INTRODUCTION
Cancer is recognized to be a “family illness” (Germino et al., Reference Germino, Fife and Funk1995, p. 43), with an impact not only on the person with cancer, but also on their relatives and close friends. This is particularly the case for those who take on the role of informal carer, who are vulnerable to negative consequences, including lack of time to attend to daily activities other than caring (Hudson, Reference Hudson2004), financial strain (Jo et al., Reference Jo, Brazil and Lohfeld2007), sleep disturbance or deprivation (Carter, Reference Carter2001), physical strain and fatigue (Gaston-Johansson et al., Reference Gaston-Johansson, Lachica and Fall-Dickson2004), appetite disturbance (Aranda & Hayman-White, Reference Aranda and Hayman-White2001), emotional distress (Hodges et al., Reference Hodges, Humphris and Macfarlane2005), and subordination of their own emotional needs (Thomas et al., Reference Thomas, Morris and Harman2002). Increased awareness of the unmet needs of informal cancer carers is a necessary first step in providing support to address these needs (Soothill et al., Reference Soothill, Morris and Harman2001). However, the focus on burden of care has acted to obscure the positive meanings many carers construct in making sense of their caring experiences (Sinding, Reference Sinding2003). Indeed, as Addington-Hall and Ramirez (Reference Addington-Hall, Ramirez, Fallon and Hanks2006) contend, carers “resent suggestions that the experience is wholly negative or, indeed, negative at all” (p. 56). It has thus been argued that positive aspects of informal cancer caring require attention in order for us to better understand the complexities of the caring experience (Hudson et al., Reference Hudson, Aranda and Hayman-White2005).
There is now a significant body of research indicating that positive benefits occur for cancer survivors who “feel significantly altered by the experience, often for years after their treatment has ended” (Thornton, Reference Thornton2002, p. 153). These positive changes include altered life perspective (Nelson, Reference Nelson1996), improved interpersonal relationships (Sears et al., Reference Sears, Stanton and Danoff-Burg2003), and positive changes in the self (Fife, Reference Fife1994). The small number of research studies examining benefit finding for informal cancer carers reveal similar conclusions. For example, in one study of 45 adult daughters of cancer patients, 93% of participants reported at least one positive change resulting from their parent's cancer (Leedham & Meyerowitz, Reference Leedham and Meyerowitz1999), including positive changes in the relationship with the sick parent and with others, enjoying life more, and the development of inner strength. Similarly, in a study of 175 intimate partners of a person with cancer, Germino et al. (Reference Germino, Fife and Funk1995) reported that reevaluation of life and relationship priorities was a positive change experienced, with individuals searching for meaning in order to reduce the threat of cancer. Although palliative care is recognized to be particularly emotionally draining (Payne et al., Reference Payne, Smith and Dean1999; Waldrop, Reference Waldrop2007), in a study of 47 informal carers providing palliative care, Hudson (Reference Hudson2004) reported that 60% of participants could identify positive aspects of the role, including closeness with the person with cancer and experiencing caring as a privilege.
Benefit finding in the face of adverse events serves an important function in allowing individuals to incorporate difficult experiences into their worldview in a meaningful way, thus maintaining positive beliefs about the world (Thornton, Reference Thornton2002). Positive appraisal of a stressor, such as cancer or the care-giving role, allows people to enhance and maintain coping (Folkman, Reference Folkman1997). However, the extent to which these benefits act as a buffer for the negative aspects of the cancer caring role is debatable (Hudson, Reference Hudson2004). In a recent study of 896 informal cancer carers (Kim et al., Reference Kim, Schulz and Carver2007), although coming to accept what had happened and appreciating new relationships with others was associated with positive adjustment, becoming more empathic and reprioritizing values was associated with greater symptoms of depression. There is a need for further research to examine positive aspects of informal cancer caring and benefits perceived to be experienced by carers (Thornton, Reference Thornton2002; Coyle, Reference Coyle2004), which may serve to provide insight into the question of why informal carers who find caring stressful continue to provide care and what it is that keeps them there (Coyle, Reference Coyle2004). The plea for more qualitative research that can “excavate the contours of the lived experience of cancer care” (Thomas & Morris, Reference Thomas and Morris2002, p. 181) is also pertinent here, as much of the previous research on positive aspects of caring has used quantitative outcome measures (Kramer, Reference Kramer1997) or content analysis of interviews, which does not facilitate examination of the richness of carers' experiences of positive aspects of care (Ussher & Sandoval, Reference Ussher and Sandoval2008).
In examining the accounts of benefit finding associated with the experience of informal cancer care, bereaved cancer carers are of particular interest because they are in a position to make sense of their caring experiences as a coherent whole. Gergen and Gergen (Reference Gergen, Gergen and Gergen1993) argued that an individual's experience in a given moment can be nonsensical unless it can be meaningfully related to the past and is placed in the context of preceding and subsequent events. The temporality of events is constructive, as it produces a plot through which the events are connected meaningfully. It can thus be argued that bereaved carers' accounts will not only reveal the way they “integrate and surmount difficult experiences” but also their construction of “benefit out of adverse events” (Monroe & Oliviere, Reference Monroe, Oliviere, Monroe and Oliviere2007, p. 2). Previous research with bereaved cancer carers has reported accounts of the relationship with the person with cancer being strengthened because of the uniqueness of the palliative caring experience (Koop & Strang, Reference Koop and Strang2003) or the threat of imminent death (Andershed & Ternestedt, Reference Andershed and Ternestedt1999). Nevertheless, many bereaved carers reflect on the whole caring experience as an accomplishment (Koop & Strang, Reference Koop and Strang2003) or as an opportunity to have spent quality time with the person for whom they cared (Grbich et al., Reference Grbich, Parker and Maddocks2001). Offering a home-based death has been positioned as a positive way of preserving the dignity of the person with cancer (Koop & Strang, Reference Koop and Strang2003), allowing carers to achieve their goal of being able to offer a “good death” (Sinding, Reference Sinding2003). Caring is thus positioned as a “gift” (Grbich et al., Reference Grbich, Parker and Maddocks2001, p. 33), or an “honour” (Sinding, Reference Sinding2003, p. 157), which allows “even the literal shit work of caring (to be) rendered meaningful” (Sinding, Reference Sinding2003, p. 158).
The aim of the present qualitative study was to extend previous research on positive aspects of informal cancer caring through examining the narrated accounts of bereaved carers using a qualitative research methodology. The research question was: What do bereaved carers position as the positive aspects or benefits resulting from the experience of providing care for a person with terminal cancer?
METHODS
Participants and Recruitment
This study is part of a larger cross-sectional project evaluating the needs and experiences of informal cancer carers in New South Wales, Australia. This article focuses on the experiences of 23 bereaved informal cancer carers (18 women and 5 men) who were interviewed as part of the study. These bereaved carers were unpaid primary carers of the person who eventually died as a result of cancer. The participants' ages range from 19 to 85 years (median = 57). Twenty participants were born in Australia and New Zealand, 2 participants were born in the United Kingdom, and 1 was born in a Southeast Asian country. Ten participants were in paid employment (4 full-time and 6 part-time), 9 participants were retired, and the remaining participants were either not working or were doing tertiary studies. Twenty-one participants were family members of the person with cancer, including offspring (5), a sister (1), a parent (1) and husbands/wives/life partners (14); the other 2 participants were friends of the person with cancer. The length of time for which participants provided care varied significantly, from approximately 3 months to 57 years (median = 26 months). The cancer types were respiratory, breast, pancreatic, renal, brain, colorectal/digestive, hematological, gynecological, mesothelioma, and prostate. Five people for whom care was provided had more than one type of cancer.
The participants were recruited from cancer support groups, an advertisement in newsletters specifically for people with cancer and their carers, media releases, cancer clinics, and the Cancer Council New South Wales (CCNSW) website and helpline. Some participants also learned of the study from friends who either knew of or were participating in the study. Participants who were interested in participating in the larger study were sent an information sheet, consent form, questionnaire, and interview contact form.
Procedure
Ethics approval was received from Human Research Ethics Committees associated with two universities and 12 NSW Government Area Health Services. The interviews were conducted face to face (15) and by telephone (8) between 2004 and 2007.
The interviews were audiotaped, and each interview was between 60 and 90 minutes. At the start of the interviews, participants were informed that the aim of the interview was to explore their caring experiences. An interview schedule was developed that contained questions about their experiences as carers, the difficulties and challenges they faced, and positive and rewarding aspects associated with caring. In accordance with semistructured interviews, the interviewer followed the participants' lead by asking follow-up questions so that they were given the opportunity to clarify or to elaborate their responses. The interviews were transcribed verbatim by professional transcribers. The transcripts were proofread by the first author while listening to the audio-taped interviews to ensure that the interviews were accurately transcribed. For reasons of confidentiality as explained to participants, not only were pseudonyms given but any identifying details were omitted in the transcripts during the proofreading/listening phase. Pauses between utterance were not timed, as in some transcription conventions, but were denoted by the use of an ellipsis. In the presented accounts, some parts of what was said were omitted, as they were extraneous—these omissions were denoted by an ellipsis in parentheses and altered information or clarifying details were detailed in square brackets.
Analysis
The participants' accounts were thematically analyzed from a phenomenological perspective. This perspective positions everyday lived experiences, and the manner in which these experiences are understood by individuals, as informing and shaping their worldviews (Marshall & Rossman, Reference Marshall and Rossman1999). In the phenomenological sense, their worldviews are about the “meaningful set of relationships, practices, and language” embedded in the sociocultural context in which they are situated (Leonard, Reference Leonard and Benner1994, p. 46). According to Harré (Reference Harré and Jupp2006), phenomenological theory has contributed to the “development of ideas of the social construction of reality” (p. 221). In examining participants' constructed meanings ascribed to their lived experiences, we are informed by social constructionist epistemology, which contends that realities are constructed through human interactions, and that truth is multiple and subjective (Gergen, Reference Gergen1985). Moreover, the analysis positioned participants' accounts as being active and purposeful constructions and interpretations of their realities from the meanings that were socioculturally available to them (Taylor & Ussher, Reference Taylor and Ussher2001).
In analyzing participants' accounts, we drew on thematic analysis as described by Braun and Clarke (Reference Braun and Clarke2006). The initial phase of the analysis (immersion) involved reading and rereading the interview transcripts and doing so in an active way in identifying patterns and “mapping of the territories” explored in the course of the interviews. After the authors had gained this appreciation for each interview, the transcripts were coded line by line for specific themes; these themes were then collated to check for patterns of variability and consistency across all transcripts. Themes were identified on the “manifest level,” that is, able to be read in the transcripts, and on the “latent level,” that is, themes that were generated inductively from the transcripts (Boyatzis, Reference Boyatzis1998). This phase involved discussion with different members of the research team to examine themes identified and their significance in the context of the research study. This part of the analysis process was informed by knowledge gained from review of available literatures and our subjective understanding of caring. In this context, the analysis of participants' accounts involved reflexive practices, which required us to constantly reflect on our own positions in relation to our subjective understanding and the different ways of making sense of accounts that belong to others (Braun & Clarke, Reference Braun and Clarke2006). The themes were reviewed to ensure that the coded extracts of participants' accounts in these themes formed a coherent pattern, and they were then further refined and defined by being given names that reflect issues these themes were about.
In exploring difficulties and challenges, participants identified a range of issues that included emotional distress, physical strain, unsatisfying experiences with health care professionals, being unable to express their own needs, and pressure to be responsible for making medical decisions for the person for whom they were caring. Three main positive and rewarding aspects associated with caring were also identified by participants, which were positioned as providing direct benefits for the carer. These themes, which form the focus of the analysis in the present article, were the strength they discovered in themselves as a result of having to provide the necessary care, the relationships they developed or relationships that were enriched with the person for whom they cared, and the personal growth they achieved resulting from their caring. Each theme is outlined in turn, below.
RESULTS
Discovering Strength
The majority of participants identified positive benefits that arose from being in a caring role or from performing necessary caring tasks, positioning themselves as having possessed strength that they had not previously recognized. This is illustrated by Naomi (41 years old, who had cared for her husband with a brain tumor) who said “I look back on it now and I just think, my God, how did I do it?” Analysis of participants' accounts concerning the discovery of strength in response to the everyday caring demands revealed three subthemes: “strength through adversity,” “strength through acceptance,” and “strength through necessity.”
Strength through Adversity
Stephanie cared for her sister in her own home after her sister's hospitalization. She was challenged by the demands of caring and experienced emotional distress from witnessing her sister's physical deterioration. However, in her account of the frustration associated with caring, she also conveyed the insight she gained about her own strength:
So we brought her home and it was a very, very difficult, challenging, and I certainly learned a lot about myself and I think human limits. (…) The experience for me as a person was huge and I think you learn how much inner strength you have as a person and sometimes how little you have when you lose it. (56 years old; cared for sister with breast cancer)
Discovering strength through adversity was a theme identified in other participants' accounts, such as Tessa (30 years old, who had cared for her mother with breast cancer) who constructed her caring as an experience that “taught [her] about being strong.” Needing to be strong was also echoed in the account offered by Anne, in which she not only stated that her caring experience was difficult but also identified the effect that it had on one of their children; however, she still positioned her caring experience as an experience that made her stronger:
I think we … we all benefited from having him here at home with us. So that was probably the best way for us to go. And even though, you know, I sort of have thought at times maybe it was the wrong thing for [daughter], the one that found it difficult. I don't think so either … hindsight being such a wonderful thing … but, you know, at the time I think that was … that was, you know … it was … it was a very difficult time for all of us, but at the same time, you know, if it doesn't kill you, it makes you stronger, doesn't it? (56 years old; cared for husband with pancreatic cancer)
Strength through Acceptance
Some participants spoke of the strength they acquired through their acceptance of the situation, which enabled them to find ways to deal with the challenges and difficulties associated with caring. For example, Alan provided an account of acceptance of the difficulties as a way of negotiating the frustration and anger he experienced, which enabled him to find the strength needed in order to provide the necessary care:
I think in certain part where you get angry and frustrated when everything becomes too much for her, she was always clingy and all that. But towards the end it kind of, towards the end, in a way I accepted the whole thing. As I say, the next day it would be another struggle so I kind of accepted that; it's a new day so we're going to be in this thing together. (47 years old; cared for mother with colorectal cancer and dementia)
Maxine indicated that she was able to reconcile the difficulties involved in caring when she accepted that her husband's condition was not likely to change and that she needed to change her expectations in order to find strength in continuing to provide care:
Physically, I just kept going because I think mentally I had made up my mind that this was what I wanted to do. (…) I just said to myself, what do I do to make this better? (…) So I just decided that right from day one this time, this was it. I mean we'd had all those other cancers, I'd lived through his bowel cancer, which was a fairly horrendous operation, and having his lung out was another horrendous operation, and I'd lived through all of those, so I just felt this time … (…) I just felt well, this is it, and I'm here for the long haul, so I was. (67 years old; cared for husband with a brain tumor)
Strength through Necessity
For other participants, the everyday difficult circumstances they encountered made it necessary for them to exercise strength in their attempts to produce a positive outcome for their loved ones. For example, Jean cared for her husband at home and described a number of difficulties associated with caring, including liaising with health professionals. She provided an account of a situation where she had to be strong and to “fight” for her husband:
I couldn't get parking near the entrance to the hospital, so I pushed him up the hill in the wheelchair. It was a hot day, and I'm not that young myself, (to) get up to the ward after going through the admission sections, and I said to the girl, “Oh, [husband] to be admitted,” and she said “Oh, no, we haven't got an admission in today,” and the other girl said “Oh yes we have, oh yes we have, second door on the right.” … [They] left me on my own, so I go in there, the bed's this high, couldn't work out how to get it down, no pillow, no blankets, no towels, previous patient's medication's in the … the locker, and no wonder why you get frustrated, ‘cause my husband could see I was getting upset, he said, “Don't worry about it, don't worry about it,” but you had this feeling that you must fight for them, they're being treated badly, so you must fight for them. (61 years old; cared for husband with prostate cancer)
In a similar vein, Gina made reference to an everyday task that she had to master in order to provide the care for her husband with respiratory cancer as an illustration of what she had to do out of necessity. Her husband was dependent on her in meeting many of his needs, which included daily injections for acute diabetes he had developed as a result of medications prescribed for cancer.
So then I had to do, um, the diabetic checks every day, and give him insulin and … which I never thought I'd be able to do in my life, but you do. You just do. (59 years old; cared for husband with respiratory cancer)
The Relationship
The strength that participants drew on in order to care not only offered them an insight into their resilience. Many participants made reference to the quality of their relationship with the person with cancer as being an important positive aspect of their caring experiences. Some participants indicated that the knowledge of the person's impending death encouraged them to value the time they spent together, which, in turn, enriched the relationship. This was illustrated by Donna in her account about the time she and her mother spent together:
Like you don't know, you probably don't ask those questions until you know something's going to happen or maybe some people know, like find out the history of their parents in a detail that you probably don't think to ask a lot of the detail until you realize that they're probably not going to be around forever. So, that was really fun (…) so you see facets of them that you wouldn't have otherwise. (42 years old; cared for mother with gynecological cancer)
For others, the need to be present with the person for whom they were caring strengthened a closeness they already had or led to a closeness that they had not previously experienced. Maxine provided an account that underscored the reward of caring for her husband, which required them to spend time together in a manner that was not previously available:
What was really good about it? The fact that I was able to take him for drives and we were able to do things that we hadn't done before like driving all around Sydney (…) just doing those things together that we hadn't done. (…) Those were the nice things. I can honestly say though that we had had a very good life together. So that was something I guess. I can look back and say well, we'd had some lovely times. But, no, taking him to radiotherapy, all of that, there was a togetherness and a closeness, because he'd always done his own thing, … so I guess there was that sort of closeness that we hadn't had before. So yes those were the pluses (67 years old; cared for husband with a brain tumor).
The “togetherness” and “closeness” developed from time spent together, as expressed by Maxine, also afforded the participants occasions through which to discover and appreciate the relationship in ways they had not previously experienced. Confronted by the changes, challenges, and difficulties embedded in the care of her life partner, Olga narrated an account that reflects an understanding of herself and her male partner she developed through the caring role:
I think the biggest thing, I have to say that was a good time, was good that came out of it was him and me, about what we found out about ourselves, our level of resilience, resourcefulness, love, respect, liking, and finding out what we could actually do, a sense of humor. (54 years old; cared for male partner with renal cancer)
The enrichment of their relationships resulting from the intrusion of cancer into their lives, for some participants, was signified by the tasks they needed to perform, which were positioned as a demonstration of their love toward the person for whom they cared. Gina positioned the act of caring as not only a reward but also a way of “realizing” her love for her husband:
I think it was … it sounds funny, but I felt rewarded being able to help him. Um … I think … I didn't realize how much I loved him … or, I knew that, but you don't realize how much, until you have to do something. And, I would have … I did everything for him, from cleaning his bottom to doing everything … the lot (59 year old; cared for husband with respiratory cancer).
Personal Growth
For many participants, caring for someone with cancer, and facing the likelihood of their imminent death, was positioned as having facilitated personal changes and growth. Two subthemes pertaining to the sense of growth were identified in participants’ accounts: “relationship with others”—the changes in their ways of relating to others—and “perspectives on living”—the different perspectives participants took up in order to engage with life after the death of their loved ones.
Relationship with Others
A number of participants gave accounts of changes that occurred in broader family relationships as a result of the experience of caring for someone with cancer. This was often positioned as the result of a changed attitude to relationships, and a revaluing of connectedness, resulting in past difficulties being resolved, as is illustrated by Ellen's account:
Of course, my friend was a huge part in that, of my changing attitudes and the way I thought and the way I lived… . It's a confronting thing and it made me think, it made me go on my journey too to get myself in order and to repair damages that had been done with family and so on; even though my father had passed on, I could do that. And I'm just sorry he wasn't here so I could talk to him, but I was able to repair a few issues as we all have with family; that was because I was attending her and I could see the sadness in her. (63 years old; cared for friend with multiple types of cancer)
The awareness of mortality that comes from caring for someone with cancer was positioned as central to this revaluing of relationships, resulting in the expression of positive feelings and relationships that were more caring, as Donna commented:
Look, it probably changes you as a person. But I'm not sure how useful that is to you. You take on, and particularly if you've been not properly exposed to illness before, but it changes you because it makes you express your feelings to people where you might not have said them before. I think it makes you a more caring and understanding person. And I am probably a nicer person as a result of it… . You're more overt I think with showing people how much you care for them. (42 years old; cared for mother with gynecological cancer)
Tessa also spoke of the “growth” in herself and the greater closeness in her relationships with others as a consequence of being the carer of her mother:
Maybe I just grew out of the experience into the way I am now. No, I think it's definitely come out of that experience… . I can see a real kind of growth prior then through that experience and then beyond that. so it's, yeah, it's certainly been kind of growth in that closeness, in that dependence on my friends. (30 years old; cared for mother with breast cancer)
Perspectives on Living
As a consequence of experiencing the challenges and difficulties associated with caring and having had to witness suffering the death of their loved ones with cancer, some participants provided accounts of changes in their perspectives on living, which they positioned as being positive and rewarding. Debbie provided an account of change in how she is able to “experience the world” as a result of her caring role and subsequent bereavement. Debbie positioned this perspective to living as being “a gift” from her partner:
Sometimes I might come across something in the house, you know, like some little note that she wrote or something that I remember her needing or worrying about, and I think, now look at you … you're dead in the ground. I know that sounds callous, but she's gone and all that worry for what, it's irrelevant, and it really makes a difference to how I experience the world, I think now. You know … it doesn't actually matter in the end… . And actually you know you are going to end up dead in the ground and it won't matter. So I feel that is a gift from her in a way. (61 years old; cared for female partner with respiratory cancer)
Brian, who despite having “generally hated the whole thing” of caring for his wife due to the challenges and difficulties he experienced, constructed an account that illustrated changes in his life priorities resulting from his caring experience:
Yeah, well I used to, well when I was working seven days a week I didn't have much time, but now I've done a lot of walking and get out and do things I want to do and I'm now looking at buying a motor home to go around Australia. Well her, me and my wife, we were always going to do it and now I'm going to do it… . So it's something I want to do and it was something we were going to do, so I'm going to do that. (57 years old; cared for wife with pancreatic cancer)
Reflecting on the Positive Aspects of Caring
Notwithstanding the difficulties and challenges associated with caring for a loved one with terminal cancer, when given the opportunity to reflect on the whole of their caring experiences, the majority of participants said that they now focused on the positive aspects of caring, allowing themselves to experience benefits from the caring experience. This is exemplified by Donna, who stated “But you, yeah, I think you come out of it thinking, oh, you know, I really feel, I do feel quite privileged to have done it.”
This was positioned by some participants as a reflective process that could only take place in retrospect, after the caring was over. As Olga commented, “Because now, a lot of what I remember are the good things, which is how you want it to be. And I remember the good things rather than just how terrible it was.” Similarly, Gary said:
I've sort of come through the whole … come through the whole process, and looked back on it, and go “mm, that was a good experience,” if you could say that. (61 years old; cared for female partner with respiratory cancer)
DISCUSSION
The aim of this study was to explore and give focus to the positive and rewarding aspects of caring identified by bereaved informal cancer carers as a way of exploring benefit finding in their caring experiences. Bereaved carers' accounts of their completed caring experiences made it possible for us to examine their endeavors to give coherence to what is often described as a traumatic experience through constructing and ascribing meaning to caring for a loved one with terminal cancer and experiencing positive benefits as a result.
The findings from this study indicated that participants were able to construct accounts that illustrated positive and rewarding aspects associated with their caring experiences. These include discovering strength in order to provide the necessary care, the enrichment of their relationships with the person for whom they cared, and personal growth. This supports the assertion of Davis et al. (Reference Davis, Nolen-Hoeksema and Larson1998) that the act of finding benefits in traumatic situations involves individuals learning something about themselves (e.g., strengths), about others (e.g., valuing relationships), or about the meaning of life (e.g., personal growth). These accounts of benefit finding in cancer caring could be interpreted as the carers' ways of reconciling distress and difficulties through constructing subjectively meaningful interpretations of a challenging situation and focusing on positive aspects of the experience. This is in line with the work of Neimeyer et al. (Reference Neimeyer, Baldwin and Gillies2006), who argued that a significant loss, such as that of death, produces a profound disruption, which requires “active attempts to (a) make sense of the loss, (b) find some sort of ‘silver lining’ or benefit in the experience, and (c) reorganize one's identity as survivor” (Neimeyer et al., Reference Neimeyer, Baldwin and Gillies2006, p. 718).
Endeavoring to construct subjectively satisfying meanings in their caring experiences through the discovery of strength necessary for the everyday demands was positioned by many participants as one of the most notable positive benefits of caring (“The experience for me as a person was huge and I think you learn how much inner strength you have as a person.”). This supports the finding of Manne et al. (Reference Manne, Babb and Pinover2004), who reported that wives of men with prostate cancer experienced an increase in personal strength following their husbands' cancer. Personal strength was a benefit also reported in previous research with adult daughters of a person with cancer (Leedham & Meyerowitz, Reference Leedham and Meyerowitz1999) and bereaved carers who had provided home-based care (Koop & Strang, Reference Koop and Strang2003). Positioning themselves as having the strength to negotiate caring demands could be interpreted as a way that enabled informal cancer carers to construct these demands as “difficult but not impossible to manage, and that drawing upon existing or acquirable skills offers a genuine prospect for mastery” (Lazarus, Reference Lazarus1998, p. 198). In this context, for some participants, the caring experience produced a situation of “self-discovery” through which an insightful understanding of themselves, their abilities, and the act of caring itself was developed. For them, this understanding was positive and rewarding in their effort to make sense of their caring experiences after the death of their loved ones.
Confirming findings from previous research (Germino et al., Reference Germino, Fife and Funk1995; Leedham & Meyerowitz, Reference Leedham and Meyerowitz1999; Grbich et al., Reference Grbich, Parker and Maddocks2001; Koop & Strang, Reference Koop and Strang2003), the act of caring, or the likelihood of imminent death, was positioned by many participants as a time when their relationships with the person with cancer was enriched and deepened (“There was a togetherness and a closeness.”). The deepening of the bond in the relationships from caring, and the “love” between the carer and the person with cancer, was positioned by some participants as the most positive aspect of their caring experience (“I didn't realize how much I loved him … until you have to do something.”). From this perspective, in terms of performing necessary caring tasks, the carer role that participants had taken up not only enabled them to make sense of their “relational responsibilities” (O'Connor, Reference O'Connor2007, p. 169), but also highlighted the fact that caregiving relationships “often have love as a reference point” (Sinding, Reference Sinding2003, p. 153). Furthermore, some participants positioned the act of performing everyday caring tasks as a demonstration of their love for the person for whom they cared. In this context, it could be interpreted that these everyday tasks, demands, and challenges, in some situations, cannot simply be constructed as difficulties that informal cancer carers need to overcome. Rather, they also could be interpreted as events that facilitated emotional expression, which, for some participants, were constructed as a reward resulting from the caring, confirming Sinding's finding that “even the literal shit work of caring [can be] rendered meaningful” (p. 158).
A feature of many participants' nuanced accounts of their caring experiences was that, through making sense of their caring experiences and subsequent loss, they were in a position to reflect on how they had changed as individuals or changed their perspectives from which to engage with life by reevaluating priorities and goals (“It really made a difference to how I experience the world.”). Confirming previous research findings (Germino et al., Reference Germino, Fife and Funk1995; Leedham & Meyerowitz, Reference Leedham and Meyerowitz1999; Koop & Strang, Reference Koop and Strang2003), a number of participants' also indicated that they experienced a change in how they related to other significant people in their lives. As appreciating relationships with others has been found to be associated with better adjustment in informal cancer carers (Kim et al., Reference Kim, Schulz and Carver2007), this is an important finding. There was also evidence of a changed perspective on living, confirming the finding of Leedham and Meyerowitz (Reference Leedham and Meyerowitz1999) that informal cancer carers report living life every day, not letting little things bother them, and the finding of Germino et al. (Reference Germino, Fife and Funk1995) that cancer carers reevaluate life priorities. In this context, it could be interpreted that the difficulties faced through caring and subsequent loss were constructed by participants as a “growth-promoting experience” (Manne et al., Reference Manne, Babb and Pinover2004, p. 43). However, what is interesting from the accounts of participants in the present study, made available by the qualitative research methodology, are the details of how this growth is constructed in terms of changes in their relationships with others and changed perspectives on living. This is noteworthy, for it has been suggested that an “important task of resolving adversity is the development of an understanding of the hardship and its implications” (Pakenham, Reference Pakenham2005, p. 985). Therefore, it could be argued that informal cancer carers construct and ascribe subjectively satisfying meanings to their caring as a strategy to make sense of the difficulties and, in doing so, not only achieve a sense of coherence but also find positive reasons to remain as a carer or, in the case of bereaved carers, deal with loss. This provides support for the view that interventions developed to support informal cancer carers need to enhance positive benefits of caring as well as ameliorate difficulties (Hudson et al., Reference Hudson, Aranda and Hayman-White2005).
The positive aspects of caring identified by bereaved cancer carers in the present study have implications for understanding how bereaved cancer carers could be supported. Notwithstanding the large body of research into bereavement issues for informal cancer carers (e.g., Hudson, Reference Hudson2006; Cherlin et al., Reference Cherlin, Barry and Prigerson2007), much of the research and theory on bereavement has positioned the responses to loss within a pathological frame (Bonanno et al., Reference Bonanno, Papa and O'Neill2002), that is, seeing bereavement as an emotional response that may require medical and/or psychological interventions. Although the need for support and intervention on the part of some bereaved carers is not questioned, as Neimeyer (Reference Neimeyer2006) argued, coming to terms with loss requires a process that involves sense making or meaning production. From this perspective, an effective way of supporting bereaved carers could be to assist them in identifying the positive and rewarding aspects of caring that they could draw on as means of reconciling the sense of loss they have experienced. In this regard, bereaved carers' acknowledgement of their achievement in providing necessary care as well as the personal strength and growth they gained from the caring experience could augur well for a productive way of living with the loss.
The employment of a qualitative research methodology in the present study allowed for detailed exploration of the positive and beneficial aspects of informal cancer caring, thus complementing previous quantitative research in this field. However, there is a need for further research using both qualitative and quantitative methods to allow for examination of the psychological consequences of finding benefit in caring as well as detailed analysis of the benefits experienced. As the participants in the present study were recruited from a larger project about the experiences of cancer caring, it was not possible to make explicit claims about how the caring experience could have affected their bereavement, as this issue was not specifically examined. Equally, it is not possible to say whether benefit construal was a retrospective activity, achieved as a way of making sense of caregiving and loss. It is therefore important that future research endeavors to specifically explore the relationship between the meaning-making process in which informal cancer carers engage and the bereavement experience. There is presently no longitudinal research examining this issue over the course of caring and through to bereavement; this would offer important insights into the nature and consequences of benefit finding for both cancer carers and those who are bereaved.
CONCLUSION
The findings presented in this article contribute to understanding informal cancer carers' experiences of caring. By analyzing participants' constructed accounts from a phenomenological perspective, we treated their accounts as sense-making devices and means through which they positioned aspects of their caring experience as positive and rewarding. In this regard, in looking back on their experiences, bereaved carers were able to provide coherence to events and experiences that occurred during their time of caring that now could be meaningfully understood. From this perspective, it is understandable that some participants could construct their caring as being a “good experience.” In light of these findings, more emphasis needs to be placed on aspects of caring that informal carers construct as positive and rewarding as a way to attain a broad and thorough understanding of the informal cancer caring experience and to facilitate incorporation of such knowledge into interventions aimed at improving coping with caring as well as with loss.
ACKNOWLEDGMENTS
The larger cross-sectional project evaluating the needs and experiences of informal cancer carers, from which this study was drawn, was funded by an Australian Research Council Linkage Grant (LP0560448) in conjunction with the Cancer Council New South Wales, Westmead Hospital, and Carers New South Wales. The chief investigators on the project were Jane Ussher and Phyllis Butow, and the partner investigators were Gerard Wain, Gill Batt, and Kendra Sundquist. Thanks are offered to Emilee Gilbert, Yasmin Hawkins, Angela Pearce, and Mirjana Sandoval for research support and assistance.
