“I abandoned my job to look after my baby.” Understanding the unpriced cost of care of a preterm infant: Caregivers’ lived experiences

PLOS ONE RESEARCH ARTICLE “I abandoned my job to look after my baby.” Understanding the unpriced cost of care of a preterm infant: Caregivers’ lived experiences Flaviah B. Namiiro ID1*, Andrew S. Ssemata2,3, Yaser Abdallah1, Fatuma Namusoke4 1 Department of Pediatrics& Child Health, Makerere University College of Health Sciences, Kampala, Uganda, 2 Department of Psychiatry, Makerere University College of Health Sciences, Kampala, Uganda, 3 Department of Global Health and Development, London School of Hygiene and Tropical Medicine, London, United Kingdom, 4 Department of Obstetrics & Gynecology, Makerere University College of Health Sciences, Kampala, Uganda a1111111111 a1111111111 a1111111111 a1111111111 a1111111111 OPEN ACCESS Citation: Namiiro FB, Ssemata AS, Abdallah Y, Namusoke F (2023) “I abandoned my job to look after my baby.” Understanding the unpriced cost of care of a preterm infant: Caregivers’ lived experiences. PLoS ONE 18(8): e0290101. https:// doi.org/10.1371/journal.pone.0290101 Editor: Milton W. Musaba, Busitema University, UGANDA Received: December 7, 2022 Accepted: August 2, 2023 Published: August 17, 2023 Peer Review History: PLOS recognizes the benefits of transparency in the peer review process; therefore, we enable the publication of all of the content of peer review and author responses alongside final, published articles. The editorial history of this article is available here: https://doi.org/10.1371/journal.pone.0290101 Copyright: © 2023 Namiiro et al. This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited. Data Availability Statement: All relevant data are within the paper and its Supporting Information files. * Abstract Background Preterm birth is associated with life-long cost implications on the infant, family, health system, and society at large. The costs related to lost productivity at contributions at work during care of preterm infants are difficult to measure. We aimed to explore and document the unpriced costs parents incur following birth of a preterm infant in the first year of life in a low resource setting. Methods Thirty-nine mothers and five fathers of preterm infants who had ever attended the preterm follow-up clinic after discharge from Mulago National Referral Hospital, were included in a qualitative study between November 2019 and February 2020. Participants were purposively selected, and data were collected using four focused group discussions with mothers and in-depth interviews with the fathers lasting 30–70 minutes each. These were audiorecorded, transcribed and translated. The data were manually analysed using the thematic approach. Findings Three themes were generated: i) complex nature of the infant, ii) time to care for the infant, iii) mother as the predominant caregiver. The parents perceived preterm infants as delicate, complicated and their care more costly compared to those born at term. Expressions of need for time to care for their infants, frequent hospital visits and readmission were raised. Availability of the mother as the predominant caregiver some of whose roles cannot be delegated and their experiences following return to work after birth of a preterm were cited by the participants. PLOS ONE | https://doi.org/10.1371/journal.pone.0290101 August 17, 2023 1 / 10 PLOS ONE Unpriced cost of care of preterm infants Funding: FBN received the award Support was from the Forgaty International Center of National Institutes of Health, U.S Department of State’s Office of Global AIDS Coordinator and Health Diplomacy (S/GAC), and President’s Emergency Plan for AIDS Relief (PEPFAR) under Award Number 1R25TW011213. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript. Conclusion Competing interests: The authors have declared that no competing interests exist. Prematurity is defined by the World Health Organization (WHO) as birth before 37 completed weeks of gestation. These babies are further categorized as being extremely premature if < 28 weeks, moderately or very premature if born 28–32 weeks and late or near premature if born > 32 weeks. These babies may be of low, very low or extremely birth weight < 2500g, < 1500g or <1000g respectively. Annually, approximately 15 million babies are born prematurely, majority of whom are born in low resource countries (LRCs) [1,2]. In Uganda, about 226, 000 babies are born prematurely every year [3]. Although the reason for premature birth is unknown for the majority of cases, there some associated factors which include; extremes of maternal ages (too young or too old), short birth intervals, no antenatal follow-up, multiple pregnancy, previous preterm birth, infections and illnesses like hypertension [4]. Babies born prematurely are at high risk of mortality as well as morbidity. It is estimated that one million babies die from complications of prematurity annually. Efforts to reduce preterm birth and its complications are ongoing, the majority are health facility centered and most of these babies will have prolonged stay in the facility [5–7]. The cost of care of babies born premature is estimated to be more than 10 times that incurred to care for term babies [8,9]. Literature on care and economic implications following preterm birth in our setting is scarce. The available literature is mainly from the developed countries, mostly on direct costs which are health care related and focused on the health providers’ perceptions [10–13]. The direct cost of care has a monetary value attached in form of itemized and or unit cost. On the contrary, the indirect cost of care has no monetary value tagged to it because it is hard to measure and thus unpriced. The unpriced cost of preterm care is related to lost productivity to contributions at work by the parents in the short-term and then the reduced alternatives to work in the long-term [8,14]. Regarding the labor laws of Uganda, there is no mention of support to the family as part of a work incentive following preterm birth and other complex pregnancy outcomes. Affected families in the workforce are left to individual workplace decisions which are sometimes unfavorable. Beyond medical services, there is lack of social support for families with premature infants yet care of such babies stretches beyond medical care. The aim of the study was to explore and document the unpriced cost of care parents incur following birth of a preterm infant for the first year of life in Kampala, Uganda. The findings will help in developing policies and programs on the financial and social support for parents with premature infant(s). Methods Th (...truncated)