BACKGROUND AND SIGNIFICANCE
Family-centered care in neonatal intensive care units (NICU) is a philosophy and a model of care that recognizes the infant's family as a partner in caregiving. Family-centered care includes family members in infant caregiving and decision making and provides psychosocial, educational, and physical supports to families so that they can be present and active in their infant's care.1,2 The NICUs with advanced family-centered care practices include families of former NICU infants in unit- and hospital-level organizational activities including staff education, safety and quality committees, and facilities design. Despite the substantial evidence for its effectiveness in improving infant and family outcomes,3,4 there is a lack of consensus on the operationalization of the principles and tremendous variability in the implementation of family-centered care. Scrutiny of the specific policies, practices, and routines often reveals a predominance of provider-centered rather than family-centered care in many NICUs.5-7
Research on family-centered care implementation has focused on describing the perceptions of parents/guardians or nurses. The NICU healthcare professionals rate their practices as generally moderate to good, with some variation related to professional role and years of experience.8-12
Three recent studies describe some of the challenges for healthcare professionals in implementing family-centered care. In one qualitative study,13 16 healthcare professionals (nurses, nurse assistants, neonatologists, and managers) from 3 NICUs in Sweden and Norway were interviewed regarding their views on implementation of family-centered care. Staff behavior change was considered essential, and this was preceded by a shift in mindset to one where parents were viewed as the infant's primary caregivers, rather than the NICU staff. A second main theme was meeting family needs related to participation in caregiving, and in medical rounds, although some respondents felt that family participation in rounds was less important. A third theme was the influence of the NICU environment, with adequate and welcoming facilities for families necessary for successful family-centered care implementation. Finally, communication was identified as a critical factor in family-centered care, essential for the teaching, coaching, and support they provided to families. Nurses, in particular, noted the need for additional communication tools to more effectively deal with the strong emotions and difficult communication that might occur with parents in crisis.
Another interview study was conducted with 32 nurses from 8 NICUs in Finland after implementation of a family-centered care training program (the Close Collaboration Program).14 Four main themes were identified relating to the innovation of the program (the observable benefits for families and innovation of the training program), the context (including issues of timing, support, and unit design), influence on the staff recipients of the program (including role changes, motivation, and the multidisciplinary commitment), and the need for facilitation (including guidance from mentors and experiential learning). Team and leadership support and commitment were viewed as necessary to family-centered care implementation, whereas inadequate preparation for the change and nonsupportive unit design were viewed as barriers.
In the third study,15 36 neonatal healthcare professionals and hospital administrators from 10 level II NICUs in 1 province of Canada were interviewed. The analysis revealed one overarching theme encompassing the challenges of implementing family-centered care when the necessary health system supports are not in place or working well together. Interviewees recommended a number of improvements, including changes to staffing, professional development, consistency and continuity in care, greater recognition of parental capacity to be involved in care, more support for families to be with their infant, and more family-friendly NICU environments.
These 3 small studies13-15 highlight some consistent themes from frontline NICU healthcare professionals for the improvement of family-centered care, despite differences in country, health system, level of care, and approach to family-centered care. However, we found no qualitative studies from the United States, and further research is needed. Therefore, the purpose of this study was to synthesize comments and recommendations from US NICU frontline healthcare professionals regarding family-centered care practice.
What This Study Adds
* Insights into issues that NICU healthcare professionals perceive support or impede delivery of family-centered care.
* Family-focused actionable recommendations for improvement of family-centered care include additional language translation, communication, and educational and psychosocial supports for families to enable their participation in family-centered care.
* Staff- and hospital-focused actionable recommendations for improvement of family-centered care include communication between staff and families, staffing and workflow, team culture and leadership, education, and NICU environment.
* Resources for staffing, staff-parent communications, education, environmental supports, and team culture to enable family-centered care are common concerns among NICU healthcare professionals.
METHODS
Study Design and Setting
Data for this qualitative analysis were obtained from a multicenter survey of family-centered care practices completed by NICU healthcare professionals from 6 geographically and demographically diverse NICUs in California during the baseline (family-centered care) phase of a study comparing usual family-centered NICU care with mobile-enhanced family integrated care (mFICare) (NCT03418870).16 Two of the units had single or double family rooms and the other 4 units had a combination of open-bays or pods for 4 to 15 infants. A parent and clinician advisory group assisted with study design, survey selection, data interpretation, and manuscript preparation. The study was approved by the institutional review boards at each site.
Participants
Survey methods have been reported elsewhere.12 Briefly, the larger study was introduced at staff meetings and all nurses and providers (neonatologists, fellows, residents, and nurse practitioners) working at the sites during the survey period were invited by e-mail to complete the online survey. Weekly invitations were sent to nonresponders over a 4-week period.
Instruments
Participants were asked to complete the Family-Centered Care Questionnaire-Revised (FCCQ-R), a 45-item measure of healthcare professionals' perceptions of the practice and importance of 9 core dimensions of family-centered care.17 In addition, respondents were invited to provide free-text comments of any length regarding their recommendations for how family-centered care could be enhanced or comment on any other topic. The survey also included 5 demographic questions regarding professional role and experience.
Data Analysis
The free-text responses were analyzed using a directed content analysis approach, wherein existing theory or prior research is used as the basis for the initial coding (before beginning analysis).18 The initial codebook was developed from family-centered care principles and the 3 prior qualitative studies.13-15 The codebook was then refined iteratively by 3 members of the study team (L.F., R.B., and D.C.) and 1 nurse and 1 parent member of the advisory group (D.M., J.H.). Discrepancies were resolved through team consensus. After coding and review, the study team discussed the categories, subthemes, and themes, characterizing the content, language, and context of responses. Themes and subthemes were discussed with the larger study team and advisory group until consensus was reached.
RESULTS
Sample Characteristics
Of the 897 NICU staff who received the survey across the 6 study sites, 382 (43%) completed the FCCQ-R. Of those respondents, 68 (18%) provided 89 free-text comments. The sample consisted mostly of registered nurses (n = 62; 91%). The remaining respondents were physicians (n = 4; 6%) or neonatal nurse practitioners (n = 2; 3%). Sixty-five percent of the sample were 50 years of age or younger; and 35% of the sample were older than 50 years. The average years of neonatal experience was 15.98 (+/-13.20) years, with most of the experience at the participant's current workplace (15.24 +/- 12.32 years). The 68 respondents who included text comments in their survey did not differ from the 314 noncommenting survey respondents on any of the following characteristics: study site, clinical role, age, experience, or FCCQ-R scores.
Six main themes emerged from the analysis of the concerns and recommendations for family-centered care described in the comments: language translation; communication between staff and families; staffing and workflow; team culture and leadership; staff and parent education, and the NICU physical environment (Figure 1). Within each of these themes and subthemes, respondents described barriers and made recommendations for improvement. All units and participants are well-represented in each theme, and all themes are considered of equal priority, regardless of the (random) order of presentation. Each main theme is described in more detail later with example quotes. The quotes are provided to illustrate common responses, or different points of view when those varied. A full list of the comments by theme and subtheme is shown in Supplemental Digital Content Appendix 1, available at: http://links.lww.com/ANC/A79. No pattern of themes or subthemes was noted on the basis of NICU or respondent characteristics, other than for language translation, for which there were comments from only 3 of the 6 sites.
Language Translation
A prominent theme in the comments related to the need for greater availability of in-person, multilanguage translation. The comments came from 3 of the sites, describing the inadequacy of interpreter staffing, phone interpretation as a poor substitute for in-person translation, and the need for translation of parent educational materials in multiple languages. Respondents spoke about the negative impact that the lack of translation services had on their ability to teach and for families to learn how to care for their infants, especially with respect to discharge teaching. One nurse commented:
If we had on-site human interpreters to call if needed, teaching and education would benefit dramatically. I recently had an assignment where teaching was not complete because of language barrier, I believe. [Interpreter phone] wasn't working and if it was, it was still difficult to translate and parents reported that the interpreter "didn't make sense"; the translator phones were also difficult to use because of the background noise. (RN, <5 years of neonatal experience)
Communication Between Staff and Families
Comments regarding communication between staff and families focused on the impact on families of inconsistent team communication of plan of care and updates. Respondents described how difficult it was for families when there was a lack of timely communication about changes to their infant's plan of care, or inconsistency in what is being communicated.
I believe we do a pretty good job welcoming families. However, our communication with families could be improved. I think things become lost in translation with shift changes, staff changes and weekly provider changes. The difference in opinion amongst providers and changes to care with chronic kids can cause more stress on parents when plans of care are changed after a set plan was made. (RN, 5-10 years of experience)
Recommendations for primary nursing and a primary physician were proposed as solutions to address inconsistency in communication. Several respondents also made recommendations about using scheduling tools to improve consistency in communication between staff and families.
Parents appreciate the scheduled times for hands on. This isn't always possible but nurses try hard to keep the baby on a schedule so parents can be there for hands on. (RN, <5 years of neonatal experience)
Staffing and Workflow
A common theme expressed in the comments was concerns about staffing and workflow. In particular, there were many comments about inadequate staffing to deliver family-centered care. Nurses described how they needed to invest more time and have more flexibility in parent-focused nursing activities (e.g., teaching, psychological support), while at the same time, they were focused on delivering direct care to critically ill infants. They highlighted the ways in which their current staffing levels did not allow for care of both the infants and their family. They proposed specific solutions to address these problems.
These goals [family-centered care] are altruistic, and wonderful in theory, but they take TIME. Building rapport, establishing trust, meeting the needs of the family to this degree, requires more time than we currently have in a 12-hour shift. Most RN's struggle just to meet the minimum requirements of HR, admin, JCAHO, etc. If we want to be successful at achieving the above-mentioned goals, we either need additional ancillary staff to facilitate it or the RN to patient ratio would need to be lowered to allow the necessary extra time to fulfill these expectations. (RN, 11-15 of years experience)
Providing break relief nurses-we love to teach but this can be an extremely exhausting process while taking care of 2 patients and teaching all day. I've heard the statement "I'm fried at the end of the day" so many times that I completely understand what that means. The hours spent on teaching are not reflected in staffing. (RN, 25-30 years of experience)
Respondents also emphasized the need for more support from interdisciplinary staff such as social work, child life, and lactation, particularly on nights and weekends.
More access to child life specialists to come help with our older long-term babies and help families transition to discharge. Possibly a music therapist or other specialties that are available strictly to help with parent/infant bonding and family coping (I believe [hospital] has this). (RN, 11-15 years of experience)
There is very little support for the staff to assist families in the evening, at night or on weekends. We frequently have to tell families that they will have to wait until Monday to get the assistance they need, the referral done, see a certain specialist or have testing done. The families, and staff, get frustrated by this. (RN, 25-30 years of experience)
There were several recommendations for the creation of a dedicated NICU family support role to provide a consistent resource for family support. Some respondents suggested that this could be incorporated into the charge nurse role, whereas others suggested adding an additional staff member (unspecified credentials) to focus on family orientation, communication, and education.
NICU Team Culture and Leadership Support
Another common theme related to NICU team culture and leadership. Respondents had many comments about their unit's team culture with respect to family-centered care. Some articulated clear family-centered care values:
We are excellent advocates for our infants and their families. Our staff is well trained and are compassionate. We have a new staff of well-trained new grads that add to our care. (RN, 35-40 years of experience)
Whereas other comments indicated, subtly or overtly, views in opposition to family-centered care principles, including full partnership with parents and support for parent involvement in infant caregiving and shared decision making.
Having no visitors, including parents at the bedside during shift change/report will allow for better handoff communication between nurses as so often pertinent information about a baby is missed when one feels awkward about verbally disclosing sensitive information while the parents are sitting at the bedside .... (RN, 10-15 years of experience)
Set guidelines on what parents are expected to help dictate and what are going to be the care providers' roles of what we believe is the best course of action for the patient. When I have had palliative care services involved, they do a great job in assessing the family members for how to help them understand the difference between parents coordinating care versus being involved with care providers coordinating care. (RN, 25-30 years of experience)
Respondents had many comments about the need for NICU leadership and staff "buy-in" of family-centered care and made recommendations for new policies or policy changes to better define and support family-centered care.
For family-centered care to be a success the staff have to buy into it and support the program. The staff must feel a part of the development of the program and be personally invested in it for it to be a success. (RN, 35-40 years of experience)
Nurse managers/educators should visit units such as in Northern Europe where family involvement is a much more practiced concept. This as much for inspiration as well as to see how participation "policies" were developed, what kind of hurdles had to be overcome, what kind of teaching the personnel, including nurses, RTs, SWs, physicians, etc. received. (MD, 25-30 years of experience)
Better guidelines to help create a clearer standard of care instead of everyone doing things their own way. (RN, <5 years of experience)
Finally, many nurses expressed the need for support from NICU leadership to prevent burnout associated with providing family-centered care, as well as the need for greater access to hospital resources to support delivery of family-centered care to families with fewer resources.
Currently, our concern is our patient. While our patient is not just the baby we are caring for, it seems almost overwhelming to provide for the entire family at all times. (RN, 25-30 years of experience)
FCC is a very ideal concept but how can this FCC be implemented to those that are less privileged, who probably lacks economics, education, language support? Like the concept but will it be workable. (RN, 25-30 years of experience)
Staff and Parent Education
Many comments related to family-centered care educational needs of staff and families. Staff identified deficits in knowledge regarding family-centered care and requested more education. They asked for empathy and communications training and more education regarding how to support families, where to find resources, and other specific family-centered care-related topics such as decision making.
As a new staff member, I do not feel that there was any emphasis on how and where to find resources that support family-centered care. I would recommend gathering an introductory packet with all of the available paperwork to be provided to new staff so they can take the time to review before starting. Adding lists of all available support groups and resources at the hospital would be helpful. (RN, <5 years of experience)
I hope that the staff (Nurses, NNPs, Neonatologists, Fellows, Residents, SW, OT/PT) will be given lots of education about family-centered care prior to the start. Don't forget about float pool nurses. (RN, 25-30 years of experience)
Several recommendations were also made regarding the need for more opportunities for family education regarding family-centered care on admission and throughout the hospitalization.
A strong theme I felt throughout the survey is that more education for staff and parents will help solidify a patient-family centered experience. The earlier we establish trust and educate parents, the more helpful they will be to the infant's care. The more they know early, and if trust is established early, parents can be invaluable tools to the infant's care. This also will help in difficult situations such as palliative/comfort care. (RN, <5 years of experience)
NICU Physical Environment
The final theme included many comments about how inadequate physical space or poor design in the NICU created barriers to optimal family-centered care. Space constraints were mentioned most frequently and included poor design and insufficient space around the infant's bedside for family members to be present and involved in the infant's care. A lack of storage for equipment and for family belongings as well as space and privacy requirements for family teaching were also mentioned. Staff also identified numerous issues with creating a comfortable and welcoming environment for families, including the need for comfortable chairs, privacy, sleep areas, and designated spaces for family respite, that included refreshments and bathroom access.
I strongly believe in family-centered care, but it will be a challenge in our present unit because of the limited space around the bedsides. (RN, 35-40 years of experience)
[We need] more overnight accommodations for parents who have difficulty getting to and from the hospital and for breastfeeding moms. A private, safe, relaxing, and comfortable place with a kitchen for parents away from the NICU but in-house. (RN, 30-35 years of experience)
DISCUSSION
The findings from this thematic analysis of free-text comments provided by NICU nurses and a few other providers as part of a survey of family-centered care practices indicate a number of issues that impede optimal delivery of family-centered care. The main themes identified related to family needs, such as multilingual translation, education, communication with staff, and the NICU physical environment. Themes related to staff needs included deficits and lack of flexible staffing and workflow that create barriers for nurses in providing care to both critically ill infants and the families of those infants. Respondents also identified challenges with team culture and leadership that led to problems with communication and inconsistencies in practice. In addition to identifying concerns, the survey respondents provided detailed recommendation on actions to improve the specific issues identified. Most of the recommendations involved additional personnel or capital resources.
The common themes identified in this analysis are similar to those identified in previous studies of NICU staff perceptions of family-centered care in other countries,13-15 particularly with respect to issues of education, team culture and leadership, communications between staff and parents, and the NICU environment. This analysis adds new insights on the staffing and organizational challenges and expands on recommendations by NICU healthcare professionals in level II NICUs in Canada.15 Participants in the present study provided recommendations to address the staffing and workflow challenges to providing family-centered care, such as a dedicated family support role, consideration of teaching duties when making staff assignments, primary care nursing, and greater availability of interdisciplinary team support such as social work, child life, and lactation consultation. Also new to the literature is the identification of multilingual in-person interpretation and the need for translation of all teaching materials in multiple languages. These concerns and recommendations highlight the potential for disparities in family-centered care delivery if these services are not provided.19
It is also interesting to note that few comments focused on family needs beyond the NICU setting, despite evidence that societal and economic factors strongly influence the ability of families to care for their infants during and after NICU hospitalization.20 This may indicate either a lack of awareness or feelings that these issues are beyond the scope or capability of NICU staff.21 Further research is needed to better understand staff perceptions of the factors influencing family participation in family-centered care and to explore how staff can be more active in addressing the challenges to family participation in family-centered care.
It was also noteworthy that several staff provided comments that indicated views in opposition to family-centered care, advocating for restrictions on family presence or involvement in decision making for their infant. It is unclear whether these views represent philosophical differences or attempts to cope with perceived choices to either care for the infant or care for the parents because of hospital resource constraints. Future research and quality improvement initiatives to further explore, understand, and address these concerns are essential to the sustainability of family-centered care.
Finally, it is striking that many of the concerns and recommendations for improving family-centered care implicated the need for additional investment in human and capital resources. Previous studies have found meaningful improvements in hospital safety and quality, patient and family experience and staff satisfaction, and performance across diverse populations and settings,22 which can be translated into costs savings or revenue generation and used to make the business case for family-centered care resource allocation. However, we found only 1 study of a cost analysis of family-centered care for infants with neonatal abstinence (NAS).23 In this single-site study, the implementation of a rooming-in model of family-centered and standardized NAS program reduced hospital costs and improved outcomes. The lack of specific research on the return on investment of family-centered care is a major gap in the literature because hospital leadership will be generally reluctant to invest human and capital resources without a clear value proposition and return on investment. We strongly urge NICU leaders in clinical practice and research to collaborate on quantifying the resource needs for family-centered care and determining the business case for family-centered care.
The findings from this analysis should be considered in light of several limitations. First, this was a secondary analysis of text data gathered as part of a larger survey of family-centered current and necessary practices.12 Therefore, there was no opportunity to follow up with respondents to clarify or explore comments in greater depth. Second, all sites reported providing family-centered care and the survey findings indicated that respondents overall highly rated their unit's current practice of family-centered care. Because of this, and the small number of NICUs, these findings may not be representative. Nevertheless, the findings provide insights into the concerns and actionable recommendations of NICU staff regarding family-centered care.
The principles and practices of family-centered care can be implemented in many different configurations to achieve the core goals of partnership, shared decision making, and caregiving competence and confidence so that infants receive safe and high-quality care while in the NICU and grow and thrive after discharge. It is essential for NICUs to conduct their own assessments of their family-centered care practices, including strengths, weaknesses, resources, and gaps so that local solutions can be developed in partnership with family advisors.12 Many resources are available to support family-centered quality improvement initiatives.24,25
In summary, NICU healthcare professionals identified a range of issues that impede delivery of family-centered care and provided actionable recommendations for improvement. From the perspective of frontline staff, family-centered care in the NICU requires greater investment in human resources, including increased nursing staffing and availability of interdisciplinary expertise. They also recommended additional supports for families to enable their participation in family-centered care, most notably in-person, multilingual interpretation. Finally, they identified significant limitations in the NICU physical environment that impeded delivery of family-centered care, which will require investment of capital resources to remediate. These findings suggest the need for economic analyses that will enable determination of the return on investment so that NICUs can better justify the human and capital resources needed to implement high-quality family-centered care.
Acknowledgments
The authors are grateful for the support of the research staff from each site and for the valuable feedback from the UCSF California Preterm Birth Initiative Parent Clinician Advisory Board.
References