Ridgeway Jennifer L, Egginton Jason S, Tiedje Kristina, Linzer Mark, Boehm Deborah, Poplau Sara, de Oliveira Djenane Ramalho, Odell Laura, Montori Victor M, Eton David T
The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, Rochester, MN, USA ; Division of Health Care Policy and Research, Department of Health Sciences Research, Mayo Clinic, Rochester, MN, USA.
Department of Anthropology, Université Lumière Lyon 2, Lyon, France.
Patient Prefer Adherence. 2014 Mar 19;8:339-51. doi: 10.2147/PPA.S58014. eCollection 2014.
Patients with multiple chronic conditions (multimorbidity) often require ongoing treatment and complex self-care. This workload and its impact on patient functioning and well-being are, together, known as treatment burden. This study reports on factors that patients with multimorbidity draw on to lessen perceptions of treatment burden.
Interviews (n=50) and focus groups (n=4 groups, five to eight participants per group) were conducted with patients receiving care in a large academic medical center or an urban safety-net hospital. Interview data were analyzed using qualitative framework analysis methods, and themes and subthemes were used to identify factors that mitigate burden. Focus groups were held to confirm these findings and clarify any new issues. This study was part of a larger program to develop a patient-reported measure of treatment burden.
Five major themes emerged from the interview data. These included: 1) problem-focused strategies, like routinizing self-care, enlisting support of others, planning for the future, and using technology; 2) emotion-focused coping strategies, like maintaining a positive attitude, focusing on other life priorities, and spirituality/faith; 3) questioning the notion of treatment burden as a function of adapting to self-care and comparing oneself to others; 4) social support (informational, tangible, and emotional assistance); and 5) positive aspects of health care, like coordination of care and beneficial relationships with providers. Additional subthemes arising from focus groups included preserving autonomy/independence and being proactive with providers.
Patients attempt to lessen the experience of treatment burden using a variety of personal, social, and health care resources. Assessing these factors in tandem with patient perceptions of treatment burden can provide a more complete picture of how patients fit complex self-care into their daily lives.
患有多种慢性病(共病)的患者通常需要持续治疗和复杂的自我护理。这种工作量及其对患者功能和幸福感的影响合称为治疗负担。本研究报告了共病患者用来减轻治疗负担感的因素。
对在大型学术医疗中心或城市安全网医院接受治疗的患者进行了访谈(n = 50)和焦点小组讨论(n = 4组,每组五至八名参与者)。访谈数据采用定性框架分析方法进行分析,通过主题和子主题来确定减轻负担的因素。举行焦点小组讨论以确认这些发现并澄清任何新问题。本研究是开发患者报告的治疗负担测量方法的一个更大项目的一部分。
访谈数据中出现了五个主要主题。这些主题包括:1)以问题为中心的策略,如使自我护理常规化、争取他人支持、规划未来以及使用技术;2)以情绪为中心的应对策略,如保持积极态度、关注生活中的其他优先事项以及精神/信仰;3)质疑治疗负担是适应自我护理并与他人比较的一种功能的观念;4)社会支持(信息、实际和情感援助);5)医疗保健的积极方面,如护理协调以及与提供者的有益关系。焦点小组讨论产生的其他子主题包括保持自主性/独立性以及积极与提供者沟通。
患者试图利用各种个人、社会和医疗保健资源来减轻治疗负担的体验。将这些因素与患者对治疗负担的认知一起评估,可以更全面地了解患者如何将复杂的自我护理融入日常生活。