“我为了照顾我的宝宝而放弃了工作。”理解早产儿护理的无报酬成本：照顾者的真实体验。
"I abandoned my job to look after my baby." Understanding the unpriced cost of care of a preterm infant: Caregivers' lived experiences.
机构信息
Department of Pediatrics& Child Health, Makerere University College of Health Sciences, Kampala, Uganda.
Department of Psychiatry, Makerere University College of Health Sciences, Kampala, Uganda.
出版信息
PLoS One. 2023 Aug 17;18(8):e0290101. doi: 10.1371/journal.pone.0290101. eCollection 2023.
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 audio-recorded, 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.
CONCLUSION
The results highlight the unpriced costs incurred by the parents through disruption of the work pattern due to the actual and perceived needs of a preterm infant and time to care in a low resource setting. We recommend guidance on financial planning, development of policies and programs on social and financial support for parents and future studies on indirect costs of preterm care.
背景
早产与婴儿、家庭、医疗体系和整个社会的终身成本有关。在照顾早产儿期间，由于生产力损失而导致的无法计价的成本很难衡量。我们旨在探索和记录在资源匮乏的环境中，早产儿父母在婴儿出生后的第一年所产生的未计价成本。
方法
2019 年 11 月至 2020 年 2 月期间，我们在乌干达穆拉戈国家转诊医院接受早产儿随访诊所治疗的 39 位母亲和 5 位父亲参与了一项定性研究。采用目的抽样法选择参与者，使用 4 次母亲焦点小组讨论和 5 次父亲深度访谈收集数据，每次持续 30-70 分钟，并用音频记录、转录和翻译。采用主题分析方法对数据进行手动分析。
结果
产生了 3 个主题：i）婴儿的复杂性，ii）照顾婴儿的时间，iii）母亲是主要照顾者。父母认为早产儿脆弱、复杂，照顾成本比足月婴儿高。父母表达了需要时间照顾婴儿、频繁去医院就诊和再次住院的需求。参与者提到母亲作为主要照顾者的可用性，她的一些角色无法委派，以及她在早产儿出生后重返工作岗位的经历。
结论
研究结果突出了父母因早产儿的实际和感知需求以及照顾时间而打乱工作模式所产生的未计价成本。我们建议为父母提供财务规划指导、制定关于社会和财务支持的政策和计划，并开展早产儿护理间接成本的未来研究。
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