Many pediatric cancer patients and their parents experience serious psychosocial problems during and long after completing treatment. Designing interventions to significantly reduce these problems requires understanding their origins. Thus, our primary objective is to identify specific factors that directly and indirectly affect psychosocial adjustment. Previous research shows: (a) both parents'and children's long-term psychosocial outcomes are rooted in the treatment experience;(b) invasive treatment procedures during clinic visits (e.g., lumbar punctures) are one of the most stressful aspects of pediatric cancer;and thus (c) negative responses to these procedures (e.g., distress) place parents and children at greater risk for subsequent psychosocial problems. We have found that variability in children's immediate responses to treatment procedures is associated with variability in situational resources (i.e., resources on days of clinic visits) and in parent-child communication patterns during clinic visits. Our model of causes of psychosocial problems associated with pediatric cancer is based on these and other empirical findings. It posits that: (a) stable family resources (i.e., social, personal, and fiscal/material resources) directly affect parents'and children's psychosocial well-being;(b) stable and situational family resources affect parent-child communication during clinic visits;and (c) parent-child communication affects their responses to procedures and subsequent psychosocial adjustment.
Our first aim (Phase 1) is to replicate and extend prior research on relationships among the variables in the model and to determine the viability of the overall model.
Our second aim (Phase 2) is to experimentally test causal relationships between specific variables in the model and parents'and children's responses to procedures. We will conduct two separate experiments that manipulate specific situational resources and parent communication behavior and examine the direct and/or indirect effects on immediate responses to treatment procedures and on subsequent psychosocial adjustment. Phase 1 will enroll 130-150 total families of recently diagnosed pediatric cancer patients at two institutions. Families'stable resources and situational resources on days of clinic visits will be assessed. Parent-child interactions during three clinic visits will be video recorded and responses to treatment procedures will be assessed. Children's and parents'psychosocial adjustment will be assessed three, six, and nine months after completion of video-recorded clinic visits. In Phase 2, 130-150 families from the two institutions will be randomly assigned to control and experimental treatment conditions. Experimental groups will receive the manipulations. Control groups will receive standard of care. Families will be assessed in the same manner as in Phase 1.
Previous research indicates that: (a) invasive treatment procedures are one of the most stressful aspects of pediatric cancer and (b) parents'and children's negative long-term psychosocial outcomes are rooted in distress reactions associated with those procedures. Families'personal and social resources at the time of treatment and parent-child communication patterns during treatment-related clinic visits are associated with children's responses (i.e., pain and distress) to treatment procedures. The proposed study will identify and experimentally test relationships between specific social and personal resources and parent-child communication and parent/child immediate responses to treatment procedures and psychosocial adjustment. The study will provide the basis for interventions ameliorating some of the major negative psychosocial effects of pediatric cancer. Narrative Previous research indicates that: (a) invasive treatment procedures are one of the most stressful aspects of pediatric cancer and (b) parents'and children's negative long-term psychosocial outcomes are rooted in distress reactions associated with those procedures. Families'personal and social resources at the time of treatment and parent-child communication patterns during treatment-related clinic visits are associated with children's responses (i.e., pain and distress) to treatment procedures. The proposed study will identify and experimentally test relationships between specific social and personal resources and parent-child communication and parent/child immediate responses to treatment procedures and psychosocial adjustment. The study will provide the basis for interventions ameliorating some of the major negative psychosocial effects of pediatric cancer. __SpecificAimsTextDelimiter__ 2. SPECIFIC AIMS Today, children are surviving pediatric cancer at unprecedented rates, making it one of modern medicine's true success stories. However, the diagnosis and on-going treatment of pediatric cancer, and its aftermath, continue to be major stressors for children and their parents, particularly those of lower socio-economic status (Phipps, et al., 2008), who often have fewer resources to manage the stress. Designing interventions to significantly reduce the negative psychosocial consequences of pediatric cancer requires that we understand the origins of these problems. Importantly, researchers are now finding that clinic visits involving painful and invasive treatment procedures are one of the most stressful aspects of the cancer experience for both the children and their parents (e.g., McCaffrey, 2006). We have found that how parents and children communicate during these visits is an important factor in children's immediate responses to treatment procedures and, indirectly, their long-term quality of life. For example, how parents interact with their children before, during, and after invasive procedures (e.g., port starts, lumbar punctures) is related to the levels of pain and distress that children experience in response to procedures (Cline et al., 2006a;Penner et al., 2008;Peterson et al., 2007). This pain and distress is predictive of children's subsequent anxiety about treatment procedures. Other researchers find that parents'negative responses to treatment procedures also may place them at greater risk for negative psychosocial outcomes (see Rabineau et al., 2008). In sum, mounting evidence indicates that parents'and children's short- and long-term psychosocial outcomes of pediatric cancer are rooted in how they communicate during treatment episodes.1 This work has brought us to the following global hypothesis: Parent-child communication during treatment episodes is a major determinant of parents'and children's psychosocial adjustment to pediatric cancer. The following model guides our proposed research (Figure 1). (See Design and Methods for a detailed version of the model.) Family Stable Resources Situational Resources Communication in Treatment Episodes Responses to Treatment Procedures Psychosocial Adjustment Figure 1. Schematic Summary of Conceptual Model.2 Four core hypotheses are represented in our model. First, differences in the quality and quantity of Family Stable Resources (i.e., social, personal, fiscal/material, institutional) directly affect children's and parents' subsequent Psychosocial Adjustment and their Situational Resources. Second, differences in the quantity and quality of families'Situational Resources on treatment days affect parent-child Communication during treatment episodes. Third, Communication affects parents'and children's immediate Responses to treatment procedures. Fourth, those Responses affect parents'and children's subsequent Psychosocial Adjustment. Thus, our first aim is: Aim 1: To examine the relative strength of direct and indirect covariation in the following relationships: a. Family Stable Resources and family Situational Resources on days of treatment-related clinic visits; b. Family Situational Resources on days of treatment-related clinic visits and parent-child Communication during treatment episodes; c. Parent-child Communication during treatment episodes and parents'and children's Responses (e.g., distress) to treatment procedures;and d. Parents'and children's Responses to treatment procedures and parents'and children's subsequent Psychosocial Adjustment. All of the bivariate relationships in Figure 1 have been supported in our own previous research and/or in others'research (see Background and Significance and Preliminary Studies). However, translating these results into interventions requires two additional steps. The first step (Aim 1) is to test the entire model, which posits that (a) families'Stable and Situational Resources are related to parent-child Communication during treatment episodes, (b) Communication is related to parents'and children's Responses to those treatment procedures, and (c) thus, these Responses are indirectly related to parents'and children's 1 In this application, short-term refers to phenomena that occur during active treatment;long-term refers to phenomena that occur after the course of treatment is completed. 2 We use the term treatment procedure to refer to specific invasive medical procedures (e.g., lumbar punctures) that occur during clinic visits and the term treatment episode to refer to the immediate social context surrounding the implementation of those procedures (i.e., the period of time parent and child spend in the treatment room prior to, during, and immediately following treatment procedures). subsequent Psychosocial Adjustment. Achieving Aim 1 will fulfill the first step. The second step is to conduct direct tests of specific causal paths posited in this model. Because Aim 1 employs a correlational design, it cannot do this. Rather, randomized experiments are required to directly test for causal relationships and identify the true nature of meditational processes (Spencer et al., 2005). This is the goal of Aim 2. Specifically, the model and prior research suggest that family Situational Resources at the time of treatment and parent-child Communication have direct effects on Responses to treatment procedures and indirect effects on Psychosocial Adjustment. However, we are unaware of any controlled experimental work that has manipulated these factors and examined their direct and indirect effects. Therefore, in Aim 2, we will manipulate selected components of Situational Resources and Communication and examine the effects of those manipulations on Responses to treatment procedures and subsequent Psychosocial Adjustment. Thus, Aim 2 will determine whether changing selected components of Situational Resources and of parent-child Communication will improve parents'and children's Responses to treatment procedures and subsequent Psychosocial Adjustment. Achieving the two aims together will set the stage for testing clinical interventions that could improve at-risk families'psychosocial adjustment in response to the pediatric cancer experience. Aim 2: To experimentally determine causal relationships among certain variables in the model. We will: a. Identify components of Situational Resources and parent-child Communication that prior research suggests hold the greatest promise to improve parents'and children's Responses to treatment procedures;and b. Conduct two experiments in which we experimentally manipulate these components and empirically examine direct and/or indirect effects of the manipulations on parents'and children's Responses to treatment procedures and their subsequent Psychosocial Adjustment.
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