Caregivers’ Experiences in Providing Home Care for Preterm Infants during the Initial Six Months Post-Discharge from the Neonatal Care Unit

Abstract

Nearly 15 million preterm babies are born yearly, worldwide. Out of which 1 million succumb to the complications directly related to premature birth. In Kenyatta National Hospital the prevalence of preterm birth is 18.3% while the mortality rate of preterm babies under 5 years is about 7% per year countrywide. Many studies that highlight the experiences of caregivers of preterm babies have been conducted in neonatal care units and few outside the hospital setting. A majority of these studies have been done in developed countries. However, in Kenya, there is a scarcity of such studies exploring the experiences of caregivers of preterm babies not only in neonatal care unit (NCU) but also after they have been discharged. This study aimed to evaluate the experiences caregivers of preterm babies face at home in the first 6 months post-discharge. This was a phenomenological study. Sixteen preterm caregivers were purposively sampled from Litein Mission and Kapkatet County hospitals’ outpatient clinics. Ethical approval was sought from KUREC and a Research Permit from NACOSTI. Interviews were conducted using a semi-structured interview guide at the participants’ convenience. The interviews were audio-recorded, transcribed verbatim, and analysed thematically to identify subthemes and key themes. Majority of the caregivers faced discrimination from the community; they were anxious and worried about the welfare of their babies as they were working throughout the day to keep them safe from harm. The caregivers face the following challenges: (a) stigmatization and fear of unknown (b) working round the clock (c) Support given to Caregivers. To overcome the above challenges, they received support from family members, peers, and church members. We conclude that caregivers may have a myriad of negative experiences at home. We recommend that healthcare givers be incorporated into community-oriented care to optimize and improve the wellbeing of the infants.