Exploring the opinion of stakeholders about self-care, home care and hospital management of heart failure patients: A qualitative study

Abstract

Introduction Heart failure is a widespread chronic cardiac illness with varying etiologies. If the HF patients manage themselves at home by following the appropriate advice by healthcare professionals, they tend to have better quality of life and less readmissions. This study was aimed to identify and explore practices of self-management by heart failure patients, home management of heart failure by their family caregivers and hospital management by healthcare providers. Methods A qualitative study was conducted in a tertiary care center in Northern India on participants (patients, their family caregivers, doctors and nurses) who were recruited purposively and interviewed individually by principle investigator using semi-structured questionnaires. Interviews were audio recorded and transcribed after taking informed consent. Iterative process including coding, reviewing and analyzing was done by four researchers and themes were finalized. Results Total 41 participants (15 patients, 12 family caregivers, 4 doctors and 10 nurses) completed the interviews. It was observed that patients and family caregivers were not able to manage heart failure efficiently. Nurses and doctors reported many barriers to provide specialized care to these patients. Discussion There were definite barriers and challenges in the management of heart failure symptoms by the stakeholders. For the patients and family members who suffer this debilitating illness, managing heroically is a challenge. It is important to develop self-care management protocol for the heart failure patients. Healthcare professionals must overcome the barriers to train patients and family caregivers. Multidisciplinary integration can fulfill the gap in providing care to such patients.

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,…”

“…Sharing tracked information during appointments, sending information using portals/telemonitoring systems/ apps 11,16,26,41,46,55,59 In response to signs/symptoms, managing telemonitoring apps 26,27,30,31,37,41,51,55,59,64,72 Tracking clinical data Vital signs, weight, urine output, symptoms 11,26,37, 40,41,72,73 26,37 Training/mastery Developing strategies, overseeing devices 11,25,26…”

“…To do monitoring, to recognize signs/symptoms activities emerged from the data across studies: (1) collecting or tracking clinical data such as using/ managing technology or systems that collected or tracked clinical data, 11,25,26,29,37,40,41,46,55,56,72,73 (2) monitoring for signs/symptoms of HF such as physical assessments (eg, listening to the patient's heart) or routine observations for signs/symptoms, and (3) communication with providers (either active or passive) to facilitate ongoing clinician awareness of the patient's condition (eg, sharing tracked information during appointments and using portals or telemonitoring systems/apps to send monitored information to providers). Importantly, communication activities in the latter category were distinct from symptom management-related communication in that they were part of regular monitoring activities that occurred independent of changes in the patient's condition.…”