The Adventures of Titanic：Narrative Research about Families’ Life of Individual with Prader-Willi Syndrome

• Main Authors: I- Ju Chen, 陳怡如
• Other Authors: Yu-Mei (Yu) Chao
• Format: Others
• Language: zh-TW
• Published: 2003
• Online Access: http://ndltd.ncl.edu.tw/handle/26400024748700258131

碩士 === 國立陽明大學 === 臨床護理研究所 === 91 === The purpose of this qualitative study was to explore the life experience in six families of a member with Prader-Willi syndrome. In this study, the researcher served as a caregiver as well as nurse-participant observer while the researching data was being collected. During this period, the researcher used “in-depth interview” and “participant observation” methods to understand family member’s opinions, experience, and behavior reactions at past-present-future time. In the meantime, the researcher provided consultation and health care as the families needed. The narratives from interviews were tape-recorded and transcribed into verbatim. As well, the spontaneous verbal and non-verbal behavior expressed by these family members were wrote down as field notes. The data were analyzed, classified, and categorized based on narrative analysis. The results were divided into two parts. Firstly, the author used 「Holistic-Content」mode to analyze the description from Family A and applied metaphor to demonstrate the family’s life course－Navigational map of life：Leaving port：Sailing to unknown future、Tsunami：Trial from god、Striking the reef：Lonely Titanic、Being isolated on a island：Interdependent mother and child、Transformation：Adjustment and restart、Hoisting sails：Keeping journey of making dreams coming true. Secondly, the author utilized「Categorical-Content」approach to analyze the narratives from six families to generate two themes as Family Stress and Coping Strategies. The sources of stress including：1.Health status as the source：Complex and multiple health problems、Uncertain medical diagnoses、Incurable and life long disease state、Difficulty from treatments and parenting、Fear on re- pregnancy、Uncertain and unknown future. 2.Family as the source：Loss control of food obsession、Strained relationship between family members、Pressure of discrimination from others. 3.Establishment and society as the source： Lack of knowledge about PWS in public、Being excluded from peer group、Arranging employment without careful assessment of different functional level. 4. Finance as the source：Medical and living expenses. 5.Health care delivery system as the source：Helpless and suffering from medical intervention、Difficulty of applying the allowance of Growth Hormone、Unspecified effectiveness of the over-the-counter medicine、Unreliable health care providers. The coping strategies are as following：Seeking and utilizing resources、 Relocating family repeatedly、Adjusting and learning through life、Deriving unique care pattern. At last, the researcher reflects contemporary nursing function and trend of health care system as from a nurse’s view. The result of this study helps health care professionals getting an in-depth understanding of the families’ life course, being involved in their life experiences, and even promoting a family-centered, cultural sensitive “Family Nurse” system for Taiwan.