In Sickness and in Play: Children Coping with Chronic Illnesses
In Sickness and in Play: Children Coping with Chronic Illnesses. Cindy Dell Clark. New Brunswick, NJ: Rutgers University Press, 2003. xi + 225 pp.
Reviewed by: Mara H. Buchbinder, University of California, Los Angeles
Bluebond-Langner (1978) first taught us that children understand much more than we think about chronic and life-threatening illness. In this insightful, well-written book, part of the Rutgers Series in Childhood Studies edited by Bluebond-Langner, Cindy Dell Clark delves into the social worlds of young children with asthma and Type 1 diabetes. Clark’s premise, that “children’s framings of reality constitute singular social worlds which are pervasive, full of impact, and woefully underexplored” (p. 160), responds to a quickly growing literature on child-centered research (cf. James, Jenks, and Prout 1998). The idea that social interaction mediates the experience of chronic illness is not new to medical and psychological anthropology, but Clark’s efforts to understand children’s own perspectives, feelings, and understandings of and about illness form a unique contribution to the literature.
The book describes Clark’s ethnographic research with 46 families in urban and suburban metropolitan Chicago during the mid-1990s. After a succinct introduction to her child-centered approach, the next chapters describe children’s explanatory models of illness, treatment practices, and the ways illness intrudes on the child’s lifeworld, among the five to eight year-old children she studied. Chapter 2 focuses on children with Type 1 diabetes, whereas Chapter 3 deals with childhood asthma; each provides useful background information about the particular illness and how it is treated and managed in Western biomedicine. In Chapter 4, Clark outlines her concept of imaginal coping, a psychological process whereby children creatively employ fantasy and imagination in coming to grips with stressful or traumatic circumstances. Finally, the last chapter briefly considers how children engage in symbolic meaning-making and healing.
Clark’s concept of imaginal coping successfully taps into various literatures on ritual, healing, and play, while integrating anthropological and psychological perspectives on illness experience. Clark views coping not as outcome but as process, which she defines as “socially situated and symbolically mediated activity that addresses issues of problematic meaning” (p. 95). With imaginal coping, children invoke wishing, play, humor, and prayer to help them manage the unpleasant symptoms and treatment associated with asthma and diabetes. Like many psychological anthropologists, Clark employs a psychological construct, coping, and adds anthropological richness by adapting it to a specific cultural context—in this case, American childhood. By focusing on what helps children deal with difficult experience as they themselves define it, as opposed to assessing clinical signs of psychological adjustment, Clark argues that the concept of imaginal coping “avoids an imposition of adult needs or desires upon the child quite apart from the child’s own inclination” (p. 165).
There are several limitations to Clark’s work that should be mentioned. Although Clark purports to study families “of diverse social class and ethnicity,” (p. 3) we are not informed of any significant differences across these groups. To her credit, Clark acknowledges that much needed cross-cultural comparative work remains to be done (p. 150). Nevertheless, without addressing ethnic or class-based variation, Clark leaves us with the impression that all children in her study endured similar experiences. Furthermore, she does not discuss other variables, such as gender, that might explain why some children cope with illness better than others. In fact, aside from one example (p. 114), Clark gives few ethnographic details about her cases. Finally, it would be interesting to see further consideration of how chronic illness affects other children in the family, as Bluebond-Langner (1996) has shown for siblings of children with cystic fibrosis.
In one of the most interesting parts of the book, Clark describes key differences between families dealing with asthma and Type 1 diabetes. According to Clark, families with a diabetic child were more inclined to participate in organized support groups, summer camp programs, and fundraising activities than families with an asthmatic child. Clark suggests that such differences might be explained by differing cultural interpretations of illness, “that is, that diabetes is more dire” (p. 87). However, I wonder whether confounding variables might exist, such as the fact that environmental factors play a greater role in asthma etiology, and that poor, urban children are disproportionately affected by asthma in contrast with diabetes. If we accept Clark’s proposal that diabetes is “taken more seriously” (p. 87) than asthma, these demographic factors warrant further attention.
Clark’s experimentation with new methods appropriate for child-centered research is perhaps the greatest strength of this book. In line with recent scholarship (Christensen and James 2000; Corsaro and Miller 1992), Clark recognizes that traditional anthropological methods may not be appropriate for accessing children’s perspectives on their worlds. In Appendix A, “Freeing Children’s Voices,” Clark describes her “child-friendly” research methods, emphasizing that research activities should be familiar and comfortable to children. Clark treats interviews with children as play sessions, inviting children to use toys and props to show and tell about the experience of illness. In doing so, Clark emphasizes that nonverbal expressions such as play, drawing, singing, and dance form key communicative modes during childhood.
Importantly, Clark has pioneered the use of two innovative visual methods for “seeing” children’s worlds. The Metaphor Sort Technique is a type of picture sort in which children identify whether pictures of familiar objects such as a playground, umbrella, or shark embody a feeling similar to that of the illness or treatment device, while the photo-assisted “autodrive” interview is a type of photo-elicitation technique in which children take photographs about life with chronic illness and then narrate stories about their pictures to the researcher. As Clark notes, such methods address power asymmetries in research relationships by ceding more control to child participants, while serving “as a protection for these young informants, since the children maintained control of whether and when to mention vulnerable topics” (p. 157). In an academic climate of increased concern for research ethics and tightened IRB oversight, Clark’s methods provide crucial input into how we might conduct research with children on sensitive topics, while simultaneously complying with institutional regulations. Her appendices would be useful for teaching methods to students, particularly those interested in research with children. Given that three billion people, almost half of the world’s population, are under the age of 25 (UNFPA 2005), it is critical that anthropologists develop methods to better understand children’s cultural worlds. This book makes an important step toward cultivating such child-centered methods.
REFERENCES CITED
Bluebond-Langner, Myra
1978 The Private Worlds of Dying Children. Princeton: Princeton University Press.
1996 In the Shadow of Illness: Parents and Siblings of the Chronically Ill Child. Princeton, NJ: Princeton University Press.
Christensen, Pia, and Allison James, eds.
2000 Research with Children: Perspectives and Practices. London: Falmer Press.
Corsaro, William, and Peggy Miller, eds.
1992 Interpretive Approaches to Children's Socialization. New Directions for
Child Development, Vol. 58. San Francisco: Jossey-Bass Publishers.
James, Allison, Chris Jenks, and Alan Prout
1998 Theorizing Childhood. Cambridge: Polity Press.
United Nations Population Fund
2005 State of World Population 2005. The Promise of Equality: Gender Equity, Reproductive Health, and the Millenium Development Goals. New York: The United Nations Population Fund.
