DOI: 10.14288/1.0447090
title: Caregivers’ and nurses’ perceptions of the Smart Discharges Program for children with sepsis in Uganda: A qualitative study

description: &lt;strong&gt;Background:&lt;/strong&gt; Sepsis arises when the body’s response to an infection injures its own tissues and organs. Among children hospitalized with suspected sepsis in low-income country settings, mortality rates following discharge are high, similar to mortality rates in hospital. The Smart Discharges Program uses a mobile health (mHealth) platform to identify children at high risk of post-discharge mortality to receive enhanced post-discharge care. This study sought to explore the perceptions and experiences of the caregivers and nurses of children enrolled into the Smart Discharges Program and the program’s effect on post-discharge care. &lt;br&gt; &lt;br&gt;&lt;strong&gt;Methods:&lt;/strong&gt; We conducted an exploratory qualitative study, which included in-person focus group discussions (FGDs) with 30 caregivers of pediatric patients enrolled in the Smart Discharges Program and individual, semi-structured interviews with eight Smart Discharges Program nurses. The study was carried out at four hospitals in Uganda in 2019. &lt;br/&gt; &lt;br&gt;&lt;strong&gt;Findings:&lt;/strong&gt; Following thematic analysis, three key themes pertaining to the Smart Discharges program were identified: (1) Facilitators and barriers to follow-up care after discharge; (2) Changed caregiver behavior following discharge; and (3) Increased involvement of male caregivers. Facilitators included telephone/text message reminders, positive nurse-patient relationship, and the complementary aspects of the program. Barriers included resource constraints and negative experiences during post-discharge care seeking. With regards to behavior, when provided with relevant and well-timed information, caregivers reported increased knowledge about post-discharge care and improvements in their ability to care for their child. Enrolment in the Smart Discharges Program also increased male caregiver involvement, increased provision of resources and improved communication within the family and with the healthcare system. The Smart Discharges approach is an impactful strategy to improve pediatric post-discharge care, and similar approaches should be considered to improve the hospital to home transition in similar low-income country settings.&lt;br/&gt; &lt;br&gt;&lt;strong&gt;Data Collection Methods:&lt;/strong&gt; Facilitators of the same sex as the participants moderated the FGDs in the local language. Individual interviews with nurses were conducted by a social scientist in English. A focus group discussion guide and a semi-structured interview guide were used to provide structure and consistency to the discussion/interviews while allowing for novel concepts to be shared. Topics in the interview and FGD guides were developed by senior investigators who have expertise in the field of pediatric sepsis. The FDG guides focused on experiences at the admitting facility, experiences after discharge, processes involving referral for post-discharge clinical care, and barriers to post-discharge care. Interview guides focused on the experience of providing caregiver education and counselling, and reporting of which programmatic components worked well and did not work well. Nurse interviewees were also asked about their observations of the benefits and challenges of the program to the caregivers. Due to budget and logistical constraints, the FGD and interview guides were not pre-tested prior to use and no repeat interviews were done. FGDs and interviews were audio recorded and transcribed directly in English by a professional translator and then reviewed for accuracy and consistency. Using a thematic analysis approach, initial open coding of transcripts was done by two investigators. During analysis, data was organized using NVivo version 12.0 (QSR, Massachusetts, United States). After development of the coding framework and initial coding, themes were proposed, and discussed between three investigators who jointly agreed on the study themes and then confirmed full team agreement on the final themes. &lt;br/&gt; &lt;br&gt;&lt;strong&gt;Ethics Declaration:&lt;/strong&gt; Ethical approval was obtained from the the Makerere University School of Public Health, Research and Ethics Committee (SPH-REC # 691) and the Uganda National Council for Science and Technology (UNCST SS #5047).