Getting Better Slowly: Lived Experiences of Families of Persons with Guillain-Barre Syndrome

Abstract

Landry-Guillain-Barre-Strol Syndrome or simply Guillain-Barre Syndrome (ghee’-yan bah-ray’), refers to a rare, neurodegenerative autoimmune disorder typified by the unexpected onset of abnormal sensations such as weakness, tingling or pain and in severe cases, paralysis starting from the legs to the arms, neck and breathing muscles. There are a number of studies on GBS and other related diseases mostly focusing on the medical aspect. However, there is a dearth of information regarding the social aspect of the condition, such as the changes in the family life and the ways that the people involved undertake to minimize the impact or adapt to the condition especially in the context of the Philippine setting. A phenomenological approach was used to explore the experiences of these families and determine the coping techniques they employed in dealing with this life event. A semi structured in depth interview was conducted to the adult family members of persons with GBS affiliated with the GBS/CIDP Support Group Philippines. Interviews were manually transcribed and transcripts were analyzed. The presentation were divided into four different sections namely the family’s concept of the disease, the emotional experience of the families, the problems or changes faced by the families and lastly the coping mechanisms the families employed to deal with the situation. Each presentation has its corresponding themes and subthemes to further elaborate about the topic. This study demonstrates how difficult it is for families to cope with the changes and problems brought about by the event from the diagnosis, treatment and recovery phase of Guillain-Barre Syndrome. Both problem focused and emotion focused strategies were used by the families to cope with the difficulties. Thus, it is important to engage the whole family in interventions that will help them cope with the disease.