520717 research-article2014
JFNXXX10.1177/1074840714520717Journal of Family NursingLaing and Moules
Article
Children’s Cancer Camps: A Sense of Community, a Sense of Family
Journal of Family Nursing 2014, Vol. 20(2) 185–203 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840714520717 jfn.sagepub.com
Catherine M. Laing, RN, PhD1, and Nancy J. Moules, RN, PhD1
Abstract Childhood cancer is a family affair, and each year in Canada, approximately 1,400 children and adolescents under the age of 20 are diagnosed with cancer. Innumerable challenges accompany this diagnosis, and in recognition of the stress of childhood cancer, children’s cancer camps arose in the 1970s to help children and their families escape the rigidity and severity of cancer treatment. Very little is known about these cancer camps, and to that end, a philosophical hermeneutic study was conducted to understand the meaning of children’s cancer camps for the child with cancer and the family. Six families were interviewed to bring understanding to this topic. While the research included findings related to the concept of play, fit and acceptance, storytelling, and grief, this paper will detail the finding related to the solidarity of the community—the “camp family”—as one that creates intense, healing bonds. Keywords childhood cancer, children’s cancer camps, families, qualitative research, hermeneutic inquiry
1University
of Calgary, Alberta, Canada
Corresponding Author: Catherine M. Laing, Faculty of Nursing, University of Calgary, Professional Faculties Building, 2500 University Dr. NW, Calgary, Alberta, Canada T2N 1N4. Email: [email protected]
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Most kids with cancer are left out. Their suppressed immune systems (from chemotherapy and radiation) mean they are highly susceptible to infection, and an infection in a child with little to no immunity is a life-threatening event. Because of this risk, these children are unable to attend school for the majority of their treatment, cannot see their friends and engage in social activities with their peers, and often miss out on significant events in their lives because of their disease. They also cannot attend regular summer camps (for healthy children), where children and adolescents engage in activities such as swimming, zip-lining, drama, and campfires. It is not untrue that cancer can rob a person of a childhood. In recognition of the stress of childhood cancer, children’s cancer camps arose in the 1970s as a way for children and their families to escape the rigidity and severity of cancer treatment (Bluebond-Langner, Perkel, Goertzel, Nelson, & McGeary, 1990; Kids Cancer Care Foundation of Alberta, 2012). From diagnosis through treatment, to survival or bereavement, cancer camps are structured to meet the needs of the whole family at each stage in the cancer experience (Kids Cancer Care Foundation of Alberta, 2012). Currently in Canada, eight camps provide specialized oncology and community support programs to 5,252 children and their families (Canadian Association of Pediatric Oncology Camps, 2012), and as more children are surviving childhood cancer, the need for specialized camps and community programs continues to grow. Our intent in this article is to describe one of the findings of the first author’s philosophical hermeneutic doctoral research around understanding the meaning of children’s cancer camps for the child with cancer and the family. While the doctoral thesis included findings related to the concept of play at cancer camp (both philosophically and theoretically; Laing, 2012), the fit and acceptance that children and families find at camp (Laing & Moules, 2013), storytelling as a means of re-shaping and understanding traumatic experiences (Laing & Moules, 2014), and grief as something that children and families experience differently, this paper will detail the finding related to the solidarity of the community—the “camp family”—as one that creates intense, healing bonds.
Background Information and Literature Review Many anecdotal accounts of the benefit of cancer camps exist; however, a paucity of research has been conducted in this area. A literature search in nursing, education, family, and psychology databases yielded 16 studies dealing specifically with cancer camps; in other words, very little is understood about the effects of cancer camps on the child and family.
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Of the 16 studies that have been published to date, topics such as selfconcept (Benson, 1987; Kessell, Resnick, & Blum, 1985; Murray, 2001), psychosocial impact (Packman et al., 2008; Wellisch, Crater, Wiley, Belin, & Weinstein, 2006), medical knowledge (Bluebond-Langner et al., 1990; Carpenter, Sahler, & Davis, 1990), and other measurable constructs have been examined. Most studies report either a neutral effect from camp or a marginal improvement on the construct in question. All studies, however, have self-reported limitations due to small sample sizes and lack of comparison groups. More research has been conducted related to outdoor programming and therapeutic camping—a term used to describe a purposeful approach to recreation, often involving marginalized or vulnerable populations. Hattie, Marsh, Neill, and Richards’s (1997) meta-analysis of outdoor education programs suggested that self-concept, academic performance, leadership, interpersonal skills, personality, and adventuresomeness were all mildly positively correlated to outdoor programming. Over the past few years, many childhood disease groups have organized camps for children specific to their disease, for example, Camp Huff n’ Puff (asthma), Camp Maska (nephrology), and so on. There has been a substantial amount of literature and research pertaining to these therapeutic camps (e.g., Mishna, Michalski, & Cummings, 2001; Walker & Pearman, 2009; Welch, Carlson, Larson, & Fena, 2007), with most studies concluding that these camps are of benefit to the children for whom they are targeted. Childhood cancer, however, is a unique disease, and with that comes unique challenges, differences, and outcomes that must be considered with respect to camp. To the best of our knowledge, this was the first qualitative study undertaken in search of understanding the meaning of these camps to children with cancer and their families.
Research Design Method The research question for this study was, “How might we understand the meaning of children’s cancer camps on children and their families?” This research was conducted in the tradition of philosophical hermeneutics, defined as the art, tradition, and practice of interpretation (Gadamer, 1960/1989), as developed by Hans-Georg Gadamer (1900-2002). Hermeneutics offers a way to know and understand the world, and thus the topic (Gadamer, 1960/1989). It is a well-documented and sophisticated method of research within the human sciences, and, particularly in health care, hermeneutics has been shown to have invaluable applied utility,
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offering insight into phenomena that has direct implications for practice (Moules, McCaffrey, Morck, & Jardine, 2011). Hermeneutics allows us, with the help of others, to make sense of the particulars (Moules, 2002) and arrive at deeper understandings of how children’s cancer camps, for example, impact patients, families, and nurses. Hermeneutics is an interpretive methodology that expects knowledge to emerge from dialogue in the form of an unpredictable discovery rather than a controlled outcome (Annells, 1996). It is a reflexive inquiry where the researcher is not considered a separate entity, a noninfluencing factor, from that which she is researching. Hermeneutics seeks to understand rather than explain.
Recruitment of Participants The study participants for this research project included children and their families who attended the Kids Cancer Care (KCC) Foundation’s Camp Kindle in the summer 2012 season. Families were initially contacted about participation in this study by the KCC family liaison and then, upon showing interest, were contacted by the researcher. A total of six families (19 participants in total) were interviewed (Table 1). In hermeneutic research, like other qualitative research methods, measures of “power” and random sampling are not used (Koch, 1996; Morse & Field, 1995; Moules, 2002). The best individuals to include in a hermeneutic inquiry are ones that can most inform understanding of the topic (known as purposive sampling) as it is the researcher’s aim to elicit a richness of data through the experiences of the participants. All interviews took place within 1 month of camp attendance.
Data Generation After informed written consent was obtained, semistructured interviews took place at the location of the participant’s choosing (most occurred in the participants’ homes). Each interview took 1 to 1½ hours, and was recorded and transcribed for the ongoing analysis, and basic demographics of the participants were also obtained. Field notes were written after each interview, recording contextual details to assist with the data analysis. In addition, the first author attended camp as a participant observer on many occasions which generated further data that was incorporated into the analysis.
Analysis and Interpretation of Data In the tradition of hermeneutics, data analysis is synonymous with interpretation (Moules, Laing, McCaffrey, Tapp, & Strother, 2012), and arriving at
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Laing and Moules Table 1. Participant Characteristics. Participants Family A
Family B
Family C
Family D
Family E
Family F
Family structure Mother Child 1: 9 years Child 2: 11 years Child 3: 14 years Mother Father Child 1: 5 years Child 2: 8 years Mother Father Child 1: 10 years Child 2: 12 years Child 3: 14 years Mother Father Child 1: deceased Child 2: 9 years Child 3: 12 years Child 4: 15 years Child 5: 17 years Mother Father Child 1: 5 years Child 2: 7 years Mother Father Child 1: 9 years Child 2: 10 years
Present at interview
Status
Original diagnosis
Mother, child 1, Child 2 is cancer Wilms’ tumor child 2, child 3 survivor × 10 years; 5th time at camp Mother, Father, Child 2 currently Leukemia child 1, child 2 on active treatment; 3rd time at camp Mother Child 2 off Brain tumor therapy × 5 years; 4th time at camp Mother, Father, Bereaved family. Leukemia child 2, child Child 1 passed 3, child 4, away from child 5 cancer 6 years ago (aged 2 years); 6th time at camp Mother, Father, Child 2 had just Brain tumor child (age 7) completed active therapy; 2nd time at camp Mother Child 2 off Brain tumor therapy × 1 year; 3rd time at camp
interpretations in a hermeneutic study is a rigorous practice of bringing together knowledge, information, conversation, experience, and data. To understand the process of how interpretations are developed, the concepts of fusion of horizons and the hermeneutic circle are relevant. The fusion of horizons, or the coming together of two or more understandings of the topic, coupled with the genuine curiosity of the researcher and desire to understand the topic in a new way helped to further the understanding of the topic (Binding & Tapp, 2008; Koch, 1996). The hermeneutic circle—the metaphorical representation of looking at the whole and the parts—invites the researcher to
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consider the particulars of the topic in the context of the familiar, and similarly, the familiar in the context of the particulars (Gadamer, 1960/1989; Grondin, 1999/2003; Moules, 2002). This movement in and out of the data, extensive readings, re-readings, reflection, dialogue, and challenging takenfor-granted assumptions allows for consideration of that which might not have been initially visible, enhancing the understanding of the topic. The remainder of this manuscript is related directly to the first author’s findings around the community of children’s cancer camps. It is appropriate that at this point, hermeneutics, as a topic, needs to disappear into the background while the topic of community takes center stage (Moules, 2002). It requires a mental “switching of gears,” of sorts, as the reader will notice a change in the style, tone, and cadence of the writing, as well as the type of language used. In the next section, we offer an engagement in the world of children’s cancer camps and the lives of these families who live with the diagnosis of childhood cancer.
Interpretive Analysis Community as Sensus Communis We belong to many communities throughout the course of our lifetimes, some defined by physical boundaries like the communities in which we live and others defined by shared interests or circumstances. It is impossible to separate ourselves from these communities; I speak, of course, not in the literal sense of leaving a physical location and, thus, a community, but rather in the sense of it being impossible to separate from the traditions, history, and culture of the communities within which our lives are housed. Community is a concept or model—something we cannot physically touch or view in its entirety— and is defined as “a unified body of individuals” (Community, n.d.). Often, when we speak of communities, we speak of having a sense of community, comprised of membership, influence, integration and fulfillment of needs, and shared emotional connection (McMillan & Chavis, 1986). Central to the idea of community is the concept of belonging to something. The community of childhood cancer—individuals and families who share the common denominator of childhood cancer—is a community no one enters willingly, yet once inside, it appears to offer a profound sense of belonging. This sense of belonging has been discussed in the literature in the context of minority identity (e.g., Koefoed & Simonsen, 2011; Lee & Brotman, 2011; Peplau, Fingerhut, Grant, Wittig, & Ghavami, 2011). Being in a minority, such as the community of families with childhood cancer, can not only be a marginalizing experience but also one offering a feeling of protectiveness and identity reinforcing.
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It’s different for everybody but for me, I think the experience of being in a place where people are all experiencing, or have experienced, the same thing . . . and the support that gives, especially for people who don’t ever get a break . . . to be in a place where everybody’s experienced the same or similar, and are supporting one another and being able to just be who you are. (Parent)
Gadamer (1960/1989) spoke of sensus communis, its literal translation from Latin meaning “common sense,” however not in the regular, everyday use of the phrase. Sensus communis, according to Gadamer, relates to the general sense—the “common” sense—of the community. It is a common sense not only because it is widely accepted but also because it is genuinely and authentically shared by a community (Gelfert, 2006). The main thing for our purposes is that here sensus communis obviously does not mean only that general faculty in all men but the sense that founds community . . . hence, developing this communal sense is of decisive importance for living. (Gadamer, 1960/1989, p. 21)
Sensus communis can help us contextualize and understand in different ways and is rooted in a common way of being. It speaks of connectedness to others and a deep sense of belonging. I believe one of the ways we might understand the profound connections and support that families offer one another simply by virtue of a shared diagnosis is through sensus communis. These families share a “common” sense with one another—a sense only acquired by those who share the experience of having a child with cancer. There is a privacy to this sense— even I, for example, having worked closely with these children and families for many years, can never share in this “common” sense. Knowledge exists within the sensus communis that cannot be taught. As much as I would like to think I know about this experience, I can never really know it, unless I have lived it. One of the dads said, “I can’t take anymore time off work so I could only come out for a couple days, ’cause you know, being off for a year” and I said “Yeah,” and he goes, “People here get that! My family doesn’t get that!” And he kinda walks away and I’m laughing to myself, ’cause it was true, you know, we do get that, because all of a sudden you’re not able to work, you’re not able to do anything. (Parent)
It struck me that there was a sense of relief among these families, at belonging to this community—the kind of relief that helps to shoulder the
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heavy weight of the burden of this disease and that offers a break from the fear and despair so often experienced, particularly in families newly diagnosed. This sense of community and belonging—the sensus communis—is fostered by children’s cancer camps. Camp brings these families together into its community, the physical community of camp, defined in the traditional sense of the word by its landscape and natural boundaries. Then, like good hermeneutic work (Moules et al., 2012), it disappears into the background and allows for the sensus communis to form. For many families, camp is the first time they are exposed to other cancer families and often, up until that point, have felt very alone and isolated. And you know, the thing is, sometimes I think when you’re in it and feel alone, yeah you go to the hospital and you see everybody else going through their stuff and you realize that you’re not the only one, but you’re not there to converse on a personal level, you know? And so yeah, it’s probably few and far between conversations in the years since treatment that I’ve had this, been able to have these kinds of conversations with parents. (Parent)
A Safe Place to Be Part of the sensus communis in this community is comprised of a concern for safety. At the beginning of this manuscript, I detailed some of the physical and practical concerns for these children with cancer that necessitates the need for a camp suited specifically for their unique needs and challenges. This safety concern, I learned, is one of the elements that fall under the umbrella of “you cannot understand it unless you have lived it” and, without exception, every parent I spoke to discussed their concerns around safety. I guess one big thing too, was the um, having a safe place where there isn’t sickness or illness. Making sure that nobody comes to camp sick because of the health concerns, and, you know, [immune suppressed] systems kids have to deal with, you know . . . and when they’re on medication or they have to be in the nursing station, or whatever, for 3 or 4 hours a day, um, you can’t do that anywhere else. So the specific needs are addressed and cared for —a lot of those kids wouldn’t be able to go to any other camp. (Parent)
Safety is a concept often taken for granted or not thought about with any depth, until it is missing. Feeling safe implies a sense of control over the environment; when we are in control of “things,” we are more inclined to feel secure than when we have no control. Once a child is diagnosed with cancer, parents, in many ways, must relinquish much of their control with respect to their child. Treatment, schedules, side effects, along with innumerable aspects
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of daily life are no longer in a parent’s control, and I suggest that this leads to an immeasurable sense of feeling unsafe. While parents spoke about the safety needed for their child (at camp), I suggest that the safety to which they were referring was also for themselves. Camp provided the opportunity to experience safety without the stranglehold, often obsessive preoccupation, of concern for their child. So, you know, they were doing their thing, something happened and the rocks got thrown, Matthew1 had a fit cause he had put them all in a row, and you know, everything has to be linear with him, and he went launching after this little boy. And this girl [referring to a counselor], who you know, is young, really, stepped in, calmly stopped it, turned the situation around, and before I could get two feet she had it under control, she’d calmed it down, and she had directed him to something else. And that made the whole week for me, ’cause at his school, it took eight months to get them to understand him, and it took her an hour. (Parent)
Parents were able to feel in control, knowing that camp is structured in such a way as to (as much as possible) ensure the safety of the children. It is paradoxical because by regaining a sense of control—of safety—from camp, they were able to relinquish some of the control with respect to their children. In other words, they are given a break from constantly thinking about their child’s safety.
Heeding the Call of the Other Being in a community necessarily implies one is not alone. This brings to mind Levinas’s (1969/1980) concept of the “Other,” referring to a person other than oneself. The Other, according to Levinas, is identified as “different,” and an encounter with another is a privileged occurrence. A part of how we understand ourselves, said Levinas, is determined by how we define the Other, as many of the roles we construct for ourselves are done so in relation to the Other. The moment we encounter the face of another—Levinas (1985) described this as the face-to-face encounter with the Other—is the moment we enter the grip of another and are beholden to an ethical responsibility: Access to the face is straightaway ethical . . . There is first the very uprightness of the face, its upright exposure, without defense. The skin of the face is that which stays most naked, most destitute. It is the most naked, though with a decent nudity. It is the most destitute also: there is an essential poverty in the face; the proof of this is that one tries to mask this poverty by putting on poses, by taking on a countenance. (p. 85)
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Recognizing the Other begins with the opening of the self in the face-toface encounter and an understanding that the Other needs something from you. It is an inescapable call connected to recognizing the suffering of another and opening of the self so as to put oneself into a place of vulnerability. This vulnerability, according to Levinas (1969/1980), is the starting point for the responsibility, or ethic, we feel toward another human being. A call to ethics in relationship begins with this interruption of self, by self (Levinas, 1969/1980). Children, particularly siblings of children with cancer, were presented with many opportunities at camp during which they were confronted with “otherness.” Mother: Michael [8-year-old sibling] had an eye-opener this year; he was telling us about it. CML (Interviewer): What was that? Mother: Scars. The scars that some of the kids have. Because he sees Abby, because she has ALL [leukemia], she just has one little scar and a bump, so to him, it’s all neat and tidy. But when he sees some of these other kids and their scars are . . . like all over, in different spots . . . Father: You know, he said, “One guy had a big scar across his belly and stuff . . .” CML: And how does he—did he—process that? What does he think of that? Mother: I’m not sure . . . He just mentioned it and wanted to know why that would be and we told him well, because kids have cancer in all different kinds of spots so their surgery would be different, and he kinda just processed it but I don’t think he [had] really thought about different types of cancer. Father: But he’s very accepting of it, I think because of going out there [camp]. He’s met kids, you know, who’re not quite confined to a wheelchair, but pretty close, you know, and he doesn’t discriminate against them. I mean he just accepts them as . . . kids. I believe one way to understand how children process these kinds of encounters with other children, so physically or cognitively different from themselves, is through understanding the concept of the Other. Kearney (2003) argued that, until we recognize ourselves in the Other and understand that the Other resides within ourselves, we cannot understand how our most basic fears and desires manifest themselves in the world, and how we can learn to live with them. This seems like a complex, philosophical thought with respect to children, but I offer that there is simplicity to it. These
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children are presented with moments in which they realize that kids with scars, missing limbs, Down syndrome, and other anomalies are really not that different from themselves. On some level, they are aware of the familiarity and strangeness of the Other (Levinas, 1969/1980) and are confronted with moments in which responsibility takes them over, and they recognize the call of the Other to accept their differentness, their otherness. It is perhaps the very emergence and enactment of the “common” sense that brings forth the Other and offers an inescapable realization of otherness. Another parent offered this explanation: But, you know, if you’re in a school setting where there’s 300 [kids]—or the child in the wheelchair is one of 300 kids and you don’t get the one on one, but out there [at camp] you get small group exposure to all these kids [referring to kids in wheelchairs, or other visually “different” kids] and you realize they’re still normal kids if they’re in a wheelchair, or they don’t have a leg, or if they don’t have hair, or have a big scar across their chest. You know, so it gives them [siblings]—yeah, exposure is probably the best way to say it. And there was— there’s always been somebody running around without a leg! (Parent)
By virtue of repeated exposure to “otherness,” at camp, children gain awareness, an ethical responsibility of sorts, for the Other. This is one of the invisible, nameless, and intangible things that happens that we call “building character,” “compassion,” or “tolerance” and, while aptly named in some respects, are the side effects of this recognition of the Other. A mother described how this capacity and this sense of humanity manifests and extends beyond camp: Before we went to camp, Molly [the sibling of the child with cancer] was in [preschool], and she made a comment that one of the other little boys, she didn’t like him, because he tried to hug her and he was different. And I was like, “WHOA, back up the bus! We don’t talk like that, we don’t use those mean words, we don’t refer to that, where did you learn these things?” . . .But at the camp, she was surrounded by quirkiness . . . and since we’ve come back, we’ve seen a couple kids in wheelchairs, you know . . . there was another little boy who was walking by and he had no hair, it was at the zoo, she walked right up to him and said, “Do you have cancer in your head too?” And he turned around, and he was like five or six, and he was, “NO! It’s in here!” (points to torso) and she goes, “that’s an ow-y . . . your hair will come back, look at him,” and she’s pointing to my son [the child with cancer]. She had this frank little conversation with this little boy . . . and then they just kinda split. But she got it. I don’t know if cancer camp was the one thing that kinda kicked her, and she saw all these different kids that were different and stuff, but she was nice about it, she was friendly and she actually hugged this little boy before we
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walked away . . . But it was nice, and to me, I was like, ok, and I attribute that to camp because there was kids with no hair, some hair, whatever, didn’t matter. They don’t feel good so just treat them nicely, like be a little more gentle with them.
What it means to be other than the self is much written about in philosophical literature. Levinas (1969/1980) pointed out that Western philosophical tradition has historically favored the self at the expense of the other. Postmodern thought, in response, insists on the absolute otherness of the other—every other is wholly other (Treanor, 2006). The middle ground, argued for by contemporary theorists, is every other is truly other, but no other is wholly other (Treanor, 2006). This is exactly what I think is happening to these children at camp. They recognize themselves in the Other, and with that recognition comes an ethic, a responsibility they cannot ignore, to open of themselves, put themselves in a place of vulnerability, and heed the call of the Other.
Camp Is Not for Everyone Not all families in the community of childhood cancer like, and go, to camp. Several parents offered their thoughts as to why: There was a family there today, they were picking up their boys, and ah, they had actually signed up for family camp and didn’t go ’cause they just didn’t think they could handle it emotionally, and I totally understood that. [H]er daughter had just died and she says no, I, I hate cancer, I hate that it took my daughter away and I don’t want to have anything to do with it. So it’s not as if camp has anything to do with it, they don’t want . . . they were so mad at the fact that [she] had cancer, and they lost their child, that they pushed everything back . . . it’s easy to do that, it really is so easy.
Sometimes families reject the community into which they were thrust and shun being included in its sensus communis. Estefan and Roughley (2013) suggested that we can live in communities of conflict, where opposing interests and perspectives bring us awkwardly together, creating contested ground but community nonetheless. While families may be a part of a community in the way that their children share a diagnosis of childhood cancer, that does not mean that they are there willingly, or to participate. It reminds us that there is more to the sensus communis than a shared diagnosis. Estefan, McAllister, and Rowe (2004) cautioned that the “common” sense that arises from experience can become the “dominant” sense, and those who do not (or
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cannot) share in this common sense may be marginalized or ignored. I do not know if this is what happens to the families who choose not to participate in cancer camp. My experience in the interviews was that parents, like in the above quotes, understood and were even sympathetic toward others that chose not to come to camp. It is worth the note of caution, however, to recognize that there are always those who will feel they do not belong to, or are not a part of, cancer camp.
Implications for Nursing Practice Some nurses are privileged to work with these children and families at camp; however, most do not ever get that opportunity. There were many “lessons learned” at camp, however, that transfer to not only inpatient and outpatient nursing but also to the overall care of the family. It is important to be aware of the need for families to connect with one another, to form a community— a sensus communis—once their child is diagnosed with cancer. It is tempting to assume that because a family is admitted for weeks or months, they would naturally connect with other families and find their connections and support; however, as this research has demonstrated, this is not necessarily the case. Nurses are in an opportune position to foster connections among families, ensure they become aware of the supports that exist, and even to foster linkages between families. It is this sensus communis, we surmise, that contributes most to the belonging, understanding, and acceptance so often described by parents in this research. There can be a healing power in a community, where those who have lived, or are living, through something traumatic, are able to find greater healing than if they were not a part of the community. Nurses are also in a position to promote camp to patients and families and intervene early for those who are concerned or hesitant to go. Misinformation, fear, and other reservations are easily cleared by nurses, who know to engage with families around the idea of camp, and to explain its benefits for the child with cancer, siblings, and parents. In addition, nurses need to remember, in their efforts to promote camp, that it will not be a fit for all children and families and one size does not fit all. Important in this is that families do not feel pressured or guilty in their choices of not attending.
Implications for Future Research Be it in outdoor education, adventure programming, or children’s cancer camps, the existing research is predominantly from the quantitative paradigm. Constructs such as self-concept, support, and psychosocial impact will
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always lend themselves well to psychometric measurements and undoubtedly will continue to be the foci of future quantitative researchers. Interestingly though, much of the literature reviewed spoke to the limitations of these measures—how “something was missing,” or at the very least, inadequately capturing the data. In some of the articles, the tone of the discussion or conclusion sections had an element of frustration to it—as if the researchers knew there was more there but were limited by way of method. There is much to be learned from children’s cancer camps, starting with the most fundamental of concepts: How might we understand the meaning of children’s cancer camps for children and their families? I believe what is missing from the current literature is the voice of the children and their families. What do they think? What do they have to say? What can they teach us? There is richness and complexity in the experience of cancer camps that has not, as yet, been captured by the existing research. There is, as Hattie et al. (1997) suggested, an “intangibleness” to camps that may lend well to qualitative research approaches. This complexity is difficult to access by quantitative means alone and, to the best of my knowledge, this is the first hermeneutic study related to children’s cancer camps. Hermeneutic inquiry is well situated to make sense of some of the particulars and complexities of children’s cancer camps. While quantitative approaches are useful in many instances, any single approach to understanding is limited, and many authors have argued that qualitative research can provide answers to questions that no quantitative approach could address (Koch, 1996; Moules, 2002; Smits, 1997). While this study was not intended to be homogeneous with respect to participant recruitment, it is recognized that there could be significant value in understanding the particulars of different homogeneous groups (e.g., bereaved families who still attend camp, newly diagnosed families, etc.). In addition, for those families who choose not to send their child to camp, there would be benefit in understanding why, so that potential alternative resources might be in place for them that would better suit their needs. Understanding the meaning of cancer camps for the child with cancer and his or her family can help health care professionals and philanthropic organizations that fund cancer camps refine and improve programs and services offered to these families, thereby improving the quality of care they receive. In addition, good-quality research can be utilized by these organizations to further legitimize camp experience as not only a “feel good” experience but also as one that offers significant benefits to children and families. Pediatric oncology programs may target cancer camps as an intervention used to improve psychosocial health and outcomes versus simply an enjoyable experience for the child.
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Concluding Thoughts “What is it about community that heals us? Is it reflection, channeling, the very normalization of trauma? Or is it, in fact, solidarity?” (Kepler, 2011, p. 260). Kepler’s (2011) quote, though from a book a fiction, offers insight into what I believe to be at the heart of the sensus communis of this community of families—solidarity. “Solidarity” comes from the French solidarité, meaning “mutual responsibility” (Solidarity, n.d.). These families feel a mutual responsibility for one another. Their adversity bonds them in solidarity to care for one another and for each other’s children, as well as their own. They realize they cannot do this alone, and the unity of this community—the mutual responsibility or solidarity they enter into once they become a part of it—makes them realize they do not have to do this alone. How camp figures in this, I believe, is by acting as the catalyst for this to happen. Parents described “feeling alone” and “living in a bubble” until they came to camp and became aware of the community to which they now belonged. The act of coming together at camp helps families to understand how they fit into the bigger picture. It is this mutual responsibility that contributes to what Kepler was referring to in the healing power of community. Knowing that this kind of a community is there is actually a relief . . . they care and everybody out there really, really cares. And they feel it—you feel like you’re part of the big family. (Parent)
There are unique elements that contribute to the sensus communis in these families, and no doubt other hermeneutic researchers would interpret it differently or offer alternate perspectives. Hermeneutics is, after all, the answer to a question that could have been answered differently (Gadamer, 1960/1989). However, I believe safety and control and recognition of the Other to be some of the most unique, representative elements of what contributes to the “common” sense of this community. Acknowledgment The first author wishes to acknowledge the Alberta Children’s Hospital Foundation for funding her doctoral research and to thank her doctoral supervisor Dr. Nancy Moules and supervisory committee, Drs. Andrew Estefan and Deborah McLeod.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Funding The author(s) declared receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Alberta Children’s Hospital Foundation.
Note 1.
All names used in this manuscript are pseudonyms.
References Annells, M. (1996). Hermeneutic phenomenology: Philosophical perspectives and current use in nursing research. Journal of Advanced Nursing, 23, 705-713. doi:0.1111/j.1365-2648.1996.tb00041.x Benson, P. J. (1987). The relationship between self-concept and a summer camping program for children and adolescents who have cancer. Journal of Pediatric Oncology Nursing, 4(1-2), 42-43. doi:10.1177/104345428700400116 Binding, L. L., & Tapp, D. M. (2008). Human understanding in dialogue: Gadamer’s recovery of the genuine. Nursing Philosophy, 9, 121-130. doi:10.1111/j.1466769X.2007.00338.x Bluebond-Langner, M., Perkel, D., Goertzel, T., Nelson, K., & McGeary, J. (1990). Children’s knowledge of cancer and its treatment: Impact of an oncology camp experience. The Journal of Pediatrics, 116, 207-213. doi:10.1016/S00223476(05)82876-8 Canadian Association of Pediatric Oncology Camps. (2012). About CAPOC. Retrieved from http://www.cancercamps.ca/main/?page_id=224 Carpenter, P. J., Sahler, O. J. Z., & Davis, M. S. (1990). Use of a camp setting to provide medical information to siblings of pediatric cancer patients. Journal of Cancer Education, 5, 21-26. doi:10.1080/08858199009528030 Community. (n.d.). In Merriam-Webster’s online dictionary. Retrieved from http:// www.merriam-webster.com/dictionary/community Estefan, A., McAllister, M., & Rowe, J. (2004). Difference, dialogue, dialectics: A study of caring and self-harm. In K. Kavanagh & V. Knowlden (Eds.), Many voices: Toward caring culture in health care and healing (pp. 21-61). Madison, WI: The University of Wisconsin Press. Estefan, A., & Roughley, R. (2013). Composing self on narrative landscapes of sexual difference: A story of wisdom and resilience. Canadian Journal of Counselling and Psychotherapy, 47, 29-48. Gadamer, H. G. (1989). Truth and method (2nd Rev. ed.) (J. Weinsheimer & D. G. Marshall, Trans.). New York, NY: Continuum. (Original work published 1960) Gelfert, A. (2006). Kant on testimony. British Journal for the History of Philosophy, 14, 627-652. Retrieved from http://www.gelfert.net/People/Axel/axel.html Grondin, J. (2003). The philosophy of Gadamer (K. Plant, Trans.). Montreal, Quebec, Canada: McGill-Queen’s University Press. (Original work published 1999)
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Hattie, J., Marsh, H., Neill, J., & Richards, G. (1997). Adventure education and Outward Bound: Out-of-class experiences that make a lasting difference. Review of Educational Research, 67, 43-87. Kearney, R. (2003). Strangers, gods and monsters. New York, NY: Routledge. Kepler, L. (2011). The hypnotist. Toronto, Ontario, Canada: McClelland & Stewart. Kessell, M., Resnick, M. D., & Blum, R. W. M. (1985). Adventure, etc.—A health promotion program for chronically ill and disabled youth. Journal of Adolescent Health Care, 6, 433-438. doi:10.1016/S0197-0070(85)80048-6 Kids Cancer Care Foundation of Alberta. (2012). Retrieved from http://www.kidscancercare.ab.ca/camp_and_community.htm Koch, T. (1996). Implementation of a hermeneutic inquiry in nursing: Philosophy, rigor, and representation. Journal of Advanced Nursing, 24, 174-184. doi:10.1046/ j.1365-2648.1996.17224.x Koefoed, L., & Simonsen, K. (2011). “The stranger,” the city and the nation: On the possibilities of identification and belonging. European Urban and Regional Studies, 18, 343-357. doi:10.1177/0969776411399343 Laing, C. M. (2012). In play, at play. Journal of Applied Hermeneutics, Article 6. Retrieved from http://jah.synergiesprairies.ca/jah/index.php/jah/article/view/16/ pdf Laing, C. M., & Moules, N. J. (2013). The island of misfit toys. Journal of Applied Hermeneutics, Article 8. Retrieved from http://hdl.handle.net/10515/sy5js9hq4 Laing, C. M., & Moules, N. J. (2014). Stories from cancer camp: Tales of glitter and gratitude. Journal of Applied Hermeneutics. Advance online publication. Retrieved from http://jah.synergiesprairies.ca/jah/index.php/jah/article/view/59 Lee, E. O. J., & Brotman, S. (2011). Identity, refugeeness, belonging: Experiences of sexual minority refugees in Canada. Canadian Review of Sociology, 48, 241-274. Retrieved from http://www.csa-scs.ca/crs-home/ Levinas, E. (1980). Totality and infinity: An essay on exteriority (4th Rev. ed.). Pittsburgh, PA: Springer. (Original work published 1969) Levinas, E. (1985). Ethics and infinity. Detroit, MI: Gazelle Book Services. McMillan, D. W., & Chavis, D. M. (1986). Sense of community: A definition and theory. Journal of Community Psychology, 14, 6-23. Retrieved from http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)1520-6629 Mishna, F., Michalski, J., & Cummings, R. (2001). Camps as social work interventions: Returning to our roots. Social Work With Groups, 24, 153-171. doi:10.1300/ J009v24n03_11 Morse, J. M., & Field, P. A. (1995). Qualitative research methods for health professionals (2nd ed.). Thousand Oaks, CA: SAGE. Moules, N. J. (2002). Hermeneutic inquiry: Paying heed to history and Hermes— An ancestral, substantive, and methodological tale. International Journal of Qualitative Methods, 1(3), Article 1. Retrieved from http://www.ualberta. ca/~iiqm/backissues/1_3Final/pdf/moules.pdf Moules, N. J., Laing, C. M., McCaffrey, G., Tapp, D. M., & Strother, D. (2012). Grandparents’ experiences of childhood cancer, part one: Doubled
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and silenced. Journal of Pediatric Oncology Nursing, 29, 119-132. doi:10.1177/1043454212439626 Moules, N. J., McCaffrey, G., Morck, A. C., & Jardine, D. W. (2011). On applied hermeneutics and the work of the world. Journal of Applied Hermeneutics, Article 1. Retrieved from http://jah.synergiesprairies.ca/jah/index.php/jah/article/view/5 Murray, J. S. (2001). Self-concept of siblings of children with cancer. Issues in Comprehensive Pediatric Nursing, 24, 85-94. doi:10.1080/01460860116709 Packman, W., Mazaheri, M., Sporri, L., Long, J. K., Chesterman, B., Fine, J., & Amylon, M. D. (2008). Projective drawings as measures of psychosocial functioning in siblings of pediatric cancer patients from the Camp Okizu study. Journal of Pediatric Oncology Nursing, 25, 44-55. doi:10.1177/1043454207311915 Peplau, L. A., Fingerhut, A., Grant, S. K., Wittig, M. A., & Ghavami, N. (2011). Testing a model of minority identity achievement, identity affirmation, and psychological well-being among ethnic minority and sexual minority individuals. Cultural Diversity & Ethnic Minority Psychology, 17, 79-88. doi:10.1037/ a0022532 Smits, H. (1997). Living within the space of practice: Action research inspired by hermeneutics. In T. R. Carson & D. Sumara (Eds.), Action research as a living practice (pp. 281-297). New York, NY: Peter Lang. Solidarity. (n.d.). In Online etymology dictionary. Retrieved from http://www.etymonline.com/index.php?allowed_in_frame=0&search=solidarity&searchmode= none Treanor, B. (2006). Aspects of alterity: Levinas, marcel, and the contemporary debate. Bronx, NY: Fordham University Press. Walker, D. A., & Pearman, D. (2009). Therapeutic recreation camps: An effective intervention for children and young people with chronic illness? Archives of Disease in Childhood, 94, 395-402. doi:10.1136/adc.2008.145631 Welch, M. J., Carlson, A. M., Larson, D., & Fena, P. (2007). Clinical profile, healthrelated quality of life, and asthma control in children attending US asthma camps. Annals of Allergy, Asthma & Immunology, 99, 496-501. doi:10.1016/S10811206(10)60377-8 Wellisch, D. K., Crater, B., Wiley, F. M., Belin, T. R., & Weinstein, K. (2006). Psychosocial impacts of a camping experience for children with cancer and their siblings. Psycho-Oncology, 15, 56-65. doi:10.1002/pon.922
Author Biographies Catherine M. Laing, RN, PhD, is an assistant professor in the Faculty of Nursing at the University of Calgary, Canada. Her clinical background and research interests are in the field of pediatric oncology. Recent publications include “The Island of Misfit Toys” in Journal of Applied Hermeneutics (2013, with N. J. Moules), “In play, at Play” in Journal of Applied Hermeneutics (2012), and “Odds Ratios and Confidence Intervals: A Review for the Pediatric Oncology Clinician” in Journal of Pediatric Oncology Nursing (2011, with J. Rankin).
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Nancy J. Moules, RN, PhD, is a professor in the Faculty of Nursing at the University of Calgary, Canada, and holds the Alberta Children’s Hospital Foundation/Research Institute Professorship in Child and Family Centred Cancer Care. Her clinical and research interests are in pediatric psychosocial oncology and Family Systems Nursing. Recent publications include “Isn’t All of Oncology Hermeneutic?” in Journal of Applied Hermeneutics (2013, with D. W. Jardine, G. P. McCaffrey, & C. B. Brown), “Grandparents’ Experiences of Childhood Cancer, Part One: Doubled and Silenced” in Journal of Pediatric Oncology Nursing (2012, with C. M. Laing, G. McCaffrey, D. M. Tapp, & D. Strother), and “Grandparents’ Experiences of Childhood Cancer, Part Two: The Need for Support” in Journal of Pediatric Oncology Nursing (2012, with G. McCaffrey, C. M. Laing, D. M. Tapp, & D. Strother).
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JFNXXX10.1177/1074840714520717Journal of Family NursingLaing and Moules
Article
Children’s Cancer Camps: A Sense of Community, a Sense of Family
Journal of Family Nursing 2014, Vol. 20(2) 185–203 © The Author(s) 2014 Reprints and permissions: sagepub.com/journalsPermissions.nav DOI: 10.1177/1074840714520717 jfn.sagepub.com
Catherine M. Laing, RN, PhD1, and Nancy J. Moules, RN, PhD1
Abstract Childhood cancer is a family affair, and each year in Canada, approximately 1,400 children and adolescents under the age of 20 are diagnosed with cancer. Innumerable challenges accompany this diagnosis, and in recognition of the stress of childhood cancer, children’s cancer camps arose in the 1970s to help children and their families escape the rigidity and severity of cancer treatment. Very little is known about these cancer camps, and to that end, a philosophical hermeneutic study was conducted to understand the meaning of children’s cancer camps for the child with cancer and the family. Six families were interviewed to bring understanding to this topic. While the research included findings related to the concept of play, fit and acceptance, storytelling, and grief, this paper will detail the finding related to the solidarity of the community—the “camp family”—as one that creates intense, healing bonds. Keywords childhood cancer, children’s cancer camps, families, qualitative research, hermeneutic inquiry
1University
of Calgary, Alberta, Canada
Corresponding Author: Catherine M. Laing, Faculty of Nursing, University of Calgary, Professional Faculties Building, 2500 University Dr. NW, Calgary, Alberta, Canada T2N 1N4. Email: [email protected]
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Most kids with cancer are left out. Their suppressed immune systems (from chemotherapy and radiation) mean they are highly susceptible to infection, and an infection in a child with little to no immunity is a life-threatening event. Because of this risk, these children are unable to attend school for the majority of their treatment, cannot see their friends and engage in social activities with their peers, and often miss out on significant events in their lives because of their disease. They also cannot attend regular summer camps (for healthy children), where children and adolescents engage in activities such as swimming, zip-lining, drama, and campfires. It is not untrue that cancer can rob a person of a childhood. In recognition of the stress of childhood cancer, children’s cancer camps arose in the 1970s as a way for children and their families to escape the rigidity and severity of cancer treatment (Bluebond-Langner, Perkel, Goertzel, Nelson, & McGeary, 1990; Kids Cancer Care Foundation of Alberta, 2012). From diagnosis through treatment, to survival or bereavement, cancer camps are structured to meet the needs of the whole family at each stage in the cancer experience (Kids Cancer Care Foundation of Alberta, 2012). Currently in Canada, eight camps provide specialized oncology and community support programs to 5,252 children and their families (Canadian Association of Pediatric Oncology Camps, 2012), and as more children are surviving childhood cancer, the need for specialized camps and community programs continues to grow. Our intent in this article is to describe one of the findings of the first author’s philosophical hermeneutic doctoral research around understanding the meaning of children’s cancer camps for the child with cancer and the family. While the doctoral thesis included findings related to the concept of play at cancer camp (both philosophically and theoretically; Laing, 2012), the fit and acceptance that children and families find at camp (Laing & Moules, 2013), storytelling as a means of re-shaping and understanding traumatic experiences (Laing & Moules, 2014), and grief as something that children and families experience differently, this paper will detail the finding related to the solidarity of the community—the “camp family”—as one that creates intense, healing bonds.
Background Information and Literature Review Many anecdotal accounts of the benefit of cancer camps exist; however, a paucity of research has been conducted in this area. A literature search in nursing, education, family, and psychology databases yielded 16 studies dealing specifically with cancer camps; in other words, very little is understood about the effects of cancer camps on the child and family.
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Of the 16 studies that have been published to date, topics such as selfconcept (Benson, 1987; Kessell, Resnick, & Blum, 1985; Murray, 2001), psychosocial impact (Packman et al., 2008; Wellisch, Crater, Wiley, Belin, & Weinstein, 2006), medical knowledge (Bluebond-Langner et al., 1990; Carpenter, Sahler, & Davis, 1990), and other measurable constructs have been examined. Most studies report either a neutral effect from camp or a marginal improvement on the construct in question. All studies, however, have self-reported limitations due to small sample sizes and lack of comparison groups. More research has been conducted related to outdoor programming and therapeutic camping—a term used to describe a purposeful approach to recreation, often involving marginalized or vulnerable populations. Hattie, Marsh, Neill, and Richards’s (1997) meta-analysis of outdoor education programs suggested that self-concept, academic performance, leadership, interpersonal skills, personality, and adventuresomeness were all mildly positively correlated to outdoor programming. Over the past few years, many childhood disease groups have organized camps for children specific to their disease, for example, Camp Huff n’ Puff (asthma), Camp Maska (nephrology), and so on. There has been a substantial amount of literature and research pertaining to these therapeutic camps (e.g., Mishna, Michalski, & Cummings, 2001; Walker & Pearman, 2009; Welch, Carlson, Larson, & Fena, 2007), with most studies concluding that these camps are of benefit to the children for whom they are targeted. Childhood cancer, however, is a unique disease, and with that comes unique challenges, differences, and outcomes that must be considered with respect to camp. To the best of our knowledge, this was the first qualitative study undertaken in search of understanding the meaning of these camps to children with cancer and their families.
Research Design Method The research question for this study was, “How might we understand the meaning of children’s cancer camps on children and their families?” This research was conducted in the tradition of philosophical hermeneutics, defined as the art, tradition, and practice of interpretation (Gadamer, 1960/1989), as developed by Hans-Georg Gadamer (1900-2002). Hermeneutics offers a way to know and understand the world, and thus the topic (Gadamer, 1960/1989). It is a well-documented and sophisticated method of research within the human sciences, and, particularly in health care, hermeneutics has been shown to have invaluable applied utility,
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offering insight into phenomena that has direct implications for practice (Moules, McCaffrey, Morck, & Jardine, 2011). Hermeneutics allows us, with the help of others, to make sense of the particulars (Moules, 2002) and arrive at deeper understandings of how children’s cancer camps, for example, impact patients, families, and nurses. Hermeneutics is an interpretive methodology that expects knowledge to emerge from dialogue in the form of an unpredictable discovery rather than a controlled outcome (Annells, 1996). It is a reflexive inquiry where the researcher is not considered a separate entity, a noninfluencing factor, from that which she is researching. Hermeneutics seeks to understand rather than explain.
Recruitment of Participants The study participants for this research project included children and their families who attended the Kids Cancer Care (KCC) Foundation’s Camp Kindle in the summer 2012 season. Families were initially contacted about participation in this study by the KCC family liaison and then, upon showing interest, were contacted by the researcher. A total of six families (19 participants in total) were interviewed (Table 1). In hermeneutic research, like other qualitative research methods, measures of “power” and random sampling are not used (Koch, 1996; Morse & Field, 1995; Moules, 2002). The best individuals to include in a hermeneutic inquiry are ones that can most inform understanding of the topic (known as purposive sampling) as it is the researcher’s aim to elicit a richness of data through the experiences of the participants. All interviews took place within 1 month of camp attendance.
Data Generation After informed written consent was obtained, semistructured interviews took place at the location of the participant’s choosing (most occurred in the participants’ homes). Each interview took 1 to 1½ hours, and was recorded and transcribed for the ongoing analysis, and basic demographics of the participants were also obtained. Field notes were written after each interview, recording contextual details to assist with the data analysis. In addition, the first author attended camp as a participant observer on many occasions which generated further data that was incorporated into the analysis.
Analysis and Interpretation of Data In the tradition of hermeneutics, data analysis is synonymous with interpretation (Moules, Laing, McCaffrey, Tapp, & Strother, 2012), and arriving at
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Laing and Moules Table 1. Participant Characteristics. Participants Family A
Family B
Family C
Family D
Family E
Family F
Family structure Mother Child 1: 9 years Child 2: 11 years Child 3: 14 years Mother Father Child 1: 5 years Child 2: 8 years Mother Father Child 1: 10 years Child 2: 12 years Child 3: 14 years Mother Father Child 1: deceased Child 2: 9 years Child 3: 12 years Child 4: 15 years Child 5: 17 years Mother Father Child 1: 5 years Child 2: 7 years Mother Father Child 1: 9 years Child 2: 10 years
Present at interview
Status
Original diagnosis
Mother, child 1, Child 2 is cancer Wilms’ tumor child 2, child 3 survivor × 10 years; 5th time at camp Mother, Father, Child 2 currently Leukemia child 1, child 2 on active treatment; 3rd time at camp Mother Child 2 off Brain tumor therapy × 5 years; 4th time at camp Mother, Father, Bereaved family. Leukemia child 2, child Child 1 passed 3, child 4, away from child 5 cancer 6 years ago (aged 2 years); 6th time at camp Mother, Father, Child 2 had just Brain tumor child (age 7) completed active therapy; 2nd time at camp Mother Child 2 off Brain tumor therapy × 1 year; 3rd time at camp
interpretations in a hermeneutic study is a rigorous practice of bringing together knowledge, information, conversation, experience, and data. To understand the process of how interpretations are developed, the concepts of fusion of horizons and the hermeneutic circle are relevant. The fusion of horizons, or the coming together of two or more understandings of the topic, coupled with the genuine curiosity of the researcher and desire to understand the topic in a new way helped to further the understanding of the topic (Binding & Tapp, 2008; Koch, 1996). The hermeneutic circle—the metaphorical representation of looking at the whole and the parts—invites the researcher to
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consider the particulars of the topic in the context of the familiar, and similarly, the familiar in the context of the particulars (Gadamer, 1960/1989; Grondin, 1999/2003; Moules, 2002). This movement in and out of the data, extensive readings, re-readings, reflection, dialogue, and challenging takenfor-granted assumptions allows for consideration of that which might not have been initially visible, enhancing the understanding of the topic. The remainder of this manuscript is related directly to the first author’s findings around the community of children’s cancer camps. It is appropriate that at this point, hermeneutics, as a topic, needs to disappear into the background while the topic of community takes center stage (Moules, 2002). It requires a mental “switching of gears,” of sorts, as the reader will notice a change in the style, tone, and cadence of the writing, as well as the type of language used. In the next section, we offer an engagement in the world of children’s cancer camps and the lives of these families who live with the diagnosis of childhood cancer.
Interpretive Analysis Community as Sensus Communis We belong to many communities throughout the course of our lifetimes, some defined by physical boundaries like the communities in which we live and others defined by shared interests or circumstances. It is impossible to separate ourselves from these communities; I speak, of course, not in the literal sense of leaving a physical location and, thus, a community, but rather in the sense of it being impossible to separate from the traditions, history, and culture of the communities within which our lives are housed. Community is a concept or model—something we cannot physically touch or view in its entirety— and is defined as “a unified body of individuals” (Community, n.d.). Often, when we speak of communities, we speak of having a sense of community, comprised of membership, influence, integration and fulfillment of needs, and shared emotional connection (McMillan & Chavis, 1986). Central to the idea of community is the concept of belonging to something. The community of childhood cancer—individuals and families who share the common denominator of childhood cancer—is a community no one enters willingly, yet once inside, it appears to offer a profound sense of belonging. This sense of belonging has been discussed in the literature in the context of minority identity (e.g., Koefoed & Simonsen, 2011; Lee & Brotman, 2011; Peplau, Fingerhut, Grant, Wittig, & Ghavami, 2011). Being in a minority, such as the community of families with childhood cancer, can not only be a marginalizing experience but also one offering a feeling of protectiveness and identity reinforcing.
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It’s different for everybody but for me, I think the experience of being in a place where people are all experiencing, or have experienced, the same thing . . . and the support that gives, especially for people who don’t ever get a break . . . to be in a place where everybody’s experienced the same or similar, and are supporting one another and being able to just be who you are. (Parent)
Gadamer (1960/1989) spoke of sensus communis, its literal translation from Latin meaning “common sense,” however not in the regular, everyday use of the phrase. Sensus communis, according to Gadamer, relates to the general sense—the “common” sense—of the community. It is a common sense not only because it is widely accepted but also because it is genuinely and authentically shared by a community (Gelfert, 2006). The main thing for our purposes is that here sensus communis obviously does not mean only that general faculty in all men but the sense that founds community . . . hence, developing this communal sense is of decisive importance for living. (Gadamer, 1960/1989, p. 21)
Sensus communis can help us contextualize and understand in different ways and is rooted in a common way of being. It speaks of connectedness to others and a deep sense of belonging. I believe one of the ways we might understand the profound connections and support that families offer one another simply by virtue of a shared diagnosis is through sensus communis. These families share a “common” sense with one another—a sense only acquired by those who share the experience of having a child with cancer. There is a privacy to this sense— even I, for example, having worked closely with these children and families for many years, can never share in this “common” sense. Knowledge exists within the sensus communis that cannot be taught. As much as I would like to think I know about this experience, I can never really know it, unless I have lived it. One of the dads said, “I can’t take anymore time off work so I could only come out for a couple days, ’cause you know, being off for a year” and I said “Yeah,” and he goes, “People here get that! My family doesn’t get that!” And he kinda walks away and I’m laughing to myself, ’cause it was true, you know, we do get that, because all of a sudden you’re not able to work, you’re not able to do anything. (Parent)
It struck me that there was a sense of relief among these families, at belonging to this community—the kind of relief that helps to shoulder the
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heavy weight of the burden of this disease and that offers a break from the fear and despair so often experienced, particularly in families newly diagnosed. This sense of community and belonging—the sensus communis—is fostered by children’s cancer camps. Camp brings these families together into its community, the physical community of camp, defined in the traditional sense of the word by its landscape and natural boundaries. Then, like good hermeneutic work (Moules et al., 2012), it disappears into the background and allows for the sensus communis to form. For many families, camp is the first time they are exposed to other cancer families and often, up until that point, have felt very alone and isolated. And you know, the thing is, sometimes I think when you’re in it and feel alone, yeah you go to the hospital and you see everybody else going through their stuff and you realize that you’re not the only one, but you’re not there to converse on a personal level, you know? And so yeah, it’s probably few and far between conversations in the years since treatment that I’ve had this, been able to have these kinds of conversations with parents. (Parent)
A Safe Place to Be Part of the sensus communis in this community is comprised of a concern for safety. At the beginning of this manuscript, I detailed some of the physical and practical concerns for these children with cancer that necessitates the need for a camp suited specifically for their unique needs and challenges. This safety concern, I learned, is one of the elements that fall under the umbrella of “you cannot understand it unless you have lived it” and, without exception, every parent I spoke to discussed their concerns around safety. I guess one big thing too, was the um, having a safe place where there isn’t sickness or illness. Making sure that nobody comes to camp sick because of the health concerns, and, you know, [immune suppressed] systems kids have to deal with, you know . . . and when they’re on medication or they have to be in the nursing station, or whatever, for 3 or 4 hours a day, um, you can’t do that anywhere else. So the specific needs are addressed and cared for —a lot of those kids wouldn’t be able to go to any other camp. (Parent)
Safety is a concept often taken for granted or not thought about with any depth, until it is missing. Feeling safe implies a sense of control over the environment; when we are in control of “things,” we are more inclined to feel secure than when we have no control. Once a child is diagnosed with cancer, parents, in many ways, must relinquish much of their control with respect to their child. Treatment, schedules, side effects, along with innumerable aspects
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of daily life are no longer in a parent’s control, and I suggest that this leads to an immeasurable sense of feeling unsafe. While parents spoke about the safety needed for their child (at camp), I suggest that the safety to which they were referring was also for themselves. Camp provided the opportunity to experience safety without the stranglehold, often obsessive preoccupation, of concern for their child. So, you know, they were doing their thing, something happened and the rocks got thrown, Matthew1 had a fit cause he had put them all in a row, and you know, everything has to be linear with him, and he went launching after this little boy. And this girl [referring to a counselor], who you know, is young, really, stepped in, calmly stopped it, turned the situation around, and before I could get two feet she had it under control, she’d calmed it down, and she had directed him to something else. And that made the whole week for me, ’cause at his school, it took eight months to get them to understand him, and it took her an hour. (Parent)
Parents were able to feel in control, knowing that camp is structured in such a way as to (as much as possible) ensure the safety of the children. It is paradoxical because by regaining a sense of control—of safety—from camp, they were able to relinquish some of the control with respect to their children. In other words, they are given a break from constantly thinking about their child’s safety.
Heeding the Call of the Other Being in a community necessarily implies one is not alone. This brings to mind Levinas’s (1969/1980) concept of the “Other,” referring to a person other than oneself. The Other, according to Levinas, is identified as “different,” and an encounter with another is a privileged occurrence. A part of how we understand ourselves, said Levinas, is determined by how we define the Other, as many of the roles we construct for ourselves are done so in relation to the Other. The moment we encounter the face of another—Levinas (1985) described this as the face-to-face encounter with the Other—is the moment we enter the grip of another and are beholden to an ethical responsibility: Access to the face is straightaway ethical . . . There is first the very uprightness of the face, its upright exposure, without defense. The skin of the face is that which stays most naked, most destitute. It is the most naked, though with a decent nudity. It is the most destitute also: there is an essential poverty in the face; the proof of this is that one tries to mask this poverty by putting on poses, by taking on a countenance. (p. 85)
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Recognizing the Other begins with the opening of the self in the face-toface encounter and an understanding that the Other needs something from you. It is an inescapable call connected to recognizing the suffering of another and opening of the self so as to put oneself into a place of vulnerability. This vulnerability, according to Levinas (1969/1980), is the starting point for the responsibility, or ethic, we feel toward another human being. A call to ethics in relationship begins with this interruption of self, by self (Levinas, 1969/1980). Children, particularly siblings of children with cancer, were presented with many opportunities at camp during which they were confronted with “otherness.” Mother: Michael [8-year-old sibling] had an eye-opener this year; he was telling us about it. CML (Interviewer): What was that? Mother: Scars. The scars that some of the kids have. Because he sees Abby, because she has ALL [leukemia], she just has one little scar and a bump, so to him, it’s all neat and tidy. But when he sees some of these other kids and their scars are . . . like all over, in different spots . . . Father: You know, he said, “One guy had a big scar across his belly and stuff . . .” CML: And how does he—did he—process that? What does he think of that? Mother: I’m not sure . . . He just mentioned it and wanted to know why that would be and we told him well, because kids have cancer in all different kinds of spots so their surgery would be different, and he kinda just processed it but I don’t think he [had] really thought about different types of cancer. Father: But he’s very accepting of it, I think because of going out there [camp]. He’s met kids, you know, who’re not quite confined to a wheelchair, but pretty close, you know, and he doesn’t discriminate against them. I mean he just accepts them as . . . kids. I believe one way to understand how children process these kinds of encounters with other children, so physically or cognitively different from themselves, is through understanding the concept of the Other. Kearney (2003) argued that, until we recognize ourselves in the Other and understand that the Other resides within ourselves, we cannot understand how our most basic fears and desires manifest themselves in the world, and how we can learn to live with them. This seems like a complex, philosophical thought with respect to children, but I offer that there is simplicity to it. These
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children are presented with moments in which they realize that kids with scars, missing limbs, Down syndrome, and other anomalies are really not that different from themselves. On some level, they are aware of the familiarity and strangeness of the Other (Levinas, 1969/1980) and are confronted with moments in which responsibility takes them over, and they recognize the call of the Other to accept their differentness, their otherness. It is perhaps the very emergence and enactment of the “common” sense that brings forth the Other and offers an inescapable realization of otherness. Another parent offered this explanation: But, you know, if you’re in a school setting where there’s 300 [kids]—or the child in the wheelchair is one of 300 kids and you don’t get the one on one, but out there [at camp] you get small group exposure to all these kids [referring to kids in wheelchairs, or other visually “different” kids] and you realize they’re still normal kids if they’re in a wheelchair, or they don’t have a leg, or if they don’t have hair, or have a big scar across their chest. You know, so it gives them [siblings]—yeah, exposure is probably the best way to say it. And there was— there’s always been somebody running around without a leg! (Parent)
By virtue of repeated exposure to “otherness,” at camp, children gain awareness, an ethical responsibility of sorts, for the Other. This is one of the invisible, nameless, and intangible things that happens that we call “building character,” “compassion,” or “tolerance” and, while aptly named in some respects, are the side effects of this recognition of the Other. A mother described how this capacity and this sense of humanity manifests and extends beyond camp: Before we went to camp, Molly [the sibling of the child with cancer] was in [preschool], and she made a comment that one of the other little boys, she didn’t like him, because he tried to hug her and he was different. And I was like, “WHOA, back up the bus! We don’t talk like that, we don’t use those mean words, we don’t refer to that, where did you learn these things?” . . .But at the camp, she was surrounded by quirkiness . . . and since we’ve come back, we’ve seen a couple kids in wheelchairs, you know . . . there was another little boy who was walking by and he had no hair, it was at the zoo, she walked right up to him and said, “Do you have cancer in your head too?” And he turned around, and he was like five or six, and he was, “NO! It’s in here!” (points to torso) and she goes, “that’s an ow-y . . . your hair will come back, look at him,” and she’s pointing to my son [the child with cancer]. She had this frank little conversation with this little boy . . . and then they just kinda split. But she got it. I don’t know if cancer camp was the one thing that kinda kicked her, and she saw all these different kids that were different and stuff, but she was nice about it, she was friendly and she actually hugged this little boy before we
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walked away . . . But it was nice, and to me, I was like, ok, and I attribute that to camp because there was kids with no hair, some hair, whatever, didn’t matter. They don’t feel good so just treat them nicely, like be a little more gentle with them.
What it means to be other than the self is much written about in philosophical literature. Levinas (1969/1980) pointed out that Western philosophical tradition has historically favored the self at the expense of the other. Postmodern thought, in response, insists on the absolute otherness of the other—every other is wholly other (Treanor, 2006). The middle ground, argued for by contemporary theorists, is every other is truly other, but no other is wholly other (Treanor, 2006). This is exactly what I think is happening to these children at camp. They recognize themselves in the Other, and with that recognition comes an ethic, a responsibility they cannot ignore, to open of themselves, put themselves in a place of vulnerability, and heed the call of the Other.
Camp Is Not for Everyone Not all families in the community of childhood cancer like, and go, to camp. Several parents offered their thoughts as to why: There was a family there today, they were picking up their boys, and ah, they had actually signed up for family camp and didn’t go ’cause they just didn’t think they could handle it emotionally, and I totally understood that. [H]er daughter had just died and she says no, I, I hate cancer, I hate that it took my daughter away and I don’t want to have anything to do with it. So it’s not as if camp has anything to do with it, they don’t want . . . they were so mad at the fact that [she] had cancer, and they lost their child, that they pushed everything back . . . it’s easy to do that, it really is so easy.
Sometimes families reject the community into which they were thrust and shun being included in its sensus communis. Estefan and Roughley (2013) suggested that we can live in communities of conflict, where opposing interests and perspectives bring us awkwardly together, creating contested ground but community nonetheless. While families may be a part of a community in the way that their children share a diagnosis of childhood cancer, that does not mean that they are there willingly, or to participate. It reminds us that there is more to the sensus communis than a shared diagnosis. Estefan, McAllister, and Rowe (2004) cautioned that the “common” sense that arises from experience can become the “dominant” sense, and those who do not (or
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cannot) share in this common sense may be marginalized or ignored. I do not know if this is what happens to the families who choose not to participate in cancer camp. My experience in the interviews was that parents, like in the above quotes, understood and were even sympathetic toward others that chose not to come to camp. It is worth the note of caution, however, to recognize that there are always those who will feel they do not belong to, or are not a part of, cancer camp.
Implications for Nursing Practice Some nurses are privileged to work with these children and families at camp; however, most do not ever get that opportunity. There were many “lessons learned” at camp, however, that transfer to not only inpatient and outpatient nursing but also to the overall care of the family. It is important to be aware of the need for families to connect with one another, to form a community— a sensus communis—once their child is diagnosed with cancer. It is tempting to assume that because a family is admitted for weeks or months, they would naturally connect with other families and find their connections and support; however, as this research has demonstrated, this is not necessarily the case. Nurses are in an opportune position to foster connections among families, ensure they become aware of the supports that exist, and even to foster linkages between families. It is this sensus communis, we surmise, that contributes most to the belonging, understanding, and acceptance so often described by parents in this research. There can be a healing power in a community, where those who have lived, or are living, through something traumatic, are able to find greater healing than if they were not a part of the community. Nurses are also in a position to promote camp to patients and families and intervene early for those who are concerned or hesitant to go. Misinformation, fear, and other reservations are easily cleared by nurses, who know to engage with families around the idea of camp, and to explain its benefits for the child with cancer, siblings, and parents. In addition, nurses need to remember, in their efforts to promote camp, that it will not be a fit for all children and families and one size does not fit all. Important in this is that families do not feel pressured or guilty in their choices of not attending.
Implications for Future Research Be it in outdoor education, adventure programming, or children’s cancer camps, the existing research is predominantly from the quantitative paradigm. Constructs such as self-concept, support, and psychosocial impact will
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always lend themselves well to psychometric measurements and undoubtedly will continue to be the foci of future quantitative researchers. Interestingly though, much of the literature reviewed spoke to the limitations of these measures—how “something was missing,” or at the very least, inadequately capturing the data. In some of the articles, the tone of the discussion or conclusion sections had an element of frustration to it—as if the researchers knew there was more there but were limited by way of method. There is much to be learned from children’s cancer camps, starting with the most fundamental of concepts: How might we understand the meaning of children’s cancer camps for children and their families? I believe what is missing from the current literature is the voice of the children and their families. What do they think? What do they have to say? What can they teach us? There is richness and complexity in the experience of cancer camps that has not, as yet, been captured by the existing research. There is, as Hattie et al. (1997) suggested, an “intangibleness” to camps that may lend well to qualitative research approaches. This complexity is difficult to access by quantitative means alone and, to the best of my knowledge, this is the first hermeneutic study related to children’s cancer camps. Hermeneutic inquiry is well situated to make sense of some of the particulars and complexities of children’s cancer camps. While quantitative approaches are useful in many instances, any single approach to understanding is limited, and many authors have argued that qualitative research can provide answers to questions that no quantitative approach could address (Koch, 1996; Moules, 2002; Smits, 1997). While this study was not intended to be homogeneous with respect to participant recruitment, it is recognized that there could be significant value in understanding the particulars of different homogeneous groups (e.g., bereaved families who still attend camp, newly diagnosed families, etc.). In addition, for those families who choose not to send their child to camp, there would be benefit in understanding why, so that potential alternative resources might be in place for them that would better suit their needs. Understanding the meaning of cancer camps for the child with cancer and his or her family can help health care professionals and philanthropic organizations that fund cancer camps refine and improve programs and services offered to these families, thereby improving the quality of care they receive. In addition, good-quality research can be utilized by these organizations to further legitimize camp experience as not only a “feel good” experience but also as one that offers significant benefits to children and families. Pediatric oncology programs may target cancer camps as an intervention used to improve psychosocial health and outcomes versus simply an enjoyable experience for the child.
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Concluding Thoughts “What is it about community that heals us? Is it reflection, channeling, the very normalization of trauma? Or is it, in fact, solidarity?” (Kepler, 2011, p. 260). Kepler’s (2011) quote, though from a book a fiction, offers insight into what I believe to be at the heart of the sensus communis of this community of families—solidarity. “Solidarity” comes from the French solidarité, meaning “mutual responsibility” (Solidarity, n.d.). These families feel a mutual responsibility for one another. Their adversity bonds them in solidarity to care for one another and for each other’s children, as well as their own. They realize they cannot do this alone, and the unity of this community—the mutual responsibility or solidarity they enter into once they become a part of it—makes them realize they do not have to do this alone. How camp figures in this, I believe, is by acting as the catalyst for this to happen. Parents described “feeling alone” and “living in a bubble” until they came to camp and became aware of the community to which they now belonged. The act of coming together at camp helps families to understand how they fit into the bigger picture. It is this mutual responsibility that contributes to what Kepler was referring to in the healing power of community. Knowing that this kind of a community is there is actually a relief . . . they care and everybody out there really, really cares. And they feel it—you feel like you’re part of the big family. (Parent)
There are unique elements that contribute to the sensus communis in these families, and no doubt other hermeneutic researchers would interpret it differently or offer alternate perspectives. Hermeneutics is, after all, the answer to a question that could have been answered differently (Gadamer, 1960/1989). However, I believe safety and control and recognition of the Other to be some of the most unique, representative elements of what contributes to the “common” sense of this community. Acknowledgment The first author wishes to acknowledge the Alberta Children’s Hospital Foundation for funding her doctoral research and to thank her doctoral supervisor Dr. Nancy Moules and supervisory committee, Drs. Andrew Estefan and Deborah McLeod.
Declaration of Conflicting Interests The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Funding The author(s) declared receipt of the following financial support for the research, authorship, and/or publication of this article: This research was funded by the Alberta Children’s Hospital Foundation.
Note 1.
All names used in this manuscript are pseudonyms.
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Author Biographies Catherine M. Laing, RN, PhD, is an assistant professor in the Faculty of Nursing at the University of Calgary, Canada. Her clinical background and research interests are in the field of pediatric oncology. Recent publications include “The Island of Misfit Toys” in Journal of Applied Hermeneutics (2013, with N. J. Moules), “In play, at Play” in Journal of Applied Hermeneutics (2012), and “Odds Ratios and Confidence Intervals: A Review for the Pediatric Oncology Clinician” in Journal of Pediatric Oncology Nursing (2011, with J. Rankin).
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Nancy J. Moules, RN, PhD, is a professor in the Faculty of Nursing at the University of Calgary, Canada, and holds the Alberta Children’s Hospital Foundation/Research Institute Professorship in Child and Family Centred Cancer Care. Her clinical and research interests are in pediatric psychosocial oncology and Family Systems Nursing. Recent publications include “Isn’t All of Oncology Hermeneutic?” in Journal of Applied Hermeneutics (2013, with D. W. Jardine, G. P. McCaffrey, & C. B. Brown), “Grandparents’ Experiences of Childhood Cancer, Part One: Doubled and Silenced” in Journal of Pediatric Oncology Nursing (2012, with C. M. Laing, G. McCaffrey, D. M. Tapp, & D. Strother), and “Grandparents’ Experiences of Childhood Cancer, Part Two: The Need for Support” in Journal of Pediatric Oncology Nursing (2012, with G. McCaffrey, C. M. Laing, D. M. Tapp, & D. Strother).
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