The Qualitative and Quantitative Research Related to Notify Dementia Disease

• Main Authors: CHEN, MIAO-CHUAN, 陳妙絹
• Other Authors: LIN, HUNG-RU
• Format: Others
• Language: zh-TW
• Published: 2019
• Online Access: http://ndltd.ncl.edu.tw/handle/ts8y33

博士 === 國立臺北護理健康大學 === 護理研究所 === 107 === Background: Dementia is a serious disease that causes disabilities. It affects a person’s ability to remember, think, act, and perform daily living activities, which creates financial and care-related problems for patients, their families, caregivers, and communities. Clinical professionals and families are always in a dilemma when deciding whether to disclose to patients their diagnosis. While most people prefer to receive a full diagnostic disclosure, the actual care requirements of patients and their caregivers, based on their perspectives, are often unknown. Hence, the requirements of dementia diagnosis disclosure, acceptance methods, and care requirements remain unclear. Research objectives and design: This study was conducted in two stages. During the first stage, which was based on Grounded Theory, in-depth interviews on diagnostic disclosure were conducted with patients, their family caregivers, and professionals, so as to analyze the care requirements of Taiwanese dementia patients and their caregivers. Purposive sampling was adopted in the second stage, during which a cross-section survey was administered to community dwellers aged 60 years and above, dementia patients, and the family caregivers of patients, so as to understand and compare the differences between their opinions and attitudes on dementia diagnosis disclosure. The results from both stages were interpreted to develop suitable diagnostic disclosure methods and healthcare approaches for Taiwanese dementia patients, in addition to providing considerations for future practical services. Results: 57 participants were recruited for the the first-stage qualitative study. After the participants’ data were consolidated and analyzed, “Diagnostic disclosure: Transformation in the face of disease impacts” was established as a core category to reveal and describe the diagnostic disclosure process experienced by dementia patients, their caregivers, and professionals. Diagnostic disclosure had helped the patients to undergo personal transformations to face the impact of the disease, and to seek adaptive and interactive methods to delay the deterioration of the disease, such that they were able to accept and live with the disease. “Decision to seek treatment” was a predecessor category; “Moment of disclosure,” “Transmission of information,” and “Maintenence of operation” were interaction/action categories. Diagnostic disclosure provided a clear direction for patients after they had comprehended the changes in the course of the disease and the disease symptoms. “Support and living” was a result category that covered the diagnostic disclosure experience. 139 responses were collected through the second-stage survey. The results showed that, compared to dementia patients, the general public prefers to receive diagnostic disclosure if they are diagnosed with dementia (p < .05); in terms of the attitudes of caregivers and dementia patients, statistically significant differences were observed in their expectations regarding diagnostic disclosure and their expectations regarding advance care planning and discussion (p < .05); compared to caregivers, the general public tends to disclose a dementia diagnosis to a family member who has been diagnosed with dementia (p < .05). Conclusion and recommendations: The discussions with professionals, dementia patients, and caregivers on dementia diagnosis provided a multi-perspective view on the state of patients and caregivers, allowing for more appropriate methods of diagnostic communication and care to be developed. An early and thorough disclosure is beneficial for understanding the disease and making action plans. The proactive “maintenence of operation” after diagnosis is the common goal of doctors and patients. Proactive care measures such as timely management, guidance and interactive strategies, and the disclosure of applicable relevant information have been found to reduce anxiety in patients and caregivers and, consequently, provide directions for both parties to proactively adapt to and live with dementia after diagnostic disclosure.