whether recurrence is more distressing than initial diagnosis. Weisman and Worden's (1985/ 6) working hypothesis was that recurrence is more distressing, disabling and discouraging than the shock of the ®rst diagnosis. However, their research ®ndings did not con®rm this. Although recurrence was an ominous development, with health-related concerns of paramount importance, it was not more distressing than the original diagnosis. The average level of distress in recurrence patients was not signi®cantly di€erent from those in a comparable group with newly diagnosed tumours in the same sites (Weisman & Worden 1985/6). In contrast, in Mahon et al's (1990) descriptive study of the perceptions and needs of people with recurrent malignancies, 78% (n=31) of the 40 respondents considered that the experience of recurrence was more upsetting than the original diagnosis. The informants in Robinson's (1994) study considered that the experience of recurrence was di€erent to that of diagnosis but found it dicult to describe why. Those who were able to qualify why did so in terms of uncertainty, fear about the future and what it held for them. European Journal of Oncology Nursing 4 (1), 29^38

The issue of whether one experience is more or less distressing than another is debatable. Rather, what seems relevant and important are questions related to what is distressing and upsetting about the experience and what health-care professionals can do to help. Mahon and Casperson (1997) eloquently describe how many participants in their study did not view treatment as a battle, but were looking for a `peaceful coexistence with cancer'. Assessing di€erences in experience may therefore be helpful in establishing individual's priorities and concerns at this time.

Support and informational needs Individuals with recurrent cancer have noted that they perceived communication with healthcare professionals as super®cial and poor, and reported feeling categorized by health-care professionals who made little attempt to become reacquainted once the recurrent diagnosis had been made (Cella et al 1990). Similarly, participants in another study stated that they felt they were not listened to and that health-care professionals did not talk about the future (Robinson 1994). Women in this research also identi®ed a need to talk with someone about their feelings and concerns. As they had not had that opportunity before, the research interview became a vehicle for them to talk about what was considered important and many had questions related to their recurrence (Robinson 1994). Robinson's study (1994) also showed that the priorities of the informants in out-patient consultations were not necessarily those of the clinician. This situation potentially creates frustration and resentment, and, perhaps more importantly, the patient's agenda is not of prime importance. Robinson (1994) explained that informants acknowledged the diculties of o€ering individuals speci®c information about recurrence in terms of `worrying people' but stressed that they would have wanted information about recurrence after completion of primary treatment. Rose (1989) supports this contention, advocating that educating cancer survivors about the symptoms of cancer recurrence is a strategy to reduce the psychosocial sequelae of cancer survival. Robinson (1994) suggested that, for women in her study, the reasons for wanting information were more personal, in the sense that they believed that information about the signs and symptoms of recurrence may have meant that they were quicker to seek advice and more insistent in their interactions with their General Practitioner. Health-care professionals cannot assume that individuals with recurrence have the information that they require and that their informational needs are similar to those at diagnosis. Although

Psychosocial impact of recurrent cancer 33

the informational needs of women newly diagnosed with breast cancer have been highlighted by Luker et al (1995) and Graydon et al (1997), the speci®c informational needs of women at recurrence have not been researched.

LIVING WITH THE DISEASE Managing treatment and the continuing condition Managing treatment and the continuing sequelae of cancer recurrence can be viewed as a central theme within this experience. Patients with recurrent disease have had previous experience of cancer therapy and they bring these experiences with them (Mahon 1991). In Robinson's (1994) study informants talked about their experience of chemotherapy, including the distress associated with the concomitant hair loss. Feelings of being unattractive were a predominant feature of the experience for those women undergoing chemotherapy. This supports the work of Mahon et al (1990) who concluded that for many patients recurrent cancer refuels fears and distresses associated with altered body image and feeling unattractive. However, in Tierney's (1996) work, women showed a willingness to accept new treatments if they would help and, importantly, felt relief and gratitude that there was something being done, a `lifeline' being pro€ered. Robinson (1994) found that women undergoing chemotherapy did question its value in terms of quality of life. Both these ®ndings are in contrast to research reported in the US where individuals with recurrent cancer reported that they felt that their physician no longer wanted to treat them (Mahon et al 1990). It appears that health-care professionals need to consider the question of individual choice, and a balance of maintaining hope and supporting patients through potentially `dicult' treatment. It is also unclear whether the nature of the treatment itself is important. Some treatments are on the surface, quite straightforward, e.g. a single fraction of radiotherapy for a bone metastasis or a change from one hormone treatment to another, whilst others can be more complex, such as intensive chemotherapy. Mahon et al (1990) described how patients reported that care-givers/health-care professionals assumed they had adequate social support when they did not and were coping better than they were. This suggests that it is critical for nurses and other health-care professionals to reappraise patients' perceptions of past therapy. Simply because a patient has undergone a therapy in the past does not mean that they are prepared or do not have fears, questions and concerns. More recently, Mahon and Casperson

(1997) reported that for many of their subjects (15 out of 20) memories of previous therapy, combined with more time to worry, were associated with the fear of treatment for cancer recurrence. Potentially, cancer recurrence brings with it changes in social, leisure and family activities and this may be accompanied by fear of being a burden. The latter observation supports the ®ndings of Mahon et al (1990) who posited that increased pain and fatigue were associated with concerns about reduced capabilities and independence. The patient's world begins to shrink as they ®nd their ability to look after themselves diminishes. Robinson (1994) noted that informants believed there were imposed alterations in work and/or social activities associated with the timing and impact of cancer treatment, tiredness and metastatic bone pain. Similarly, Cella et al (1990) reported that 75% of the informants in their study reported missing work while Mahon (1991) contends that at the time of recurrence many patients will experience increased pain and fatigue which can be related to the disease process and/or treatment. Currently, there is little evidence to support these ideas. Issues related to perceived impositions on work and social life through pain, fatigue or other symptoms (e.g. breathlessness, ascites) and/or the impact of cancer treatment are an area for consideration for cancer nurses in practice and through further research.

Transformation of role Whatever the reality of managing the condition, individuals continue to live their lives with a diagnosis of cancer recurrence. Tierney (1996), for example, reports that women viewed `getting back to normal' as an important achievement in coping with cancer recurrence. The following sections examine that reality in terms of exploring how individuals transform their roles and lives and, with their families, face an uncertain future and concerns about death and dying. As health-care professionals, it is vital that we continue to try to understand this process so that we can appropriately facilitate it. Implicit in the notion of role transformation is the ability to deal with things according to their practical signi®cance or immediate importance; this Tierney (1996) identi®es as a pragmatic approach.

The e¡ects on self Living with a diagnosis of recurrence causes most individuals to undergo a change in their personal perspective and a change in the world in which they live. This shift from the known to the unknown, and the daunting prospect of dying, can bring life into sharper focus and encourage European Journal of Oncology Nursing 4 (1), 29^38

34 European Journal of Oncology Nursing

self appraisal (Johnston-Taylor 1995, Colyer 1996). This search for meaning is the patient's attempt to integrate how they were before the diagnosis into what they have become, with the purpose of imposing a sense of order into their changed lives. Beliefs, values and goals in women (with breast cancer) studied by Hilton (1988) were important factors as to how these women appraised their situations. Particularly striking was their perception of the preciousness of life and an increased emphasis on completing goals they had set for themselves. In addition, a qualitative study by Loveys and Klaich (1991) on the impact of recurrent breast cancer on women of child-bearing age, found 14 domains of illness demands. These included changes in life context, reconstructing the self and acquiring new knowledge. Women in this study were able to prioritize, the important things in life were valued whilst those less important were ignored. Similarities can be found between this study and that carried out by Tierney, who demonstrated that women who were diagnosed with recurrent breast disease had a need to review their situation and had begun to develop a deeper personal insight into the motives for their behaviour at that time (Tierney 1996). It seems that when individuals are threatened by recurrent cancer the transience of their existence is emphasized. Life becomes more precious, causing some individuals to make their lives more meaningful. Individuals learn to let go, to adapt to their changing place in the world and to living with uncertainty (Chekryn 1984, Mahon et al 1990). They prioritize every-day living pragmatically into things that are important and things that do not matter, e€ectively transforming their role to cope with the new circumstances in which they ®nd themselves (Tierney 1996).

just have the immediate, de®ned e€ects of a new diagnosis from which the family can recover, but has ongoing and serious implications which could end in death for the patient. This new phase causes a period of change, when families re-evaluate and re-appraise in order to adapt to their new circumstances and to accommodate the shifting demands of the disease on the patient. Northouse (1987) described these changes as drawing some families together whilst pushing other families apart. In a later study, Northouse (1989) found that role function within the family did improve over time but the associated distress did not. Appropriate information and care related to treatment for cancer can help the family cope better. In her research on Family Responses to Hospitalisation, Lovejoy (1986) studied families whose relative had been admitted for cancer care. She was able to identify ®ve categories of response: shock, uncertainty, accommodation, immersion and awareness. Nurses were able to help by preparing the family members for the unknown, validating the patient's worth and providing assurance about an uncertain situation. Halliburton et al (1992), in their study on families' concerns during chemotherapy for recurrent cancer, found that cancer-related health concerns were perceived as the major problem. Treatment issues, such as a lack of response to chemotherapy or a change of treatment were of primary importance to the 34 families they studied. Northouse (1989) underlined the importance of caring for the whole family of a patient with cancer and suggested that `greater attention needs to be given to the impact of (breast) cancer on family members to ensure they get the support they need, and to enable them to maintain their supportive role with the patient'.

The e¡ects on a family

The e¡ect of recurrence on couples

When an individual de®nes themselves in the world it is often their relationship with others to which they refer. A diagnosis of recurrent cancer not only a€ects the patient but changes and rede®nes their relationship with `signi®cant others' and those for whom they are responsible. There is little research into the e€ect the family can play on the emotions experienced by a patient with recurrent disease but what there is shows that the existence of signi®cant others, and how they and the patient relate to the world, are repeating themes (Lovejoy 1986, Northouse et al 1991, Lewis et al 1992). Halliburton et al (1992), who studied 34 adults with recurrent disease and their 38 family members, describe how the recurrent diagnosis extends the cancer experience for the patient and their family. It becomes an illness that does not

There is some evidence that with an early breast cancer diagnosis married women receive appropriate support more often than single women and that husbands seem to be the main source of this support (Neuling & Wine®eld 1988). Lewis and Deal (1995) examined the married couples' experience of recurrent breast cancer from each partner's perspective and evaluated mood and marital quality. The core category `balancing of our lives' explained how couples managed the reality of the disease. The most important coping mechanism for the couples who participated was their ability to `talk about the daily realities of the woman's breast cancer, not dwelling on the cancer but moving ahead and healing themselves' (Lewis & Deal 1995). This seems an optimistic approach to coping with disease recurrence but the study also revealed that, despite this, the

European Journal of Oncology Nursing 4 (1), 29^38

Psychosocial impact of recurrent cancer 35

couples interviewed had relatively high rates of depressed mood and marital depression. Northouse et al found that a diagnosis of cancer for the wife caused distress to both the husband and the wife because they were unable to ful®l their social roles as e€ectively as they had prior to the diagnosis (Northouse et al 1995). Communication appears to facilitate role transformation between couples who are adjusting to the diagnosis of cancer recurrence. Chekryn (1984), using a descriptive correlational design, asked 12 women and their spouses to participate in separate interviews and to complete the Dyadic Adjustment Scale (Spanier 1976). Diagnosis led to individual and family hardships; diculties with closure; uncertainty; grief; feelings of injustice, fear and anger; and concerns about the family (Chekryn 1984). Death was often talked about by the women and their spouses to the investigator, although they could not talk to each other about such concerns. However, an absence of communication between the spouse and patient is not always the main cause of marital dysfunction. Northouse et al (1995), Mahon et al (1990) and Chekryn (1984) found that symptom distress and hopelessness of the patient accounted for the most variance in the woman's and husband's level of adjustment. In most of the studies on couples' adjustment to cancer recurrence, there is a continual theme of couples trying to `work through their problems' and to adjust to the new change in their circumstances. In their study of 48 couples, Lewis et al (1989) found that couples had diculty in discussing their negative personal feelings, the possibility of treatment failure, their sense of loss and the uncertainty of their future. It is of no surprise that there is great sadness detected between couples who are coping with recurrent cancer. Depression seems a predictable reaction, and something that health-care workers should work with rather than ignore or dismiss. Not all the studies are pessimistic about how couples coped. A signi®cant and positive relationship was found between the husband's and wife's adjustment scores (Northouse et al 1995), and for some couples planned problem solving seems to help with a positive re-appraisal of the recurrent diagnosis (Hilton 1989).

E¡ect of a recurrent diagnosis on children It is not just the couple's relationship that is changed by the diagnosis of cancer recurrence; the functions of the couple within the family are also a€ected. Having a child changes a woman's perspective on the world and herself. There is a responsibility on her to be available for her children and there is a particular and unique

emotional bond between a mother and her children (Oakley 1979). Very little has been studied about the e€ect of being a mother with recurrent disease although Packard et al (1991) have done considerable work on the e€ect on the family when the mother has primary breast cancer. By studying 80 mothers, they were able to show that frequent illness demands were associated with increased levels of parental depression which then negatively a€ected the marriage and their relationship with their children (Packard et al 1991). The research showed that children functioned better when their parents coped with the cancer diagnosis. In their descriptive study on the e€ect of recurrent disease, Mahon et al (1990) found that of the 40 patients studied, ®ve young mothers worried about how their children would manage in their absence and felt they were abandoning their responsibilities as parents. Imparting information to the children seems to be an important component of the disease experience. In Tierney's (1996) study, mothers censored details of their disease from their children, playing down the signi®cance of the recurrent diagnosis. This may have been protective mothering behaviour but these women may not have been justi®ed in their behaviour. For example, in an empirical study by Kissane et al (1994), psychological morbidity in families of patients with cancer a€ected one third of spouses and one quarter of o€spring. The proposed reason for the distress of the o€spring's was a lack of information about what was happening. The children were aware that something was wrong and their imagined fantasies were often more frightening than the reality. The women interviewed in Kissane et al's (1994) study often talked of getting things `back to normal' and this could have been an internal need or an external requirement of their families. The study was not cancer-speci®c and included men as well as women in the analysis. There is no speci®c research to date on the e€ect of recurrence on fathers or the fathering role, despite an increasing number of fathers becoming the primary carer for their children.

Facing an uncertain future Uncertainty about the future has formed a central theme of cancer recurrence. In Robinson's (1994) study the uncertainties were about the future, whether the informant would survive and how to plan for the future. Importantly, uncertainty made planning for the future dicult. This experience was not exclusive to the experience of informants; their partners also found it dicult to look to the future. These ®ndings support the work of Mahon et al (1990) and Chekryn (1984). Chekryn (1984) speci®cally asked participants whether they experienced European Journal of Oncology Nursing 4 (1), 29^38

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European Journal of Oncology Nursing

uncertainty and eight (67%) responded armatively. Uncertainty about the future and thoughts about the future have also been associated with thoughts about prospective losses, primarily not being part of their partner's future (Robinson 1994). This distressed informants as it involved considering the possibility of separation from families. Mahon and Casperson (1991) posited that patients may feel `cheated' out of the opportunity to do things that they wanted to do. One of the features which possibly sets the experience of patients with recurrent cancer apart from those with other chronic illnesses is that uncertainty about the future can originate in questions about their individual mortality. When asked if recurrence posed any speci®c problems 10 (83%) of Chekryn's (1984) sample o€ered responses that re¯ected concerns about death. It seems that the patient has to face the threat of death again, and those in Mahon's et al (1990) study felt that the threat of death was `more real'. Conversely, Robinson (1994) found that in her study patients with recurrent cancer alluded to death but were unable or did not wish to talk about it overtly; each informant discussed issues related to death and/or dying even though it was not a speci®c question. In the research by Mahon and Casperson (1997), the meaning of recurrence was in¯uenced by prior cancer-related experiences and dominated by death and death-related concerns. In her qualitative study, Tierney (1996) found that women diagnosed with recurrent breast cancer confronted their own mortality by talking of their death in terms of when it might happen and the inevitability of it. The women studied learned to live with the prospect of dying and wanted to move towards death with some of the people in their world. They had learned to live with uncertainty by keeping every-day life normal. For these women there was a sense of quiet optimism about life and a need to enjoy every minute of it until it ®nished, although they may also have been gently denying what was happening to them (Tierney 1996). Living with uncertainty seems easier for some than for others ± we can only speculate on why that might be. The answer can only be found through additional research and at a practical level working with each person's own approach or philosophy to living with recurrence. The key issue for cancer nurses is to help individuals ®nd their own way of living that incorporates planning for the future or living as normally as possible, depending on their needs and wishes.

DISCUSSION The experience of cancer recurrence is a complex one in¯uenced by social support, family support, European Journal of Oncology Nursing 4 (1), 29^38

medical and nursing intervention. The course of the disease is less clearly de®ned than at initial diagnosis and there is more uncertainty about the patient's future than before. Although the diagnosis of cancer recurrence appears to a€ect people di€erently, the themes identi®ed in this paper indicate it is a time of re-evaluation, transformation and rede®nition. Individuals are faced with adapting to changing circumstances, living with uncertainty, letting go of some relationships and re-enforcing others, including those with spouses and family. Informational and support needs are central to the experience. Strauss et al's (1984) model of a chronic illness trajectory with its many rates and phases of disease experience is helpful when considering the `diagnosis of ' and the `living with' cancer recurrence. Understanding that the individual, their family and signi®cant others are moving along an illness trajectory can direct care. Nurses can, through good communication skills and by recognizing their changing needs, help the individual and their family move along the trajectory to a stable phase of illness management. However, there are some disadvantages to Strauss's illness trajectory framework. Much of the literature suggests that the role transformation, or the adaptation of the individual to their circumstances, is central to the experience of cancer recurrence. This is not developed by Strauss, although he does talk of the identity (biography) of the individual changing, and of the individual adapting to their new circumstances, which he calls `re-knitting' their lives (Corbin & Strauss 1992). The development of a speci®c model to assess the notion of role transformation that patients appear to experience in the face of their recurrent disease, would be invaluable in developing a theoretical framework to guide future research and nursing care. Viewing recurrence as a chronic condition has both advantages and disadvantages. Strauss et al (1984) emphasizes the illness rather than the wellness aspect of a chronic condition, although there can be long periods of time when patients with recurrent cancer are symptom-free and feel relatively well. We would do well to remember that patients cope with recurrent cancer and that there are positive aspects to having recurrent disease. People can ®nd it a time of re-evaluation, when the important things in life are emphasized and the less important things are dismissed. Relationships between the patient and their signi®cant others can be strengthened by the knowledge that the times of good health are precious and that the future is uncertain.

Implications for nursing practice Cancer nurses need to recognize that the individual diagnosed with recurrent cancer has

Psychosocial impact of recurrent cancer 37

speci®c needs which may not necessarily be the same as those at the time of diagnosis. The patient has moved on in terms of their illness trajectory and experience. Therefore, nursing care has a number of issues to take into account; for example, changing approaches to treatment for recurrent cancer and its impact on the individual and their family. The family is also an important part of the individual's experience and future nursing care might take into consideration the information needs of the patient's signi®cant others, including children, and the patient's needs for disclosure. What is certain is that when diagnosed with recurrent disease, the patient embarks on a journey. This journey is very di€erent for di€erent individuals, depending on their own truths and life perspectives. Cancer nurses need to work with the patient and family agenda, make no presumptions, and create focused time to be supportive, facilitate adjustment and promote well-being. The use of specialist nurses may help. Patients experience a gamut of emotions at the time of ®rst diagnosis (including anxiety, depression and distress) and what emerges from this literature review is that at the time of a diagnosis of recurrence patients may experience a similar array of feelings. However, what is not clear is the e€ect these emotions have on the process of role transformation and how best to facilitate this role transformation positively.

Implications for research The management of disease recurrence by changing role throughout the illness continuum could be facilitated by informed nursing care. This facilitation could be better understood by conducting qualitative and quantitative longitudinal research studies of individuals newly diagnosed with cancer, and then following the natural progression of the disease to recurrence. This might further illustrate di€erences between a new diagnosis of cancer and con®rmation of recurrence. Nursing intervention during the phase of cancer recurrence now needs to form a central element of the research process. Evaluation and intervention studies need to be developed as our understanding of the experience grows. Through partnership with this patient group, for example using focus groups or collaborative research, nursing interventions could be made more patient-centred.

CONCLUSIONS The diagnosis of recurrence is often more traumatic than the initial diagnosis and the patient's future becomes less certain. The experience of recurrence is in¯uenced by social

support, family support, medical and nursing intervention. It is a time of re-evaluation, rede®nition and role transformation. These factors are highly variable from one person to another, leading to a totally individual experience. The development of a model to assess the individual experience, especially role transformation, would be a valuable aid to nursing care and to the development of a theoretical framework for future research. ACKNOWLEDGEMENTS We would like to thank Neil Burnet for his support and encouragement, Debbie Fenlon and Sophie Cawdry for their considered comments and Acorn Computers for their technical back-up.

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