Parent Knowledge and Understanding of Suffering in Their Non-Verbal Child with Special Needs: A Qualitative Descriptive Study

Abstract

Background. Suffering is a phenomenon of central concern of nursing. Non-verbal children with special needs are particularly vulnerable to unrecognized suffering. Parents are ideal informants of the presence or absence of suffering in this population. Objective. The objective of this study was to describe parent knowledge and understanding of suffering in their non-verbal child with special needs. Methods. This study used a qualitative descriptive (QD) design, with in-depth, interviews with semi-structured interview questions. Six parents across five interviews were conducted. A structured questionnaire was used to collect demographic data related to the health of the child in question. Content analyses were utilized to gain an understanding of the research topic. Results. Abductive reasoning using Carper’s Patterns of Knowing was described by the participants as facilitative to knowing and understanding suffering in the participant’s non-verbal children. Cues and their interpretation were described as well as factors that limit or facilitate knowing about the presence or absence of suffering. Outcomes. The goal of this study was to describe the cues and their interpretation that parents use to understand and know suffering in their non-verbal child with special needs, therefore increasing understanding of suffering in populations that cannot verbally communicate. These findings will be submitted to the University of Arizona dissertation library and manuscripts submitted to appropriate journals.