Improving neonatal care with the help of veteran resource parents: An overview of current practices

Bourque, Claude Julie; Dahan, Sonia; Mantha, Ginette; Robson, Kate; Reichherzer, Martin; Janvier, Annie

doi:10.1016/j.siny.2017.10.005

Cited by 33 publications

(56 citation statements)

References 31 publications

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“…Research – and recommendations – describing how to develop a parent advisory board is scarce. Many knowledge gaps exist and many questions have not yet been answered: how many parents, how to ensure that the parents are representative of the “general population of parents,” when and how to practically involve them, for how long, how soon after their neonatal experience, should they be paid [1]?…”

Section: Historymentioning

confidence: 99%

“…Noninferiority studies in particular are often presented with tortuous phrases such as “This study of women with gestational diabetes failed to show that use of glyburide compared with subcutaneous insulin does not result in a greater frequency of perinatal complications” [34], which are difficult for anyone to interpret, let alone the general public. Expert resource parents can help us optimize the knowledge transfer aspect of our research [1]. …”

Section: Historymentioning

confidence: 99%

“…Resource parents have been involved in Neonatology in many different ways [1]. They can contribute to an environment where research is valued, and its importance understood.…”

Section: Historymentioning

confidence: 99%

“…Despite this, parents have recently been involved in planning, performing, analyzing, and publicizing research. Over the past decade, veteran parents who have lived an NICU experience have become increasingly involved as resource parents to provide peer-to-peer support to “new” NICU parents [1]. They can also assume other roles in clinical care, research, administration, and/or teaching, but those roles are rarely described in the literature [1].…”

Section: Introductionmentioning

confidence: 99%

“…Over the past decade, veteran parents who have lived an NICU experience have become increasingly involved as resource parents to provide peer-to-peer support to “new” NICU parents [1]. They can also assume other roles in clinical care, research, administration, and/or teaching, but those roles are rarely described in the literature [1]. For the past decade, we have involved resource parents in neonatal research initiatives [2-7].…”

Section: Introductionmentioning

confidence: 99%

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Integrating Parents in Neonatal and Pediatric Research

et al. 2019

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Background: Parents and their infants are the beneficiaries of neonatal and pediatric research, but in the past they have been excluded from most stages of research projects. As a result, many projects may fail to produce the most worthwhile information for parents and families. Lately, veteran resource parents and patients have been increasingly integrated in research initiatives. Methods: Benchmarking of neonatal and pediatric research initiatives where resource parents and/or ex neonatal patients have helped to optimize pediatric research. We review ways in which resource parents/patients can be involved in research, with examples and practical ideas of how to proceed. Results: Resource parents/patients can be collaborators in research and be integrated in many steps: prioritizing research projects, designing trials, determining the outcomes of interest, ethics review, developing and improving consent procedures, collection and interpretation of data, participation in data safety monitoring committees, publication of results, and presentation to peer groups. Some of the strategies for integration of stakeholders in clinical research are more complex, may involve risk and require more training than others. Conclusion: We suggest that groups wanting to involve parents in their research endeavors start with simpler tasks that entail less risk and develop teams of resource parents who have differing interests and abilities. Quality control of programs is essential, such as frequently giving and obtaining feedback from resource parents/patients and researchers. In the future, integration of resource parents/patients into every step of clinical research will be essential to ensure that parent and family important outcomes are examined.

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Section: Historymentioning

confidence: 99%

Section: Historymentioning

confidence: 99%

“…Resource parents have been involved in Neonatology in many different ways [1]. They can contribute to an environment where research is valued, and its importance understood.…”

Section: Historymentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Integrating Parents in Neonatal and Pediatric Research

et al. 2019

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The evolution of family‐centered care: From supporting parent‐delivered interventions to a model of family integrated care

Franck

O’Brien

2019

Birth Defects Research

198

223

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There is increasing recognition that parents play a critical role in promoting the health outcomes of low birthweight and preterm infants. Despite a large body of literature on interventions and models to support family engagement in infant care, parent involvement in the delivery of care for such infants is still restricted in many neonatal intensive care units (NICUs). In this article, we propose a taxonomy for classifying parent‐focused NICU interventions and parent‐partnered care models to aid researchers, clinical teams, and health systems to evaluate existing and future approaches to care. The proposed framework has three levels: interventions to support parents, parent‐delivered interventions, and multidimensional models of NICU care that explicitly incorporate parents and partners in the care of their preterm or low birthweight infant. We briefly review the available evidence for interventions at each level and highlight the strong level of research evidence to support the parent‐delivered intervention of skin‐to‐skin contact (also known as the Kangaroo Care position) and for the Kangaroo mother care and family integrated care models of NICU care. We suggest directions for future research and model implementation to improve and scale‐up parent partnership in the care of NICU infants.

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