Background
Over the years, parents' experiences of admission of their preterm (born before 37 weeks of gestation) or sick newborn infant to the NICU have been explored globally. When parents begin their parenthood in the NICU, they are at risk of developing stress related to their parental role as they will be worried about the infant's survival and the risk of future disabilities.1-3 Longitudinal studies examining the experiences of parents of preterm infants point to the increased risk of stress disorders resulting from their initial hospitalization, even after discharge.4-6 Neonatal intensive care unit nurses play an important role in helping parents to adjust to different stressors in the NICU, and the nurse-parent relationship is shown to be important in relieving parental stress.7
Family-centered care (FCC) is emphasized as an essential element of neonatal care. It is an approach to health care that is grounded in mutually beneficial partnerships between patients, families and healthcare professionals.8 The core concepts of FCC comprise respect, dignity, information sharing, participation and collaboration.7,9 Communication is a key component of FCC and is of utmost importance for the establishment of nurse-parent relationships.10
Parents identify communication with healthcare professionals as fundamental for managing their situation.7,11 Parents' experiences of communication in the NICU are described as either positive or negative, depending on the support they receive to help them manage their child's hospital stay.9,12,13 Professional communication incorporating empathy, information sharing and support of parenting efforts is perceived by the parents as integral to the development of supportive interactions.14
Effective communication is communication involving trustworthy dialogue, where parents feel reassured, confident and part of a functional team.13,14 It promotes the goals of FCC by facilitating a mutual understanding of concerns in order to reach shared decisions that respect the parents' desires to be involved. The focus is on understanding the parents within their own unique contexts and to reach a mutual understanding of the problem and its solution based on personal needs and experiences. Parents' experiences of effective communication empower them and help them make their own decisions concerning their infants' care.7
Conversely, ineffective communication may cause parents to feel like outsiders.12,13 This occurs when parents feel that their concerns and grief are not acknowledged.9,13 Parents may feel bewildered and in fear of doing the wrong thing.14 Hence, ineffective communication may disempower parents and negatively impact on infant and family development.12,15
The content and form of communication that may assist parents may vary during different phases of the NICU admission.16 Generally, these phases are related to the severity of the condition of the infant and requirements of care and treatment. Parent satisfaction with communication also seems to decrease during the admission period when there is a lack of communication or inconsistencies in information.17
A preliminary search using PubMed, CINAHL and the JBI Database of Systematic Reviews and Implementation Reports identified no systematic reviews addressing parents' experiences of communication with healthcare professionals in the NICU or a similar topic. Therefore, synthesizing literature to obtain greater insight into parents' experiences of communication with healthcare professionals is deemed important to inform improvement of family-centered communication practices.
Inclusion criteria
Types of participants
The current review will consider studies that include parents of infants in the NICU. It will consider studies of parents of preterm and full-term infants independent of infant diagnosis and length of stay. Studies reporting findings of communication related to end-of-life care will not be included. No other exclusion criteria will be applied.
Phenomena of interest
The current review will consider studies that investigate parents' experiences and the meaningfulness of communication with healthcare professionals.
Context
The context of the review will be neonatal intensive care units.
Types of studies
The current review will consider studies that focus on qualitative data including, but not limited to, designs such as phenomenology, grounded theory, ethnography, action research and feminist research.
Search strategy
The search strategy aims to find both published and unpublished studies. A three-step search strategy will be utilized in this review. An initial limited search of MEDLINE and CINAHL will be undertaken followed by analysis of the text words contained in the title and abstract, and of the index terms used to describe the article. A second search using all identified keywords and index terms will then be undertaken across all included databases. Third, the reference list of all identified reports and articles will be searched for additional studies. Studies published in English, Swedish, Norwegian and Danish will be considered for inclusion in this review. Studies published from January 2006 to January 2016 will be considered for inclusion in this review. Prior to this period, the development of FCC, including person-centered communication, had been increasingly adopted in general practice in neonatal care. Hence, we believe that including studies from the last 10 years will reflect the objective of the review in the improved clinical practice.
The sources to be searched include:
MEDLINE
CINAHL
EMBASE
PsycINFO
Scopus
DOAJ (Directory of Open Access Journals)
OpenGrey
MedNar
ProQuest Dissertations and Theses
The search for unpublished studies will include Institute for Patient and family-centered care webpage and Google Scholar
Initial keywords to be used are listed in Table 1. These keywords will be translated in to Swedish, Danish and Norwegian, and a similar search will be conducted for each language.
Assessment of methodological quality
Papers selected for retrieval will be assessed by two independent reviewers for methodological validity prior to inclusion in the review using standardized critical appraisal instruments from the Joanna Briggs Institute Qualitative Assessment and Review Instrument (JBI-QARI) (Appendix I). Any disagreements that arise between the reviewers will be resolved through discussion or with a third reviewer.
Data extraction
Data will be extracted by two independent reviewers from papers included in the review using the standardized data extraction tool from JBI-QARI (Appendix II). The data extracted will include specific details about the phenomena of interest, populations, study methods and outcomes of significance to the review question and specific objectives.
Data synthesis
Qualitative research findings will, where possible, be pooled using JBI-QARI. This will involve the aggregation or synthesis of findings to generate a set of statements that represent aggregation, through assembling the findings (Level 1 findings) rated according to their quality, and categorizing these findings on the basis of similarity in meaning (Level 2 findings). These categories will then be subjected to a meta-synthesis to produce a single comprehensive set of synthesized findings (Level 3 findings) that can be used as a basis for evidence-based practice. Where textual pooling is not possible, the findings will be presented in narrative form.
Appendix I: Appraisal instruments
QARI appraisal instrument
Appendix II: Data extraction instruments
QARI data extraction instrument
References