Deep Encounter: Exploring the Lived Experience with Sibling of Rare Diseases

• Main Authors: Lim Jia Hui, 林佳慧
• Other Authors: Shyh-Heng Wong
• Format: Others
• Language: zh-TW
• Published: 2018
• Online Access: http://ndltd.ncl.edu.tw/handle/eya7nr

碩士 === 國立東華大學 === 諮商與臨床心理學系 === 106 === The healthy siblings in the family with rare diseases are under a risk of mental health. They are having a different lived experience from the others. Recently, there are still lack of research about healthy siblings of rare diseases. In addition, most of the current research are quantitative-oriented, which can’t really improve our knowing about their special experiences. In this study, semi-structured interviews were conducted to collect the healthy siblings of the rare diseases that come from different families. The collected experiences from the interviewees were rewritten and presented. In order to understand the ethical situation of these healthy siblings, the analysis and interpretation with the phenomenological approach which proposed by Max Van Manen was used in this study. When rare diseases happened in the families, these healthy siblings suffered in a rare condition, which they are confronted with a low incidence disease that is almost impossibly happened. Their life experience is obviously different from the others (the siblings who had no rare disease-siblings, and also the parents who have a rare disease child). These siblings exist as a bystander of this family. They are in an extreme situation that they cannot control and suffers. However, we found that they have the potential to “leap out” from the position of sufferers, and become a witness of the family suffering, which make them to review and re- understanding their suffering in a higher position, then they can live their own life.