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Families, Systems, & Health 2009, Vol. 27, No.

3, 213227

2009 American Psychological Association 1091-7527/09/$12.00 DOI: 10.1037/a0017005

Family Routines and Rituals When a Parent Has Cancer


A growing literature has drawn attention to the psychosocial impact of cancer on families with young children. However, to help families develop adaptive responses to chronic illness, recent scholarship has begun to advocate a shift in orientation from a decit to a strengths perspective. In this article, the authors examine the reorganization of family life after cancer diagnosis by reporting ndings from a qualitative study of families with young children (ages 29) dealing with a parents cancer. The authors focus specically on parents self-reports of how their families developed and experienced new routines and rituals while one parent underwent cancer treatment. Despite signicant upheaval in family life, the families in this study found ways to stabilize routines and maintain a sense of normalcy. Although cancer compels disruptions to existing routines and rituals, families demonstrated creative resilience in their capacity to incorporate cancer care into

the formation of new family traditions, habits, and practices. By considering how families manage cancer as a joint endeavor, the authors hope to illuminate the ways in which cancer can bring families together as well as pull them apart. Keywords: parental cancer, children, routines, rituals, family functioning

Mara Buchbinder, MA, Department of Anthropology, University of California, Los Angeles; Jeffrey Longhofer, PhD, MSW, School of Social Work, Rutgers University, The State University of New Jersey; Kathleen McCue, MA, LSW, CCLS, The Gathering Place, Cleveland OH. We thank the eight families who participated in this research for sharing their wisdom, experiences, and insights with us. Correspondence concerning this article should be addressed to Mara Buchbinder, UCLA Department of Anthropology, 375 Portola Plaza 341 Haines Hall, Box 951533, Los Angeles, CA 90095-1553. E-mail: mbuch@

n recent years, a growing body of literature has drawn attention to the impact of cancer on families with young children (Baider, Cooper, & Kaplan De-Nour, 2001; Lewis, 2007; Rauch & Muriel, 2004; Schmitt, Santalahti, Saarelainen, Savonlahti, Romer, & Piha, 2008; Su & RyanWenger, 2008; Visser et al., 2005). Children of cancer patients must contend with the disruption of family roles and routines, the temporary loss of the ill parent due to disease symptoms and side effects of treatment, and the threat of permanent loss (Welch, Wadsworth, & Compas, 1996). According to one meta-analysis, although early stage parental cancer does not pose a risk for serious psychosocial difculties, children of cancer patients have an elevated incidence of internalizing behaviors (Osborn, 2007). Most studies suggest that child functioning is related to family stress and psychosocial variables rather than specic disease characteristics such as prognosis




(Armistead, Klein, & Forehand, 1995; Compas et al., 1994; Osborn, 2007). For example, maternal depression is associated with poorer child outcomes (Schmitt et al., 2008). Changes in parenting practices such as decreased emotional availability, supervision, and poor communication may explain these effects (Faulkner & Davey, 2002). Although this literature has advanced clinical understandings in critical ways, it has tended to emphasize individual pathology and dysfunction rather than broader family processes (but see Davey, Askew, & Godette [2003] and Kayser, Watson, & Andrade [2007]). To help families develop adaptive responses to chronic illness, recent scholarship has begun to advocate a shift in orientation from a decit to a strengths perspective. Several studies have encouraged investigations of how families develop routines to manage childrens special health care needs (Clark, 2003; Gallimore, Bernheimer, & Weisner, 1999). Routines form an important part of the developmental life course (Fiese, 2007), and regular, stable routines have a crucial impact on developmental outcomes (Keltner, 1992; Malenfant, 2006; Resnick et al., 1997; Seymour, Brock, During, & Poole, 1989; Sytsma, Kelley, & Wymer, 2001). Bluebond-Langner (1996) argued that it is important to examine the transitions and changes that families undergo in response to chronic illness. Focusing on family life, routines, future plans, and priorities, she described how families maintain a sense of normalcy despite a childs cystic brosis. Close examination of such familial processes is needed to fully understand the impact of a parents cancer on families with young children. When a parent has cancer, roles and routines are disrupted to accommodate illness management for the ill parent and caregiving responsibilities for the well parent (Thastum, Johansen, Gubba, Olesen, & Romer, 2008). Chronic illnesses such as cancer thus require families to reprioritize their time and commitments

and reorganize family life (Reiss, Steinglass, & Howe, 1993; Robinson, Carroll, & Watson, 2005). By focusing on such changes in family life instead of psychosocial dysfunction, researchers may help families to prevent difculties rather than just respond to them. In this article, we examine the reorganization of family life after cancer diagnosis by reporting our ndings from a qualitative study of families with young children (ages 29) dealing with a parents cancer. We focus specically on parents selfreports of how their families developed and experienced new routines and rituals while one parent underwent cancer treatment. By considering how families manage cancer as a joint, everyday endeavor, we hope to illuminate the ways in which cancer can bring families together as well as pull them apart (Davey et al., 2003; Robinson et al., 2005; Weihs & Reiss, 2001). BACKGROUND A routine is a habitual series of patterned behaviors or interactions, such as a childs bedtime procedure. Rituals involve more formal celebrations, religious observances, and other events rich in symbolic meaning, such as holidays, bar mitzvahs, and weddings. Fiese, Tomcho, Douglas, Josephs, Poltrock, and Baker (2002) suggested that routines and rituals may be distinguished along the domains of communication, commitment, and continuity. Rituals foster symbolic communication, whereas routines primarily involve instrumental communication oriented toward accomplishing the mundane tasks of everyday life. Likewise, routines demand only a momentary time commitment and are repeated over time within a family or group, whereas rituals evoke a deep affective commitment and maintain continuity on a broader temporal scale. Because a routine may become a ritual when it shifts from being an instrumental to a symbolic act, certain activities such as family dinners are sometimes placed in both categories.



Rituals, Routines, and Family Life Anthropologists have had a long-standing interest in how rituals foster a sense of community, belonging, and shared identity among members of a cultural group (cf. Turner, 1967). Almost 60 years ago, Bossard and Boll (1950) conducted the rst comprehensive study of rituals in American family life. Their work highlighted the ways in which rituals organize family life and protect it in times of stress. By instructing young people about how their family or society functions, rituals also provide an important vehicle for the transmission of family values across generations and thus help to maintain continuity in family practices over time. Family systems theory suggests that a signicant disruption to an individuals daily routine will inuence the whole family ecology (Patterson & Garwick, 1994). Changes in family routines and rituals are one of the rst places in which signs of stress and disruption appear (Steinglass, Bennett, Wolin, & Reiss, 1987), and routines and rituals are thus particularly signicant during times of transition (Wolin & Bennett, 1984). For example, maintaining routines in divorced families may instill a sense of security and stability in children (Guidubaldi, Clemenshaw, Perry, Nastasi, & Lightel, 1986). From a methodological perspective, rituals and routines are of particular interest to family systems theorists because the empirical focus is on the whole family process as opposed to subsystems within the family. Close examination of routines can illuminate the transactional pathways by which family life affects individual adaptation and, conversely, how the individual affects family functioning writ large (Fiese et al., 2002; Sameroff & Fiese, 2000). Chronic Illness and Family Routines and Rituals By fostering structure and planning, routines and rituals can enhance family health and well-being and play a protective

role in both the prevention of and adaptation to chronic illness (Denham, 2003; Fiese, 2007; Fiese & Wamboldt, 2000; Markson & Fiese, 2000). Disruptions in family routines and rituals mediate the relationship between family history of alcoholism and problem drinking in adult children of alcoholics (Hawkins, 1997; Steinglass et al., 1987). Routines can also protect against symptoms of anxiety in children diagnosed with asthma (Markson & Fiese, 2000). For families of autistic children, the implementation of highly structured routines surrounding eating, bathing, and bedtime both facilitate the familys adjustment to the diagnosis and minimize the childs anxiety and disruptive behavior (Larson, 2006). Similarly, stabilizing household routines and engaging children in planning can help protect children against the impact of a parents cancer (Lewis et al., 2001). Because chronic illness care mandates regular patterned behavior, family routines play an integral role in treatment. When someone is diagnosed with Type 2 diabetes, the familys eating and shopping habits must change to accommodate new dietary recommendations (Denham, Manoogian, & Schuster, 2007). Similarly, to manage childhood asthma, parents must incorporate regular vacuuming and dusting into household cleaning (Fiese & Wamboldt, 2000). Compliance with prescribed regimens for chronic illness management thus hinges upon the patients ability to t basic tasks into family routines. METHOD Qualitative interviews were conducted with 8 adults as the rst phase of a study investigating the therapeutic functions of spontaneous free play for children dealing with a parents cancer. Families were recruited from a community-based cancer wellness center in a large midwestern U.S. city that offers psychosocial services such as individual counseling, support groups,



and social activities to individuals dealing with cancer and their families. Potential participants were notied about the study through an informational letter mailed to all families in the centers database who fullled the eligibility criteria, which included having one parent in active cancer treatment and at least one child between the ages of 4 and 6. A convenience sample of 10 children from eight different families (2 sibling pairs) participated in one of four videotaped, hour-long play sessions in a therapeutic playroom. Each session included 2 or 3 children of similar ages. Before their childrens participation, one parent from each family was interviewed about their familys experience with cancer. This article draws on the parent interview data. The study was approved by the institutional review board of a major midwestern university, and informed consent for both parent interviews and childrens play sessions was obtained. Interview respondents included 7 mothers and 1 father (see Table 1). Five mothers and 1 father were in cancer treatment themselves, and 2 mothers were spouses of cancer patients. The ages of interview participants ranged from 34 to 47 years old. Each family had between one and three children, ranging in age from 2 to 9 years old. The median childs age was 6 years old. Six respondents were European American, 1 was African American, and 1 was Pakistani. Of the European American participants, 1 had adopted two daughters from
Table 1 Interview Participants Respondent Brett (Father) Nancy (Mother) Tina (Mother) Laurel (Mother) Rana (Mother) Harriet (Mother) Kelly (Mother) Jean (Mother)
1 1

China. One participant was a single mother; the rest were married. The sample represented a range of cancer diagnoses, including breast and ovarian cancers, gleoblastoma, leukemia, and melanoma. Time since diagnosis ranged from 2 to 29 months, with an average of 12.1 months. Interviews were semistructured and included questions about the cancer diagnosis and treatment, how cancer has affected the familys daily life, family communication about cancer, and childrens knowledge and feelings about cancer. Interviews were conducted by Mara Buchbinder, either in the participants home or at the cancer wellness center. Each interview was audiotaped and lasted between 45 min and 1 hr. One participant, Jean, did not consent to be audiotaped. Instead, extensive eld notes were recorded after her interview. After data collection, interviews were transcribed and coded by Mara Buchbinder using Atlas.ti qualitative data analysis software. A grounded theory approach was used to identify relevant themes (Strauss & Corbin, 1990). Thematic coding was undertaken in two stages, with techniques identied by Ryan and Bernard (2003). First, open coding was used to generate new themes relating to cancer and the family. Once the identication of new codes reached saturation point, focused coding was performed to rene coding categories into hierarchical groups or families. Through this process, family rituals and routines emerged as a key theme in the

Diagnosis Gleoblastoma (Father) Ovarian cancer (Mother) Leukemia (Father) Breast cancer (Mother) Breast cancer (Mother) Breast cancer (Mother) Melanoma (Father) Breast cancer (Mother)

Time since diagnosis 2 years, 1 month 9 months 6 months 6 months 2 years, 5 months 1 year, 2 months 2 months 6 months

Children Son age 2; daughter age 5 Daughters ages 6 and 7 Daughters ages 4, 6, and 7 Daughter age 4; son age 6 Son age 6; daughter age 9 Son age 6; daughter age 8 Daughter age 4 Daughters ages 6 and 7

All names are pseudonyms.



data, inspiring the focus of this article. In what follows, we describe two complementary processes: how cancer produces an initial reorganization of existing family routines and rituals, and how, in turn, cancer treatment is incorporated into daily life, generating new routines and rituals that highlight the capacity of families to respond to stressors and strains in creative ways. FINDINGS Summary of Findings In reecting on their families initial adjustment to life with cancer, parents focused on disruptions to caregiving routines and changes in family rituals such as holidays and birthday parties. To maintain a sense of normalcy within the household, parents strove to maintain an active presence during key moments, such as dinner or bedtime. In some cases, changes in work routines afforded parents new opportunities for connecting with children and bringing the family closer together. Moreover, parents pursued specic normalization strategies by allocating specic cancer care tasks to children, such as wheeling a parent in the hospital, taking a parents temperature, or positioning bandages. By involving children in medical care in this way, parents were able to mitigate childrens fears of medical technology. Other families assuaged childrens concerns by establishing routines for sharing information within the family and setting specic times for children to ask questions about cancer treatment. Finally, parents described coping rituals for expressing emotions, such as evening prayers, and family celebrations for marking key treatment milestones with symbolic meaning. Shifting Family Routines and Rituals Initial Disruptions All of the respondents noted that their daily routines had been signicantly altered since the onset of cancer. For some,

changes to family routines prompted a difcult transition period, as parents and children struggled to adjust to new schedules and activities. Tina indicated that the rst month after Bobs diagnosis was most difcult for her 9-year-old daughter, Carolyn, because she does not tend to respond well to change. Bobs November diagnosis came at a particularly inopportune time, just before the holiday season and Carolyns birthday. Tina highlighted the negative impact of this disruption to family rituals focusing on Carolyn: She was sad, she was angry, she was frustrated, things werent normal, things were, um, and this all happened in November so it was also kind of coming into the holidays. And it was also her Dads birthday, so, you know, she was the only one at school who wasnt going to have a normal Thanksgiving. And, you know, her birthdays in December too. So, my birthdays gonna be ruined and Christmas is gonna be ruined. And everything you know, the kids like things to be the same. Because of her fathers illness, Carolyn was not permitted to have a sleepover party for her birthday. Tina explained, I mean the kids are just little petri dishes, we call them. Likewise, although Bob was home for Christmas, the family could not travel to see family in a nearby city as they typically did. After his diagnosis, Bob did not come home from the hospital for over a month. Tina estimated that he had been hospitalized 80 90 days over the 6 months since his diagnosis and spent many more long days there for clinical appointments and treatments. During this time, Tinas mother, who lived several hours away, offered invaluable help with childcare for Tina and Bobs 4-, 6-, and 9-year-old daughters. Tinas long hours at the hospital forced her daughters to adjust to new caregiving arrangements and a new role for their grandmother. Tina said:



Um, and my 9-year-old, one of the funniest things I think she said, she told my mother, and she wasnt being nasty about it, she was just having a conversation, she said, You know Nanny, youre a lot more fun when you just come for a few days. For other families in the study, the ill parents role in family life also changed substantially. Before he was diagnosed with cancer, Kellys husband, a truck driver, worked long hours away from home. Kelly, a stay-at-home mom, said that her husbands increased presence at home altered the dynamic between she and her 4-year-old daughter. She explained: Like he was home anywhere between 9 and 10 at night, he left at 4:30 in the morning, her [sic] and I had all day to do whatever we wanted. And now hes home everyday. And that affects everyone, because you no longer have the freedom you had before. You have to worry about one more person constantly. Itsit changes everything. For others, cancer rendered the ill parent noticeably absent from family routines. Laurel, a woman with breast cancer, lamented that there were days I couldnt even get out of bed, and, you know, I couldnt do the normal things that a moms supposed to do. For example, she said: You know theres many days that my husband would just take the children and, you know, go to the museum or something, just the three of them, because I couldnt do it myself, I couldnt go with them, which would have been our natural, for all of us to go together, but I couldnt go. Nancy described a different sort of problem after her diagnosis with ovarian cancer. She indicated that one of the most difcult adjustments for her 7-year-old daughter was that Nancy had less time available because of increasing telephone obligations. She explained:

And then the other thing she had tension about was the phone. Cause I was on the phone a lot. Im from a family of six, I mean youreyoure constantly getting calls and constantly on the phone, and that would take away, I mean, I had to plan, I had to block in time. Three of the 4 participants with preschool-aged children indicated that the disruptions to family routines had the biggest impact on the children who were not in school full time, becaue they were shufed around to different friends and relatives quite a bit more than they had been accustomed. Both Tina and Kelly thought that their 4-year-old daughters had a more difcult time dealing with their mothers increased absences than with their fathers being sick. Kelly explained: We werewe were gone everyday, 5 days a week, wed be gone for 2, 3 hours a day, and she was being bounced from place to placewoken up early, taken here, taken there. Then wed go and pick her up . . . And she did not like that. It became a struggle to get her to go. To get her to go somewhere other than with me. And, she did it reluctantly, but there had to be a bribe involved. Whether it was Taco Bell, or, there had to be a bribe. It is important to note that, although Kellys report suggests that her daughter experienced more severe behavioral and emotional disturbances than other children in the study, with only 2 months since her fathers diagnosis, she had also had the shortest adjustment period. Stabilizing Forces Despite signicant upheaval in family life, the families in this study found ways to stabilize family routines and maintain a sense of normalcy. After long hours at the hospital, Tina discovered how important it was to her children that she return home by their bedtime. She said:



But I always tried to get home by bedtime so I could see them, because that was my big thing. I was torn between the kids and him. But then I realized how important it was to them, cause wed always use bedtime and then morning time to, um, to talk and ask questions, and so, I stayed the rst few nights, the rst 4 nights, but then after that I very rarely spent the night again, because the kids needed me at home. Rana made a similar effort to come to the dinner table and eat with her family during her chemotherapy, even when she was tired. She said: And I would come back from the chemotherapy, and I would go off to bed, and I would sleep, Id say Mommy needs to sleep, and I would wake up, and I would eat dinner with everybody, but I would be tired. Support from family and friends was critical to maintaining established routines. Tinas mother had put her life on hold to stay with the family almost all of the 6 months since Bobs diagnosis, and the ParentTeacher Association at her childrens school had delivered meals to the family 3 days/week throughout. Rana was grateful for a full-time babysitter and visiting family members, who helped to keep her children on their normal schedules. Brett reported that his family received assistance with yard work, home-cooked meals, and 18 different volunteer drivers for 35 days of radiation. Similarly, Nancy said: My chemo is very predictable, it was 3 weeks apart, I had one, you know, one bad week of not feeling well, and then 2 decent weeks, then 1 bad week, 2 decent weeks. So it was very predictable. And, um, so we were able to get help in the form of their favorite aunts, and their grandma, so things like that.

Harriet, a single mother, had help from a close out-of-town friend after each of four breast cancer surgeries. She explained: And she ran my day care, she took care of my children, she took care of me, and she left, and she went back home, and when I went through my second surgery, she came each time. She was, like, I just, thats just something that I want to do, because you always make sure that everybody else is okay, so please let me do this. She wouldnt take any money or anything like that. As these comments suggest, cancer support for these parents stretched beyond purely medical tasks to encompass the preservation of family responsibilities and activities, particularly those involving the children. By helping with routine tasks, family and friends ensured that the mundane aspects of family life continued to operate relatively smoothly. Tina articulated several innovative ways in which her family was able to compensate for changes to their routines and rituals. For example, because her children had been deprived of play dates for many months, Tina planned to have a big picnic in the summer, once Bob felt better, and to invite all of her daughters friends. Likewise, the school art teacher had devised a special project for the girls to commemorate their fathers birthday. Tina said: Ive been really blessed with, I mean, these great school and teachers, and they just are really aware. Like the art teacher bought hats cause they were telling her how he was bald, and so she bought hats, baseball hats, just plain white ones, and let the girls during indoor recess, one day, brought them at recess to the art room and she bought fabric paint and let them paint hats for their dad. Right before his birthday, cause they had told her that he didnt have hair and it was his birthday.



These examples reveal the ways in which the family managed to preserve a sense of continuity despite changes in daily life. Planning a picnic enabled the girls to recreate a sense of community and belonging among friends that had been temporarily put on hold, and the hat-decorating activity was imbued with an affective valence that allowed them to express loving feelings for their father on his birthday, despite a drastic change in celebratory mode. Positive Changes According to several respondents, children enjoyed some unforeseen benets of the ood of support that follows cancer diagnosis. Tina said: You know, a lot especially people who bring meals, and theyll bring like a little treat bag with sidewalk chalk in it. Um, you know, and thats special that other people arent getting. So sometimes it makes em feel special, which is kind of weird, but [laughs] it does. You know, people are, theyre kind of like little celebrities because all this is going on sometimes, so sometimes it makes them feel special. However, the recognition of such positive moments was not without qualication. As Tina acknowledged, And other times theyre just kind of angry about the whole thing because they cant have friends over, they cant, um, have a sleepover party. Laurel commented on several unexpected positive outcomes of her cancer diagnosis. She looked back warmly on having lots of people ltering through the house to bring food and other gifts during her chemotherapy. She also became motivated to change her familys diet and eating habits, which she viewed as a positive change. Most important, she said that her cancer had fostered family unity and a positive attitude toward family life. She explained:

I think in a lot of ways it really brought the whole family closer together, because one its taught us all that you live for today not for tomorrow. And that, you know, its not so important to get all the dust balls out from underneath the couch as it is to sit down and do something. Nancy, an attorney, spoke at length about how her 6- and 7-year-old daughters reacted to changes in her work schedule at various points along her illness trajectory. Although Nancy had worked 60 70 hr/ week before her diagnosis, she only worked part time while receiving chemotherapy for her ovarian cancer. This shift enabled Nancy to spend more time in her daughters classrooms at school, something she had not been able to do previously. She said: So, when I was feeling well enough, Id be, every chance I could, Id go to their classes, and I couldnt get in, wasnt allowed into Sarahs yet, cause shes just in kindergarten and the teacher wasnt allowing parents in yet, so I always got to go to Caryns class, and she just loved it, you know, and that was a wonderful special time for us. At the time of our interview, Nancy was nishing her chemotherapy and transitioning back to a full-time work schedule. Reecting on her daughters adjustment back to the old routine, Nancy said: Um, and ah, you know they do miss, I mean they do say that they miss me being at the school, but they knew I was gonna be going back. And Sarah has said to me, Mom, I think its best if you work 3 days a week. Post-cancer, Nancy said that she hoped to institute some subtle changes to her fulltime work schedule, such as returning home in time to have dinner with her family, and spending time in her daughters classrooms.



Cancer had also prompted a change in Nancys attitude about her work and her ability to put work aside when she was with her family. She explained: And Im also more relaxed with the kids, I mean, you know, I was, with that much work, I was always very tense, always feeling like, um, you had to get a million things done, you know, in the 15 minutes you had with them. Now I can be a little more relaxed. I dont focus on work, and its not always on my head. Thats one big thing when I was on medical leave, I never thought Id be able to do, but I didnt look at e-mail literally til, like November, August to November, and then I was able to tell them, when I come back, Im only gonna do these two little things, cause I dont know how much energy Ill have. Nancy thus framed her improved ability to fully engage in family life as a benet of her cancer experience. This example illustrates how disruption to established family routines may be seen to have positive as well as negative meanings. Developing New Routines and Rituals Surrounding Cancer Care Hospitalizations and Treatment Over time, cancer management and treatment became incorporated into established family routines. Although Tinas children were not usually permitted to visit their father during his long hospital stays because of the high risk of infection, Nancy indicated that her children loved visiting her in the hospital after her surgery. She said: And then they were, ah, down at the hospital, I was in the hospital three or four days, and they came probably the second and third days and, um, just loved it, you know, got a kick out of seeing everything coming out, out of their mom, they didnt seem nervous about it. You know, the hospital had an

ice cream social one night, and they wheeled me down to that, so it just became kind of a normal part of things. Many children of study participants accompanied their parents to outpatient medical visits in the hospital. Brett reported that his 2-year-old son and 5-yearold daughter attended half of his appointments. He explained: And being stuck in the hospital for different times, if and when that ever gets to that point, I want [my children] to know that this is where Daddys being taken care of, and not this is where bad things are happening to Daddy. Harriet regularly brought her 8-year-old daughter, 6-year-old son, and a niece to her appointments. She said: And those three were, like, right there asking all the questions, and the doctor was looking at them like, Should I answer that? I said, Dont hold back. Just talk like you were talking as if an adult was in the room. You know. Laurel reported that her 6-year-old son had such a strong desire to watch her chemotherapy treatment that she and her husband decided to take him out of school early to observe her last session. She reected on the session as follows: Well, he was very curious in general, so he asked a lot of questions, and, um, the nurses there are fabulous so the one nurse that usually takes care of me just did everything, answered everything, let him sort of explore in a safe manner the area, um he, you know, let him do some noninjuring things. Um, you know, let him take my temperature in my ear for me, and um, like that kind of stuff, that was just to let him feel a part of it. By exposing their children to routine medical procedures, parents were thus able



to normalize their cancer experience and assuage their fears. Caregiving in the Home For many families, there were ample opportunities to involve children in medical care that took place in the home. Harriet framed her attempts to involve her children in her cancer management and delegate small tasks to them as a normalizing strategy. She explained: Because I put a lot of energy into trying to keep things normal. Maintaining normalcy at home, um, and because they were able to, to interact with me with the treatment, with the helping me to change the bandages, with the cleaning. Similarly, Kelly suggested that assigning her daughter a caregiving role helped her to feel less powerless against her fathers cancer. Kelly explained: Um, when he gives them, the day we went down and had to learn how to give him his shots, um, she went with us. And shell put the alcohol on, and shell put the Band-Aids on. So we want her [to be] a part of it so that she knows its not that bad. And that helps, you know, shes, then she feels like shes helping and shes not feeling helpless. Tina kept her husbands medical supplies in a box in the dining room so that her daughters would be familiar with them, and they often watched their mother administer injections and other treatments. Tina explained, Theyre not scared of any of that, we let them watch it. Sometimes such involvement in routine medical care melded into childrens fantasy worlds, as for Jean, whose daughters gave her pretend check-ups on a regular basis. Several respondents with cancer spoke of their children as important sources of warmth and affection during their cancer treatment. For example, Brett said that kisses from his 5-year-old daughter made

me feel 10 times better about what I am forced to go through. He elaborated on a particular caregiving ritual in which his daughter kissed his scars: Um, so when I would feel yucky and Id be stuck in bed for so long, um, cause although Id be awake, Id be in bed, because Id be awake and Id watch TV, and shed come and cuddle me, she would come, and she still does it all the time, give me kisses where my screws were in my head when they put my head back together. And often shes like, now again, where were your stitches and where were your, um, staples, and she just comes up and gives me kisses all the time. Similarly, Nancy shared a story about how her mother tried to keep her daughters out of her bedroom after her rst chemotherapy treatment but how Nancy herself found them to be an important source of emotional support. She explained: There is a story about my mom was there for the rst chemo and she put a sign on my door saying Do not disturb cause shes trying to protect me cause they kept coming in. And I told her, It doesnt matter if theyre in here. And my oldest Caryn is like, I dont even know what disturb means. [Laughter] And they were just coming to cuddle with me and things like that. So it was really special times. Sentiments such as these suggest not only that it is productive to involve children in cancer management for the childs own benet but also that children themselves, through caregiving rituals, can promote positive meanings and healing moments that are of great benet to the parent with cancer. The capacity of children to foster therapeutic benets through affective involvement in parents care is a reection of the crucial role that children play in a parents life and the ability of children to afrm a parents sense of pur-



pose in the face of serious illness. In this context, routine acts such as swabbing the skin with alcohol in preparation for an injection or kissing a parents scars are laden with symbolic meaning and embody the affective ties that bind the intergenerational experience of cancer. Sharing Knowledge and Information Both Tina and Harriet established important routines for sharing information about cancer with their children and encouraging them to ask questions. Tina explained: In the mornings before school they would get in bed with me and ask me all of their questions, or my 6-year-old would ask me a lot of times at night before she went to bed, she had a lot of questions. Just about how he was feeling and um, you know, I mean he, he didnt eat a lot, he lost weight, he lost his hair, so they had questions about that, and his hair was gonna come back and, um, you know was he always gonna throw up, or was he gonna stop throwing up, you know, just things like that. But you know, I, as they got more information, I think, especially my 9-year-old, as she got more information she wanted more information, and so I would just keep giving it to her. In this way, regular discussions about Dads progress became inculcated into the familys morning routine. Tina mused, Wed be having these in-depth discussions about leukemia and death and all kinds of stuff at 6 in the morning. Despite the absurdity, Tina thought that doing that actually helped in a way because theyd go off to school with peace of mind. Harriet developed a similar family routine by creating a comfortable space for her children to ask questions. She said, Sometimes I would read with them. Thats one thing that we always do as a family, is read. And I would be reading about the cancer, for my own knowledge, and they

would sit there and ask me questions. The family reading activity thus became an important time for Harriets children to ask questions about cancer. Coping Rituals Families also developed meaningful rituals for coping with cancer in the family. Laurel noted that her children worked their hopes for her recovery into their regular evening prayers. She said: You know and every night we say our prayers and we pray for, you know, and they always put in, and pray for Mommy, you know, so she doesnt have cancer anymore, and whatever. And, so you know, its always out there. Other families found ritualized ways of dealing with negative emotions. Jean reported that her 6- and 7-year-old daughters had signicant fear of abandonment, which she linked to their adoptive status. According to Jean, because they were both adopted from China, they wondered who would take care of them if something happened to their mother, despite the fact that Jean was married to their father. The younger daughter, in particular, would often get angry with Jean. At the suggestion of a social worker, Jean bought a canvas punching bag and wrote I hate breast cancer on it in a marker. Jean believed that the punching bag enabled the girls to express their feelings about cancer in ways that their language might not otherwise convey. Cancer Milestones Several respondents indicated that their families chose to demarcate concrete milestones in their cancer journeys with family celebrations. At the end of her chemotherapy, Nancy said: We celebrated as a family, we did a couple things to celebrate the end, thanked them for their great work, you know, going through it, that type of



thing. I dont know, it just seemed like a whole family process. Laurel and Jean shared particularly creative strategies. At the time of our interview, Laurel had recently nished her chemotherapy. Although she would still need radiation therapy, her family had celebrated the end of this phase of her treatment with a long-standing family ritual. She said: We have a special plate in the house that, on special days, if something special happens to you, you get to eat off of it. I got to eat off of that plate that day, and we sort of celebrated the fact that I was done with the treatments. Laurel framed her motivations for this ritual in terms of her childrens ability to grasp the symbolic meanings associated with such a celebration and to understand that her health was moving in a positive direction. She explained: And because I wanted to close the book for them, at least for now . . . in that, you know, that thats all behind me and that I should be starting to feel better and I wont be as tired and I wont be as, you know, my hair will start, we talked about how my hair is gonna grow back and how um, you know, the summers gonna be great because Mommys gonna feel better. So hopefully all those things will have, you know, be planted in their head and turn it around for them. You know, that things are on the up. When Jean reached the halfway mark for her chemotherapy treatment, she and her husband brought home half of a cake for the family to eat. They planned to celebrate with a whole cake when she nished her treatments completely. Jean suggested that her daughters liked this ritual very much because it was concrete enough for them to grasp its symbolic meaning. These simple dinnertime rituals conveyed rich in-

formation to the children involved in a developmentally appropriate manner while facilitating a sense of linear progression through cancer treatment by commemorating stepwise accomplishments along the path to recovery. DISCUSSION Despite signicant upheaval in family life, the families in this study, to various extents, found ways to stabilize family routines and maintain a sense of normalcy. The purpose of this article was not to evaluate how effectively individual families adapted to life with cancer but rather to elucidate some of the generative routines and rituals through which such adaptation was accomplished. Consistent with our family systems approach, we have suggested that the family cancer journey involves a series of adjustments to everyday routines that affect both individual family members and global family functioning. Although cancer compels disruptions to existing routines and rituals, participants demonstrated creative resilience in their capacity to incorporate cancer care into the formation of new family traditions, habits, and practices. As a unifying family experience, cancer treatment is rife with opportunities for developing shared activities and symbolic meanings that may yield both positive and negative consequences. By suggesting that cancer may have positive implications for family life, we do not mean to minimize the atrocity of cancer or the great deal of suffering that families endure when a loved one has cancer. Nevertheless, we believe it is important to understand not only how cancer impairs family functioning, but also how families persevere despite adversity. This study has several limitations that bear mentioning. First, although the notion of a cancer journey underscores the importance of the temporal trajectory of the familys cancer experience, the small, exploratory nature of this study precludes us from attending to the develop-



mental and temporal aspects of family routines. We recognize that certain families, such as Kellys, may not have had time to develop meaningful routines and rituals, whereas other families, such as Bretts, had dealt with cancer for a longer period of time. In future research, it will be important to consider the natural history of family routines and rituals from a longitudinal perspective. Second, because participants were recruited from a sample of families seeking psychosocial support services at an integrative cancer wellness center, the families in this study likely had more therapeutic resources available than other families dealing with cancer and, as a result, may have been better adjusted. In addition, families who have not established adaptive routines and rituals to deal with cancer may be less likely to participate in research studies (Fiese et al., 2002). Therefore, our ndings cannot be generalized to a larger population. Nevertheless, from a clinical perspective, there is much to be learned from the experiences and strategies of a small number of exemplar cases. As the rst study to date focusing on routines and rituals surrounding cancer in the family, the preliminary ndings from this exploratory study provide an important starting point to guide future research in this area. CLINICAL IMPLICATIONS The ndings from this study offer several useful insights for clinicians working with families affected by cancer. As Clark noted, Ritual is a bulwark of familiarity amid the uncertainty of chronic illness (Clark, 2003, p. 129). When met with new challenges, families must balance the comfort of the familiar with exibility toward new roles and responsibilities. For clinicians, assisting families to develop locally meaningful routines and rituals that respond proactively to changes in family life can be an important rst step to successfully managing stressful transitions (Denham, 2003; Wolin & Bennett, 1984). Like

the child with diabetes who hits his mother every time he receives an insulin shot (Clark, 2003), rituals such as the I hate cancer punching bag provide an outlet for the safe expression of emotion while simultaneously offering emotional support by providing a framework of action (Wolin & Bennett, 1984). Moreover, our ndings suggest the benet of acknowledging a parents progress toward recovery with family celebrations at concrete endpoints. The construction of age-appropriate rituals, such as marking the chemotherapy midpoint with half of a cake, can facilitate childrens symbolic meaning-making endeavors and reward children for their contributions to cancer care. This study also lends support to the notion that involving children in a parents medical care yields important psychosocial benets. Childrens involvement in treatment routines normalizes the cancer experience while providing children with necessary opportunities to ask questions and learn about the disease (Lewis et al., 2001; Sargent, 2003). Although children are often excluded from discussions about treatment and planning (Faulkner & Davey, 2002), family communication about cancer is consistently associated with positive psychosocial functioning in children (Osborn, 2007). Family routines and rituals offer one important vehicle for incorporating cancer-related discussions and decisions into the ongoing rhythm of family life. REFERENCES
Armistead, L., Klein, K., & Forehand, R. (1995). Parental physical illness and child functioning. Clinical Psychology Review, 15, 409 422. Baider, L., Cooper, C., & Kaplan De-Nour, A. (Eds.). (2001). Cancer and the family (2nd ed.). Chichester, United Kingdom: Wiley. Bluebond-Langner, M. (1996). In the shadow of illness: Parents and siblings of the chronically ill child. Princeton, NJ: Princeton University Press. Bossard, J., & Boll, E. (1950). Ritual in family living. Philadelphia: University of Pennsylvania Press.



Clark, C. D. (2003). In sickness and in play: Children coping with chronic illness. Rutgers: Rutgers University Press. Compas, B. E., Worsham, N. L., Epping-Jordan, J. E., Grant, K. E., Mireault, G., Howell, D. C., & Malcarne, V. L. (1994). When Mom or Dad has cancer: Markers of psychological distress in cancer patients, spouses, and children. Health Psychology, 13, 507515. Davey, M., Askew, J., & Godette, K. (2003). Parent and adolescent responses to nonterminal parental cancer: A retrospective multiple-case pilot study. Families, Systems & Health, 21, 245258. Denham, S. (2003). Relationships between family rituals, family routines, and health. Journal of Family Nursing, 9, 305330. Denham, S., Manoogian, M., & Schuster, L. (2007). Managing family support and dietary routines: Type 2 diabetes in rural Appalachian families. Families, Systems, & Health, 25, 36 52. Faulkner, R., & Davey, M. (2002). Children and adolescents of cancer patients: The impact of cancer on the family. The American Journal of Family Therapy, 30, 6372. Fiese, B. (2007). Routines and rituals: Opportunities for participation in family health. OTJR: Occupation, Participation, Health, 27(Suppl), 41S 49S. Fiese, B., & Wamboldt, F. (2000). Family routines, rituals, and asthma management: A proposal for family-based strategies to increase treatment adherence. Family, Systems & Health, 18, 405 418. Fiese, B., Tomcho, T., Douglas, M., Josephs, K., Poltrock, S., & Baker, T. (2002). A review of 50 years of research on naturally occurring family routines and rituals: Cause for celebration? Journal of Family Psychology, 16, 381390. Gallimore, R., Bernheimer, L., & Weisner, T. (1999). Family life is more than managing crisis: Broadening the agenda of research on families adapting to childhood disability. In R. Gallimore, S. Vaughn, D. Speece, D. MacMillian, & L. Bernheimer (Eds.), Developmental perspectives on children with highincidence disabilities (pp. 55 80). Mahwah, NJ: Erlbaum. Guidubaldi, J., Clemenshaw, H., Perry, J., Nastasi, B., & Lightel, J. (1986). The role of selected family environment factors in childrens post-divorce adjustment. Family Relations, 35, 141151. Hawkins, C. (1997). Disruption of family rituals as a mediator of the relationship between

parental drinking and adult adjustment in offspring. Addictive Behaviors, 22, 219 231. Kayser, K., Watson, L., & Andrade, J. (2007). Cancer as a we-disease: Examining the process of coping from a relational perspective. Families, Systems, & Health, 25, 404 418. Keltner, B. (1992). Family inuences on child health status. Pediatric Nursing, 18, 128 131. Larson, E. (2006). Caregiving and autism: How does childrens propensity for routinization inuence participation in family activities? OTJR: Occupation, Participation, and Health, 26, 69 79. Lewis, F. (2007). Parental cancer and dependent children: Selected issues for future research. Psycho-Oncology, 16, 9798. Lewis, F., Behar, L., Anderson, K., Shands, M., Zahlis, E., Darby, E., & Sinsheimer, J. (2001). Blowing away the myths about the childs experience with the mothers breast cancer. In L. Baider, C. Cooper, & A. Kaplan De-Nour (Eds.), Cancer and the family (2nd ed., pp. 201221). Chichester, United Kingdom: Wiley. Malenfant, N. (2006). Routines and transitions: A guide for early childhood professionals. St. Paul, MN: Redleaf Press. Markson, S., & Fiese, B. (2000). Family rituals as a protective factor for children with asthma. Journal of Pediatric Psychology, 25, 471 479. Osborn, T. (2007). The psychosocial impact of parental cancer on children and adolescents: A systematic review. Psycho-Oncology, 16, 101126. Patterson, J., & Garwick, A. (1994). The impact of chronic illness on families: A family systems perspective. Annals of Behavioral Medicine, 16, 131142. Rauch, P., & Muriel, A. (2004). The importance of parenting concerns among patients with cancer. Critical Reviews in Oncology/Hematology, 49, 37 42. Reiss, D., Steinglass, P., & Howe, G. (1993). The familys organization around the illness. In R. Cole & D. Reiss (Eds.), How do families cope with chronic illness (pp. 173213). Hillsdale, NJ: Erlbaum. Resnick, M., Bearman, P., Blum, R., Bauman, K., Harris, K., Jones, J., . . . & Udry, J. R. (1997). Protecting adolescents from harm: Findings from the National Longitudinal Study on Adolescent Health. JAMA: Journal of the American Medical Association, 278, 823 832. Robinson, W., Carroll, J., & Watson, W. (2005). Shared experience building around the fam-



ily crucible of cancer. Families, Systems, & Health, 23, 131147. Ryan, G., & Bernard, H. R. (2003). Techniques to identify themes. Field Methods, 15, 85109. Sameroff, A., & Fiese, B. (2000). Transactional regulation: The developmental ecology of early intervention. In S. Meisels & J. Shonkoff (Eds.), Early intervention: A handbook of theory, practice, and analysis (pp. 319). New York: Cambridge University Press. Sargent, J. (2003). Commentary: Involving children in the care of a parent with cancer. Families, Systems & Health, 21, 259 261. Schmitt, F., Santalahti, P., Saarelainen, S., Savonlahti, E., Romer, G., & Piha, J. (2008). Cancer families with children: Factors associated with family functioningA comparative study in Finland. Psycho-Oncology, 17, 363372. Seymour, F., Brock, P., During, M., & Poole, G. (1989). Reducing sleep disruptions in young children: Evaluation of therapist-guided and written information approaches: A brief report. Journal of Child Psychology and Psychiatry, 30, 913918. Steinglass, P., Bennett, L., Wolin, S., & Reiss, D. (1987). The alcoholic family. New York: Basic Books. Strauss, A., & Corbin, J. (1990). Basics of qualitative research: Grounded theory procedures and techniques. Thousand Oaks, CA: Sage. Su, Y., & Ryan-Wenger, N. (2008). Childrens adjustment to parental cancer: A theoretical

model development. Cancer Nursing, 30, 362381. Sytsma, S., Kelley, M., & Wymer, J. (2001). Development and initial validation of the Child Routines Inventory. Journal of Psychopathology and Behavioral Assessment, 23, 241251. Thastum, M., Johansen, M., Gubba, L., Olesen, L., & Romer, G. (2008). Coping, social relations, and communication: A qualitative exploratory study of children of parents with cancer. Clinical Child Psychology and Psychiatry, 13, 123138. Turner, V. (1967). The forest of symbols: Aspects of Ndembu ritual. Ithaca, NY: Cornell University Press. Visser, A., Huizinga, G., Hoekstra, H., van der Graaf, W., Klip, E., Pras, E., & HoekstraWeebers, J. E. H. M. (2005). Emotional and behavioural functioning of children of a parent diagnosed with cancer: A crossinformant perspective. Psycho-Oncology, 14, 746 758. Weihs, K., & Reiss, D. (2001). Family reorganization in response to cancer: A developmental perspective. In L. Baider, C. Cooper, & A. Kaplan De-Nour (Eds.), Cancer and the family (2nd ed., pp. 1739). Chichester, United Kingdom: Wiley. Welch, A., Wadsworth, M., & Compas, B. (1996). Adjustment of children and adolescents to parental cancer. Cancer, 77, 1409 1418. Wolin, S., & Bennett, L. (1984). Family rituals. Family Process, 23, 401 420.