Joseph Linju, Krishnan Athira, Lekha Thoniparambil Ravindranathanpillai, Sasidharan Neethu, Thulaseedharan Jissa Vinoda, Valamparampil Mathew Joseph, Harikrishnan Sivadasanpillai, Greenfield Sheila, Gill Paramjit, Davies Justine, Manaseki-Holland Semira, Jeemon Panniyammakal
Sree Chitra Tirunal Institute for Medical Sciences and Technology, Trivandrum, India.
Institute of Applied Health Research, College of Medical and Dental Sciences, University of Birmingham, Birmingham, United Kingdom.
PLoS One. 2024 Jun 13;19(6):e0305430. doi: 10.1371/journal.pone.0305430. eCollection 2024.
Multimorbidity or multiple long-term conditions (MLTCs), the coexistence of two or more chronic conditions within an individual, presents a growing concern for healthcare systems and individuals' well-being. However, we know little about the experiences of those living with MLTCs in low- and middle-income countries (LMICs) such as India. We explore how people living with MLTCs describe their illness, their engagements with healthcare services, and challenges they face within primary care settings in Kerala, India.
We designed a qualitative descriptive study and conducted in-depth, semi-structured interviews with 31 people (16 males and 15 females) from family health centres (FHCs) in Kerala. Interview data were recorded, transcribed, and thematic analysis using the Framework Method was undertaken.
Two main themes and three sub-themes each were identified; (1) Illness impacts on life (a)physical issues (b) psychological difficulties (c) challenges of self-management and (2) Care-coordination maze (a)fragmentation and poor continuity of care (b) medication management; an uphill battle and (c) primary care falling short. All participants reported physical and psychological challenges associated with their MLTCs. Younger participants reported difficulties in their professional lives, while older participants found household activities challenging. Emotional struggles encompassed feelings of hopelessness and fear rooted in concerns about chronic illness and physical limitations. Older participants, adhering to Kerala's familial support norms, often found themselves emotionally distressed by the notion of burdening their children. Challenges in self-management, such as dietary restrictions, medication adherence, and physical activity engagement, were common. The study highlighted difficulties in coordinating care, primarily related to traveling to multiple healthcare facilities, and patients' perceptions of FHCs as fit for diabetes and hypertension management rather than their multiple conditions. Additionally, participants struggled to manage the task of remembering and consistently taking multiple medications, which was compounded by confusion and memory-related issues.
This study offers an in-depth view of the experiences of individuals living with MLTCs from Kerala, India. It emphasizes the need for tailored and patient-centred approaches that enhance continuity and coordination of care to manage complex MLTCs in India and similar LMICs.
多病共存或多种长期病症（MLTCs），即个体同时存在两种或更多慢性疾病，这给医疗系统和个人福祉带来了日益严重的问题。然而，我们对印度等低收入和中等收入国家（LMICs）中患有MLTCs的人群的经历知之甚少。我们探讨了患有MLTCs的人们如何描述他们的疾病、他们与医疗服务的接触，以及他们在印度喀拉拉邦基层医疗环境中所面临的挑战。
我们设计了一项定性描述性研究，并对喀拉拉邦家庭健康中心（FHCs）的31人（16名男性和15名女性）进行了深入的半结构化访谈。访谈数据被记录、转录，并采用框架法进行了主题分析。
分别确定了两个主要主题和三个子主题；（1）疾病对生活的影响（a）身体问题（b）心理困难（c）自我管理的挑战；以及（2）护理协调迷宫（a）护理的碎片化和连续性差（b）药物管理：一场艰苦的战斗（c）基层医疗不足。所有参与者都报告了与他们的MLTCs相关的身体和心理挑战。年轻参与者报告了他们职业生涯中的困难，而年长参与者则发现家务活动具有挑战性。情感挣扎包括源于对慢性病和身体限制的担忧的绝望和恐惧情绪。年长参与者遵循喀拉拉邦的家庭支持规范，常常因给子女带来负担的观念而情绪困扰。自我管理方面的挑战，如饮食限制、药物依从性和体育活动参与，很常见。该研究突出了护理协调方面的困难，主要与前往多个医疗机构就诊有关，以及患者认为FHCs适合管理糖尿病和高血压而非他们的多种病症。此外，参与者难以完成记住并持续服用多种药物的任务，混乱和与记忆相关的问题使这一情况更加复杂。
本研究深入了解了印度喀拉拉邦患有MLTCs的个体的经历。它强调了需要采取量身定制的、以患者为中心的方法，以加强护理的连续性和协调性，从而在印度和类似的低收入和中等收入国家管理复杂的MLTCs。
