Journal Article

Experiences and challenges of people living with multiple long-term conditions in managing their care in primary care settings in Kerala, India: A qualitative study

Thulaseedharan, Jissa Vinoda, Krishnan, Athira, Davies, Justine, Lekha, Thoniparambil Ravindranathanpillai, Harikrishnan, Sivadasanpillai, Gill, Paramjit, Manaseki-Holland, Semira, Jeemon, Panniyammakal, Greenfield, Sheila, Joseph, Linju, Valamparampil, Mathew Joseph, Sasidharan, Neethu

2024

Overview

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.

• Publisher: Public Library of Science
• Subject: Adult / Aged / Analysis / Biology and Life Sciences / Chronic conditions / Chronic Disease - psychology / Chronic Disease - therapy / Chronic diseases / Chronic illnesses / Coexistence / Comorbidity / Coordination / Cross-sectional studies / Data analysis / Data collection / Diabetes / Diabetes mellitus / Diet / Dietary restrictions / Emotions / Exercise / Expenditures / Female / Females / Health care / Health care facilities / Health care industry / Health facilities / Health services / Humans / Hypertension / Illnesses / India / Infectious diseases / Interviews / Male / Medicine and Health Sciences / Memory / Mental disorders / Mental health / Middle Aged / Multimorbidity / Multiple Chronic Conditions - epidemiology / Multiple Chronic Conditions - psychology / Multiple Chronic Conditions - therapy / Patient compliance / Patients / People and Places / Physical activity / Primary care / Primary Health Care / Qualitative Research / Quality of life / Self-Management / Social aspects / Social Sciences / Well being