Healthcare Information Avoidance in the Context of Caring for a Child with a Serious Illness

TL;DR

Caregivers of seriously ill children may avoid medical information as a short-term coping strategy, but this can be harmful if done long-term.

Contribution

This paper introduces and explores the concept of healthcare information avoidance in the context of pediatric palliative care.

Findings

Healthcare information avoidance can serve as a short-term coping strategy for caregivers.

Prolonged information avoidance is likely to be unhelpful and may hinder effective care.

Identifying reasons for information avoidance is crucial for improving clinical communication.

Abstract

What are the main findings?
•Caregiver healthcare information avoidance may occur as a short-term coping strategy.•Caregiver healthcare information avoidance is likely to be unhelpful as a pervasive, long-term behavior.

Caregiver healthcare information avoidance may occur as a short-term coping strategy.

Caregiver healthcare information avoidance is likely to be unhelpful as a pervasive, long-term behavior.

What are the implications of the main findings?
•Healthcare professionals should identify the reasons for caregiver healthcare information avoidance.•Preparation and planning should occur before healthcare professionals share difficult information with families.

Healthcare professionals should identify the reasons for caregiver healthcare information avoidance.

Preparation and planning should occur before healthcare professionals share difficult information with families.

Caregivers of a child with a serious medical condition are often confronted with difficult and stressful medical information. While they commonly seek out health-related information to better care for their child and help with their decision-making, sometimes caregivers engage in healthcare information avoidance. Healthcare information avoidance is the decision to prevent or delay the acquisition of available, but potentially unwanted, health-related information. We begin by defining the construct of healthcare information avoidance and exploring key theoretical frameworks that illuminate its underlying mechanisms including emotion regulation theory, attentional and cognitive models, approach-avoidance coping strategies, and dispositional theories. A lack of validated measures to assess caregiver healthcare information avoidance was noted as contributing to the dearth of empirical work in this area. Common areas of caregiver healthcare information avoidance were identified at various points throughout the pediatric palliative care illness trajectory. The review concludes with directions for future research and practical recommendations for clinical care, highlighting the importance of identifying the occurrence and reasons for caregiver information avoidance as well as optimizing approaches to information provision.

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