‘They said, let’s teach you how you are going to care for the child at home…’: caregivers’ and healthcare worker’s perceptions and experiences of post-discharge preterm care in eastern Uganda

Abstract

Background Complications of prematurity are the leading cause of neonatal mortality, and the majority of these deaths occur in low and middle-income countries. Research in these settings has focused on improved outcomes for preterm infants in hospital settings, however, research into the continuation of preterm care in the home after discharge from a neonatal unit is limited. This study examines the experiences and perceptions of caregivers of preterm infants during the initial weeks following discharge from a neonatal unit in Uganda, and the views of healthcare workers (HCWs) on the ability of caregivers to cope. Methods This qualitative study used multiple data collection approaches, namely focus group discussions (FGDs), in-depth interviews (IDIs), field observations, and case studies to explore the perceptions and experiences of providing care to preterm infants post-discharge from a neonatal unit in eastern Uganda from the perspectives of caregivers and HCWs. Results We recruited 39 participants with a total of 35 separate sessions including 18 IDIs (12 caregivers and 6 HCWs), 3 FGDs (17 caregivers), and 4 case studies (14 separate IDIs over 5 weeks after discharge, three mothers, and one grandmother). IDIs and FGDs took place at the Mbale Regional Referral Hospital or in participants’ homes. Key themes emerged; preparation for continuing care in the home, psychosocial challenges to providing preterm care in the home, barriers to continuing preterm care in the home, and suggestions for improvement of preterm care in the home. Caregivers had good knowledge and awareness about different aspects of preterm care. Following discharge, caregivers struggled to maintain quality care due to loss of continuous support from the neonatal team, feelings of anxiety and isolation, financial issues, and home responsibilities. Conclusion This study highlights multiple challenges to continuing preterm care in this Ugandan setting. Improved training and education for caregivers, especially in neonatal resuscitation, enhanced and continued support of the caregiver and infant in the home, and increased community involvement following discharge may all be key solutions. These findings are fundamental to improving care in the home for preterm infants in eastern Uganda and similar settings.

Perception and Educational Needs of Developmentally Supportive Care At-Home for Parents of Pre-Term Newborns

“…These results are in line with previous findings that parents who received consultation and education through the VIC consultations program oscillate between feeling confident in caring for the infant on their own and needing support from others [18]. Further, study findings that the parents of pre-term newborns feel a strong need for active intervention and support from experts in the communities after they are discharged from the hospital [9,10,12] support our results.…”

“…In this study, the core category of perception and needs for DSC among parents who raise infants or toddlers born as pre-term newborns was “Continued parenting even when unaware and wish for a shared parenting system supported by multidisciplinary experts.” In their study on the experiences of mothers of pre-term newborns at home, Breivold et al [ 10 ] reported that parents encounter an experience as if they are “seeing the light at the end of the tunnel,” and they wish to receive continued parenting support and consultation from nurses of health care facilities; this supports our findings. Further, our findings were consistent with the conclusion of Lyne et al [ 12 ], that parents have no time and little support from other family members at home and thus need experts in the community through contact via radio or video platforms.…”

“…These are contextually in line with the findings of Garti et al [ 9 ], that mothers encounter negative parenting experiences due to parenting-related physical exhaustion, emotional flatness, and dissatisfaction with social support. In addition, our results were similar to those of a study on parenting experiences after discharge by Lyne [ 12 ] where, despite preparing (e.g., breastfeeding, infection control) to raise a preemie at home with the assistance of healthcare staff upon perceiving the need for education, parents had difficulty providing DSC, such as kangaroo care, due to their hectic everyday life after discharge. These results highlight the need to consider the situations in the Republic of Korea when providing interventions to promote DSC among parents.…”

“…Parents who experience the birth of a pre-term newborns unexpectedly face an array of negative emotions. During the NICU stay, they experience anxiety, feelings of loss, and attachment impairment [ 11 ], and as they care for their child at home after discharge, they experience symptoms similar to posttraumatic stress disorder (PTSD) such as flashbacks [ 12 , 13 ] and report higher parenting stress than parents of full-term infants [ 14 , 15 ]. Therefore, providing psychosocial support to the parents of pre-term newborns is essential.…”

Design and implementation of a community-based mother-to-mother peer support programme for the follow-up of low birthweight infants in rural western Kenya

“…A recent study in Kenya found that accessing healthcare for LBW infants in a rural community in western Kenya was fraught with challenges at the individual, community and health system levels ( 13 ). In Uganda, a study that explored the perceptions of carers of preterm infants post-discharge found that, although carers felt that they had acquired the knowledge and skills required to care for their newborns from the facility admission, in the community they struggled to maintain that quality of newborn care in the absence of ongoing support from healthcare providers ( 14 ). In addition, they did not know how to respond when infants develop features of severe illness such as poor feeding, breathing difficulties etc.…”