A qualitative, grounded theory exploration of the determinants of self-care behavior among Indian patients with a lived experience of chronic heart failure

Abstract

Background Prior reports have documented extremely poor adherence to evidence-based medications among South Asian patients with established chronic cardiovascular diseases. Treatment adherence is now considered a part of the ‘self-care’ process, the determinants of which have not been adequately explored or explained among South Asian patients with chronic heart failure (CHF). Our objective was to qualitatively ascertain the determinants of the self-care process among Indian patients with a lived experience of heart failure. Methods We conducted in-depth interviews (audio-recorded) among 22 purposively sampled patients living with chronic heart failure, diagnosed at least 4 weeks prior to the interview and 17 caregivers (n = 39) in a tertiary care teaching hospital in Southern India. We employed an inductive analytical approach using Charmaz’s constructivist grounded theory. Initial line-by-line coding and categorization was followed by memo writing, reflexive analysis after interviewing and analyzing four, eight and twelve patients, and at each stage further theoretical sampling was carried out until we reached thematic saturation. We used NVivo ver. 12 to analyze and organize data. Results The mean age of our patients was 61 years and they represented 5 Indian states and spoke seven languages, distributed across socio-economic strata and literacy levels. We classified self-care determinants into 3 broad, simple categories and defined underlying themes namely, negative determinants (passivity, entrenched beliefs, negative affect, lack of knowledge, financial difficulties, and fatalism), intermediate factors (patient expectations, provider/hospital hopping) and facilitators or positive self-care determinants (intrinsic and extrinsic facilitators). Gender and the cultural background of patients’ upbringing appear to shape these determinants, thereby affecting self-care decision making in chronic heart failure. Conclusion We have empirically described a unique set of self-care determinants among Indian chronic heart failure patients, which in turn are shaped by economic and socio-cultural factors. Assessing for and addressing these determinants during clinical interactions through multi-factorial approaches may help improve self-care among Indian CHF patients, thus improving treatment adherence and clinical outcomes.

Self-Care Activities by Patients with Chronic Cardiovascular Morbidities: Explanatory Sequential Facility-Based Mixed Method Study in West Bengal, India

“…In this study, the major hindering factors behind regular practice of self-care activities were false belief about heart disease, lack of motivation, lack of proper knowledge and emotional disturbances and Covid-19 pandemic impacts. In compatible with our study, a similar study 26 in a tertiary care setting in Bengaluru classified self-care determinants into three broad categories -negative determinants (passivity, entrenched beliefs, negative affect, lack of knowledge, fatalism, financial difficulties), intermediate factors (patient expectations, hospital hopping) and facilitators (intrinsic and extrinsic). Gender and cultural background of patients' up-bringing appeared to shape these determinants and thereby affecting their self-care decision making.…”

“…Several studies from Nepal, China, Canada, Ethiopia, Bengaluru, Chennai and West Bengal (India) hint about varying degree of awareness and practice in self-care activities by patients with chronic cardiovascular morbidities. [21][22][23][24][25][26][27][28][29] In this study, lack of awareness regarding weight monitoring, immunization and dietary practice was found among the patients. This is fairly consistent with the findings of a study 21 in Pakistan which has also narrated low awareness among hypertensive patients for self-care.…”

Experiences of Facilitators and Inhibitors to Treatment Adherence in Patients with Heart Failure

“…Based on a study by Kamath et al, trust in health care providers was identified as a positive factor in adhering to a long-term treatment plan. Health care providers can build trust with patients and their caregivers by appropriate communication and involving them in self-care behaviors (Kamath et al, 2021). The results of these studies are in accordance with our findings.…”

Presentation, Management, and In-Hospital Outcomes of Patients with Acute Heart Failure in South India by Sex: A Secondary Analysis of a Prospective, Interrupted Time Series Study

“…A secondary analysis of The Guiding Evidence-Based Therapy Using Biomarker Intensified Treatment (GUIDE-IT) trial demonstrated therapeutic inertia to be a key barrier in achieving optimal GDMT rates [31]. Qualitative research exploring self-care behaviors of patients with HF via in-depth interviews (n = 22, 41% female) in South India suggests most female HF patients were passive recipients of health information and frequently relied on a male caregiver (husbands or sons) to oversee HF management including fluid/diet restrictions and medication administration [35]. Further study is needed to understand whether sex-specific HF behavioral interventions may complement existing and new implementation strategies to improve the GDMT treatment gap.…”