The University of Texas at Austin School of Nursing, Austin, Texas, USA.
Res Nurs Health. 2024 Oct;47(5):563-572. doi: 10.1002/nur.22409. Epub 2024 Jul 2.
Understanding how persons aging with a chronic condition view their health is essential for planning and delivering person-centered care. The purpose of this study was to explore how persons aging with the chronic and disabling condition multiple sclerosis (MS) describe their health and how this has changed over time using data from Years 1 to 26 of an ongoing longitudinal survey study of health promotion and quality of life for persons with MS. The survey included measures of perceived meaning of health, self-rated health, health behaviors and quality of life outcomes. The sample included 168 persons with MS who returned the survey at Time 1 (1996) and again at Time 26 (2022). In 2022, participants had a mean age of 70.13 (SD = 8.19) and had been diagnosed with MS for an average of 34.47 years (SD = 6.27). Sixty percent of participants rated their overall health as good or excellent. Decreases in health self-ratings over time were not significant. Participants consistently agreed more strongly with items reflecting a wellness-oriented view of health than those reflecting a more clinical/biomedical model. At both time points, clinical definitions of health were negatively related and wellness definitions were positively related to reported frequency of health behaviors. Findings suggest that persons aging with the chronic condition of MS may be more responsive to health messages that emphasize function in daily living, carrying out normal responsibilities, and adjusting to changes in environment and demands. Patient or Public Contribution: Persons with MS provided study data, input on design, and construct measurement.
了解患有慢性疾病的人如何看待自己的健康对于规划和提供以患者为中心的护理至关重要。本研究的目的是探讨患有慢性和致残性疾病多发性硬化症(MS)的人如何描述他们的健康状况,以及随着时间的推移,他们的健康状况如何发生变化,使用的是一项正在进行的多发性硬化症患者健康促进和生活质量纵向调查研究的第 1 年到第 26 年的数据。该调查包括对健康意义的感知、自我评估的健康状况、健康行为和生活质量结果的衡量。样本包括 168 名多发性硬化症患者,他们在第 1 次(1996 年)和第 26 次(2022 年)返回调查。2022 年,参与者的平均年龄为 70.13(SD=8.19),平均被诊断出多发性硬化症的时间为 34.47 年(SD=6.27)。60%的参与者将他们的整体健康状况评为良好或优秀。随着时间的推移,健康自评的下降并不显著。参与者始终更强烈地同意反映健康导向观点的项目,而不是更符合临床/生物医学模型的项目。在两个时间点,健康的临床定义与报告的健康行为频率呈负相关,而健康的健康定义与报告的健康行为频率呈正相关。研究结果表明,患有多发性硬化症这种慢性疾病的人可能对强调日常生活功能、履行正常责任以及适应环境和需求变化的健康信息更敏感。患者或公众的贡献:多发性硬化症患者提供了研究数据、设计投入和结构测量。