The Loss Experience and Adjustment Process of Families Suffered with Mitochondrial Diseases

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题名:	The Loss Experience and Adjustment Process of Families Suffered with Mitochondrial Diseases
作者:	HUANG, HSIAO-PING
贡献者:	心理學系
关键词:	adjustment;family dynamic;loss;meaning construction;rare disease
日期:	2017
上传时间:	2017-09-13 03:49:41 (UTC+0)
出版者:	亞洲大學
摘要:	The purpose of this study was to explore the loss experiences, adjustment process of rare disease patients and families, and to understanding the patient’s & caregiver’s grief and adjustment and how they influence each other. The study was conducted on the qualitative study of semi-structured interviews. Two patients and their mother were invited to participate in this research. The phenomenology analysis method was conducted to collect and analyze the research data. The results were summarized as follows: I.Experience of loss With the developmental stage of the patient's life, the patients and their families experienced different levels of loss. The impact of secondary loss was greater than the disease itself, and the suicide of patients was difficult for their family members to endure. Meanwhile, the experience was an issue that could not be discussed in the family. II.The families’ grieving reaction The reaction of loss for the patient and the mother can be divided into three stages: the early stage of the disease, the disease change/degeneration period, and the diseased period. The cognitive development of children and their siblings’ diseased experiences will affect the child's reactions of loss, and they often used "neglected" reaction mechanisms for self-protection; the mother’s reactions range from a combination of denial to various other complex emotions. The reactions of loss are individualized and unique, and there are different reactions of loss between different genders. III.The process of meaning making for their diseases A.The interpretation of the loss is consistent with the original view of life, and can temporarily protect the patient and caregiver from any negative experiences. B.The benefit of the discovery helps the patient to transform the negative experiences and promote self-growth. C.The connotation of the benefits of the caregiver and the patient in the loss experience are different. D.The change of self-identity is a key indicator of the growth and adjustment. IV.The influential factors in the adaptation process A.Personal factors include: personality traits, age of disease onset; attribution; coping strategies. B.Family factors include: family support; closed family communication; family economic status. C.Social and cultural factors include: social interpersonal support; the folk religion and the traditional health care; the public lack of understanding of rare diseases. D.Social resource factors include: school counseling resources; more limited use of social welfare, in which the sick may not be able to benefit from. V.Family dynamics change A.Couple subsystem: relationship between husband and wife from conflict / alienation transition to complementary cooperation / intimate support. B.Parent-child subsystem: closed and vague communication makes misunderstanding and tension, and with the child's growth stage, parent-child relationship shows a dynamic change. C.Sibling subsystem: due to illness and life frustration, sick children will turn the frustration emotions to the healthy sibling. The sick sibling becomes the power to support each other. Finally, based on the research findings, there are suggestions for helping professionals and future researches.
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