Pain in non-verbal children with severe multiple disabilities : a qualitative study of parents perceptions about pain in their non-verbal child with severe multiple disabilities and how pain affects activities of daily living in the family

Abstract

Title: Pain in non-verbal children with severe multiple disabilities. A qualitative study of parents perceptions about pain in their non-verbal child with severe multiple disabilities, and how it affects activities of daily living in the family. Purpose: The purpose of this master thesis is to describe parents‟ experiences with pain in children with severe multiple disabilities, and how they perceive that pain affects naturally occurring activities of daily living in the family. This knowledge can help more effective healthcare provision for pain that better meets the needs of the family. Research questions: This project explored the following two research questions: How do parents perceive and communicate about pain and discomfort in a non-verbal child with severe multiple disabilities? How does pain and discomfort in a non-verbal child with severe multiple disabilities affect activities of daily living in the family? Theoretical Framework: This project views a child with severe multiple disabilities within the context of his or her family, and in mutual relation to other systems as presented in Bronfenbrenner‟s Ecological Developmental Model (1979). The first research question is based on perspectives on interaction and symbolic interactionism. The second research question includes perspectives on interaction, coping and caregiving. Method: This project is a qualitative study involving parents of school-aged children with severe multiple disabilities experiencing pain or discomfort. Data collection occurred through semi-structured life world interview technique. The data were analyzed by a phenomenological approach, utilizing a thematic analysis inspired by Giorgi (1975) as described by (Malterud, 2008). Findings: Pain in a child with severe multiple disabilities appears to have a negative effect on naturally occurring activities of daily living in the family. Parents have expert practical knowledge regarding their child and identifying and handling pain behaviors and appearances within the context of naturally occurring activities of daily living in the family.