Longitudinal Analysis of Parent Communication Behaviors and Child Distress during Cancer Port Start Procedures

Abstract

Background: The roles parents play in supporting their child during painful cancer procedures have been studied as communication strategies versus a broader caring framework and from a cross-sectional versus longitudinal perspective. Objectives: To examine the longitudinal change in parent communication behaviors over repeated cancer port start procedures experienced by their children. Methods: This study used a longitudinal design. Two trained raters coded 104 recorded videos of port starts from 43 children being treated for cancer. This included 25 children with two video-recorded port starts and 18 children with three (T1, T2, T3). The Parent Caring Response Scoring System derived from Swanson's Caring Theory was used to code parent communication behaviors as caring responses during their children's port starts. Three 3- to 5-minute slices (pre–port start, during, and post–port start) were coded for each video. Mixed modeling with generalized estimating equations and Friedman test were used to analyze longitudinal change in parent behaviors. Results: Significant differences were found between T1 versus T3 in eye contact (β = −1.05, p = .02), distance-close-enough-to-touch (β = −0.81, p = .03), nonverbal comforting (β = −1.34, p = .04), and availability (β = −0.92, p = .036), suggesting that more parents used communication behaviors at T3 compared with T1. Parent burdensome or intrusive questions (e.g., Why do you cry? β = −1.11, p = .03) and nonverbal comforting (β = −1.52, p = .047) increased from T2 to T3. The median values of parent communication behaviors overall had no significant changes from T1 to T3. Conclusion: Parents adjusted to use more nonverbal caring behaviors as their child experienced additional port starts. Experimental studies should be designed to help parents use caring behaviors to better support their children during cancer procedures.