A Phenomenological Study on the Experiences of Caregivers in Pain Communication with Nonverbal Individuals with Autism

Abstract

This study is a qualitative study on the experience of caregivers in pain communication with nonverbal individuals with autism. The framework used in the study is derived from the Social Communication Model of Pain which focuses on the caregiver’s role in the pain assessment stage, and the two main factors that affect it: the caregiver’s perspective, and the caregiver’s environment. The mode of data collection was mainly through semi-structured interviews among six caregivers in the municipalities of Las Piñas and Parañaque. The study utilized a phenomenological approach as its main methodology. Data collected underwent thematic analysis to reveal three main themes that are supported by the objectives of this study. These main themes are the caregiver’s perspective, the current social setting in understanding the pain experience, and the experience of pain assessment itself. These themes have formed several subthemes that describe the experience of caregivers in pain communication, which reveals their belief that the pain tolerance of nonverbal children with autism is higher despite the lack of consistent scientific basis. Additionally, in terms of their emotional disposition, participants experience feelings of distress, which overlap with the pain assessment process. Their protective factors in caring for the child overlaps with the frustration and stress brought by the pain experience.