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

摘要

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