Quality of life of parents of very preterm infants 4 months after birth: a mixed methods study

Background: Knowledge about parental quality of life (QoL) is paramount to family-centred and integrated healthcare on prematurity, but evidence is limited. We aimed to explore mothers' and fathers' perspectives about their QoL 4 months after a very preterm childbirth. Methods: This is a cross-sectional mixed methods study using a convergent design. Parents of very preterm infants were systematically recruited at all level III neonatal intensive care units in the Northern health region of Portugal for one year. Four months after childbirth, 61 mothers and 56 fathers filled-in the World Health Organization Quality of Life -BREF Inventory, and 26 couples were interviewed. Linear regression models were computed to assess the association between participants' characteristics and the QoL. Qualitative data were thematically analysed. Results: A quantitative analysis revealed that the perception of QoL was not significantly different by gender. QoL scores increased slightly from the environment (Mean (SD): 72.1 (14.2)) to the psychological domains (Mean (SD): 78.7 (14.4)). All scores were influenced by psychological characteristics. Socioeconomic position influenced both parents' perceptions concerning the environment domain, and maternal physical and psychological QoL. Infant-related factors were associated with overall QoL among women and with the physical, psychological, social and environment domains among men. Qualitative findings indicated accommodation mechanisms that intertwine the focus on constraining factors (surveillance, sleep disturbances, non-supportive healthcare policies, hygienization) with facilitating factors (social support, accessibility/quality of healthcare, opportunities for developing parental skills). These processes were anchored in child-centredness and a framework that construct hierarchies of hope and expectations about infant's health and development. Conclusions: To capture parental QoL using mixed methods raises awareness for developing intersectoral family-centred policies, integrated health services and focused-interventions to decrease the disempowering effects of surveillance and hygienization.This study was co-funded by national funding from the Foundation for Science and Technology - FCT (Portuguese Ministry of Science, Technology and Higher Education), the FEDER funding from the Operational Programme Factors of Competitiveness - COMPETE and POPH/FSE Program, under the Unidade de Investigacao em Epidemiologia - Instituto de Saude Publica da Universidade do Porto (EPIUnit) (POCI-01-0145-FEDER-006862; Ref. FCT UID/DTP/04750/2013), the project Parenting roles and knowledge in Neonatal Intensive Care Units (FCOMP-01-0124-FEDER-019902; Ref. FCT PTDC/CS-ECS/120750/2010), the PhD grant PD/BD/105830/2014 (MA), the Postdoc grant SFRH/BPD/103562/2014 (EA), and the FCT Investigator contract IF/01674/2015 (SS)