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Quality of life in survivors of bone marrow transplant
Quality of life in survivors of bone marrow transplant Susan Holmes, Adrian Coyle, Evelyn Thomson
Although prospects for long-term survival after bone marrow transplantation ( B M T ) have increased, little is known about the nature or quality of that survival. Concern over the quality of life (QL) of survivors thus becomes increasingly important. This study attempts to define the concept of Q L in a small sample of B M T survivors, I - 3 years after transplant, and to identify the factors influencing the quality of survival. Interpretative phenomenological analysis of in-depth interviews indicated that survivors, despite lingering side-effects, viewed their Q L as the same or better than before BMT, thus challenging the long-standing impression that they experience a less than optimal QL. However, whilst many similarities between survivors have been identified, and the global impression was that they were 'doing well', this must not overshadow the fact that one survivor described a life of'misery ... disability ... aloneness ... and steady decline'.There is little doubt that carers must remain sensitive to individual differences and promote collaboration within the healthcare team to meet the often complex needs of B M T survivors. INTRODUCTION
Susan Holmes BSc, PhD, SRN, FRSH,CMS, Professor of Nursing, Canterbury Christ Church College, Canterbury, Kent CTI I QU, U K Adrian Coyle BA, PhD, CPsychol, Lecturer in Psychology, Department of Psychology, University of Surrey, Guildford, Surrey GU2 5XH, U K Evelyn Thomson MSc, RGN, Department of Nursing and Midwifery, University of Surrey, Guildford, Surrey GU2 5XH, UK Correspondence to: Professor Holmes.
Many of the current questions in cancer care centre on the choice of treatment for individual patients. Although medical advances may mean being able to save lives, this may be at the expense of significant mutilation, chronic disability or extensive disruption of 'normal' daily living. The assumption that this reduces the quality of life (QL) has led to an upsurge in research seeking to evaluate the impact of such treatment(s) on QL; this has become an important measure of patient outcome. QL has intuitive appeal as an evaluation criterion, capturing the notion that the ultimate concern of healthcare is patient well-being. Indeed, Lehman (1983) asserts that providers of care must ask not only whether their efforts alleviate symptoms, but also whether they enhance patients' QL. However, while recognizing the inherent attraction of QL as an outcome measure, its measurement will not be truly possible until an effective means of identifying and quantifying its constituent parts is available. This, in turn, depends upon a satisfactory definition of the concept; this is currently far from clear. Although QL has been equated with numerous terms it is often associated with life satisfaction (e.g. Young & Longman 1983, Ferrans & Powers 1985) and with the 'gap' between hopes/ expectations and reality (Calman 1984, Ferrel et al 1992a). It is generally agreed that QL is a
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multidimensional concept encompassing psychological, social, economic and health dimensions (e.g. Ferrans & Powers 1985, Aaronson 1988), to which others would add spiritual (e.g. Ferrel et al 1992a) and occupational (Fallowfield 1990) factors. It is also agreed that the importance of such factors varies not only between individuals but also within individuals over time (Padilla et al 1983). Therefore, it is not surprising that there are almost as many measurement instruments as there are definitions. However, the growing consensus is that QL is best studied from an individual perspective using subjective measures (e.g. Ferrans & Powers 1985, Holmes & Dickerson 1987, Aaronson et al 1990).
BONE MARROW TRANSPLANTATION Q U A L I T Y O F LIFE
(BMT) AND
Although bone marrow transplantation (BMT) is increasingly used to treat both malignant and nonmalignant conditions, research on its clinical outcomes has, to date, primarily focused on morbidity and mortality. Thus, while prospects exist for long-term survival, comparatively little is known about the nature or quality of that survival. Previous literature has identified the complex needs of patients across all phases of BMT, generally focusing on single areas such as functional status
Quality of life in survivors of bone marrow transplant
(Wingard et al 1991), physical complications (Andrykowski et al 1989a) and psychological or sexual dysfunction (Wolcott et al 1986, Mashberg et al 1989) and relying largely on existing measuring instruments or general QL scales. This lack of specificity with regard to measurement instruments casts some doubt on both the reliability and validity of their findings in relation to the overall QL of BMT survivors. However, studying QL in this population is difficult due to the generally small numbers of transplants performed in single centres, the relatively high mortality rate and the fact that many patients live long distances from such centres (Wolcott et al 1988). Such studies have, therefore, primarily retied on cross-sectional designs, with patients at various stages following transplant and without any pre-transplant assessment (Wolcott et al 1986a, Wingard et al 1991). However, although changes cannot be attributed to BMT alone, such work does identify at least some of the individual responses to the physical, mental and social factors influencing daily living. It also identifies areas requiring further investigation by highlighting issues of specific concern for BMT survivors. For example, Ferrel et al (1992a) demonstrated that BMT survivors identified eight dimensions of QL: family/relationships; independence; physical, mental and spiritual health; ability to work and experience no financial distress; heightened appreciation of life and being 'normal' [described as being what QL is compared to what the individual wants it to be (Ferrel et al 1992a)]. The numerous side-effects, probable infertility, fear of relapse, decrements in strength/stamina and limitations in work and other activities were also important. Some longitudinal studies, investigating psychological (Andrykowski et al 1989b) and physical (Syrjala et al 1993) function, have demonstrated a 'ceiling effect' occurring around 2 years after BMT, after which further improvement is minimal. Other studies (e.g. Haberman 1992) indicate that QL deficits may persist even 10 years later. However, the extent of distress attributed to such deficits is consistently low, suggesting that at least some adaptation occurs.
METHOD Although most people have an intuitive understanding of QL, the concept means different things to different people; it is a term that 'everyone understands but few can define' (Campbell 1977). The provision of an overview of QL, before asking participants to define this for themselves, was therefore felt to be necessary. Although this may appear to be at odds with the individualized, subjective focus of the research, a global description was chosen to orient participants to the topic while
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encompassing many of the existing representations of QL in the literature. This was: Quality of life is an abstract and complex term, fluctuating with time and circumstance and representing individual responses to the physical, mental and social factors that contribute to 'normal' daily living (Holmes & Dickerson 1987). The focus here was to establish the meaning of QL for the participants and to identify those factors affecting their 'normal' daily living. A convenience sample of BMT survivors, 1-3 years after transplantation, was recruited through the out-patient clinic of a regional BMT centre. Participants were interviewed by a single interviewer, using a semi-structured format, to explore their perceptions of QL and the factors influencing it. This ensured that the core research issues were addressed and permitted in-depth exploration of participants' subjective representations of QL and QL-related experiences. Using a single interviewer avoided the risk of interinterviewer variability. During a standardized introduction, the description of QL was given and participants were asked to describe what QL meant to them. Participants were then asked whether, and how, their QL had altered since BMT, to identify their greatest current concerns in life, to comment on the effects of BMT on their family and whether, if they could 'turn the clock back', they would undergo BMT again. Concluding comments about their QL were encouraged. Where necessary, neutral probes were used to encourage elaboration of responses, thus ensuring that the interview remained focused on QL while encouraging participants to give more detailed descriptions of events. The interview questions were constructed on the basis of a literature review related to QL and BMT in an~ attempt to cover salient dimensions of the research domain. They were designed to access the effects of BMT on QL generally and on specific aspects of QL from individual perspectives. To enhance the validity of the data, the questions were checked by staff experienced in the care of BMT patients. These staff confirmed that the questions adequately represented the research topic and acted as key informants throughout the research. Interviews were audiotaped and transcribed verbatim. In accordance with the research focus on BMT survivors' subjective representations of their experiences, data were analysed using interpretative phenomenological analysis (IPA) (Smith 1996a, Smith et al 1997). The aim of this approach is to explore participants' views of their experiences in their own terms within a realist ontology. However, IPA recognizes that it is impossible to access participants' worlds directly or completely. The researcher must engage in a process of Journal of CancerNursing I (3), 106116
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M E A N I N G OF Q U A L I T Y OF LIFE • • • • • •
Being physically fit Being able to do as one wants Being 'normal' Being physically and mentally healthy Being happy Family and relationships
EFFECT OF BMT O N FAMILY Relationships - Distancing of relationships Strengthening of relationships EFFECT OF BMT O N FRIENDS Relationships - Distancing of relationships - Strengthening of relationships
EFFECT OF BMT O N Q U A L I T Y OF LIFE • • • •
• • • • •
Relationships with others Social adjustment b y / t o family, friends and peers Dealing with physical complications Re-establishing life - Re-establishing life was easy - Re-establishing life was difficult Returning to work/financial concerns Increased value f o r life Establishing a new normalcy Establishing new priorities Greater security
interpretation, using their own frameworks of meaning, in order to make sense of participants' worlds. Hence the approach is both phenomenological and interpretative. Turning to specific analytic techniques, the interview transcripts were analysed for recurrent themes. This involved the researchers attempting, as far as possible, to suspend their knowledge of the issues under consideration with the aim of 'seeing' the world as experienced by the participants. The transcripts were read repeatedly and analysed through an examination of both semantic content and language use. Key words, phrases and explanations were highlighted, coded as emergent themes and labelled with a word or phrase which appeared to capture their essence. Although these themes are represented as 'emerging' from the data, the process of identifying themes necessarily involved some degree of interpretation by the researchers. In presenting the themes, each is illustrated with extracts from the data, chosen for the way in which they exemplify that theme. As the aim was to explore and illustrate concepts related to QL rather than to chart their frequency, data were not quantified. In any case, the introduction of quantification into qualitative research can be problematic as there are no pre-defined criteria for determining the extent to which themes must recur before they are deemed to be significant. To minimize the chances of one researcher's interpretative framework leading to an idiosyncratic analysis (i.e. to promote reliability), the analysis was conducted independently by two researchers. Disagreements about coding and category definitions were discussed and resolved, resulting in 94% agreement on the coding scheme. The findings were also checked for meaningfulness by the key informants. It is appreciated that the inter-rater reliability procedure originates from a more Journal of CancerNursing I (3), 106-I 16
GREATEST CONCERNS IN LIFE • • • •
W o r r y a b o u t long-term complications Family concerns Staying healthy and growing old Establishing close relationships
traditional research paradigm than was adopted in the present study. However, qualitative researchers have yet to agree on a common set of evaluative criteria that are regarded by the wider research community as equivalent to criteria such as reliability in their rigour and legitimacy (Smith 1996b). Following the example of Flowers et al (1997) in their IPA-based research, a traditional evaluative approach was adopted on pragmatic grounds.
RESULTS Ten BMT survivors were interviewed (6 male, 4 female). Their mean age was 35 years (range: 19-49 + 11.5); mean age at the time of transplantation was 32.5 years (range 1 8 4 7 + 10.5). The mean duration of survival was 21.1 months (+ 8.4), ranging from 12-34 months after transplant. The major themes emerging from the data are summarized in Table 1 and presented below.
Meaning of QL Although a general description of QL was provided, participants experienced difficulty in expressing what the term meant to them. For example, one responded: 'I can't really tell you what it is, I just know that it's different'. Six themes were identified. The first, 'being able to do as one wants' centred on issues of choice and control. Survivors clearly wanted to be active partners rather than passive recipients in planning their lives. Another major theme was 'being healthy, physically and mentally'. Given participants' experience of serious illness, the importance attached to this dimension was not unexpected. For example, one defined QL as: 'Being healthy. I don't
Quality of life in survivors of bone marrow transplant care about anything else'; another said: 'having my health' was the most important factor in defining his QL. A related theme concerned 'being physically fit'. Among the specific foci here were the ability to participate fully in family life and to resume preillness activities without physical restriction. A term invoked in defining QL was 'being normal'. However, diverse meanings were attributed to this, ranging from 'being like everyone else' to 'just being able to be myself'. The theme of 'family and relationships' pointed to their importance in providing life satisfaction. Finally, two participants defined QL simply as 'being happy'.
Effects of BMT on Q L Nine major themes were discerned in the responses. Only one said 'nothing's changed'. All participants spoke of their experience of 're-establishing life/normalcy' after BMT. Although two described this as 'straightforward' and 'easy', most had found it more difficult. Specific difficulties encompassed physical, social or family issues and psychological problems (such as coming to terms with having survived) and revealed that this was dynamic, changing with time. For example, one said 'I've had to kind of rebuild my life again'. Other related themes concerned establishing new ways of operating due to the experience of BMT and trying to return to a pre-BMT way of life. This involved talking about 'establishing new priorities', such as prioritizing family relationships over more materialistic aspects of life. Having faced a lifethreating illness, most participants stated that they were leading fuller, more meaningful lives and had developed a greater appreciation for life; many aspects of life were reassessed. One said: 'The most important thing in my life is my husband and son. Everything else, including work, comes a very poor second.' Another stated 'Money doesn't interest me any more, family comes first'. Connected with this was the theme of 'increased value for life'. Responses included: 'It's like being reborn as far as I ' m concerned', ' I ' m glad to be here and that's it', and 'I don't just exist now, I ' m actually doing something with my life'. With regard to returning to a pre-BMT way of life, many participants spoke of frustration in 'returning to work and establishing financial security'. Most had experienced problems in obtaining life insurance. One had developed his own survival strategy of choosing not to reveal his medical history to prospective employers, reasoning that: 'They look at you with different eyes if they know, despite the fact that you're more than capable of doing the job'. Others had difficulty in obtaining a mortgage. All participants spoke of difficulties associated with 'dealing with physical complications' including
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fatigue, decreased strength, graft-versus-host disease and pulmonary complications. Others were concerned about their inability to have children. For example: 'My main concern from day one is my inability to have kids, the fact that I'll never know what my children would have looked like'. Some reported a reduction in both the frequency and satisfaction with sexual relations reflecting, in part, physical symptoms and, in part, the concern of their partner, who was anxious that the patient would be 'hurt' should sexual activity be attempted. Participants also talked of 'social readjustment by family, friends and peers' as a major source of support following transplantation. However, although some reported family members as generally supportive and family life as now 'kind of back to normal', this had taken time; some significant others were said to be over-protective. For example: 'My mum, she's still a bit protective of me, I think she always will be.' This was an ongoing problem for many participants, particularly where friends and fellow employees were concerned. 'Relationships with others' were important. Some participants felt they had become more tolerant, accepting people more readily and being more appreciative of them. Others reflected the need for an ongoing relationship with healthcare professionals, even when considerable time had elapsed since transplantation. Some participants, involved in a close relationship prior to BMT, felt that this had 'brought us closer together'. Others, who were unattached, spoke of the difficulty in getting close to someone 'because I don't know what's going to happen to me'. The final theme of 'greater security' was repeatedly expressed by those receiving their transplant during the second remission. For these participants, BMT had increased their confidence. One said: 'I feel a bit more confident because it was always at the back of my mind that I hadn't had a transplant' and another: 'I've got a bit more peace of mind now'.
Comparison of Q L before and after transplantation Despite assiduous attempts to clarify the responses, large amounts of often ambiguous data were elicited that were neither uniformly positive nor negative. The factors said to be responsible for improved post-BMT QL were increased confidence; security (about health); happiness and enjoyment of life; an opportunity to become involved in activities that would not ordinarily have been considered; and a reappraisal of priorities, attitudes and relationships. Although most participants perceived their postBMT QL as 'better overall', they still identified many negative factors including psychological problems (such as depression and lowered selfesteem); social problems (such as being treated Journal of Cancer Nursing 1(3), 106-116
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differently by over-solicitous others); and physical problems (such as fatigue). One claimed that 'adapting to physical problems isn't easy'; this had 'definitely reduced my quality of life'.
Principle concerns of survivors at time of interview All participants spoke of 'worry about long-term complications', indicating cautious scepticism about their future health. For example: 'I worry about the sort of side-effects of the transplant. It's a horrendous regimen and obviously takes a toll on your body, not only physically but mentally'. Again, for those transplanted in second remission, fear of relapse was prominent: 'I think I'll still be a bit wary even 5 years on because it was 7 years before I relapsed before; it might happen again'. All participants also talked of 'family concerns' highlighting issues relating to family relationships and/or their ability to take care of their family. For example: 'Things are in turmoil, we've got no life together, simple as that' and 'I just want to be there to take care of my family'. This theme overlapped with that of 'staying healthy and growing old', illustrating the desire to live a long and useful life and 'to see the family grow up and maybe have grandchildren'. The final theme, 'establishing close relationships', was referred to by those participants who were not involved in stable relationships prior to BMT and who talked of being 'wary of getting attached to people', describing BMT as being 'like a barrier when you go out with anybody. I always think, well you can't get serious'. However, all anticipated that these feelings would diminish as confidence about the future increased.
strengthening of friendships. ' I ' m a lot closer to my friends, ... they stuck by me when I was in hospital' or '... my friends being there was very important'. However, some described a distancing effect. For example, one said: 'One of my friends I hadn't seen for a while said "I just don't know what to say to you, you know, with you having that illness"' and another: 'There's that wee bridge there. I don't think they can handle it; they still tend to treat me differently'.
Would they go through B M T again? Participants were asked whether, if they could 'turn the clock back', they would go through BMT again. These responses have not been coded but are presented in their entirety in Table 2. Only three responded with unequivocally affirmative answers. Finally, participants were offered the opportunity to add any comments they wished regarding their QL. This data emphasized both the significant impact of BMT on participants and expressed the gratitude of survivors. For example: 'All I remember thinking when I got the marrow back was that it was this tiny thing, this tiny bag of stuff that upset my whole life' and 'The only way I can repay it is to try to raise some money for leukaemia research ... it's my way of trying to repay and saying thank you'. Overall, the themes identified can be grouped into five principal domains (Table 1): specific issues related to survival; physical, psychological and social well-being; and financial concerns. A summary model, identifying factors affecting QL in this patient group, has been developed (Fig. 1).
DISCUSSION Effects of transplantation on the participants' family This question, designed to establish whether survivors acknowledged any impact on their family, provided limited information. Despite the earlier focus on family relationships, some participants claimed here that BMT had exerted little or no effect on their family. However, specific questions revealed that, for most, the impact had been positive and had strengthened family relationships. One participant, who had received bone marrow from her sister, said: 'Definitely I ' m much closer to my sisters, especially the one who gave me the bone marrow. At times, it seems we're joined at the hip'. However, one respondent spoke of a distancing effect: 'I don't see my daughter as often and the wife's out more and more'. Although participants were not specifically asked about the effects of BMT on relationships with friends, this was often mentioned. Many respondents reported an increasing closeness and Journal of CancerNursing I (3), 106- I 16
Although the study sample was small, and the generalizability limited, these findings illustrate the impact of BMT on these survivors, thus contributing to the development of knowledge of its long-term consequences. Previous research assessing the outcomes of demanding medical
• • • • • • • • • •
Yes, definitely Yes, no hesitation Definitely If necessary, yes If my life was dependent on it, yes If I'd known what I know n o w I would take my chance but I've come this far Only because the other option doesn't bear thinking about. It's the lesser o f t w o evils I often ask myself the same question, and usually the answer is no, but I suppose if I really had to N o t if I didn't have to Difficult question, I wouldn't have an honest answer
Quality of life in survivors of bone marrow transplant
Fami andfriends Changedprio
Fear of
Fin,o;
Health~
recurrence
....
\
OFLIFE /
~
Sexuality
8 u r v i v a I . H ! ~ / / ~ ~ H o ~ i i i ~ g uBeii nl gt 'normal'
Work
Despair Security
B V H D = Graft-versus-host disease
Fig. I A summary model representing the dimensions which affect QL in BMT survivors
procedures such as this has tended to treat changes in QL as a simple, direct and short-term outcome of treatment; little consideration has been given to differences in the way that severe illness and radical treatment may affect individuals over time. The use of in-depth interviews has provided greater insight than might have been possible had a larger sample been employed. The cross-sectional design, while allowing identification of specific areas of concern, may limit full appreciation of the multiple transitions since it is recognized that QL is dynamic and that perceptions may change with time. However, it is clear that survival is also, in the view of these participants, a dynamic process subject to change over time. This is consistent with previous findings, not only following BMT (e.g. Freund & Siegel 1986, Belec 1992, Chao et al 1992, Haberman 1992) but also other life-threatening conditions (e.g. Schnaale et al 1983, Celia & Tress 1986). The fact that data were collected at a single point in the survival trajectory, and survivors were at various stages following BMT, may not have allowed the most accurate picture of QL to emerge. Many participants were continuing to deal with the negative effects of transplant (e.g. health concerns, lack of energy, fear of relapse) so that, to an observer, the quality of their lives may seem to be less than adequate. Despite providing vast amounts of often ambiguous data, the respondents did not generally support this, thus supporting the contention that QL can only be measured from an individual perspective using subjective measures (e.g. Ferrans & Powers 1985, Aaronson et al 1990). The findings appear to suggest that there may be a high degree of asymmetry between QL dimensions and their importance across individuals.
III
Despite the 'snapshot' view of survival offered, the findings support earlier work which provide an encouraging and optimistic view of life after BMT (e.g. Belec 1992, Haberman 1992). However, this positive outlook may be unduly favourable since the sample, of necessity, included only those BMT recipients who had survived, who were not hospitalized and who were able to attend the outpatient clinic for review. These findings are similar to those of Ferrell et al (1992a) and some common themes were identified: family and relationships, physical health, ability to work, freedom from financial distress, heightened appreciation of life, social well-being and being 'normal'. The area of spiritual well-being was not identified here, thus raising questions about the importance of this domain as a contributor to QL for all individuals.
Q L as a multi-dimensional concept The diversity of responses obtained when participants were asked to describe QL supports the belief that QL is a multi-dimensional concept with different meanings and confirms the view that it is a term that many claim to understand but few can explain (Campbell 1977), even when offered a description to help in framing their responses. Despite this, the data confirm the belief that QL is contingent on many physical, psychological and social factors that contribute to 'normal' daily living and which vary between and among individuals.
'Normality' The concept of 'being normal' following BMT must be examined. 'Normality' is a relative notion that may be distorted by distant memories, selectivity and 'wishful thinking'. Participants' frequent references to normality may represent instances of 'renormalizing', a process whereby people adjust their goals and expectations to take account of a changed life situation (Fallowfield 1990). If this is so, 'normality' may not refer to a return to the preillness level of functioning. Instead, it may refer to a process of establishing a new 'biography', which consists of as much as possible of the pre-illness and pre-BMT view of themselves but also takes account of the changes that illness and BMT have forced upon them. The need for such biographical work in reestablishing 'normality' during or after serious illness is well-attested (e.g. Bury 1982, Williams 1984, Charmaz 1987). This is difficult to measure on a single occasion and may be better assessed through longitudinal studies ascertaining the nature of life before BMT and through measurement at various points following transplantation and during the ongoing process of survival. Nonetheless, a need to resume a 'normal' life was identified by Journal of Cancer Nursing [ (3), 106-116
I 12 Journal of Cancer Nursing participants in whom completion of treatment often provoked anxiety and raised questions about the possibility of relapse/recurrence, thereby creating a conflict between the need to be independent and the need to be protected. Similar results were obtained by Brown and Kelly (1976), while Slaven (1981) revealed that the task of coping with the uncertainty of cure continues, at some level, for an indefinite period. It is important to note that, although most participants classified their QL as the same as, or better than, before BMT, one reported significant physical and psychological impairments and marked reduction in QL. Although it is tempting to assume that BMT survivors would be happy with 'just being alive', this may overlook the adaptational challenges they face (Andrykowski et al 1989a).
Adaptation These findings corroborate those suggesting that survivors undergo a period of adjustment and adaptation during which re-appraisal or reevaluation of life occurs (e.g. Schmale et al 1983, Ferrans & Powers 1985). Most participants indicated that life itself had taken on greater value and that new priorities had been established, often reflecting the need to live fuller and more meaningful lives. Areas of life that had previously provided satisfaction (e.g. work and financial success) were now superseded by issues of health and family. These findings, similar to those in cancer survivors, support the view that survival from life-threatening disease changes individual perspectives and the value placed on various aspects of life (Tross & Holland 1989).
Health and dependency The many concems expressed about health-related issues also demonstrate the important influence of health on QL following major or life-threatening treatment. The data demonstrated that BMT led to extended disruption in role functioning. Dependency, forced by the patient role, often led to counter-dependency on family members during recovery. However, as time passed, it became increasingly difficult for families to sustain the high level of support and, once the initial crisis was over and a positive prognosis given, increased attention and emotional support were often withdrawn. Many survivors reported feeling 'depressed' at being cured and frustrated at reacting 'abnormally' at the very point of success. However, as survival extended, it appeared that QL was beginning to stabilize with little change reported after 2 years. This may support the 'ceiling effect' (Andrykowski et al 1989b) and suggests, if supported by further longitudinal research, the existence of both a dynamic 'state', responsive to daily changes, and a stable 'trait' dimension to QL. Journal of CancerNursing I (3), 106-I 16
Uncertainty While the effects of BMT on families clearly vary, this does not seem to have exerted a destabilizing effect on the family life of these survivors. Interestingly, most described how BMT had brought their families closer thus positively influencing QL. However, one participant indicated a distancing of relationships and a reduced QL, appearing to support the suggestion that family relationships may significantly affect overall perceptions of QL. This is consistent with previous work noting that successful adjustment in cancer survivors often correlates with the level of support provided by close family members (e.g. Dunkel-Schetter 1984, Celia 1987). However, although family networks were repeatedly reported as integral to recovery, participants recalled episodes of family blaming and over-protectiveness. Uncertainty about prognosis and about the future generally is not, of course, confined to BMT survivors but characterizes many chronic conditions, including multiple sclerosis and rheumatoid arthritis (Locker 1991). Among its many potential effects on the family is the creation of a sense of 'frozen time', with the family trapped in the present and unable to look to the future (Penn 1983, 1985). Reflecting upon her work with families affected by human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS), Walker (1995) has stressed the importance of reorienting a family to the future so that it can become a regular, dynamic system again. Being frozen in a present orientation because of uncertainty about the future is said to place individuals in 'an out of the ordinary state with which others cannot empathize' (Pierret 1992). If the uncertainty confronting BMT survivors exerts similar effects, this may help to explain the distancing that some participants described in their relationships with others. This, again, is not exclusive to BMT survivors. Writing about similar effects in the relationships of people with various cancers, Fallowfield (1990) attributes this to the stigma of life-threatening conditions and the threat that they pose to illusions of personal invulnerability.
Relationships The effects of BMT on participants' relationships with partners, friends and family echo some of those reported by Thompson and Pitts (1992) in their review of the effects of various chronic illnesses upon spousal relationships. Areas of overlap include reduction in the frequency and satisfaction with sexual relations and reports of over-protectiveness and over-solicitousness. However, Thompson and Pitts (1992) suggest that illness causes problems in some marriages, but not in all. A similarly varied picture was uncovered across these survivors and
Quality of life in survivors of bone marrow transplant
across the different relationships of individual survivors; many said that their experiences had positively affected their relationships. It may be that the effects of any health-impairing condition depend more upon the nature of the relationship prior to the onset of the condition than on the changes that the condition brings. But, just as family networks were regarded important to recovery, relationships with friends, peers and work colleagues were also important. Some survivors described friends who had 'pulled away' because of discomfort with the diagnosis/ treatment; others described the deepening of such relationships. Other recipients reflected the need for an ongoing relationship with health-care professionals, particularly nurses, even when considerable time had elapsed since transplantation. This, again, is consistent with other findings highlighting the need for continuing support from the health-care team (Molasiotis et al 1997).
Survival Seeing others with recurrent disease after BMT, frequently led survivors to ask 'Why have I survived?; survivors frequently tried to reach an understanding of their experience. This quest for meaning has previously been reported among survivors of cancer (Shanfield 1980) and BMT (Stevens 1992)and among people with HIV/AIDS (Walker 1995). 'Survivor guilt', expressed by some, is rarely addressed in the literature. It is only very recently that the concept has attracted attention in HIV/AIDS with the appearance of work exploring the feelings of guilt experienced by some gay men who are HIV negative but who have lost friends and/or partners to AIDS (Odets 1995). The only literature in which it occurs with any consistency is that describing the psychological effects of the Holocaust on survivors (e.g. Lifton 1980). However, the enormity and the specific context of the events encountered by Holocaust survivors imparts particular qualities to the survivor guilt that they experience, thus shedding relatively little light on the guilt reported by BMT survivors.
Social roles Retention of valued social roles was generally associated with great satisfaction, yet Celia (1987) has demonstrated that even the most employable and fully recovered of cancer survivors experience both a reduction in benefits and outright insurance rejection. Similarly, some BMT survivors were experiencing difficulties with employment and insurance discrimination, subsequently choosing not to reveal their full medical history to new acquaintances/employers so as to avoid the stigma
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and often irrational attitudes held towards cancer and other life-threatening diseases. The concerns and frustrations expressed by participants about returning to work and establishing financial security have also been reported by those with other medical conditions. For example, Oddy (1984), in a longitudinal study of people with closed head injury, found that while most were able to return to work, their subsequent role was often altered, at least at first, resulting in decreased job satisfaction. Similar findings were reported in Byrne's (1982) longitudinal study of male survivors of myocardial infarction (MI) although the proportion of men who were able to maintain their pre-MI levels of occupational functioning decreased over time.
C u r r e n t concerns Consistent with the post-treatment concerns of other cancer survivors (e.g. Gambosi & Ulreich 1990), the greatest concerns in the present life of participants centred on worry about long-term complications and family issues. However, while many of the challenges differ little between BMT and cancer survivors, decline in physical, occupational or financial status may be more substantial and prolonged in BMT survivors due to their relative youth. The theme 'staying healthy and growing old' illustrates the desire to live a long and useful life and to see the 'family grow up', highlighting the fact that the survival process extends well beyond the transplant period itself. The fact that the mean age of participants was 35 years, ranging between 19 and 47, suggests that the QL implications for BMT survivors may differ from those experienced by those facing serious illnesses occurring later in life. A potentially useful parallel is people with HIV/AIDS, many of whom also tend to be quite young (Aggelton & Kapila 1992). It has been pointed out that people with AIDS may have to deal with issues of mortality at an 'inappropriate' life stage (Sherr 1989). At a time when their peers may still be engaged in constructing their lives, young people with AIDS and other potentially lifethreatening conditions are confronted with the need to think about the possible end of their lives, perhaps leading to feelings of having been robbed of a future (Green et al 1996). The fact that this demand is 'off-time' may make it especially difficult to deal with. For many BMT survivors, their relative youth may complicate the process of coping with their condition, raising a wide range of important life issues that may need to be addressed and that may affect their QL. One such issue, voiced by many participants, relates to having children. Concern about fertility and having children are also experienced by people with other conditions. For example, patients with some cancers may experience a temporary or Journal of CancerNursing I (3), 106-I 16
I 14 Journal of Cancer Nursing permanent reduction in fertility following radiotherapy or chemotherapy. Likewise, one concern voiced by these B M T survivors centred around fears about not being able to have children. The 'simple' desire to survive to have children and/or grandchildren m a y b e interpreted as a continuation and exemplar o f the theme of 'reestablishing life/normalcy'. As in previous studies (e.g. Ferrell et al 1992b), concern about possible infertility ~vas particularly important to those without children. For unmarried survivors, concem about the degree of disclosure related to their past medical history was important in contemplating new relationships. Survivors have been shown to be less inclined towards intimacy (Celia & Tross 1986), suggesting a relationship between the BMT experience, sexuality and the ability to engage in warm, interpersonal relationships. However, most expressed optimism and felt that their attitudes towards life and intimate relationships had been influenced positively. The data presented indicate that, whilst overall QL is predominantly reported as 'better' after transplantation, there is considerable variation in physical and psychosocial functioning between participants. Whilst some reported little or no physical or psychosocial morbidity, others reported significantly poorer functioning. However, irrespective of such factors, only one participant indicated unequivocally that he would not make the same choice again. Others, recognizing the value of BMT in extending life, indicated that, after careful consideration, they would be prepared to undergo BMT again. Not only does this appear to reflect the significant impact of BMT on life as a whole, but also the value each individual places on life itself. This work suggests that, although several congruent factors appear to influence QL across studies, there seem to be many issues that are specific to this population, and to 'survivorship', which appear to influence the QL of BMT survivors.
CONCLUSIONS Most cancer survival literature centres on the medical outcome(s) of disease and treatment; considerably less is known about the effects of survival on the individual and little information about the QL of longer-term survivors is available (Wyatt & Friedman 1996). Such research as is available has largely focused on the developmental problems of children surviving cancer (e.g. Koocher et al 1980) and, only recently, on the QL of adult survivors (e.g. Celia & Tross 1986, Ferrell et al 1992a, 1992b). This study has attempted to identify the concerns and issues related to the QL of a small sample of BMT survivors and suggests that QL, like survival Journalof CancerNu~ing 1(3), 106-116
itself, is a dynamic concept contingent on many factors affecting individuals in different ways. Thus, it must be recognized that research on the correlates of QL following BMT is in its infancy and only with continued investigation can the full effects be understood. Although most of the survivors expressed many similar perceptions of QL, and the global impression was that they were 'doing well', it must be noted that one participant described a life of 'misery ... disability ... aloneness ... and steady decline'. Thus survival after BMT presents a significant challenge for both BMT recipients and for those health professionals involved in their care. Whilst many similarities between survivors have been identified, it is clear that carers must remain sensitive to individual differences and promote a collaborative partnership with members of the multi-disciplinary health-care team to meet the often complex needs of individual BMT survivors.
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Odets W (1995) In the shadow of the epidemic: being HIVnegative in the age of AIDS. Cassell, London Padilla G V, Presant C, Grant M M, Metter G, Lipsett J, Heide F (1983) Quality of life index for patients with cancer. Research in Nursing and Health 6:117-126 Penn O (1983) Coalitions and binding interactions in families with chronic illness. Family Systems Medicine 1(1): 16-25 Penn P (1985) Feed-forward, future questions, future maps. Family Process 24(3): 299-310 Pierret J (1992) Coping with AIDS in everyday life. In: M Pollak, G Paicheler, J Pierret (eds) AIDS: a problem for sociological research. Sage Publications, London: 66-84 Schmale A H, Morrow G R, Schmidt M H, Adler L M, Enelow A, Murawski B J, Gates C (1989) Well-being of cancer survivors. Psychosomatic Medicine 45(2): 163-169 Shanfield S B (1980) On surviving cancer: psychological considerations. Comprehensive Psychiatry 21 (2): 125-134 Sherr L (1989) AIDS. In: L Sherr (ed.) Death, dying and bereavement. Blackwell Scientific Publications, Oxford: 179-196 Slaven L A (1981 ) Evolving psychosocial issues in the treatment of childhood cancel: In: G P Koocher, J E O'Malley (eds) The Damocles syndrome: psycho-social consequences of surviving childhood cancer. McGraw Hill, New York: 1-30 Smith J A (1996a) Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychology and Health 11:261-271 Smith J A (1996b) Evolving issues for qualitative psychology. In: J T E Richardson (ed.) Handbook of Qualitative Research Methods for Psychology and the Social Sciences, BPS Books, Leicester: 189-201 Smith J A, Flowers P (1997) Interpretative phenomenological analysis and the psychology of health and illness. In: L Yardley (ed.) Material Discourse of Health and Illness. Routledge, London: 68-91 Stevens R H (1992) Patients who have undergone bone marrow transplantation: their quest for meaning. Oncology Nursing Forum 19(6): 899-905 Syrjala K L, Chapko M K, Vitaliano P R Cummings C, Sullivan K M (1993) Recovery after allogeneic marrow transplantation: prospective study of long-term physical and psychosocial functioning. Bone Marrow Transplantation 11 : 319-327 Thompson S C, Pitts J S (1992) In sickness and in health: chronic illness, marriage and spousal caregiving. In: S Spacapan, S Oskamp (eds) Helping and Being Helped: naturalistic studies. Sage Publications, Newbury Park Ca.: 115-151 Tross S, Holland J C (1989) Psychological sequelae in cancer survivors. In: J C Holland, J H Rowlands (eds) Handbook of Psycho-Oncology. Routledge, Oxford: 101-133 Walker G (1995) In the Midst of Winter: Counselling Families, Couples and Individuals with AIDS infection (revised edition). Norton, New York Williams G (1984) The genesis of chronic illness: narrative reconstruction. Sociology of Health and Illness 6: 175-200 Wingard J R, Curbow B, Baker F, Piantadosi S (1991) Health functional status and employment of adult survivors of bone marrow transplantation. Annals of Internal Medicine 144:113-118 Wolcott D L, Wellisch D K, Fawzy F I, Landsverk J (1986) Adaptation of adult bone marrow transplant recipient long-term survivors. Transplantation 41:478-483 Wolcott D L, Fawzy F I, Wellisch D K (1988) Psychiatric aspects of bone marrow transplantation: a review and current issues. Psychiatric Medicine 4(3): 299-317 Journal of CancerNursing I (3), ] 06-116
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Young K J, Longman A J (1983) Quality of life and persons with melanoma: a pilot study. Cancer Nursing 6: 219-225
Although prospects for long-term survival after bone marrow transplantation ( B M T ) have increased, little is known about the nature or quality of that survival. Concern over the quality of life (QL) of survivors thus becomes increasingly important. This study attempts to define the concept of Q L in a small sample of B M T survivors, I - 3 years after transplant, and to identify the factors influencing the quality of survival. Interpretative phenomenological analysis of in-depth interviews indicated that survivors, despite lingering side-effects, viewed their Q L as the same or better than before BMT, thus challenging the long-standing impression that they experience a less than optimal QL. However, whilst many similarities between survivors have been identified, and the global impression was that they were 'doing well', this must not overshadow the fact that one survivor described a life of'misery ... disability ... aloneness ... and steady decline'.There is little doubt that carers must remain sensitive to individual differences and promote collaboration within the healthcare team to meet the often complex needs of B M T survivors. INTRODUCTION
Susan Holmes BSc, PhD, SRN, FRSH,CMS, Professor of Nursing, Canterbury Christ Church College, Canterbury, Kent CTI I QU, U K Adrian Coyle BA, PhD, CPsychol, Lecturer in Psychology, Department of Psychology, University of Surrey, Guildford, Surrey GU2 5XH, U K Evelyn Thomson MSc, RGN, Department of Nursing and Midwifery, University of Surrey, Guildford, Surrey GU2 5XH, UK Correspondence to: Professor Holmes.
Many of the current questions in cancer care centre on the choice of treatment for individual patients. Although medical advances may mean being able to save lives, this may be at the expense of significant mutilation, chronic disability or extensive disruption of 'normal' daily living. The assumption that this reduces the quality of life (QL) has led to an upsurge in research seeking to evaluate the impact of such treatment(s) on QL; this has become an important measure of patient outcome. QL has intuitive appeal as an evaluation criterion, capturing the notion that the ultimate concern of healthcare is patient well-being. Indeed, Lehman (1983) asserts that providers of care must ask not only whether their efforts alleviate symptoms, but also whether they enhance patients' QL. However, while recognizing the inherent attraction of QL as an outcome measure, its measurement will not be truly possible until an effective means of identifying and quantifying its constituent parts is available. This, in turn, depends upon a satisfactory definition of the concept; this is currently far from clear. Although QL has been equated with numerous terms it is often associated with life satisfaction (e.g. Young & Longman 1983, Ferrans & Powers 1985) and with the 'gap' between hopes/ expectations and reality (Calman 1984, Ferrel et al 1992a). It is generally agreed that QL is a
journal of CancerNursing I (3), 106 I 16 © PearsonProfessionalLtd 1997
multidimensional concept encompassing psychological, social, economic and health dimensions (e.g. Ferrans & Powers 1985, Aaronson 1988), to which others would add spiritual (e.g. Ferrel et al 1992a) and occupational (Fallowfield 1990) factors. It is also agreed that the importance of such factors varies not only between individuals but also within individuals over time (Padilla et al 1983). Therefore, it is not surprising that there are almost as many measurement instruments as there are definitions. However, the growing consensus is that QL is best studied from an individual perspective using subjective measures (e.g. Ferrans & Powers 1985, Holmes & Dickerson 1987, Aaronson et al 1990).
BONE MARROW TRANSPLANTATION Q U A L I T Y O F LIFE
(BMT) AND
Although bone marrow transplantation (BMT) is increasingly used to treat both malignant and nonmalignant conditions, research on its clinical outcomes has, to date, primarily focused on morbidity and mortality. Thus, while prospects exist for long-term survival, comparatively little is known about the nature or quality of that survival. Previous literature has identified the complex needs of patients across all phases of BMT, generally focusing on single areas such as functional status
Quality of life in survivors of bone marrow transplant
(Wingard et al 1991), physical complications (Andrykowski et al 1989a) and psychological or sexual dysfunction (Wolcott et al 1986, Mashberg et al 1989) and relying largely on existing measuring instruments or general QL scales. This lack of specificity with regard to measurement instruments casts some doubt on both the reliability and validity of their findings in relation to the overall QL of BMT survivors. However, studying QL in this population is difficult due to the generally small numbers of transplants performed in single centres, the relatively high mortality rate and the fact that many patients live long distances from such centres (Wolcott et al 1988). Such studies have, therefore, primarily retied on cross-sectional designs, with patients at various stages following transplant and without any pre-transplant assessment (Wolcott et al 1986a, Wingard et al 1991). However, although changes cannot be attributed to BMT alone, such work does identify at least some of the individual responses to the physical, mental and social factors influencing daily living. It also identifies areas requiring further investigation by highlighting issues of specific concern for BMT survivors. For example, Ferrel et al (1992a) demonstrated that BMT survivors identified eight dimensions of QL: family/relationships; independence; physical, mental and spiritual health; ability to work and experience no financial distress; heightened appreciation of life and being 'normal' [described as being what QL is compared to what the individual wants it to be (Ferrel et al 1992a)]. The numerous side-effects, probable infertility, fear of relapse, decrements in strength/stamina and limitations in work and other activities were also important. Some longitudinal studies, investigating psychological (Andrykowski et al 1989b) and physical (Syrjala et al 1993) function, have demonstrated a 'ceiling effect' occurring around 2 years after BMT, after which further improvement is minimal. Other studies (e.g. Haberman 1992) indicate that QL deficits may persist even 10 years later. However, the extent of distress attributed to such deficits is consistently low, suggesting that at least some adaptation occurs.
METHOD Although most people have an intuitive understanding of QL, the concept means different things to different people; it is a term that 'everyone understands but few can define' (Campbell 1977). The provision of an overview of QL, before asking participants to define this for themselves, was therefore felt to be necessary. Although this may appear to be at odds with the individualized, subjective focus of the research, a global description was chosen to orient participants to the topic while
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encompassing many of the existing representations of QL in the literature. This was: Quality of life is an abstract and complex term, fluctuating with time and circumstance and representing individual responses to the physical, mental and social factors that contribute to 'normal' daily living (Holmes & Dickerson 1987). The focus here was to establish the meaning of QL for the participants and to identify those factors affecting their 'normal' daily living. A convenience sample of BMT survivors, 1-3 years after transplantation, was recruited through the out-patient clinic of a regional BMT centre. Participants were interviewed by a single interviewer, using a semi-structured format, to explore their perceptions of QL and the factors influencing it. This ensured that the core research issues were addressed and permitted in-depth exploration of participants' subjective representations of QL and QL-related experiences. Using a single interviewer avoided the risk of interinterviewer variability. During a standardized introduction, the description of QL was given and participants were asked to describe what QL meant to them. Participants were then asked whether, and how, their QL had altered since BMT, to identify their greatest current concerns in life, to comment on the effects of BMT on their family and whether, if they could 'turn the clock back', they would undergo BMT again. Concluding comments about their QL were encouraged. Where necessary, neutral probes were used to encourage elaboration of responses, thus ensuring that the interview remained focused on QL while encouraging participants to give more detailed descriptions of events. The interview questions were constructed on the basis of a literature review related to QL and BMT in an~ attempt to cover salient dimensions of the research domain. They were designed to access the effects of BMT on QL generally and on specific aspects of QL from individual perspectives. To enhance the validity of the data, the questions were checked by staff experienced in the care of BMT patients. These staff confirmed that the questions adequately represented the research topic and acted as key informants throughout the research. Interviews were audiotaped and transcribed verbatim. In accordance with the research focus on BMT survivors' subjective representations of their experiences, data were analysed using interpretative phenomenological analysis (IPA) (Smith 1996a, Smith et al 1997). The aim of this approach is to explore participants' views of their experiences in their own terms within a realist ontology. However, IPA recognizes that it is impossible to access participants' worlds directly or completely. The researcher must engage in a process of Journal of CancerNursing I (3), 106116
108 Journalof CancerNursing
M E A N I N G OF Q U A L I T Y OF LIFE • • • • • •
Being physically fit Being able to do as one wants Being 'normal' Being physically and mentally healthy Being happy Family and relationships
EFFECT OF BMT O N FAMILY Relationships - Distancing of relationships Strengthening of relationships EFFECT OF BMT O N FRIENDS Relationships - Distancing of relationships - Strengthening of relationships
EFFECT OF BMT O N Q U A L I T Y OF LIFE • • • •
• • • • •
Relationships with others Social adjustment b y / t o family, friends and peers Dealing with physical complications Re-establishing life - Re-establishing life was easy - Re-establishing life was difficult Returning to work/financial concerns Increased value f o r life Establishing a new normalcy Establishing new priorities Greater security
interpretation, using their own frameworks of meaning, in order to make sense of participants' worlds. Hence the approach is both phenomenological and interpretative. Turning to specific analytic techniques, the interview transcripts were analysed for recurrent themes. This involved the researchers attempting, as far as possible, to suspend their knowledge of the issues under consideration with the aim of 'seeing' the world as experienced by the participants. The transcripts were read repeatedly and analysed through an examination of both semantic content and language use. Key words, phrases and explanations were highlighted, coded as emergent themes and labelled with a word or phrase which appeared to capture their essence. Although these themes are represented as 'emerging' from the data, the process of identifying themes necessarily involved some degree of interpretation by the researchers. In presenting the themes, each is illustrated with extracts from the data, chosen for the way in which they exemplify that theme. As the aim was to explore and illustrate concepts related to QL rather than to chart their frequency, data were not quantified. In any case, the introduction of quantification into qualitative research can be problematic as there are no pre-defined criteria for determining the extent to which themes must recur before they are deemed to be significant. To minimize the chances of one researcher's interpretative framework leading to an idiosyncratic analysis (i.e. to promote reliability), the analysis was conducted independently by two researchers. Disagreements about coding and category definitions were discussed and resolved, resulting in 94% agreement on the coding scheme. The findings were also checked for meaningfulness by the key informants. It is appreciated that the inter-rater reliability procedure originates from a more Journal of CancerNursing I (3), 106-I 16
GREATEST CONCERNS IN LIFE • • • •
W o r r y a b o u t long-term complications Family concerns Staying healthy and growing old Establishing close relationships
traditional research paradigm than was adopted in the present study. However, qualitative researchers have yet to agree on a common set of evaluative criteria that are regarded by the wider research community as equivalent to criteria such as reliability in their rigour and legitimacy (Smith 1996b). Following the example of Flowers et al (1997) in their IPA-based research, a traditional evaluative approach was adopted on pragmatic grounds.
RESULTS Ten BMT survivors were interviewed (6 male, 4 female). Their mean age was 35 years (range: 19-49 + 11.5); mean age at the time of transplantation was 32.5 years (range 1 8 4 7 + 10.5). The mean duration of survival was 21.1 months (+ 8.4), ranging from 12-34 months after transplant. The major themes emerging from the data are summarized in Table 1 and presented below.
Meaning of QL Although a general description of QL was provided, participants experienced difficulty in expressing what the term meant to them. For example, one responded: 'I can't really tell you what it is, I just know that it's different'. Six themes were identified. The first, 'being able to do as one wants' centred on issues of choice and control. Survivors clearly wanted to be active partners rather than passive recipients in planning their lives. Another major theme was 'being healthy, physically and mentally'. Given participants' experience of serious illness, the importance attached to this dimension was not unexpected. For example, one defined QL as: 'Being healthy. I don't
Quality of life in survivors of bone marrow transplant care about anything else'; another said: 'having my health' was the most important factor in defining his QL. A related theme concerned 'being physically fit'. Among the specific foci here were the ability to participate fully in family life and to resume preillness activities without physical restriction. A term invoked in defining QL was 'being normal'. However, diverse meanings were attributed to this, ranging from 'being like everyone else' to 'just being able to be myself'. The theme of 'family and relationships' pointed to their importance in providing life satisfaction. Finally, two participants defined QL simply as 'being happy'.
Effects of BMT on Q L Nine major themes were discerned in the responses. Only one said 'nothing's changed'. All participants spoke of their experience of 're-establishing life/normalcy' after BMT. Although two described this as 'straightforward' and 'easy', most had found it more difficult. Specific difficulties encompassed physical, social or family issues and psychological problems (such as coming to terms with having survived) and revealed that this was dynamic, changing with time. For example, one said 'I've had to kind of rebuild my life again'. Other related themes concerned establishing new ways of operating due to the experience of BMT and trying to return to a pre-BMT way of life. This involved talking about 'establishing new priorities', such as prioritizing family relationships over more materialistic aspects of life. Having faced a lifethreating illness, most participants stated that they were leading fuller, more meaningful lives and had developed a greater appreciation for life; many aspects of life were reassessed. One said: 'The most important thing in my life is my husband and son. Everything else, including work, comes a very poor second.' Another stated 'Money doesn't interest me any more, family comes first'. Connected with this was the theme of 'increased value for life'. Responses included: 'It's like being reborn as far as I ' m concerned', ' I ' m glad to be here and that's it', and 'I don't just exist now, I ' m actually doing something with my life'. With regard to returning to a pre-BMT way of life, many participants spoke of frustration in 'returning to work and establishing financial security'. Most had experienced problems in obtaining life insurance. One had developed his own survival strategy of choosing not to reveal his medical history to prospective employers, reasoning that: 'They look at you with different eyes if they know, despite the fact that you're more than capable of doing the job'. Others had difficulty in obtaining a mortgage. All participants spoke of difficulties associated with 'dealing with physical complications' including
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fatigue, decreased strength, graft-versus-host disease and pulmonary complications. Others were concerned about their inability to have children. For example: 'My main concern from day one is my inability to have kids, the fact that I'll never know what my children would have looked like'. Some reported a reduction in both the frequency and satisfaction with sexual relations reflecting, in part, physical symptoms and, in part, the concern of their partner, who was anxious that the patient would be 'hurt' should sexual activity be attempted. Participants also talked of 'social readjustment by family, friends and peers' as a major source of support following transplantation. However, although some reported family members as generally supportive and family life as now 'kind of back to normal', this had taken time; some significant others were said to be over-protective. For example: 'My mum, she's still a bit protective of me, I think she always will be.' This was an ongoing problem for many participants, particularly where friends and fellow employees were concerned. 'Relationships with others' were important. Some participants felt they had become more tolerant, accepting people more readily and being more appreciative of them. Others reflected the need for an ongoing relationship with healthcare professionals, even when considerable time had elapsed since transplantation. Some participants, involved in a close relationship prior to BMT, felt that this had 'brought us closer together'. Others, who were unattached, spoke of the difficulty in getting close to someone 'because I don't know what's going to happen to me'. The final theme of 'greater security' was repeatedly expressed by those receiving their transplant during the second remission. For these participants, BMT had increased their confidence. One said: 'I feel a bit more confident because it was always at the back of my mind that I hadn't had a transplant' and another: 'I've got a bit more peace of mind now'.
Comparison of Q L before and after transplantation Despite assiduous attempts to clarify the responses, large amounts of often ambiguous data were elicited that were neither uniformly positive nor negative. The factors said to be responsible for improved post-BMT QL were increased confidence; security (about health); happiness and enjoyment of life; an opportunity to become involved in activities that would not ordinarily have been considered; and a reappraisal of priorities, attitudes and relationships. Although most participants perceived their postBMT QL as 'better overall', they still identified many negative factors including psychological problems (such as depression and lowered selfesteem); social problems (such as being treated Journal of Cancer Nursing 1(3), 106-116
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differently by over-solicitous others); and physical problems (such as fatigue). One claimed that 'adapting to physical problems isn't easy'; this had 'definitely reduced my quality of life'.
Principle concerns of survivors at time of interview All participants spoke of 'worry about long-term complications', indicating cautious scepticism about their future health. For example: 'I worry about the sort of side-effects of the transplant. It's a horrendous regimen and obviously takes a toll on your body, not only physically but mentally'. Again, for those transplanted in second remission, fear of relapse was prominent: 'I think I'll still be a bit wary even 5 years on because it was 7 years before I relapsed before; it might happen again'. All participants also talked of 'family concerns' highlighting issues relating to family relationships and/or their ability to take care of their family. For example: 'Things are in turmoil, we've got no life together, simple as that' and 'I just want to be there to take care of my family'. This theme overlapped with that of 'staying healthy and growing old', illustrating the desire to live a long and useful life and 'to see the family grow up and maybe have grandchildren'. The final theme, 'establishing close relationships', was referred to by those participants who were not involved in stable relationships prior to BMT and who talked of being 'wary of getting attached to people', describing BMT as being 'like a barrier when you go out with anybody. I always think, well you can't get serious'. However, all anticipated that these feelings would diminish as confidence about the future increased.
strengthening of friendships. ' I ' m a lot closer to my friends, ... they stuck by me when I was in hospital' or '... my friends being there was very important'. However, some described a distancing effect. For example, one said: 'One of my friends I hadn't seen for a while said "I just don't know what to say to you, you know, with you having that illness"' and another: 'There's that wee bridge there. I don't think they can handle it; they still tend to treat me differently'.
Would they go through B M T again? Participants were asked whether, if they could 'turn the clock back', they would go through BMT again. These responses have not been coded but are presented in their entirety in Table 2. Only three responded with unequivocally affirmative answers. Finally, participants were offered the opportunity to add any comments they wished regarding their QL. This data emphasized both the significant impact of BMT on participants and expressed the gratitude of survivors. For example: 'All I remember thinking when I got the marrow back was that it was this tiny thing, this tiny bag of stuff that upset my whole life' and 'The only way I can repay it is to try to raise some money for leukaemia research ... it's my way of trying to repay and saying thank you'. Overall, the themes identified can be grouped into five principal domains (Table 1): specific issues related to survival; physical, psychological and social well-being; and financial concerns. A summary model, identifying factors affecting QL in this patient group, has been developed (Fig. 1).
DISCUSSION Effects of transplantation on the participants' family This question, designed to establish whether survivors acknowledged any impact on their family, provided limited information. Despite the earlier focus on family relationships, some participants claimed here that BMT had exerted little or no effect on their family. However, specific questions revealed that, for most, the impact had been positive and had strengthened family relationships. One participant, who had received bone marrow from her sister, said: 'Definitely I ' m much closer to my sisters, especially the one who gave me the bone marrow. At times, it seems we're joined at the hip'. However, one respondent spoke of a distancing effect: 'I don't see my daughter as often and the wife's out more and more'. Although participants were not specifically asked about the effects of BMT on relationships with friends, this was often mentioned. Many respondents reported an increasing closeness and Journal of CancerNursing I (3), 106- I 16
Although the study sample was small, and the generalizability limited, these findings illustrate the impact of BMT on these survivors, thus contributing to the development of knowledge of its long-term consequences. Previous research assessing the outcomes of demanding medical
• • • • • • • • • •
Yes, definitely Yes, no hesitation Definitely If necessary, yes If my life was dependent on it, yes If I'd known what I know n o w I would take my chance but I've come this far Only because the other option doesn't bear thinking about. It's the lesser o f t w o evils I often ask myself the same question, and usually the answer is no, but I suppose if I really had to N o t if I didn't have to Difficult question, I wouldn't have an honest answer
Quality of life in survivors of bone marrow transplant
Fami andfriends Changedprio
Fear of
Fin,o;
Health~
recurrence
....
\
OFLIFE /
~
Sexuality
8 u r v i v a I . H ! ~ / / ~ ~ H o ~ i i i ~ g uBeii nl gt 'normal'
Work
Despair Security
B V H D = Graft-versus-host disease
Fig. I A summary model representing the dimensions which affect QL in BMT survivors
procedures such as this has tended to treat changes in QL as a simple, direct and short-term outcome of treatment; little consideration has been given to differences in the way that severe illness and radical treatment may affect individuals over time. The use of in-depth interviews has provided greater insight than might have been possible had a larger sample been employed. The cross-sectional design, while allowing identification of specific areas of concern, may limit full appreciation of the multiple transitions since it is recognized that QL is dynamic and that perceptions may change with time. However, it is clear that survival is also, in the view of these participants, a dynamic process subject to change over time. This is consistent with previous findings, not only following BMT (e.g. Freund & Siegel 1986, Belec 1992, Chao et al 1992, Haberman 1992) but also other life-threatening conditions (e.g. Schnaale et al 1983, Celia & Tress 1986). The fact that data were collected at a single point in the survival trajectory, and survivors were at various stages following BMT, may not have allowed the most accurate picture of QL to emerge. Many participants were continuing to deal with the negative effects of transplant (e.g. health concerns, lack of energy, fear of relapse) so that, to an observer, the quality of their lives may seem to be less than adequate. Despite providing vast amounts of often ambiguous data, the respondents did not generally support this, thus supporting the contention that QL can only be measured from an individual perspective using subjective measures (e.g. Ferrans & Powers 1985, Aaronson et al 1990). The findings appear to suggest that there may be a high degree of asymmetry between QL dimensions and their importance across individuals.
III
Despite the 'snapshot' view of survival offered, the findings support earlier work which provide an encouraging and optimistic view of life after BMT (e.g. Belec 1992, Haberman 1992). However, this positive outlook may be unduly favourable since the sample, of necessity, included only those BMT recipients who had survived, who were not hospitalized and who were able to attend the outpatient clinic for review. These findings are similar to those of Ferrell et al (1992a) and some common themes were identified: family and relationships, physical health, ability to work, freedom from financial distress, heightened appreciation of life, social well-being and being 'normal'. The area of spiritual well-being was not identified here, thus raising questions about the importance of this domain as a contributor to QL for all individuals.
Q L as a multi-dimensional concept The diversity of responses obtained when participants were asked to describe QL supports the belief that QL is a multi-dimensional concept with different meanings and confirms the view that it is a term that many claim to understand but few can explain (Campbell 1977), even when offered a description to help in framing their responses. Despite this, the data confirm the belief that QL is contingent on many physical, psychological and social factors that contribute to 'normal' daily living and which vary between and among individuals.
'Normality' The concept of 'being normal' following BMT must be examined. 'Normality' is a relative notion that may be distorted by distant memories, selectivity and 'wishful thinking'. Participants' frequent references to normality may represent instances of 'renormalizing', a process whereby people adjust their goals and expectations to take account of a changed life situation (Fallowfield 1990). If this is so, 'normality' may not refer to a return to the preillness level of functioning. Instead, it may refer to a process of establishing a new 'biography', which consists of as much as possible of the pre-illness and pre-BMT view of themselves but also takes account of the changes that illness and BMT have forced upon them. The need for such biographical work in reestablishing 'normality' during or after serious illness is well-attested (e.g. Bury 1982, Williams 1984, Charmaz 1987). This is difficult to measure on a single occasion and may be better assessed through longitudinal studies ascertaining the nature of life before BMT and through measurement at various points following transplantation and during the ongoing process of survival. Nonetheless, a need to resume a 'normal' life was identified by Journal of Cancer Nursing [ (3), 106-116
I 12 Journal of Cancer Nursing participants in whom completion of treatment often provoked anxiety and raised questions about the possibility of relapse/recurrence, thereby creating a conflict between the need to be independent and the need to be protected. Similar results were obtained by Brown and Kelly (1976), while Slaven (1981) revealed that the task of coping with the uncertainty of cure continues, at some level, for an indefinite period. It is important to note that, although most participants classified their QL as the same as, or better than, before BMT, one reported significant physical and psychological impairments and marked reduction in QL. Although it is tempting to assume that BMT survivors would be happy with 'just being alive', this may overlook the adaptational challenges they face (Andrykowski et al 1989a).
Adaptation These findings corroborate those suggesting that survivors undergo a period of adjustment and adaptation during which re-appraisal or reevaluation of life occurs (e.g. Schmale et al 1983, Ferrans & Powers 1985). Most participants indicated that life itself had taken on greater value and that new priorities had been established, often reflecting the need to live fuller and more meaningful lives. Areas of life that had previously provided satisfaction (e.g. work and financial success) were now superseded by issues of health and family. These findings, similar to those in cancer survivors, support the view that survival from life-threatening disease changes individual perspectives and the value placed on various aspects of life (Tross & Holland 1989).
Health and dependency The many concems expressed about health-related issues also demonstrate the important influence of health on QL following major or life-threatening treatment. The data demonstrated that BMT led to extended disruption in role functioning. Dependency, forced by the patient role, often led to counter-dependency on family members during recovery. However, as time passed, it became increasingly difficult for families to sustain the high level of support and, once the initial crisis was over and a positive prognosis given, increased attention and emotional support were often withdrawn. Many survivors reported feeling 'depressed' at being cured and frustrated at reacting 'abnormally' at the very point of success. However, as survival extended, it appeared that QL was beginning to stabilize with little change reported after 2 years. This may support the 'ceiling effect' (Andrykowski et al 1989b) and suggests, if supported by further longitudinal research, the existence of both a dynamic 'state', responsive to daily changes, and a stable 'trait' dimension to QL. Journal of CancerNursing I (3), 106-I 16
Uncertainty While the effects of BMT on families clearly vary, this does not seem to have exerted a destabilizing effect on the family life of these survivors. Interestingly, most described how BMT had brought their families closer thus positively influencing QL. However, one participant indicated a distancing of relationships and a reduced QL, appearing to support the suggestion that family relationships may significantly affect overall perceptions of QL. This is consistent with previous work noting that successful adjustment in cancer survivors often correlates with the level of support provided by close family members (e.g. Dunkel-Schetter 1984, Celia 1987). However, although family networks were repeatedly reported as integral to recovery, participants recalled episodes of family blaming and over-protectiveness. Uncertainty about prognosis and about the future generally is not, of course, confined to BMT survivors but characterizes many chronic conditions, including multiple sclerosis and rheumatoid arthritis (Locker 1991). Among its many potential effects on the family is the creation of a sense of 'frozen time', with the family trapped in the present and unable to look to the future (Penn 1983, 1985). Reflecting upon her work with families affected by human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS), Walker (1995) has stressed the importance of reorienting a family to the future so that it can become a regular, dynamic system again. Being frozen in a present orientation because of uncertainty about the future is said to place individuals in 'an out of the ordinary state with which others cannot empathize' (Pierret 1992). If the uncertainty confronting BMT survivors exerts similar effects, this may help to explain the distancing that some participants described in their relationships with others. This, again, is not exclusive to BMT survivors. Writing about similar effects in the relationships of people with various cancers, Fallowfield (1990) attributes this to the stigma of life-threatening conditions and the threat that they pose to illusions of personal invulnerability.
Relationships The effects of BMT on participants' relationships with partners, friends and family echo some of those reported by Thompson and Pitts (1992) in their review of the effects of various chronic illnesses upon spousal relationships. Areas of overlap include reduction in the frequency and satisfaction with sexual relations and reports of over-protectiveness and over-solicitousness. However, Thompson and Pitts (1992) suggest that illness causes problems in some marriages, but not in all. A similarly varied picture was uncovered across these survivors and
Quality of life in survivors of bone marrow transplant
across the different relationships of individual survivors; many said that their experiences had positively affected their relationships. It may be that the effects of any health-impairing condition depend more upon the nature of the relationship prior to the onset of the condition than on the changes that the condition brings. But, just as family networks were regarded important to recovery, relationships with friends, peers and work colleagues were also important. Some survivors described friends who had 'pulled away' because of discomfort with the diagnosis/ treatment; others described the deepening of such relationships. Other recipients reflected the need for an ongoing relationship with health-care professionals, particularly nurses, even when considerable time had elapsed since transplantation. This, again, is consistent with other findings highlighting the need for continuing support from the health-care team (Molasiotis et al 1997).
Survival Seeing others with recurrent disease after BMT, frequently led survivors to ask 'Why have I survived?; survivors frequently tried to reach an understanding of their experience. This quest for meaning has previously been reported among survivors of cancer (Shanfield 1980) and BMT (Stevens 1992)and among people with HIV/AIDS (Walker 1995). 'Survivor guilt', expressed by some, is rarely addressed in the literature. It is only very recently that the concept has attracted attention in HIV/AIDS with the appearance of work exploring the feelings of guilt experienced by some gay men who are HIV negative but who have lost friends and/or partners to AIDS (Odets 1995). The only literature in which it occurs with any consistency is that describing the psychological effects of the Holocaust on survivors (e.g. Lifton 1980). However, the enormity and the specific context of the events encountered by Holocaust survivors imparts particular qualities to the survivor guilt that they experience, thus shedding relatively little light on the guilt reported by BMT survivors.
Social roles Retention of valued social roles was generally associated with great satisfaction, yet Celia (1987) has demonstrated that even the most employable and fully recovered of cancer survivors experience both a reduction in benefits and outright insurance rejection. Similarly, some BMT survivors were experiencing difficulties with employment and insurance discrimination, subsequently choosing not to reveal their full medical history to new acquaintances/employers so as to avoid the stigma
I 13
and often irrational attitudes held towards cancer and other life-threatening diseases. The concerns and frustrations expressed by participants about returning to work and establishing financial security have also been reported by those with other medical conditions. For example, Oddy (1984), in a longitudinal study of people with closed head injury, found that while most were able to return to work, their subsequent role was often altered, at least at first, resulting in decreased job satisfaction. Similar findings were reported in Byrne's (1982) longitudinal study of male survivors of myocardial infarction (MI) although the proportion of men who were able to maintain their pre-MI levels of occupational functioning decreased over time.
C u r r e n t concerns Consistent with the post-treatment concerns of other cancer survivors (e.g. Gambosi & Ulreich 1990), the greatest concerns in the present life of participants centred on worry about long-term complications and family issues. However, while many of the challenges differ little between BMT and cancer survivors, decline in physical, occupational or financial status may be more substantial and prolonged in BMT survivors due to their relative youth. The theme 'staying healthy and growing old' illustrates the desire to live a long and useful life and to see the 'family grow up', highlighting the fact that the survival process extends well beyond the transplant period itself. The fact that the mean age of participants was 35 years, ranging between 19 and 47, suggests that the QL implications for BMT survivors may differ from those experienced by those facing serious illnesses occurring later in life. A potentially useful parallel is people with HIV/AIDS, many of whom also tend to be quite young (Aggelton & Kapila 1992). It has been pointed out that people with AIDS may have to deal with issues of mortality at an 'inappropriate' life stage (Sherr 1989). At a time when their peers may still be engaged in constructing their lives, young people with AIDS and other potentially lifethreatening conditions are confronted with the need to think about the possible end of their lives, perhaps leading to feelings of having been robbed of a future (Green et al 1996). The fact that this demand is 'off-time' may make it especially difficult to deal with. For many BMT survivors, their relative youth may complicate the process of coping with their condition, raising a wide range of important life issues that may need to be addressed and that may affect their QL. One such issue, voiced by many participants, relates to having children. Concern about fertility and having children are also experienced by people with other conditions. For example, patients with some cancers may experience a temporary or Journal of CancerNursing I (3), 106-I 16
I 14 Journal of Cancer Nursing permanent reduction in fertility following radiotherapy or chemotherapy. Likewise, one concern voiced by these B M T survivors centred around fears about not being able to have children. The 'simple' desire to survive to have children and/or grandchildren m a y b e interpreted as a continuation and exemplar o f the theme of 'reestablishing life/normalcy'. As in previous studies (e.g. Ferrell et al 1992b), concern about possible infertility ~vas particularly important to those without children. For unmarried survivors, concem about the degree of disclosure related to their past medical history was important in contemplating new relationships. Survivors have been shown to be less inclined towards intimacy (Celia & Tross 1986), suggesting a relationship between the BMT experience, sexuality and the ability to engage in warm, interpersonal relationships. However, most expressed optimism and felt that their attitudes towards life and intimate relationships had been influenced positively. The data presented indicate that, whilst overall QL is predominantly reported as 'better' after transplantation, there is considerable variation in physical and psychosocial functioning between participants. Whilst some reported little or no physical or psychosocial morbidity, others reported significantly poorer functioning. However, irrespective of such factors, only one participant indicated unequivocally that he would not make the same choice again. Others, recognizing the value of BMT in extending life, indicated that, after careful consideration, they would be prepared to undergo BMT again. Not only does this appear to reflect the significant impact of BMT on life as a whole, but also the value each individual places on life itself. This work suggests that, although several congruent factors appear to influence QL across studies, there seem to be many issues that are specific to this population, and to 'survivorship', which appear to influence the QL of BMT survivors.
CONCLUSIONS Most cancer survival literature centres on the medical outcome(s) of disease and treatment; considerably less is known about the effects of survival on the individual and little information about the QL of longer-term survivors is available (Wyatt & Friedman 1996). Such research as is available has largely focused on the developmental problems of children surviving cancer (e.g. Koocher et al 1980) and, only recently, on the QL of adult survivors (e.g. Celia & Tross 1986, Ferrell et al 1992a, 1992b). This study has attempted to identify the concerns and issues related to the QL of a small sample of BMT survivors and suggests that QL, like survival Journalof CancerNu~ing 1(3), 106-116
itself, is a dynamic concept contingent on many factors affecting individuals in different ways. Thus, it must be recognized that research on the correlates of QL following BMT is in its infancy and only with continued investigation can the full effects be understood. Although most of the survivors expressed many similar perceptions of QL, and the global impression was that they were 'doing well', it must be noted that one participant described a life of 'misery ... disability ... aloneness ... and steady decline'. Thus survival after BMT presents a significant challenge for both BMT recipients and for those health professionals involved in their care. Whilst many similarities between survivors have been identified, it is clear that carers must remain sensitive to individual differences and promote a collaborative partnership with members of the multi-disciplinary health-care team to meet the often complex needs of individual BMT survivors.
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