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

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

Early cranial ultrasound findings among infants with neonatal encephalopathy in Uganda: an observational study.

BACKGROUND: In sub-Saharan Africa, the timing and nature of brain injury and their relation to mortality in neonatal encephalopathy (NE) are unknown. We evaluated cranial ultrasound (cUS) scans from term Ugandan infants with and without NE for evidence of brain injury. METHODS: Infants were recruited from a national referral hospital in Kampala. Cases (184) had NE and controls (100) were systematically selected unaffected term infants. All had cUS scans <36 h reported blind to NE status. RESULTS: Scans were performed at median age 11.5 (interquartile range (IQR): 5.2-20.2) and 8.4 (IQR: 3.6-13.5) hours, in cases and controls respectively. None had established antepartum injury. Major evolving injury was reported in 21.2% of the cases vs. 1.0% controls (P < 0.001). White matter injury was not significantly associated with bacteremia in encephalopathic infants (odds ratios (OR): 3.06 (95% confidence interval (CI): 0.98-9.60). Major cUS abnormality significantly increased the risk of neonatal death (case fatality 53.9% with brain injury vs. 25.9% without; OR: 3.34 (95% CI: 1.61-6.95)). CONCLUSION: In this low-resource setting, there was no evidence of established antepartum insult, but a high proportion of encephalopathic infants had evidence of major recent and evolving brain injury on early cUS imaging, suggesting prolonged or severe acute exposure to hypoxia-ischemia (HI). Early abnormalities were a significant predictor of death

Interview guide.

BackgroundPreterm 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.MethodsThirty-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.FindingsThree 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.ConclusionThe 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.</div

“My baby is fine, no need for more clinic visits.” Facilitators and barriers for utilisation of follow-up services for children born preterm in low-resource setting: Parents' perceptions

Objectives: We sought to understand the facilitators and barriers impacting utilisation of follow-up services for children born preterm as perceived by parents in a low-resource setting. Methods: We conducted a qualitative study at Mulago Hospital, Uganda, with parents of children born preterm and aged 22–38 months at the time of the study. We collected data using five in-depth interviews and four focus group discussions. Data were analysed using thematic analysis informed by the social–ecological model. Results: Ten subthemes emerged that could be grouped into three main themes: (1) Individual: parents' knowledge, parenting skills, perception of follow-up and infant's condition; (2) Relationship: support for the mother and information sharing; (3) Institution: facility setup, cost of care, available personnel and distance from the facility. Parents of preterm infants perceived receiving timely information, better understanding of prematurity and its complications, support from spouses, availability of free services and encouragement from health workers as facilitators for utilisation of follow-up services. Limited male involvement, parents' negative perception of follow-up, stable condition of infant, health facility challenges especially congestion at the hospital, distance and care costs were key barriers. Conclusion: An interplay of facilitators and barriers at individual, interpersonal and health system levels encourage or deter parents from taking their preterm children for follow-up services. Improving utilisation of services will require educating parents on the importance of follow-up even when children are not sick, eliciting maternal support from spouses and peers and addressing health system gaps that make follow-up unattractive and costly

Socio-demographic characteristics for the study participants.

Socio-demographic characteristics for the study participants.</p

Emerging themes and subthemes on unpriced costs of preterm infants.

Emerging themes and subthemes on unpriced costs of preterm infants.</p