Patient, caregiver, and health care provider perspectives on barriers and facilitators to heart failure care in Kerala, India: A qualitative study

Abstract

Background: Deficits in quality of care for patients with heart failure (HF) contribute to high mortality in this population. This qualitative study aimed to understand the barriers and facilitators to high-quality HF care in Kerala, India. Methods: Semi-structured, in-depth interviews were conducted with a purposive sample of health care providers (n=13), patients and caregivers (n=14). Additionally, focus group discussions (n=3) were conducted with patients and their caregivers. All interviews and focus group discussions were transcribed verbatim. Textual data were analysed using thematic analysis. Results: Patients’ motivation to change their lifestyle behaviours after HF diagnosis and active follow-up calls from health care providers to check on patients’ health status were important enablers of high-quality care. Health care providers’ advice on substance use often motivated patients to stop smoking and consuming alcohol. Although patients expected support from their family members, the level of caregiver support for patients varied, with some patients receiving strong support from caregivers and others receiving minimal support. Emotional stress and lack of structured care plans for patients hindered patients’ self-management of their condition. Further, high patient loads often limited the time health care providers had to provide advice on self-management options. Nevertheless, the availability of experienced nursing staff to support patients improved care within health care facilities. Finally, initiation of guideline-directed medical therapy was perceived as complex by health care providers due to multiple coexisting chronic conditions in HF patients. Conclusions: Structured plans for self-management of HF and more time for patients and health care providers to interact during clinical visits may enable better clinical handover with patients and family members, and thereby improve adherence to self-care options. Quality improvement interventions should also address the stress and emotional concerns of HF patients.

Self-management of chronic, non-communicable diseases in South Asian settings: A systematic mixed-studies review

“…Several studies illustrate how a number of South Asians face crippling adversity in pursuing self-management due to limited household budgets, competing domestic expenses and/or a lack of financial independence [ 33 , 55 , 57 , 61 , 63 , 70 – 72 , 75 ]. As a consequence of this adversity, individuals with NCDs face challenges in the timely and regular purchase of essentials such as medicine and self-monitoring equipment [ 55 , 59 , 60 , 63 – 65 , 70 , 72 ] as well as in adhering to recommended dietary regimen [ 55 , 56 , 60 , 61 , 63 , 67 ] (quotes 1.1, 1.2) . Financial hardship also acts as a deterrent to timely health-seeking, especially for rural dwellers and those living on daily wages (quote 1.3) .…”

“…The impact of financial adversity can be offset to some extent for those who have available social or monetary support, either from family members or relatives. Social support in particular was seen to confer benefits through knowledge sharing and motivation (quote 1.5) [ 54 , 55 , 58 , 61 , 65 , 67 , 70 ]—However, many individuals, particularly those who are older or less literate rely on more direct forms of support such as identification and/or administration of medicine or carrying out routine self-monitoring [ 54 , 59 – 61 , 63 , 65 , 67 , 75 ]. The availability of such support, however, is not consistent and tends to be lower for women and those living in less educated, less financially stable households (quote 1.6) .…”

“…The role of healthcare providers in supporting self-management is pivotal and complements the individual’s sense of responsibility towards oneself and others. In South Asian settings, healthcare providers, particularly doctors are authoritative figures on health-related matters—the advice and positive encouragement received from them can be linked to a good understanding of self-management and its importance, as well as to motivated attempts made by individuals to self-manage illness in day-to-day life (quotes 2.1, 2.2) [ 54 , 55 , 61 , 65 , 67 , 72 ]. Despite its relevance, however, the provision of such support is lacking in many South Asian settings.…”

Caregivers' Contributions to Heart Failure Self-care

“…77 Caregivers also reported providing health maintenance behaviors (eg, activities of daily living [ADLs]), which do not appear in self-care maintenance activities 7 such as "providing personal care such as toileting, dressing, bathing" and "basic self-care activities" 29,32,64,78 In keeping with the 2015 synthesis, caregivers' activities continued to fall into the 2 categories of "hands-on" and "hands-off" activities. Although few articles reported "hands-on" self-care maintenance activities, such as caregivers directly administering medications (n = 5/58, 9%), all articles reported "hands-off"' maintenance activities, India (2) 36,41 Iran (4) 14,27,58,63 Italy (3) 15,25,51 Jordan (1) 13 Lithuania (1) 11 Norway (3) 11,42,61 Portugal (1) 54 Slovenia (1) 57 South Korea (1) 33 Sweden (3) 16,30,49 United Kingdom (7) Not specified (1) 38 Australia (1) 24 Japan (1) 32 Sweden (1) 43 United States (4) 22,52,60,67 Sweden (1) 72 United Kingdom (1) 74 United States (5) [68][69][70][71]73 Sample size (range of no. of participants) Mother/father (5) 11,21,…”

“…Although few articles reported "hands-on" self-care maintenance activities, such as caregivers directly administering medications (n = 5/58, 9%), all articles reported "hands-off"' maintenance activities, India (2) 36,41 Iran (4) 14,27,58,63 Italy (3) 15,25,51 Jordan (1) 13 Lithuania (1) 11 Norway (3) 11,42,61 Portugal (1) 54 Slovenia (1) 57 South Korea (1) 33 Sweden (3) 16,30,49 United Kingdom (7) Not specified (1) 38 Australia (1) 24 Japan (1) 32 Sweden (1) 43 United States (4) 22,52,60,67 Sweden (1) 72 United Kingdom (1) 74 United States (5) [68][69][70][71]73 Sample size (range of no. of participants) Mother/father (5) 11,21,26,39,53 Sibling (4) 21,38,44,53 Grandchildren (5) 35,46,48,…”