Listening to the parent voice to inform person-centred neonatal care

Abstract

Listening to the parent voice to inform person-centred neonatal care. AbstractFamily integrated care (FIC), where parents are an integral part of their baby's care and decision-making can enhance parental involvement and empowerment, contributing to decreased parental separation and stress. It follows that parents can also be a central part of neonatal education for staff in the neonatal speciality. This paper focuses on what students and staff can learn from parents about what they feel is important to make their experience better. A narrative, interpretive approach was undertaken to collect and analyse parent interview narratives. A specific question was posed to a purposive sample of parents who have had premature babies about what health professionals can learn from them. Thematic analysis revealed five key themes relating to the importance of: communicating; listening; empathising; acknowledging (the parent's role); realising (what matters to parents). These elements were incorporated into a framework named by the mnemonic, 'CLEAR'. This highlights what parents want staff to be cognisant of when caring for them and their babies.Learning from the parents in our care enables a greater understanding of their experiences at difficult and challenging times. Having a deeper understanding of parents' experiences can contribute to enhanced empathic learning. KEY WORDSParent experience / Neonatal education / Family-integrated learning / Narrative inquiry

Using parent metaphors for learning about the neonatal care experience: An interpretive perspective

“…Acknowledging this balance is important (Petty et al, 2019b). Beating the odds and battling through, for example, were positive threads amongst the turmoil and stress.…”

“…This study in context, as a component of a larger one, is depicted in Figure 1. The other study components are reported separately (Petty et al, 2019a, 2019b).…”

“…This study in context, as a component of a larger one is depicted in Figure 1. The other study components are reported separately (Petty et al, 2019a(Petty et al, , 2019b. The study design adopted an interpretive, narrative approach which explores the meaning of one's experience.…”

“Always a Preemie”: Maternal Experiences Parenting a Very Preterm Infant into Toddlerhood

“…Making meaning of such events and how they integrate into a mother’s life framework can be important for her well-being and adaptive functioning. 18, 19 In addition, mothers’ narratives provide unique insights into nuances of their experiences, which may not be captured on questionnaires, 4, 10, 20-23 and may point to avenues for intervention. Several qualitative studies have examined maternal narrative experiences of having an infant in the NICU and the transition home upon hospital discharge, 24, 25 results from which have informed interventions targeting maternal well-being.9,26 In brief, these studies describe the stress, uncertainty, and challenges mothers of preterm infants may experience while in the NICU, as well as barriers to and facilitators for maternal coping, mental health, and attachment during the NICU experience.…”

“…Several qualitative studies have examined maternal narrative experiences of having an infant in the NICU and the transition home upon hospital discharge, 24, 25 results from which have informed interventions targeting maternal well-being.9,26 In brief, these studies describe the stress, uncertainty, and challenges mothers of preterm infants may experience while in the NICU, as well as barriers to and facilitators for maternal coping, mental health, and attachment during the NICU experience. 9, 26 Most, but not all, 19 studies to date have examined maternal narrative experiences of having a preterm infant during the postpartum period, which for some, may be colored by an acute stress response.Narratives from the postpartum period cannot examine mothers’ experiences later families benefit from in the first years of their child’s life, including the impact of the NICU experience on mothers’ later well-being. Mothers of former preterm infants have been found to experience greater feelings of vulnerability, persisting through the preschool years.…”