Stressors Coping and Needs of the Families with Rare Disorders Author:Fin-Land Cheng, Meng-Fan Tsai, Huei-Ling Agnes Tsai
Research Article
This current study aims to survey the stressors coping and needs of the families with rare disorders. The study interviewed 36 people from 21 families of the patients with rare disorders in the Kaohsiung City. The research team stands to the ethic code during the data collecting processes to protect the interviewee’s rights and privacy while ensuring the accuracy of the content. Interview data were coded, conceptualized, categorized, validated for reliability and validity. The study concluded that the biggest stressor of the families with rare disorders comes from taking care of the patient. Families hope for a more adaptable social welfare policy and to provide respite services such as temporary care release for the family. Secondly, families ecological system was impacted, the family burden would be lessened if family events such as having new baby, balancing family finance and relationship could be shared among family members. Thirdly, social acceptance and acknowledgment of rare disorders through propaganda would help relief family stress. Fourthly, improved quality and resources of medical service to support families’ emotional and medical informational needs are required to fulfill families’ demand for respectful and empathetic medical care. In all, families with rare disorder patients need a strong, comprehensive, and caring social welfare, educational, and medical system to support their heavy burden in taking care of their families with rare disorder.