The Family Snapshot–Innovation to integrate family context into daily interactions in the NICU

Abstract

Aim

Current literature favours individualised decision making, an approach that requires understanding patients within their context and tailoring treatment and recommendations to their unique needs. In neonatology, family context becomes synonymous with patient context. In the neonatal intensive care unit (NICU), the team may be challenged to understand the intricacies of the family context, paramount for both families and clinicians. However, a significant gap exists between the intent to share information about the family context and the process of doing so. The transformational goal of this project was to embed an understanding of the family context into all interactions that occur in the NICU between clinicians and families, and between clinicians when discussing patients.

Methods

We designed and implemented the Family Snapshot (FS), an innovation to bridge the gap between the intent and the process to share the family context.

Results

Two groups of process measures have been collected to understand workflow integration: (1) whether the forms are being used and (2) how the forms are being used. Overall, completion of at least some part of the FS was >90%.

Conclusion

This manuscript describes our process, its feasibility and impact and presents two tools, the FS antenatal consultations and the FS tab.

Abbreviations

EMR

Electronic medical record

FS

Family snapshot

NICU

Neonatal intensive care unit

PDSA

Plan‐Do‐Study‐Act

SW

Social worker

Key notes.

• Understanding patients within their context is central to individualised decision making, yet a significant gap exists between the intent to share information about context and the ability to capture it.

• This study finds a practical applicable way of bridging this gap in a neonatal intensive care unit through the implementation of an innovation named the Family Snapshot.

• Innovating a practical solution highlighted some anticipated issues and uncovered some subtle nuances.

1. PROBLEM DESCRIPTION

Ongoing debate persists surrounding the most effective and ethical approach to medical decision making. Current literature favours individualised decision making, ¹ , ² an approach that requires understanding of patients within their context and then tailoring treatment and recommendations to their unique needs. This strategy transcends seeing the patient as a set of diagnoses, instead urging the clinician to view their patients, particularly within paediatrics, within the broader context of their environment, both within the family and their broader community. An appreciation of the family context guides clinicians to tailor their approach to the patient in front of them. ³ , ⁴ In paediatrics, and specifically in neonatology, family context becomes synonymous with patient context. Family context encompasses a spectrum of factors, ranging from family members' names, pronouns, occupations, family structure and past experiences. In essence, it encapsulates everything that renders each family distinct. ⁴ , ⁵ , ⁶ Cultural or religious beliefs and family values are also very important supplements to the family context. Throughout this manuscript, the term ‘family context’ will denote this comprehensive understanding.

Understanding the intricacies of the family context, beliefs and values is critical for both the families and clinicians in the neonatal intensive care unit (NICU) where patients are unable to advocate for themselves in the setting of potentially life‐altering decision making. A qualitative study of family and clinician's perspectives and experiences conducted in our local unit ⁵ demonstrated this concept and was strongly corroborated by the literature. ⁷ , ⁸ , ⁹ , ¹⁰ , ¹¹ Families in the NICU are consistently navigating a dynamic landscape of changing clinicians dictated by shift work, necessitating the continuous establishment of new relationships and trust with their infant's caregivers. Research has also highlighted the fragmentation in how family context is shared across providers. ⁵ Parents spoke about a disconnect related to the understanding of their family context between providers and complained of exhaustion from being required to reiterate their narrative daily to each new clinician. ⁵

The benefits of understanding and sharing the family context extend beyond the patient–physician relationship; it can impact the relationship with the entire interprofessional care team. Knowing the family context, beliefs and values promotes the clinician's capacity to provide individualised care and parental feelings of being respected as individuals. ⁵ , ⁶ , ⁸ , ¹² It helps the clinical team support families in both decisions about routine care (preferences for parent involvement in care, etc.) as well as decisions around critical illness (goals of care discussions, etc.). However, a significant gap is repeatedly identified between the intent to share information about the family context and the process of doing so. Clinicians in the NICU described a lack of structure to facilitate narrative competence or the ability to acknowledge a family's story and integrate it to provide more personalised empathetic care. ¹³ They describe a ‘broken telephone’ phenomenon when information about the family context is relayed verbally. ⁵ While there are a few publications describing ways for individual physicians to integrate it into their practice, ⁷ , ⁹ none to our knowledge describe how to integrate such a practice around family context into an interprofessional and multidisciplinary team approach. It is not solely the responsibility of physicians to consider the family context, beliefs and values while making what they perceive to be ‘crucial’ decisions, but for the family context to be considered in every conversation by every clinician as a key aspect of their approach to the patient.

The transformational goal of this project was to embed an understanding of the family context into all interactions that occur in the NICU between clinicians and families, and between clinicians when discussing patients and their families. This is well aligned with Institute for Healthcare Improvement pillars of healthcare quality, targeting patient centredness, efficiency, safety and equity and aims to improve the population well‐being, satisfaction and provider's satisfaction. ¹⁴ As part of the project, we developed and tested the Family Snapshot (FS) innovation, designed to bridge the gap between the intent and the ability to share the family context within an interprofessional neonatal team. This project took place in an academic tertiary care NICU in Toronto, Canada. The tools created and their implementation using quality improvement methodology are described below.

1.1. Initiative description

In order to embed an understanding of the family context into all interactions within the NICU, a steering committee was assembled with interprofessional and parental representation. The team consisted of a neonatal fellow, neonatologists, nurse, nurse practitioner, respiratory therapist, social worker, charge nurse and parent advisors, who began their work by mapping out the ways clinicians and families interact in the NICU to ensure every moment could be captured. To best understand the issue of family context within the institution, interviews with parents and clinicians were completed and analysed. ⁵ Our findings highlighted that understanding the family context had a positive impact on relationships between families and clinicians and helped parents feel more respected as people. However, the process by which the family context was understood and shared by all involved was described as a ‘broken telephone’.

Based on these findings, and additional insights from the literature, ⁷ , ¹⁵ , ¹⁶ , ¹⁷ we developed the FS, an innovation to support enhanced sharing of the family context in our NICU. It is integrated into the electronic medical record of each patient and allows for continuous updating by all members of the interprofessional team. The FS supports the clinical team to build upon previous conversations around the family context instead of restarting discussions with each new care provider. Although it is beyond the scope of the FS to guide the discussions themselves, the FS does prompt clinicians to support parents in affirming their role as parents, which is a crucial aspect of the care of their infant, and further providing them with suggestions for their involvement within the NICU.

The FS was integrated into two separate but related electronic documentation tools: the Family Snapshot Antenatal Consult (Appendices S1 and S2–FS Antenatal Consults) and in the infant's chart as the Family Snapshot Tab (Appendix S3–FS Tab). These tools are created to complement each other as the relationship between the clinical team and the family evolves and to continuously update as more information is entered.

The FS Antenatal Consults (Appendices S1 and S2) provide a standardised approach to antenatal consults¹ that facilitates sharing the family's unique context with the clinician. The specific contents were selected after thorough discussion and liaising with family advisors. It guides the clinician to start the consult by asking about family context before information sharing, allowing for an understanding of parental fears and expectations and tailoring information sharing to parent's existing knowledge and prior experiences. Ultimately, it encourages clinicians to meet families where they are, instead of asking the families to meet clinicians at their level of understanding and knowledge.

In efforts not to lose important contextual information shared by families during an antenatal consult, this information is then transcribed into the infant's chart after birth through a neonatal admission note (note–due to different Electronic Medical Record (EMR) systems between Neonatology and Obstetrics, this information was not able to be automatically populated from the maternal chart). This information in the neonatal admission note is auto‐populated into the FS tab in the chart and accessible by the entire care team throughout the entire admission. This information entered into the FS tab can be edited as needed, as family context continually evolves, as does the neonatal team's understanding of it. Any NICU team member may open the tab and easily read, add or remove information as applicable. The FS tab is meant to represent a ‘snapshot’ of the family and the relationship with the clinical team at that moment in time. It functions as a live working document; as clinicians enter or remove information it is saved so that the next person who opens the chart can see the most updated information. However, on the backend, the information is saved as part of the chart. The FS tab also allows for integration of family context information from care² conferences. ¹⁸ Please see Figure 1 for the workflow of information related to the sharing and documentation of the family context.

FIGURE 1.

The workflow and dataflow of information pertaining to the family context within the infant's chart. Sovera is the information system that amalgamates and stores paper and electronic health information of each patient in an electronic format. (Due to the antenatal consult being part of the maternal chart in a different EMR in our hospital, the FS Antenatal Consult is not part of this dataflow.)

2. ITERATION AND PIVOTS

The FS tools in the NICU were launched in April 2022. Since their introduction, qualitative data and quantitative measures are being collected monthly to understand how this innovation is being integrated into the workflow. These data facilitate understanding of usage patterns and guide the adaptation of the intervention. Qualitative user feedback about the tools and their integration into workflow is collected informally through discussions and formally through stakeholder meetings and focused meetings with users in different clinical roles. Quantitative information includes how often information about the family context is being completed in FS Antenatal Consults, the neonatal admission note and the FS tab and is collected by using monthly spot checks of all birth parents who had an antenatal consult and of all neonates admitted to the NICU. The role of the clinician completing the FS tab is also being collected as a data point. Prior to implementation of the FS, there was no place on the handwritten antenatal consult and neonatal admission forms to document about family context; thus, the baseline was zero. Five core Plan‐Do‐Study‐Act (PDSA) cycles are described below.

2.1. The FS antenatal consult development, implementation and iterative improvements

The first time the NICU team meets a family is during the antenatal consult. Therefore, restructuring the approach to antenatal consults to incorporate family context was instrumental. In this centre, antenatal consults for prematurity are generally inpatient consults completed by medical trainees. Knowing the importance of words chosen in conversations and knowing that asking about family context at the start of a consult was generally novel for both the trainees and the families, the first step in developing the FS Antenatal Consult was the creation of scripts to support trainees in asking these questions. Two different scripts were developed depending on the consult's goal: (1) information sharing (Appendix S1) or (2) decision making (periviability) (Appendix S2). The scripts were inspired by the literature, ¹ , ⁹ , ¹⁶ , ¹⁹ , ²⁰ , ²¹ written by the steering committee, vetted and edited by parent advisors and finally trialled and tested by trainees and neonatologists.

Based on user feedback, many edits were made to the antenatal consult process. Two crucial edits included: outlining the goal at the beginning of the consult to help set parental expectations for the conversation, and second, stating that these were conversations and questions we had with all families to help address anticipated perceived stigma in being asked more ‘personal’ questions. Appendices S1 and S2 show the FS Antenatal Consults with the attached scripts (in grey italic writing). The same consult without the suggested script is uploaded to the = EMR as a template to facilitate completion. The FS Antenatal Consults with the scripts are printed and available for trainees to bring with them in the room, to serve both as a prompt and as a place to take notes. Initially, only a brief description of the process was provided. However, most trainees had previously been exposed to variable approaches to antenatal consults and they did not feel that the new template alone was enough to understand how to lead a narratively competent antenatal consult. This resulted in establishing an education session on how to conduct antenatal consults complete with evidence‐based background and tangible examples added at the start of every rotation with all new trainees. The tool itself is presented as part of that orientation.

2.2. The FS tab development

In order to ensure the transfer of information about the family context from the FS Antenatal Consult to the newborn's chart, the FS tab (Appendix S3) was created with the same subsection headers as the FS Antenatal Consult. Several new sections are added to facilitate focus on the family's routine and timelines, now that the baby was born, highlighting enablers and barriers to being with their child. All clinicians are able to edit it as things evolve with the family throughout the NICU stay.

2.3. Integration into the electronic medical record

There was considerable debate amongst the steering committee about how best to integrate the FS into the EMR. Prior to the FS, information about a family's social context was inconsistently collected, though not part of the permanent chart. Some considered that the FS should only be an expanded version of this informal process and not become part of the official chart. However, through the interviews, surveys and chart reviews, we noted that information inputted into this section was often incorrect and lacked impartiality, often described as ‘gossip’. Furthermore, evidence demonstrates stigmatising language propagates bias within the healthcare team further emphasising the necessity of guidance for neutral language to be used. ²² The presumption is that having it as part of the EMR would facilitate accuracy and encourage impartiality.

There was also discussion regarding feasibility of parental access to the FS and them being able to input information. Parents had differing opinions on whether they would want to have access and whether they would make use of the tool. Further exploration was halted as the EMR used at our institution was not able to offer this option. However, this could be considered with a different EMR that allows patient access more readily. After the launch, several layout changes were made to facilitate the tool's visualisation, based on user feedback.

2.4. Launch of the FS toolkit

Prior to launch, education sessions were held with high‐risk obstetrical nurses and physicians and the entire NICU care team including bedside nurses, respiratory therapists, nurse practitioners, charge nurses, educators, social workers, neonatal fellows and residents and neonatologists; between 82% and 100% of each discipline were educated. The launch was supplemented by email announcements and posters throughout the unit. Educational content included the goal of the FS, where to find it in the chart, discipline‐specific uses and how to complete it.

2.5. Ongoing education about the FS toolkit

After the launch, several additional education PDSA cycles for the FS tab continued to be tailored to each specialty based on the data collected, at times having several education sessions per specialty. These education cycles focused on why this can help facilitate the work of each interprofessional group.

We conducted chart reviews to determine which team members were completing the FS tab, and there was a noted absence of input from less experienced nurses. In conjunction with the unit's Nurse Mentors who work most closely with junior nurses, education focused on how the FS could facilitate their work. For example, demonstrating to bedside nurses that a prior knowledge of parental context can help build relationships at the bedside significantly increased the uptake, especially by the newer nurses. This was further solidified by visual reminders on all computers in the unit. Showing physicians that in using the FS tab it would quicken their family meetings and encourage other team members to read the family meeting notes, while simultaneously building stronger relationships with families improved physician uptake.

Demonstrating that the FS tab provided consistent, readily available, accurate data on the family context helped improve uptake amongst the neonatal team. Previously, these data were scattered in multiple locations (total of eleven potential locations) making access, and uptake, inconsistent and increasing the risk of error and mistaken assumptions. Showing how streamlining these data allowed more efficient usage for bedside staff and their colleagues, social worker (SW) uptake improved. However, the SW group still felt like this entailed some increased upfront workload which has not been able to be addressed yet through the EMR.

2.6. Incorporation into discharge planning rounds

Weekly discharge planning rounds occur in the unit with SW, lactation consultants, nursing leadership and the medical group which focus on ensuring a shared mental model ²³ amongst clinicians about the social dynamics of families to be able to support parents in supporting their babies while in the NICU. The sharing of FS information at these rounds facilitates discharge planning. In practice, incorporating the use of the FS tab as a starting point for these rounds improved focus on the family context and the identification of facilitators and barriers for families to spend time with their babies. This cycle increased the uptake of the FS tab as it started being updated during these rounds as well as by clinicians at the bedside.

3. PROCESS MEASURES

Two main groups of process measures have been collected monthly to understand workflow integration: (1) whether the forms are being used and (2) how the forms are being used. These usage patterns are guiding interventions in the form of PDSA cycles. Monthly spot chart reviews of all completed antenatal consultations, and neonatal admissions, and FS for all admitted neonates, were completed to assess if the FS section was being completed. The patterns of use by using percentage of charts with information about the family context of these three forms are shown as P‐charts in 1, 2, 3 and the PDSA cycles described previously are plotted, allowing for a two‐month phase‐in period. Information about the family context documented in the FS Antenatal Consults improved with an average of 89% over the course of implementation, with a run above the average since late 2024 (Graph 1). Graph 2 shows increasing inputting of information about the family context in the neonatal admission over time, with a significant change after the education to the nurse practitioners about the importance of the FS. Finally, the third graph shows the availability of information in the FS tab increases steadily over time to over 90% with differing PDSA cycles.

GRAPH 1.

Since the launch, the FS Antenatal Consult section for family context was consistently filled out except for the one outlier in May 2023. Outlier noted to be on a block with all trainees who had rotated through the unit prior to July 2022 therefore had not received the additional antenatal consultation education. A run above the average is noted since November 2023.

GRAPH 2.

Steady increase in completion of information about the family context, especially following PDSA addressing nurse practitioner (NP) needs and workflow as they complete most of the neonatal admission notes.

GRAPH 3.

Graph shows uptake of the FS tab within 3 months of launch. After PDSA cycles targeting the most important stakeholders using the FS tab, a shift is noted in the completion of information regarding family context in neonates' charts.

All data entered in the neonatal admission note, the care conference notes and the FS tab are collected monthly to facilitate understanding of how these forms were being used, including by whom (clinician role) the form was completed. All forms feed into the FS tab; thus, only the content of FS tab was analysed to better understand how the forms were being used. Data were analysed by classifying the content into three categories: (1) demographics (names, pronouns, occupations, routine family time), (2) family context (family structure, support system, enablers/barriers to spending time in the NICU, previous experiences that can shape current experience) and (3) values and beliefs (religious and/or cultural beliefs, hopes, fears). Overall, the type of information entered was fairly consistent over the 18‐month period since implementation. Almost all patients (97%) had demographic data entered, 81% had contextual information documented in the FS tab, and 30% had information documented on their values and beliefs.

4. KEY INSIGHTS AND SURPRISES

We report here the family snapshot tool as an innovation and its successful implementation, made up of two integrated electronic tools designed to bridge the gap between the intent and the ability to share the family context, beliefs and values, within an interprofessional neonatal team. We present the FS Antenatal Consult tools (Appendices S1 and S2), designed to support trainees in leading a narratively competent antenatal consult that integrates the family context, beliefs and values, and we present the FS tab (Appendix S3), designed for the neonatal chart to support the documentation and sharing of information about the family context between clinicians caring for the infant. The implementation process is described alongside lessons learnt to support other units in implementing a similar approach.

The implementation of the FS highlights the need for strong buy‐in to support practice changes; framing changes in ways that demonstrate for each discipline how the tool can facilitate their work is crucial. We ensured that the targeted education for each discipline focused on the ways that the tool can facilitate their work.

Less anticipated insights were the wide variety of reactions from families. The parent representatives on our steering committee reported that while the intention was to use the information gained to help individualise care, some families were concerned that they might be stigmatised should they share this information about themselves. This feedback prompted us to change our approach to the education of parents, highlighting why these questions were being asked (individualisation of care) and normalising the approach by highlighting that such questions were asked of all parents whose babies were receiving care in the NICU.

Another key insight was how the tool was used. Demographic data were almost always present, and most had information about family context, but only a third documented parental values and beliefs. These findings suggest that conversations around values and beliefs may be occurring less frequently or difficult to conduct. This is postulated to be because most infants in the NICU are not having goals of care discussions. There is also a possibility that parents may not feel comfortable sharing this information in fear that it is recorded in the chart. However, these are all hypotheses. We plan to explore this further to understand if the avoidance of asking these questions is due to perceived non‐value of the information because of clinical context, due to clinician discomfort around asking these types of questions, or if the avoidance of answer from parents for fear of this information being charted in further steps in this research. Some of these potential causes highlight the need for further education to promote the complete use of this tool should parents want to share this information.

We used the innovation adoption curve to better understand the demographics of the uptake and to identify the next steps for implementation. ²⁴ The early adopters of this innovation comprised two type of clinicians: seasoned clinicians and newer clinicians, that is subspecialty residents and fellows in‐training. We can hypothesise the reasons for ease of adoption for both of these groups but further exploration may be warranted. Then, by clearly demonstrating how this tool facilitates each clinician's job allowed for the engagement of the early majority.

5. CONCLUSION AND NEXT STEPS

Implementation of the FS toolkit with education, demonstration of utility and education on benefits, was feasible and sustainable. Next steps include ongoing PDSA cycles that are higher on the hierarchy of effectiveness such as embedding of the family context into clinician handover and bedside rounds as a way of engaging with the late majority. ²⁵ Further evaluation of how this innovation affects clinician's perception of understanding the family context beliefs and values, how they document and share it, and how this innovation impacts families' perception of individualised care and feeling understood by the clinical team is being conducted.

Individualisation of care and decision making has become the gold standard in medicine and in particular paediatrics. Central to individualisation of care is understanding a patient's, or in the case of paediatrics, their families' context. However, despite its' stated popularity, no literature to date describes how an interprofessional and multidisciplinary team, such as those that exist on inpatient hospital wards and in intensive care units, can facilitate a shared mental model of a patient or family's context. Innovating a practical solution to address this gap in the current intensive care model highlighted some anticipated issues and also uncovered some subtle nuances.

Next steps include an assessment of the project’ overall impact through (1) parent and clinician perceptions on the implementation of this innovation and (2) how the FS has impacted the integration of family context into all interactions. As a later potential goal, we will study the adaptation of this innovation in other units and settings.

AUTHOR CONTRIBUTIONS

Maya Dahan: Conceptualization; investigation; funding acquisition; writing – original draft; methodology; validation; visualization; writing – review and editing; formal analysis; project administration; supervision; resources. Leahora Rotteau: Investigation; writing – original draft; methodology; visualization; writing – review and editing; formal analysis; supervision; resources. Asaph Rolnitsky: Investigation; methodology; writing – review and editing; formal analysis; supervision; resources; project administration. Shelley Higazi: Conceptualization; methodology; writing – review and editing; project administration. Ophelia Kwakye: Methodology; writing – review and editing; project administration; conceptualization. Giselle W. S. Lai: Methodology; writing – review and editing; project administration; conceptualization. Wendy Moulsdale: Methodology; writing – review and editing; project administration; conceptualization. Lisa Sampson: Methodology; writing – review and editing; project administration; conceptualization. Jennifer Stannard: Conceptualization; methodology; writing – review and editing; project administration. Karel O'Brien: Conceptualization; investigation; funding acquisition; writing – original draft; writing – review and editing; visualization; methodology; formal analysis; supervision; resources. Paige Terrien Church: Resources; supervision; formal analysis; project administration; writing – review and editing; visualization; methodology; writing – original draft; funding acquisition; investigation; conceptualization.

FUNDING INFORMATION

This study was partially funded by CHILD‐BRIGHT Graduate Student Fellowship in Patient‐Oriented Research.

ETHICS STATEMENT

This study has REB approval at Sunnybrook Health Sciences Center.

CONFLICT OF INTEREST STATEMENT

The authors have no conflicts of interest to declare.

Supporting information

Appendices S1–S3.

Dahan M, Rotteau L, Rolnitsky A, Higazi S, Kwakye O, Lai GWS, et al. The Family Snapshot–Innovation to integrate family context into daily interactions in the NICU . Acta Paediatr. 2025;114:913–921. 10.1111/apa.17503