1	Children’s Pain and Distress during Pediatric Oncology Treatment Procedures The Role of Parent-Child Communication*
2	Magnitude of the Problem 12,400 children in the U.S. under age 20 are diagnosed with cancer annually. Cancer is the leading cause of children’s disease-related death in the U.S. Nearly 80% children diagnosed with cancer today will survive at least five years; 70% will survive ten years. About 25 to 30% of survivors have significant psychosocial problems.
3	The Epicenter: Treatment Experience Patients undergo numerous painful and distressing treatment-related medical procedures. Procedures: port starts, lumbar punctures, bone marrow aspirations; intramuscular injections. Children with leukemia average 20 painful procedures over the course of treatment. Our current grant: More than eight procedures in the previous two months (including port starts) and more than 10 lumbar punctures or bone marrow aspirations since diagnosis.
4	The Epicenter: Treatment Experience Stress and trauma associated with painful procedures may be acute, particularly for young children. Patients and parents experience the pain and stress of treatment procedures as a significant burden. Pain due to treatment and procedures is a greater problem than pain due to the malignant disease itself.
5	Biopsychosocial Outcomes Children consider painful procedures the most difficult part of illness. Repetition of procedures does not desensitize them to distress. The more painful the treatment, the more likely it is that a patient (or the parents) stops the treatment.
6	Biopsychosocial Outcomes Negative reactions to treatment place children and parents at subsequent risk for biopsychosocial problems. - Worse prognosis. - Reduced longer-term survivorship. - Lower quality of life. - Greater sense of helplessness. - Post-traumatic stress symptoms. - Psychosocial disorders. - Possible maltreatment.
7	Biopsychosocial Outcomes Substantial variability exists in responses to treatment, psychosocial adjustment during course of treatment, post-completion of treatment, and long-term. What are causes and consequences of this variability?
8	Conceptual Model: Stress of Treatment Procedures
9	Previous Research: Parent Communication Adults’ communication behavior before and during procedures affects child distress. Reduced distress: - Self-reported: modeling, reassurance (anticipatory distress). - Observed procedure: encouraging coping, distraction, bargaining, explaining (procedural distress).
10	Naturally Occurring Parent Communication Enhanced distress: - Self-reported: Threats of punishment. - Observed pre-procedure: encouraging coping, behavioral commands, criticism, and reassurance (anticipatory distress). - Observed procedure: Being “overly empathic,” apologies, reassurance, criticism, yielding control to child, inconsistent/vague commands (procedural distress).
11	Communication Interventions Distraction - Momentary distraction reduced crying, distress. - Promising high-tech distractions: video games, electronic “smart toys, “ virtual reality. (Note: interactive, continuous distraction). - Reviews conclude: findings mixed; no consensus. - Effects of parent-implemented distraction unclear. - Feasability issues (limits on child motion).
12	Communication Interventions Cognitive-behavioral therapy (CBT). - Complex “packages” of behavioral techniques. - Deep breathing/relaxation exercises, rehearsal, modeling, imagery, coaching, positive self-talk, non- procedural talk, positive reinforcement, hypnosis, distraction. - Implemented by therapists, psychology graduate students, nurses. - Whether parents can be trained to consistently and effectively implement CBT is unknown.
13	Limitations Little research on naturally-occurring parent communication. Atheoretical; lack of conceptual clarity (e.g., empathy, equating reassurance and support). Discrete messages versus patterned communication. Combined staff/parent behaviors. Failure to account for multiple parents. Distraction studies fail to account for whether distraction attempts are successful. CBT: complex, difficult to implement, may compete with parents’ natural communication, determining causality is difficult.
14	Previous Research: Summary Little attempt to offer a comprehensive description of parents’ naturally-occurring communication. Absence of a coherent theoretical explanation of the influence of parents’ communication on children’s responses to treatment. Absence of theoretical frameworks guiding most research has made establishing a coherent post-hoc explanation challenging.
15	KCI Parent-Child Communication Research Overview: 1. Parents’ global communication patterns during treatment procedures. 2. Parents’ nonverbal immediacy behavior during treatment procedures.
16	Data Collection Overview Parents/patients consent for self-report measures, video recording, home visits. Parents complete questionnaires on selves and children: personality/temperament. Parents report emotional states immediately before treatment. Video record treatment sessions; obtain pain/distress ratings. Two to three weeks later, parents provide health history for children.
17	Diverse Sample Gender: 18 males, 13 females. Age : 3 to 12 years. (M = 7.1, SD = 3.1). Ethnicity/race: 19 European-American, 8 African-American, 2 Arab-Americans, and 2 mixed ethnicity. Time since diagnosis: 26 days to 32 months. Procedures: 15 port starts, 16 lumbar punctures (2 with bone marrow aspirations; 2 with port starts).
18	Treatment Data Video-recorded parent-child interactions in treatment room. Length of tapes: 11 minutes to 3.5 hours (M= 74.9 minutes; SD = 54.9). Multiple adults functioned as parents in 11 cases. Parents, nurses, children, and independent observers rated children’s pain and distress using Faces scale. Judges later coded parents’ global communication patterns and nonverbal behavior using video recordings.
19	Faces Test
20	Video Equipment High resolution digital video camera with microphone. Wide angle lens, ideal for small clinic room.
21	Observation Phases Pre-Procedure: Start to immediate preparation for procedure. Procedure: Immediate preparation for procedure to procedure completed. Post-Procedure: Completion of procedure until recording concluded.
22	Parent Communication and Child Pain and Distress during Painful Pediatric Cancer Treatments* R. J. W. Cline F. W. K. Harper L. A. Penner A. M. Peterson J. W. Taub T. L. Albrecht *Social Science and Medicine 63, 883-898.
23	General Research Questions 1. What are the prototypical ways that parents communicate (propose to define the situation)? Are parent communication patterns predictive of child responses?
24	Study Extends Research Offers theoretical framework: Symbolic interactionism. Provides organizing construct: Definition of situation. Considers patterns vs. discrete messages. Communication across clinic visit vs. narrow time frame (e.g., needle insertion). Considers communication by phases and procedure type. Assesses relationships between parent communication and child responses (pain/distress) to treatment.
25	Theoretical Framework: Symbolic Interactionism Communication creates/validates reality. First task: define the situation (Goffman, 1959). Definitions of the situation establish: - Participant roles and rules for behavior (McCall & Simmons, 1978); and - Goals for interaction (Stebbins, 1969). Routine vs. problematic situations (Hewitt, 1976; McCall & Simmons, 1978). Pediatric cancer treatment = problematic situation; requires parents to improvise a situational definition.
26	Theoretical Framework: Parents’ Definition of the Situation Parent communication functions as proposed definition of situation. Situational definitions are co-constructed. More powerful participant has greater control/ responsibility in defining situation (Cast, 2003). Transactions function most smoothly when participants share a situational definition. Invalidation = struggle over situational definition.
27	Coding Parent Communication Patterns Coding system developed after review of 12 recordings. Recordings coded according to four definitions of the situation for each of three phases: Pre-Procedure, Procedure, and Post-Procedure. Inter-rater reliability was 83.3% agreement; Cohen’s kappa = .76. Intra-rater reliabilities (5 randomly-selected recordings) = 100% agreement. Differences resolved by consensus.
28	Results RQ1: What are the prototypical parent communication patterns? - A typology of four communication patterns emerged. - Wide variability in parent communication behavior.
29	Normalizing “We are NOT in this situation.” - Hereafter: “Normalizing” (reframing). - Parent engages in activities encountered in everyday life. - Role: Guide to normalcy.
30	Invalidating “You are NOT in this situation.” - Hereafter: “Invalidating” [usually verbal or vocal]. - Parent communication denies the validity or reality of child’s experience, or child as credible source in defining situation. - Role: Combatant, judge.
31	Supportive “I am WITH you in this situation.” - Hereafter: “Supportive.” - Verbally and nonverbally attentive to child’s needs; offers comfort, empathy. - Role: Active and protective partner.
32	Distancing “You are in this situation, I am NOT.” - Hereafter: “Distancing.” - Parent role: Uninvolved bystander or observer. Parent leaves the situation physically and/or emotionally.
33	Research Questions RQ2: What is the relative frequency with which parents use each type of communication pattern? RQ3: Do child responses to treatment, in terms of pain and distress, differ on the basis of parent communication patterns used during the procedure phase?
34	Frequency of Definitions: Primary Parent by Phase Pre- Procedure Post- n % n % n % Normalizing 12 46 5 16 1 5 Invalidating 2 8 5 16 1 5 Supportive 8 31 15 48 9 45 Distancing 4 15 6 19 9 45
35	Parent Communication: Reaction to Treatment Child reactions differed on the basis of parent communication patterns. On 15 of 18 comparisons of pain/distress between children of invalidators and children of normalizing, supportive, and distancing parents, invalidated children rated higher: (2 ps < .001, 3 ps < .01, 6 ps < .05, 4 ps < .10). All exceptions were for nurse pain/distress ratings. No other differences in child pain/distress among other parent communication patterns.
36	Invalidated Children Considering all phases of the treatment clinic visit, and all parents accompanying children: - 19% (n = 6) of children were invalidated during the clinic visit. Focus: Comparisons between invalidated children and validated children (all other parent communication styles combined).
37	Invalidated Children Have worse reactions than other children to treatment: - Parent pain rating (p = .069) - Parent distress rating (p = .030)* - Nurse pain rating (p = .053) - Nurse distress ratings (p = .004) - Child pain rating (p < .001) - Objective observer distress rating (p = .004) * Square root transformation of data.
38	Invalidated Children Parents younger (p = .065). Immediately prior to treatment, parents report significantly less state empathic concern (p = .010). Experience communication during treatment visits that denies, challenges their experience.
39	Conceptual Model
40	Parent State Empathic Concern Correlates negatively and significantly with child pain/distress. Parents’ personal attributes predicted parent empathic concern: - Resilience. - Enduring positive emotions (trait). - Satisfaction with social support. Child personal attributes predicted parent empathic concern: Resilience. Distractibility.
41	Conceptual Model
42	Implications for Coping Supportive: - Parent copes by actively supporting child; - Frees child to acknowledge situation, accept support; - Coping is a relational task. Normalizing: - Parent copes by creating an illusion of normalcy; - Implies child should cope by engaging in routine activities; - Coping is a relational task.
43	Implications for Coping Distancing: - Parent copes passively by avoidance; - Suggests child can/should cope on own; - Coping is an individual task. Invalidating: - Parent copes by denial (of distressing situation, validity of child’s responses); - Child left to struggle with conflicting evidence; - Parent denies child’s need to cope.
44	Implications: Literature Normalizing differs from distraction, theoretically and practically. Results counter literature regarding negative impact of supportive communication. Invalidation includes reassurance, criticism.
45	Implications: Theory Coordination Model SI theory suggests transactions smooth with shared definitions of situation. Competing situational definitions result in continued struggle. Coordination: Normalizing, Supportive. Competing: Invalidation (parent rejects child’s situational definition).
46	Parents’ Interpersonal Distance and Touch Behavior and Child Pain and Distress during Painful Pediatric Oncology Procedures
47	General Research Questions What is the relative frequency of parents’ use of nonverbal immediacy behaviors, interpersonal distance and touch? 2. How/are parents’ nonverbal immediacy behaviors related to child pain and distress?
48	Role of Social Support Abundant evidence points to social support’s benefits in alleviating stress, facilitating coping, and enhancing health and medical outcomes. Role of parents’ social support messages during pediatric oncology treatment has been relatively unexplored.
49	Mixed Results Early research implied that parents’ social support (e.g., verbal empathy) may promote rather than reduce child distress (parent/staff combined, empathic statements preceded distress). Manne et al. found a negative relationship between parent responsivity and child distress. Cline et al. found a supportive parent style associated with less child distress than an invalidating style.
50	Competing Hypotheses Parent social support increases child distress. - Offering support focuses child’s attention on distressing events. Parent social support reduces child distress. - Validates child’s experience as legitimate, partners with child.
51	Research Limitations Atheoretical approaches. Lack of conceptual clarity (e.g., empathy and reassurance not distinguished despite differences in function). Confounding of medical staff and parent behavior. Audiotapes unable to capture nonverbal behavior that might function as social support.
52	Nonverbal Immediacy as Social Support Social support: Verbal and nonverbal messages that function to help others manage uncertainty and thereby enhance perceived control and reduce stress (Albrecht & Goldsmith, 2003). Immediacy: Physical or psychological closeness and availability (Mehrabian, 1972). Nonverbal immediacy behaviors: Posture of involvement, forward lean, minimal interpersonal distance, appropriate use of touch, and gaze conveying interest (Andersen, 1985).
53	Nonverbal Immediacy as Social Support: Evidence Physical presence and touch function as emotional support. Proximity seeking hypothesized as a primary attachment strategy when one member of a close relational system feels threatened and seeks support (Bowlby, 1982).
54	Nonverbal Immediacy as Social Support: Evidence Touch conveys warmth, support, empathy; alleviates physical distress, relational contact. Classic child development studies demonstrated tactile contact as essential to psychological, social, and physical development and well-being. Beneficial to reducing adults’ stress and anxiety during medical procedures.
55	Interpersonal Distance in Pediatric Oncology Caregivers who are not present are not available to respond to child’s needs. Children display more distress when parents are present during medical procedures. Children cite parental presence as the most helpful factor during invasive procedures.
56	"Several studies found increased crying..." Several studies found increased crying and other distress behaviors when parent present during procedures, sometimes interpreted as the parent contributing to children’s distress. Naber et al. found parent presence and close interpersonal distance associated with reduced child distress during painful procedures.
57	Touch In Pediatric Oncology Nurses’ (but not parents’) use of nonessential touch was negatively associated with child distress during pediatric oncology procedures. Not all touch functions as support. Instrumental touch: relates to task performance (i.e., completing medical procedure, sometimes physical restraint).
58	Coding: Interpersonal Distance Codes based on Hall (1969): Intimate (0 to 12 inches). Personal (> 1 to 3 feet). Social (> 3 to 6 feet). Clinical (> 6 feet) Unknown.
59	Touch Coding Touch: Touch: Visible tactile contact. No Touch: Visible absence of contact. Unknown: Unable to discern touch. Touch Functions: Supportive. Instrumental.
60	Touch Coding Supportive Touch: - Bodily contact. - Hugging/kissing - Repetitive/multiple. - Resting/holding. - Spot touch. - Receptive touch. Instrumental Touch: - General instrumental. - Forceful restraint.
61	Coding Four coders coded four cases to assess inter-rater reliabilities. Distance kappa .80, Touch kappa .75 25 cases each coded by one coder. Each coder re-coded one case to assess intra-rater reliabilities. Distance kappa .83, Touch kappa .82.
62	Observer Video Pro^®
63	Results: Interpersonal Distance RQ: What proportion of observable time do caregivers spend at each interpersonal distance? Clinic Visit: 78.2% time at “close” distance, “within reach.” 62.2% time at personal distance. Procedure phase: 79.4% time at “close” distance, “within reach.” 22.9 % time at intimate distance.
64	Results: Touch RQ: What proportion of observable time do parents spend touching the child? Clinic Visit: Mean: 20.7%. Range: 0 to 76.0%. Procedure Phase: * Mean: 40.7%. Range: 0 to 100%. * p < .001, significantly greater than Pre- and Post- Procedure Phases.
65	Results: Touch Functions RQ: What proportion of touch time is supportive vs. instrumental touch? More supportive (72.7%) than instrumental (27.3%) across clinic visit. No differences in functions of touch by phase.
66	Supportive Touch: Observable Time RQ: What proportion of observable time do parents spend touching the child supportively? Pre-Procedure: 14.7%. Procedure: 29.3%.* Post-Procedure: 12.3%. Clinic Visit: 16.8%, range 0% to 71.7%. p = .017, significantly greater than Pre- and Post- Procedure Phases.
67	Instrumental Touch: Observable Time* RQ: What proportion of observable time do parents spend touching the child instrumentally? Pre-Procedure: 2.2%. Procedure: 11.4%.* Post-Procedure: 3.3%. Clinic Visit: 3.8%. Range across visit: 0% to 17.2%. p = .043, significantly greater than Pre- and Post- Procedure Phases.
68	Nonverbal Immediacy and Child Responses RQ: What relationships exist between child pain and distress and parent use of nonverbal immediacy behaviors: - Time at a close distance? - Observable time touching child? - Observable time touching child supportively? - Observable time touching child instrumentally?
69	Child Responses and Close Distance 3 of 18 correlations were significant and positive. Greater time at close distance, more child pain/distress. - Pre-Procedure, parent distress (r = .47, p = .014), nurse distress (r = .44, p < .023). - Procedure, nurse distress (r = .40, p < .042).
70	Child Responses and Time Touched (r)
71	Child Responses and Time Touched Supportively (r)
72	Child Responses and Time Touched Instrumentally (r)
73	Competing Hypotheses Our Argument: Parents’ touch is response to child’s distress.
74	Competing Hypotheses
75	Competing Hypotheses
76	Competing Hypotheses
77	What Have We Learned? New Concepts Coded – Physical Restraint
78	What Have We Learned? New Concepts Coded – Receptive Touch
79	What Have We Learned? Phenomena Observed
80	Conclusions Limitations: Small sample size. Snapshot view of treatment: parent behavior and child reactions. Coding does not address parents’ intentions or children’s perceptions.
81	Conclusions Contributions: Conceptual model drives predictions. Theoretical approaches to observing parent communication. Research plan for analyzing larger sample and developing longitudinal study.