ارتباطات پدر و مادر و درد و پریشانی فرزند در طی درمان دردناک سرطان کودکان

Children with cancer often consider treatment procedures to be more traumatic and painful than cancer itself. Previous research indicates that parents’ behavior before and during painful medical procedures influences children's distress level. Understanding parents’ naturally occurring communication patterns is essential to identifying families in need of an intervention to enhance coping and emotional well-being. Using the concept of definition of the situation from a symbolic interactionism theoretical framework, this study developed a typology of parent communication patterns and tested relationships between those patterns and children's responses to potentially painful treatment procedures. Analyses are based on video-recorded observations of 31 children and their primary parents (individuals functioning in a parenting role and serving as the primary familial caregivers during the observed procedure) in the USA during clinic visits for potentially painful pediatric oncology treatments. Four communication patterns emerged: normalizing, invalidating, supportive, and distancing. The most common communication patterns differed by clinic visit phase: normalizing during pre-procedure, supportive during procedure, and both distancing and supportive during post-procedure. Parents’ communication also varied by procedure type. Supportive communication was most common during lumbar punctures; normalizing and distancing communication were most common during port starts. Six children (19.4%) experienced invalidation during at least one clinic visit phase. Analyses indicated that invalidated children experienced significantly more pain and distress than children whose parents used other communication patterns. This typology provides a theoretical approach to understanding previous research and offers a framework for the continuing investigation of the influence of parents’ communication during potentially painful pediatric oncology procedures.

Annually, about 12,400 children are diagnosed with cancer in the United States (National Cancer Institute, 2005). Children with cancer often consider treatment procedures to be more traumatic and painful than cancer itself (Hedstrom, Haglund, Skolin, & von Essen, 2003; Ljungman, Gordh, Sorensen, & Kreuger, 1999). Although substantial progress has been made in treating childhood cancer, resulting in decreased mortality, treatment procedures remain a source of pain and distress for pediatric oncology patients. Children demonstrate fear and anxiety before, during, and after treatment procedures (Kuppenheimer & Brown, 2002). Previous research indicates that parents’ communication behavior before and during invasive medical procedures affects children's level of distress (Vance & Eiser, 2004). Parent–child interaction in this context can be viewed from a symbolic interactionism theoretical perspective. Accordingly, parents’ communication “sets the stage” for children's responses by implicitly identifying roles, appropriate rules for behavior in general, and directives for coping (McCall & Simmons, 1978). Yet, what constitutes typical parent communication patterns in this context remains largely unexplored. Knowing how parents communicate during clinic visits involving potentially painful procedures could contribute to developing interventions to reduce the distress and discomfort of the children and their parents. This study's aims were to: (1) identify prototypical parent communication patterns during painful pediatric oncology treatment visits, (2) assess the relative frequency with which parents use each type of communication pattern in general and in relation to clinic-visit phase and type of treatment, and (3) examine relationships between parent communication patterns and child responses to treatment (i.e., pain and distress). (We use the term “parent” generically to describe adults, usually family members, who accompany a child to the clinic for treatment and function in a parental role.) Parents’ communication and children's responses during painful medical procedures Limited descriptive research exists regarding parents’ real-time communication during painful pediatric oncology treatment procedures. Early research established that adults’ communication behavior (including parents) preceding and during such procedures affects children's responses. Self-reported parent messages associated with reduced anticipatory distress related to chemotherapy treatments included “modeling and reassurance” in children ages 5–18 (Dolgin & Katz, 1988). Messages (from videotapes of interactions during procedures) associated with reduced procedural distress and enhanced coping in children (ages 5–13) undergoing lumbar punctures and bone marrow aspirations included: adults’ encouraging the child's coping behaviors (e.g., deep breathing, a relaxation technique) and use of distraction (i.e., attempts direct the child's attention away from the procedure via non-procedural talk and humor) (e.g., Blount et al., 1989; Blount, Landolf-Fritsche, Powers, & Sturges, 1991; Blount, Sturges, & Powers, 1990) and parents’ bargaining and explaining the procedure (venipunctures) ( Jacobsen et al., 1990). Messages associated with greater child distress included parents’ self-reported threats of punishment ( Dolgin & Katz, 1988). Observations of clinical interactions found that adults being “overly empathic,” using apologies, reassurance, and criticism; and yielding control to the child also were associated with increased child distress (e.g., Blount et al. (1989), Blount, Sturges, & Powers (1990) and Blount, Landolf-Fritsche, Powers, & Sturges (1991)). Other observational research found parents’ encouraging coping, behavioral commands, criticism, and reassurance associated with anticipatory distress (prior to the start of the procedure), and parents’ behavioral commands, criticism, and reassurance associated with distress during the procedure (e.g., Dahlquist, Power, & Carlson, 1995), Further research on types of parent commands by Dahlquist et al. (2001) confirmed the association between commands and child distress during intramuscular injections (but not during lumbar punctures) for children ages 5–15 and clarified that inconsistent or vague instructions were positively associated with procedural distress while specific direct commands were negatively associated with procedural distress. Other information on communication factors associated with pediatric patients’ distress comes from intervention research. For example, engaging children in distraction (e.g., using a party blower during the procedure) reduced crying and momentary distress among some children undergoing painful treatments (e.g., Blount, Powers, Swan, & Free, 1994; Manne et al., 1990). Some promising high-tech distraction interventions involve video games, electronic “smart toys” (e.g., Dahlquist, Pendley, Landthrip, Jones, & Steuber, 2002), and virtual reality (see review by Slifer, Tucker, & Dahlquist, 2002). These interventions are all interactive and involve a continuous versus momentary distraction process, suggesting that effective distraction may require both interactivity and the ability to sustain distraction over a period of time. Unfortunately, no distraction research has identified a technique that sustains its effectiveness long-term (i.e., across multiple procedures) ( Slifer et al., 2002). Further, some potentially effective distraction methods may not be feasible in pediatric oncology settings when the child's motion must necessarily be limited to avoid injury from the treatment. Recent reviews conclude that findings are mixed and that no consensus exists about the most effective distraction techniques for specific procedures or age groups (Dahlquist, 1999; Powers, 1999; Slifer et al., 2002). With multiple training sessions, some parents may be taught to implement distraction interventions (e.g., Blount, Powers, Cotter, Swan, & Free, 1994; Manne et al., 1990), however, the effects of parent-implemented distraction activities is unclear (Slifer et al., 2002). Limitations of prior research Much of the research that we reviewed does not focus on parents’ naturally occurring communication, but on interventions that parents might be trained to implement. Further, both basic and intervention research in this context can be characterized as largely atheoretical and thus fails to identify the mechanisms by which parents’ naturally occurring communication influences children (see Dahlquist, 1999; Slifer et al., 2002). One notable exception is work by Reeb and Bush (1996) which drew on Bandura's (1982) self-efficacy theory to improve child coping with treatment. Lack of conceptual clarity adds to the difficulty of understanding underlying mechanisms. Communication concepts (e.g., reinforcement, reassurance, empathy, comforting) often are not clearly differentiated although they may function substantially differently. For example, Kuttner, Bowman, and Teasdale (1988) equated reassurance and support, and Dolgin and Katz (1988) equated modeling and reinforcement, without definition. Methodological problems of past research include coding the behavior of all “adults”, thus confounding behaviors of medical staff and parents (e.g., Blount et al. (1989), Blount, Sturges, & Powers (1990) and Blount, Landolf-Fritsche, Powers, & Sturges (1991)). Further, distraction studies often do not report whether distraction attempts are successful, i.e., whether the child joins or resists engaging in distraction activities (see Dahlquist & Pendley, 2005). Finally, we found no intervention studies that distinguished children in need of intervention from those who may be coping well and thus require no intervention. In summary, methodological problems and the general absence of theoretical frameworks guiding most basic and intervention research has made establishing a coherent and valid post-hoc explanation for the influence of parent communication on child response to treatment challenging. Symbolic interactionism as a theoretical framework: definition of the situation The present study was guided by a symbolic interactionism theoretical framework. Symbolic interactionism highlights communication's constitutive or creative function: realities, including definitions of situations, are socially constructed. One of the most significant factors in communication transactions is the context and how it is labeled and defined (Hewitt, 1976; McCall & Simmons, 1978; Thomas, 1931). The definition of a situation establishes context; it implies participants’ identities (roles), and rules for appropriate or expected behavior. Thus, one of the first tasks for interaction participants is to define the situation (Goffman, 1959). Social situations can be defined as routine or problematic. Routine situations are familiar and readily named, with clear roles and predictable activities (McCall & Simmons, 1978). In contrast new or rare situations are problematic ( Hewitt, 1976), challenging participants to improvise a definition of the situation to accomplish relevant goals ( Stebbins, 1969). A person encountering a problematic social situation may propose a label for it, usually implicitly through his or her communication patterns. As participants interact, situational definitions and communication patterns become self-reflexive; communication patterns establish the situational definition, which, in turn, suggests norms for communication behavior. Parents of children diagnosed with cancer encounter numerous problematic situations, including facilitating repeated painful treatment procedures while attempting to maintain a normal life ( Vance & Eiser, 2004). A primary stressor for these parents is uncertainty about their role, specifically during treatment procedures ( LaMontagne, Wells, Hepworth, Johnson, & Manes, 1999). Thus, a parent is faced with improvising a definition of the situation. Because those with greater power have greater control over defining a situation and thereby the meanings within it ( Cast, 2003), the task of making sense of this problematic situation falls heavily on the parents. Theoretically, parents’ communication patterns during painful oncology treatments function as proposals to their children about how to define the situation and how they both should behave in it, including implied coping behavior (Seeman, 1997). Situational definitions imply purpose, behavioral norms, membership (who is included), degree of commitment, and relevant values and goals (Seeman, 1997). Thus, in the present context, parents’ communication patterns function to indicate desired outcomes, and the communication pathways by which they propose to accomplish those outcomes. For example, a parent's consistently supportive messages may function to acknowledge the difficulty of the situation and his/her desire to ameliorate any distress by actively comforting the child. Thus, the concept of situational definition offers a way to understand parents’ communication patterns and challenges in the pediatric oncology treatment context. Identifying prototypical communication patterns that function to define the situation may provide a foundation for a theoretically driven assessment of relationships between parents’ communication and children's outcomes during and following painful treatment procedures. This study extends previous research theoretically and methodologically. We offer symbolic interactionism as an overarching theoretical framework, and “definition of the situation” (e.g., McCall & Simmons, 1978) as a specific concept, for investigating parents’ communication patterns during painful pediatric oncology procedures. This study considers parents’ communication patterns rather than discrete messages and parent communication across the clinic visit or during the narrow time span surrounding the actual procedure (e.g., insertion of the needle). This study explores how parent communication differs by phases of the treatment visit and by procedure type. Finally, this study assesses relationships between parent communication patterns and child responses to treatment (pain and distress) and thus may provide guidance in identifying families in need of intervention. Research questions Based on previous research related to parent communication during pediatric oncology procedures and using symbolic interaction theory as a framework for understanding parent communication patterns, we asked several research questions. RQ1: What are the prototypical parent communication patterns? RQ2: What is the relative frequency with which parents use each type of communication pattern? Because the literature suggests that parent behavior varies by phase of clinic visit and type of procedure we asked: RQ3: How do parent communication patterns vary by phase of clinic visit? RQ4: How do parent communication patterns vary by type of procedure (lumbar puncture versus port start)? Before examining potential relationships between parent communication patterns and child pain and distress, we explored the extent to which those communication patterns could be explained by personal (e.g., child age, parent age) and medical characteristics (e.g., time since diagnosis, numbers of procedures experienced) by asking: RQ5: Do parent communication patterns during the procedure phase of the clinic visit relate to the personal characteristics of parents or children or the child's medical history? Finally, we expected parent communication patterns to relate to child response to treatment: RQ6: Do child responses to treatment, in terms of pain and distress, differ on the basis of parent communication patterns used during the procedure phase?