The Perinatal-Neonatal Care Journey for Parents of Preterm Infants

Abstract

Preterm birth is traumatic for parents, but there are few reports of parents' views on how the healthcare journey can be improved. This secondary thematic analysis used focus group data from parent consultation on proposed neonatal services standards for Northern Ireland to discover parents' experiences and recommendations for the perinatal, neonatal, and home care phases. Parents of preterm infants (n = 40) described their healthcare journey as positive overall and were grateful for the caring and competent care providers they encountered. However, parents described experiences that varied in quality and family centeredness across the care journey from perinatal to home care. They noted inconsistencies in healthcare team communication and provider practices and reported receiving limited emotional and practical support at all phases. In the perinatal phase, parents described difficult situations of discovering medical problems leading to preterm birth. In the neonatal intensive care unit phase, they also experienced unmet needs for involvement in decision making, financial strain, and difficulty coping with transfers and discharge. Parents experienced emotional challenges and lack of support in the home care phase. Parents identified actions that health systems can take to improve the consistency of care and communication across all phases and settings to encourage better collaboration and transitions in care.

Understanding parents’ emotional experiences for neonatal education: A narrative, interpretive approach

“…Finally to summarise, health professionals can learn from parents themselves in regard to what is needed to support them. Franck et al () explain how parents felt that a family‐centred approach was important at all phases of their healthcare journey, concurring with the findings of this study. Most parents felt that they would like to be actively included in both the decision‐making and the clinical care of their babies from an early stage.…”

“…This paper agrees and would extend Janvier's key point to educators too. Franck et al () concur presenting both positive and negative parent experiences in their work on parent experience highlighted earlier.…”

“…Present across global boundaries are significant emotional needs in relation to the support required to improve parent's neonatal care experience, extrapolated from research undertaken, for example in England, Europe, Northern Ireland and the United States, respectively (Picker Institute Europe, ; Franck, McNulty, & Alderdice, ; Howell & Graham, ; Williams et al, ). This was also found after discharge at home, as found in a large survey across the United Kingdom (The Smallest Things, ).…”

Online information for parents caring for their premature baby at home: A focus group study and systematic web search

“…The focus group findings confirm there is a gap in support for parents when they leave NICU . While parents wanted to get home with their baby, they often felt the need for additional support and advice on different aspects of their baby's health and development.…”

“…Going home from hospital can be a stressful time for parents who are faced with looking after their baby in the absence of professional support for the first time . Awareness of infant needs is described as a learning process utilizing external resources, trial‐and‐error and an internal intuitive sense, particularly in identifying and dealing with infant pain/discomfort and with communicating with health‐care professionals . Existing research suggests that parents are apprehensive about their infants’ perceived fragile health, losing the support of the neonatal team, their parenting skills and ability to perform caregiving procedures …”