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Abstract

Introduction: To improve end-of-life care, the Collaborative Pediatric Critical Care Research Network developed and pilot-tested a framework for conducting follow-up meetings after a child’s death in the PICU. Follow-up meetings were determined to be feasible and acceptable to parents and physicians, but parents’ psychological states may influence their perceptions of the meetings. Prior research suggests that parents’ language use, such as words indicating positive and negative emotions, can predict their psychological state. This study examined associations between parents’ word use and their perceptions of the meetings. Methods: Using Linguistic Inquiry Word Count (LIWC) software, we analyzed transcripts of 35 video-recorded follow-up meetings conducted between PICU physicians and bereaved parents (33 mothers, 21 fathers). We assessed relationships between parents’ words indicating positive (e.g., “nice”) and negative (e.g., “hurt”) emotions and their perceptions of the meetings reported on a 7-item survey conducted a week later, using Pearson’s correlations. Survey items were: 1) information discussed was important, 2) information was discussed in a way I could understand it, 3) I could ask questions, 4) I felt emotionally supported, 5) I could provide feedback, 6) the meeting was helpful, and 7) the meeting will help me cope. Results: Parents’ use of positive emotion words was not correlated with perceptions of the meeting. Fathers’ use of negative emotion words was negatively associated with mothers’ (but not their own) perceptions that: information was discussed in a way they could understand it (p=.047), they could ask questions (p=.047), they could provide feedback (p=.02), and the meeting was helpful (p=.05). Mothers’ use of negative emotion words was negatively associated with their feeling emotionally supported (p=.014). Fathers’ use of words indicating anxiety (e.g., “worried”) was negatively associated with their feeling the information was important (p=.031), the information was discussed in a way they could understand it (p=.036), and the meeting was helpful (p=.037). Fathers’ anxiety words were negatively associated with mothers’ perceptions of every item (information importance, p=.001; information understood, p=001; questions, p=.001; support p=.001; feedback, p=.001; helpful, p=.002; cope, p=.003). Mothers’ anxiety words were negatively associated with their perceptions of information importance (p=.02), information understood (p=.016), questions (p=.016), and helpfulness (p=.019). Conclusions: Parents’ negative emotions, particularly anxiety, expressed during follow-up meetings after their child’s death in the PICU are associated with negative perceptions of the meetings. Physicians and other health care professionals should be aware of and address parents’ emotions during the meetings, and consider referring parents with high anxiety for further follow-up care.