How the mothers of the patients with Russell-Silver syndrome develop resilience in the caring delimma? An exploratory study

• Main Authors: Hsin-Yu Lee, 李心妤
• Other Authors: Hui-Ming Pan
• Format: Others
• Language: zh-TW
• Published: 2014
• Online Access: http://ndltd.ncl.edu.tw/handle/24941094395380056447

碩士 === 中原大學 === 特殊教育研究所 === 102 === The purpose of this research was to understand how the mothers of the patients with Russell-Silver syndrome develop resilience from caring dilemma. The narrative research methodology was conducted. Three mothers of the patients with Russell-Silver syndrome were interviewed by using semi- structured in- depth interview and nine narrative texts were obtained. Based on the narrative texts the life stories of the three mothers and the diagram of developing process of their resilience could be outlined. After analyzing and interpretation of the narrative focus the conclusions of this study are as follows: ( a ) The caring dilemma of the mothers of the patients with Russell-Silver syndrome include: physiological burden, complex and negative psychological experiences, frustrated human interaction, heavy economic burden, continuingly difficult medical problems and unfriendly social environment； ( b ) There are three resilience factors from which the mothers of the patients with Russell-Silver syndrome gain the strength to overcome the caring dilemma: personal characteristics , family support and social support; ( c ) The mothers of the patients with Russell-Silver syndrome show positive adaptation to the caring dilemma in ten aspects : the ability to adapt mood is getting better, internal focus of control, changed attitude and practice of caring, improved tolerance, active help-seeking behavior, sense to enjoy life events, enjoyment of the intimate parent-child relationship, development of future perspectives for their child , and the willingness to share caregiving experiences; （d）The mothers of the patients with Russell- Silver syndrome develop resilience in a cyclic process in which a caring dilemma interacts with the resilience factors and move toward the positive adaptation.