Abstract
Background
Sub-optimal self-care and non-adherence to treatments are important predictors of poor clinical outcomes in patients with heart failure. Task-sharing and technology have each contributed modest improvements, but the combined effect on outcomes is unknown. We aim to develop a complex intervention package to improve self-care predicated on task sharing and smartphone based remote monitoring among heart failure patients.
Purpose
As a formative step, we conducted a qualitative study among heart failure patients and their caregivers to explore self-care and to inform the development of a contextualized intervention package.
Methods
We conducted in-depth interviews among 22 patients admitted to in-patient wards with a clinical diagnosis of chronic heart failure (diagnosis made at least 1 month prior to index hospitalization) and 18 caregivers (n=40), sampled from 4 states in southern India. Patients were purposively sampled based on sex, socioeconomic status, health literacy and past one month's history of adherence to heart failure medications. The middle range theory of self-care informed the drafting of the interview guide. We recorded and transcribed interviews translated from 5 regional languages. We inductively coded the data from a social constructionist viewpoint, created categories, prepared memos, compared extreme cases, identified key emergent themes and their inter-relationships.
Results
Patients' mean age was 60.5 (±13.4), with representation from socioeconomic strata, urban and rural areas. Patients had a high pill burden [median 10; IQR (6, 31)] and 8 (44%) reported irregular adherence to prescribed medications in the last month. Key categories associated with sub-optimal self-care included “Passivity”, “Entrenched Belief systems”, “Negative Emotions/Affect”, “Ageing causes disease”, and “inability to control situations” across all socioeconomic strata. These themes appear to impair self-actualization that negatively impacts self efficacy/confidence and in turn self-care reciprocally (Refer Figure). Key facilitators of self-care were: Intrinsic patient distinctive facilitators (situational awareness, resilience) and extraneous facilitators (insurance/financial protection, positive caregiver relationships and ease of healthcare access). Patients and caregivers generally expressed their readiness to use mobile technology for remote monitoring and to be counseled by trained lay workers to address beliefs and be trained on self-care.
Framework explaining self-care in HF
Conclusions
Findings from this formative study show opportunities for providers and community-based care workers to address task-sharing of beliefs by educating patients on self-care, including through the use of technology-based solutions. These findings regarding a self-care framework identify opportunities to improve self-care among heart failure patients using task-sharing and technology to support the patient-caregiver-provider triad.
Acknowledgement/Funding
India Alliance - Wellcome Trust and Department of Biotechnology
Digital Health: Implications for Heart Failure Management
