Family-Oriented Research to Improve Care of Preterm Infants

A special issue of Children (ISSN 2227-9067). This special issue belongs to the section "Pediatric Neonatology".

Deadline for manuscript submissions: closed (5 April 2024) | Viewed by 12141

Special Issue Editor


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Guest Editor
1. Division of Neonatology, BC Women’s Hospital, Vancouver, BC V6H 3N1, Canada
2. Department of Pediatrics, Faculty of Medicine, University of British Columbia, Vancouver, BC V6T 1Z4, Canada
Interests: prematurity; outcomes research; quality improvement; patient-oriented research

Special Issue Information

Dear Colleagues,

I am pleased to share with you our plans to publish a Special Issue on research with and about families with a child born preterm. The important roles of parents after the birth of a preterm child have only recently been recognized by the medical field as an important aspect of neonatal intensive care and beyond. Involving parents and patients in research is now receiving due attention by funding bodies. To the best of my knowledge, the many different aspects of parental and family involvement in preterm care research have not been brought together in one edition. We would like to capture parent stories and perspectives in the first article, followed by stories about getting families into and involved in their baby’s care in the neonatal intensive care unit and, after hospital discharge, parent perspectives on their child’s development, communicating with and involving parents in research.  The manuscripts will vary from narrative stories, original research and reviews of these topics. Based on your expertise and previous publications in this area, I would like to invite you to join this endeavour.

Dr. Anne Synnes
Guest Editor

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Keywords

  • prematurity
  • outcomes research
  • patient-oriented research
  • family integrated care
  • parent perspectives
  • quality improvement

Published Papers (8 papers)

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Research

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11 pages, 271 KiB  
Article
Prenatal Workshops and Support Groups for Prospective Parents Whose Children Will Need Neonatal Care at Birth: A Feasibility and Pilot Study
by Béatrice Boutillier, Guillaume Ethier, Isabelle Boucoiran, Martin Reichherzer, Thuy Mai Luu, Lucie Morin, Rebecca Pearce and Annie Janvier
Children 2023, 10(9), 1570; https://doi.org/10.3390/children10091570 - 19 Sep 2023
Viewed by 1082
Abstract
Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs [...] Read more.
Introduction: Support groups in neonatal intensive care units (NICUs) are beneficial to parents. The usefulness of prenatal support groups for prospective parents who will have a newborn requiring admission to the NICU has never been investigated. Methods: We assessed the needs of NICU parents regarding topics they would have wished to discuss prenatally and developed the content of a prenatal support workshop. A standardized survey prospectively evaluated the perspectives of pregnant women admitted to a high-risk pregnancy unit who participated in the resulting workshops. Results: During needs assessment, 295 parents invoked themes they would have wished to discuss antenatally: parental guilt, future parental role, normalizing their experience/emotions, coping with many losses, adapting to their new reality, control and trust, information about the NICU, technology around the baby, common neonatal interventions, the NICU clinical team, and the role of parents in the team. These findings were used to develop the workshop, including a moderator checklist and a visual presentation. Practical aspects of the meetings were tested/finalized during a pre-pilot phase. Among 21 pregnant women who answered the survey (average gestational age 29.3 weeks), all agreed that the workshop was useful, that it made them feel less lonely (95%), that exchanges with other women were beneficial (95%) and gave them a certain amount of control over their situation (89%). All answers to open-ended questions were positive. Conclusion: Prenatal educational/support workshops provide a unique and useful means to support future NICU parents. Future investigations will explore whether these prenatal interventions improve clinical outcomes. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
10 pages, 214 KiB  
Article
Building Connections with Families: Implementation of a Video-Messaging Service in the Neonatal Intensive Care Unit
by Stephanie Bott, Nicole Dantas Fernandez, Janet Narciso, Janet MacAlpine, Nicole Quain, Julia Rettie, Lia Sharpe, Yenge Diambomba, Ayah Al Bizri, Karel O’Brien and Vibhuti Shah
Children 2023, 10(8), 1338; https://doi.org/10.3390/children10081338 - 2 Aug 2023
Cited by 1 | Viewed by 1292
Abstract
Background: Family involvement is vital to optimize the care of infants in the neonatal intensive care unit (NICU). Various technologies have been used to support communication with parents in the NICU. The purpose of this study was to evaluate the parent and staff [...] Read more.
Background: Family involvement is vital to optimize the care of infants in the neonatal intensive care unit (NICU). Various technologies have been used to support communication with parents in the NICU. The purpose of this study was to evaluate the parent and staff experience and perception of the use of a cloud-based video-messaging service in our NICU. Methods: This study was a single center observational study conducted at Mount Sinai Hospital, Toronto, Canada. Following the implementation of a video-messaging service, parent and staff surveys were distributed to evaluate their experience and perception. Results: Parent responses were positive with respect to how the service helped them feel: closer to their infant (100%) and reassured about their infant’s care (100%). Nursing staff responses indicated that they perceived a benefit to parents (100%) and to their building a relationship with families (79%). However, they also identified time constraints (85%) and the use of the technology hardware (24%) as challenges. Conclusions: The use of an asynchronous video-messaging service was perceived as beneficial to both parents and staff in the NICU. Complaints pertained to the impact of the technology on nursing workflow and the difficulty using the hardware provided for use of the service. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
14 pages, 1175 KiB  
Article
A Pilot Study of Family-Integrated Care (FICare) in Critically Ill Preterm and Term Infants in the NICU: FICare Plus
by Najmus Sehr Ansari, Linda S. Franck, Christopher Tomlinson, Anna Colucci and Karel O’Brien
Children 2023, 10(8), 1337; https://doi.org/10.3390/children10081337 - 2 Aug 2023
Cited by 1 | Viewed by 1658
Abstract
Family-integrated care (FICare) is associated with improved developmental outcomes and decreased parental mental health risks in stable preterm infants. However, less is known about its application in critically ill infants who are at greater risk for adverse outcomes. The objective of this study [...] Read more.
Family-integrated care (FICare) is associated with improved developmental outcomes and decreased parental mental health risks in stable preterm infants. However, less is known about its application in critically ill infants who are at greater risk for adverse outcomes. The objective of this study was to assess the safety and feasibility of implementation of an augmented FICare program, FICare Plus, in critically ill infants in the first few weeks of life. Resources were specifically developed for staff and parents to support earlier parental engagement in infant care. Infant health outcomes and standardized measures of parental stress, anxiety and parenting self-efficacy were also collected using standardized questionnaires: State -Trait Anxiety Inventory (STAI), Parental Stressor Scale: NICU (PSS: NICU), Perceived Parenting Self-Efficacy Tool and Family Centered Care Survey. The t-test or Wilcoxon rank-sum test were used to compare continuous variables, while the Chi-square or Fisher exact test were used for categorical variables, respectively. In this prospective cohort study, 41 critically ill infants were enrolled: 17 in standard care (SC) and 24 in the FICare Plus group. The tools and procedures developed for FICare Plus successfully supported greater engagement in the care of their infants with no increase in adverse events and no increase in parental stress. Parents in the FICare Plus cohort felt confident to participate in their infant’s care. The staff also found this model of care acceptable and well adopted. Preliminary measures of infant efficacy were similar in both groups. Total anxiety scores were high among all parents at enrollment (87 (67–94) vs. 70.5 (66–86); p-value 0.22). However, the scores prior to discharge were lower in FICare Plus group (78 (71–90) vs. 63 (52–74.5); p-value 0.02). This pilot study showed that it is feasible and safe to implement family-integrated care in critically ill infants. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
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18 pages, 326 KiB  
Article
Unmet Parental Mental Health Service Needs in Neonatal Follow-Up Programs: Parent and Service Provider Perspectives
by Shayna K. Pierce, Kristin A. Reynolds, Lorna S. Jakobson, M. Florencia Ricci and Leslie E. Roos
Children 2023, 10(7), 1174; https://doi.org/10.3390/children10071174 - 6 Jul 2023
Cited by 2 | Viewed by 1176
Abstract
Parental mental health services in neonatal follow-up programs (NFUPs) are lacking though needed. This study aimed to determine (1) the unmet mental health needs of parents and (2) the parent and provider perspectives on barriers and opportunities to increase mental health service access. [...] Read more.
Parental mental health services in neonatal follow-up programs (NFUPs) are lacking though needed. This study aimed to determine (1) the unmet mental health needs of parents and (2) the parent and provider perspectives on barriers and opportunities to increase mental health service access. Study 1: Parents in a central Canadian NFUP (N = 49) completed a mixed-method online survey (analyzed descriptively and by content analysis) to elucidate their mental health, related service use, barriers to service use, and service preferences. Study 2: Virtual focus groups with NFUP service providers (N = 5) were run to inform service improvements (analyzed by reflexive thematic analysis). The results show that parents endorsed a 2–4 times higher prevalence of clinically significant depression (59.2%), anxiety (51.0%), and PTSD (26.5%) than the general postpartum population. Most parents were not using mental health services (55.1%) due to resource insecurity among parents (e.g., time, cost) and the organization (e.g., staffing, training, referrals). Consolidating parents’ and service providers’ perspectives revealed four opportunities for service improvements: bridging services, mental health screening, online psychoeducation, and peer support. Findings clarify how a central Canadian NFUP can address parental mental health in ways that are desired by parents and feasible for service providers. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
18 pages, 1026 KiB  
Article
Parent-Integrated Interventions to Improve Language Development in Children Born Very Preterm
by Anne Synnes, Thuy Mai Luu, Jehier Afifi, May Khairy, Cecilia de Cabo, Diane Moddemann, Leonora Hendson, Amber Reichert, Kevin Coughlin, Kim Anh Nguyen, Lindsay L. Richter, Fabiana Bacchini and Khalid Aziz
Children 2023, 10(6), 953; https://doi.org/10.3390/children10060953 - 27 May 2023
Viewed by 1696
Abstract
Neurodevelopmental challenges in children born very preterm are common and not improving. This study tested the feasibility of using Evidence-based Practice to Improve Quality (EPIQ), a proven quality improvement technique that incorporates scientific evidence to target improving language abilities in very preterm populations [...] Read more.
Neurodevelopmental challenges in children born very preterm are common and not improving. This study tested the feasibility of using Evidence-based Practice to Improve Quality (EPIQ), a proven quality improvement technique that incorporates scientific evidence to target improving language abilities in very preterm populations in 10 Canadian neonatal follow-up programs. Feasibility was defined as at least 70% of sites completing four intervention cycles and 75% of cycles meeting targeted aims. Systematic reviews were reviewed and performed, an online quality improvement educational tool was developed, multidisciplinary teams that included parents were created and trained, and sites provided virtual support to implement and audit locally at least four intervention cycles of approximately 6 months in duration. Eight of ten sites implemented at least four intervention cycles. Of the 48 cycles completed, audits showed 41 (85%) met their aim. Though COVID-19 was a barrier, parent involvement, champions, and institutional support facilitated success. EPIQ is a feasible quality improvement methodology to implement family-integrated evidence-informed interventions to support language interventions in neonatal follow-up programs. Further studies are required to identify potential benefits of service outcomes, patients, and families and to evaluate sustainability. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
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13 pages, 2689 KiB  
Article
Redefining Neurodevelopmental Impairment: Perspectives of Very Preterm Birth Stakeholders
by Anne Synnes, Amarpreet Chera, Lindsay L. Richter, Jeffrey N. Bone, Claude Julie Bourque, Sofia Zhang-Jiang, Rebecca Pearce, Annie Janvier and Thuy Mai Luu
Children 2023, 10(5), 880; https://doi.org/10.3390/children10050880 - 14 May 2023
Cited by 4 | Viewed by 1958
Abstract
Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders’ perspectives on this classification. Ten clinical scenarios [...] Read more.
Children born very preterm are at risk of severe neurodevelopmental impairment, a composite endpoint that includes cerebral palsy, developmental delay, and hearing and visual impairment defined by medical professionals. We aimed to describe preterm birth stakeholders’ perspectives on this classification. Ten clinical scenarios describing 18-month-old children with different components of severe neurodevelopmental impairment and one scenario of a typically developing child (control) were distributed to parents and stakeholders using a snowball sampling technique. For each scenario, participants rated health on a scale from 0 to 10 and whether the scenario represented a severe condition. Results were analyzed descriptively and mean differences from the control scenario were compared using a linear mixed-effects model. Stakeholders (number = 827) completed 4553 scenarios. Median health scores for each scenario varied from 6 to 10. The rating for the cerebral palsy and language delay scenario was significantly lower (mean difference −4.3; 95% confidence interval: −4.4, −4.1) than the control. The proportion of respondents rating a scenario as “severe” ranged from 5% for cognitive delay to 55% for cerebral palsy and language delay. Most participants disagreed with the rating used in research to describe severe neurodevelopmental impairment in preterm children. The term should be redefined to align with stakeholder perceptions. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
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13 pages, 286 KiB  
Article
Parental Narratives of Bonding and Relational Experiences with Preterm Infants Born at 23 to 24 Weeks—A Qualitative Descriptive Study
by Anniina Väliaho, Liisa Lehtonen, Anna Axelin and Riikka Korja
Children 2023, 10(5), 793; https://doi.org/10.3390/children10050793 - 28 Apr 2023
Viewed by 1352
Abstract
(1) Background. The birth of an infant at 23 to 24 weeks poses a significant challenge to healthy parent–infant bonding because of the high risk of infant loss and the prolonged separation. The aim of this study was to retrospectively explore the narratives [...] Read more.
(1) Background. The birth of an infant at 23 to 24 weeks poses a significant challenge to healthy parent–infant bonding because of the high risk of infant loss and the prolonged separation. The aim of this study was to retrospectively explore the narratives of parents with children born at 23–24 weeks about their bonding formation and relational experiences. (2) Methods. This was a qualitative descriptive study conducted with Finnish parents of children born at 23 or 24 weeks of gestation. Twenty-nine mothers and eight fathers were retrospectively interviewed using a semi-structured interview about the bonding process with their infant during the period in the neonatal intensive care unit (NICU) and their later parent–child relationship. Parents’ narratives were deductively analysed according to a framework previously developed for studying parental bonding. (3) Results. Our results showed that several parents described the bonding process as natural or even easy despite the traumatic start to parenthood. Support from NICU staff and providing opportunities for participation in infant care and parent–infant physical closeness were reported to enhance the bonding process. Our study identified earlier parenting experience as a new element supporting bonding. (4) Conclusions. According to our results, essential elements enhancing parent–infant bonding in NICU settings seem to be supporting parents psychologically, promoting parent–infant closeness, and encouraging parental participation in the infants’ care, even with the most immature infants. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)

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0 pages, 503 KiB  
Study Protocol
Collaborating to Improve Neonatal Care: ParentAl Participation on the NEonatal Ward—Study Protocol of the neoPARTNER Study
by Hannah Hoeben, Milène T. Alferink, Anne A. M. W. van Kempen, Johannes B. van Goudoever, Nicole R. van Veenendaal, Sophie R. D. van der Schoor and on behalf of the neoPARTNER Study Group
Children 2023, 10(9), 1482; https://doi.org/10.3390/children10091482 - 30 Aug 2023
Cited by 2 | Viewed by 1272
Abstract
Parents are often appointed a passive role in the care for their hospitalised child. In the family-integrated care (FICare) model, parental involvement in neonatal care is emulated. Parental participation in medical rounds, or family-centred rounds (FCR), forms a key element. A paucity remains [...] Read more.
Parents are often appointed a passive role in the care for their hospitalised child. In the family-integrated care (FICare) model, parental involvement in neonatal care is emulated. Parental participation in medical rounds, or family-centred rounds (FCR), forms a key element. A paucity remains of randomised trials assessing the outcomes of FCR (embedded in FICare) in families and neonates, and outcomes on an organisational level are relatively unexplored. Likewise, biological mechanisms through which a potential effect may be exerted are lacking robust evidence. Ten level two Dutch neonatal wards are involved in this stepped-wedge cluster-randomised trial FCR (embedded in FICare) by one common implementation strategy. Parents of infants hospitalised for at least 7 days are eligible for inclusion. The primary outcome is parental stress (PSS:NICU) at discharge. Secondary outcomes include parental, neonatal, healthcare professional and organisational outcomes. Biomarkers of stress will be analysed in parent–infant dyads. With a practical approach and broad outcome set, this study aims to obtain evidence on the possible (mechanistic) effect of FCR (as part of FICare) on parents, infants, healthcare professionals and organisations. The practical approach provides (experiences of) FICare material adjusted to the Dutch setting, available for other hospitals after the study. Full article
(This article belongs to the Special Issue Family-Oriented Research to Improve Care of Preterm Infants)
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