Perspectives of time: a qualitative study of the experiences of parents of critically ill newborns in the neonatal nursery in North Queensland interviewed several years after the admission

Abstract

DesignA qualitative study informed by grounded theory principles to explore the experiences of parents who had extremely preterm or babies with antenatally diagnosed life-threatening diagnoses who were cared for in a regional tertiary neonatal unit. The study was conducted when the child was old enough to be diagnosed with long-term neurodevelopmental or medical sequelae.SettingNorth Queensland is a large area in Eastern Australia of 500 000 km2, which is served by one tertiary neonatal unit.ParticipantsSeventeen families representing 21 extremely preterm babies and one baby with congenital malformations who was not expected to survive prior to delivery (but did) were interviewed using grounded theory principles. Interviews were coded and themes derived.ResultsParents who recollect their neonatal experiences from 3 to 7 years after the baby was cared for in the neonatal intensive care described negative themes of grief and loss, guilt and disempowerment. Positive enhancers of care included parental strengths, religion and culture, family supports and neonatal unit practices. Novel findings included that prior pregnancy loss and infertility formed part of the narrative for parents, and hope was engendered by religion for parents who did not usually have a religious faith.ConclusionsAn understanding of both the negative aspects of neonatal care and the positive enhancers is necessary to improve the neonatal experience for parents. Parents are able to contextualise their previous neonatal experiences within both the long-term outcome for the child and their own life history.

Stressors and support system among parents of neonates hospitalised with systemic infections: qualitative study in South India

“…We could not ascertain if participants questioned their faith or experienced negative religious coping while continuing to observe religious practices. 53 However, our findings support two studies from HICs, 35 54 where religion played a positive role among religious parents by providing hope for their baby’s well-being and survival in the wake of uncertainties.…”

Exploring implicit bias in the perceived consequences of prematurity amongst health care providers in North Queensland – a constructivist grounded theory study

“…More senior neonatologists articulated the difficulty in prognostication for individual babies, and the need to be hopeful. It may be that this perspective provides justification for the suffering, whilst opining that ‘even the disabled have rights.’ Extremely premature babies will remain in the neonatal unit for months after delivery and the HCPs in the neonatal unit will form a relationship with the families based on shared care for the neonate [ 42 ]. Consistent with the literature, a difference in negativity was seen between neonatology medical staff and neonatal nurses [ 43 , 44 ], and this may reflect a difference in the immediacy of day to day care, and social engagement with families.…”

Parents’ Experiences of the First Year at Home with an Infant Born Extremely Preterm with and without Post-Discharge Intervention: Ambivalence, Loneliness, and Relationship Impact

“…This raises the question of how long this identity is helpful for the parents and when, if at any time, primarily seeing oneself as a regular parent becomes beneficial? One should be aware that parental processes of children born preterm change over time [ 38 ], and what is considered an important theme one-year post-discharge may not be important several years later [ 33 ].…”

“…The inner feeling of becoming a parent prematurely has previously been studied using qualitative methods. The initial lack of control and proximity to the baby at the neonatal unit, from both psychological and physical perspectives, has been described as leading to feelings of disempowerment [ 32 ], grief [ 33 ], and mixed emotional experiences of sadness, guilt, anxiety, and worry [ 34 ] or even shock [ 35 ]. Some mothers describe their inner struggle with their bonding process to their child born EPT, and these negative feelings have also been reported as being accompanied by guilt and distress [ 36 ].…”

“…Discharge-planning when transitioning from the hospital ward to home care has previously been identified as an important factor for successful neonatal care and the parental experience [ 40 ], and is included in the recently published European Standards of Care for Newborn Health (ESCNH) [ 41 ]. About the time perspective, the emotional distress of parenting a critically ill newborn who has received care at a NICU does not seem to fade easily, and both grief and disempowerment, as well as the remembrance of family support and parental strengths, may persist for several years [ 33 ]. In the long term, there is also evidence (four years after giving birth) of greater personal growth among mothers that give birth preterm compared to mothers that give birth in the expected time [ 42 ], even though initial maternal mental health seems to be a mediating factor.…”