Psychosocial support for parents of extremely preterm infants in neonatal intensive care: a qualitative interview study

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Abstract

Background

Extremely premature infants (those born before 28 weeks’ gestational age) are highly immature, requiring months of care at a neonatal intensive care unit (NICU). For parents, their child’s grave medical condition and prolonged hospitalization are stressful and psychologically disruptive. This study aimed at exploring the needs of psychosocial support of parents of extremely premature infants, and how the NICU as an organization and its staff meets or fails to meet these needs.

Method

Sixteen open-ended interviews were conducted with 27 parents after their infant’s discharge from the NICU. Inductive content analysis was performed.

Results

Four themes were identified: Emotional support (with subthemes Empathic treatment by staff, Other parents as a unique source of support, Unclear roles of the various professions); Feeling able to trust the health care provider; Support in balancing time spent with the infant and other responsibilities; Privacy.

Parents of extremely premature infants needed various forms of emotional support at the NICU, including support from staff, professional psychological help and/or companionship with other patients’ parents. Parents were highly variable in their desire to discuss their emotional state with staff. The respective roles of nursing staff, social workers and psychologists in supporting parents emotionally and identifying particularly vulnerable parents appeared unclear. Parents also needed to be able to maintain a solid sense of trust in the NICU and its staff. Poor communication with and among staff, partly due to staff discontinuity, damaged trust. Parents struggled with perceived pressure from staff to be at the hospital more than they could manage and with the limited privacy of the NICU.

Conclusions

The complex and individual psychosocial needs of parents of extremely preterm infants present many challenges for the NICU and its staff. Increasing staffing and improving nurses’ competence in addressing psychosocial aspects of neonatal care would help both nurses and families. Clarifying the roles of different professions in supporting parents and developing their teamwork would lessen the burden on nurses. Communicating with parents about their needs and informing them early in their NICU stay about available support would be essential in helping them cope with their infant’s hospitalization.

Related collections

Most cited references 30

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Outcomes for extremely premature infants.

Hannah Glass, Andrew Costarino, Stephen A Stayer … (2015)

Premature birth is a significant cause of infant and child morbidity and mortality. In the United States, the premature birth rate, which had steadily increased during the 1990s and early 2000s, has decreased annually for 7 years and is now approximately 11.39%. Human viability, defined as gestational age at which the chance of survival is 50%, is currently approximately 23 to 24 weeks in developed countries. Infant girls, on average, have better outcomes than infant boys. A relatively uncomplicated course in the intensive care nursery for an extremely premature infant results in a discharge date close to the prenatal estimated date of confinement. Despite technological advances and efforts of child health experts during the last generation, the extremely premature infant (less than 28 weeks gestation) and extremely low birth weight infant (<1000 g) remain at high risk for death and disability with 30% to 50% mortality and, in survivors, at least 20% to 50% risk of morbidity. The introduction of continuous positive airway pressure, mechanical ventilation, and exogenous surfactant increased survival and spurred the development of neonatal intensive care in the 1970s through the early 1990s. Routine administration of antenatal steroids during premature labor improved neonatal mortality and morbidity in the late 1990s. The recognition that chronic postnatal administration of steroids to infants should be avoided may have improved outcomes in the early 2000s. Evidence from recent trials attempting to define the appropriate target for oxygen saturation in preterm infants suggests arterial oxygen saturation between 91% and 95% (compared with 85%-89%) avoids excess mortality; however, final analyses of data from these trials have not been published, so definitive recommendations are still pending. The development of neonatal neurocritical intensive care units may improve neurocognitive outcomes in this high-risk group. Long-term follow-up to detect and address developmental, learning, behavioral, and social problems is critical for children born at these early gestational ages.The striking similarities in response to extreme prematurity in the lung and brain imply that agents and techniques that benefit one organ are likely to also benefit the other. Finally, because therapy and supportive care continue to change, the outcomes of extremely low birth weight infants are ever evolving. Efforts to minimize injury, preserve growth, and identify interventions focused on antioxidant and anti-inflammatory pathways are now being evaluated. Thus, treating and preventing long-term deficits must be developed in the context of a "moving target."

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Closeness and separation in neonatal intensive care

Renée Flacking, Liisa Lehtonen, Gill Thomson … (2012)

In this paper, we highlight the need for acknowledging the importance and impact of both physical and emotional closeness between the preterm infant and parent in the neonatal intensive care unit. Physical closeness refers to being spatially close and emotional closeness to parental feelings of being emotionally connected to the infant (experiencing feelings of love, warmth and affection). Through consideration of the literature in this area, we outline some of the reasons why physical closeness and emotional closeness are crucial to the physical, emotional and social well-being of both the infant and the parent. These include positive effects on infant brain development, parent psychological well-being and on the parent–infant relationship. The influence of the neonatal unit environment and culture on physical and emotional closeness is also discussed. Conclusions Culturally sensitive care practices, procedures and the physical environment need to be considered to facilitate parent–infant closeness, such as through early and prolonged skin-to-skin contact, family-centred care, increased visiting hours, family rooms and optimization of the space on the units. Further research is required to explore factors that facilitate both physical and emotional closeness to ensure that parent–infant closeness is a priority within neonatal care.

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Prevalence and correlates of posttraumatic stress and postpartum depression in parents of infants in the Neonatal Intensive Care Unit (NICU).

Chiara Baxt, Darrell J R Evans, D Lefkowitz (2010)

The purpose of this study was to assess the prevalence and correlates of acute stress disorder (ASD) and posttraumatic stress disorder (PTSD) in mothers and fathers, and postpartum depression (PPD) in mothers, of infants in the Neonatal Intensive Care Unit (NICU). 86 mothers and 41 fathers completed measures of ASD and of parent perception of infant medical severity 3-5 days after the infant's NICU admission (T1), and measures of PTSD and PPD 30 days later (T2). 35% of mothers and 24% of fathers met ASD diagnostic criteria at T1, and 15% of mothers and 8% of fathers met PTSD diagnostic criteria at T2. PTSD symptom severity was correlated with concurrent stressors and family history of anxiety and depression. Rates of ASD/PTSD in parents of hospitalized infants are consistent with rates in other acute illness and injury populations, suggesting relevance of traumatic stress in characterizing parent experience during and after the NICU.

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Author and article information

Contributors

Anna Bry:

ORCID: http://orcid.org/0000-0002-1127-8177

annakrisbry@gmail.com

Helena Wigert: helena.wigert@fhs.gu.se

Journal

Journal ID (nlm-ta): BMC Psychol

Journal ID (iso-abbrev): BMC Psychol

Title: BMC Psychology

Publisher: BioMed Central (London )

ISSN (Electronic): 2050-7283

Publication date (Electronic): 29 November 2019

Publication date PMC-release: 29 November 2019

Publication date Collection: 2019

Volume: 7

Electronic Location Identifier: 76

Affiliations

[1 ]ISNI 000000009445082X, GRID grid.1649.a, Division of Neonatology, , Sahlgrenska University Hospital, ; Gothenburg, Sweden

[2 ]ISNI 0000 0000 9919 9582, GRID grid.8761.8, Institute of Health and Care Sciences, , University of Gothenburg, ; Gothenburg, Sweden

Author information

Anna Bry http://orcid.org/0000-0002-1127-8177

Article

Publisher ID: 354

DOI: 10.1186/s40359-019-0354-4

PMC ID: 6883543

PubMed ID: 31783784

SO-VID: 1f19a435-042f-49f2-8edb-506fa975bcee

License:

Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

History

Date received : 18 February 2019

Date accepted : 15 November 2019

Custom metadata

Keywords: extreme prematurity,neonatal intensive care,psychosocial needs,parental stress,emotional support,nursing

Data availability:

Keywords: extreme prematurity, neonatal intensive care, psychosocial needs, parental stress, emotional support, nursing