從社會資本解析罕見疾病患者的網絡支持

Analysis of Social Network Support for Rare-Disease Patients From a Social Capital Perspective

社會資本是一種存在於社會網絡中的資源，透過個體彼此的關係互動與信任，交換資訊與資源，有助於成員達成期望目標。而社會資本主要由網絡關係、人際信任及規範等社會組織的特質所構成，可當作個人的資源背景。過去有學者提到，社會資本會影響個人健康，良好的社會資本可以增加個人的存活率、提高生活品質和降低壓力源，並與健康產生正相關。而本篇文章主要是以罕見疾病為例，探討社會資本、弱勢族群或罕見疾病的健康關係，期望從社會層面的角度瞭解社會資本在個體健康及醫療服務利用中所扮演的角色，進而提供臨床照護此類病患及其家屬之參考。

Social capital, a social network-based resource, facilitates online interactions through mutual interaction and trust, promotes exchanges of information and resources, and helps the members of discrete social networks achieve their goals. Social capital, which is generated mainly through network-based relationships, interpersonal trust and norms, and other social organizations, may be accessed and used as a personal resource. Some scholars have asserted that social capital affects personal health, with individuals with strong social capital experiencing improved rates of survival, better quality of life, and lower stressors. Moreover, social capital has been positively correlated with overall personal health. This article uses rare-disease patients as its sample to explore the health-related relationships among social capital, vulnerable groups, and rare diseases. It is expected to clarify from a social perspective the role of social capital in the utilization of individual health and healthcare services and to provide a reference for the clinical care of these patients and their families.