Family-centered care is becoming a standard of care in neonatal intensive care units (NICUs). The purpose of this study was to evaluate the impact of a national program designed to promote family-centered care in NICUs and to provide information and comfort to families during the NICU hospitalization of their newborn.
A quasi-experimental, post-only design was utilized, examining eight March of Dimes NICU Family Support® (NFS) sites. Data were gathered via telephone interviews with NICU administrators and surveys of both NICU staff and NICU families.
NICU administrators interviewed identified benefits of NFS, including culture change and additional support to families. Surveys of NICU staff showed that NFS enhances the overall quality of NICU care resulting in less stressed, more informed and confident parents. Surveys of NICU families showed that NFS both reduced their stress and made them feel more confident as their baby's parent.
March of Dimes NFS has had a positive impact on the stress level, comfort level and parenting confidence of NICU families. In addition, it has enhanced the receptivity of staff to the presence and benefits of family-centered care.
Each year, over 400 000 babies are admitted to a newborn intensive care unit (NICU) in the United States.1 The hospitalization of a newborn in a NICU can be one of the most frightening and overwhelming experiences for a parent.2, 3 Families and providers have emphasized how stressful, difficult and emotional this time can be.4, 5, 6
Family-centered care is becoming a standard of care in NICUs.7, 8 Viewing the family as the child's primary source of strength and support,9 this philosophy incorporates respect, information, choice, flexibility, empowerment, collaboration and support into all levels of service delivery. Most importantly, family-centered care has been associated with numerous benefits including decreased length of stay,10, 11, 12 enhanced parent–infant attachment and bonding,11, 13 improved well-being of pre-term infants,14 better mental health outcomes,15 better allocation of resources, decreased likelihood of lawsuits15, 16 and greater patient and family satisfaction.9
In 2001, the March of Dimes Foundation, whose mission is to improve the health of babies by preventing birth defects, premature birth and infant mortality, began providing direct, face-to-face support to NICU families. This national program aims to provide information and comfort to families during the NICU hospitalization of their newborn, during the transition home and in the event of a newborn death; to contribute to NICU staff professional development; and to promote the philosophy of family-centered care throughout the NICU.
We hypothesized that hospital administrators and NICU staff at hospitals with the project would view March of Dimes NICU Family Support (NFS) as having enhanced overall care, promoted family-centered practice and contributed added value to their NICUs. Most importantly, we conjectured that NICU families would indicate that March of Dimes NFS has provided them with needed information and comfort and has expanded family-centered care in the units where their babies have been hospitalized.
In 2005, Health Systems Research Inc. (HSR) conducted a national evaluation of March of Dimes NFS. A quasi-experimental, post-only design was utilized, examining eight out of the twenty-three 2005 NFS sites matching non-randomly selected case sites (fully implemented) to comparison sites (partially or not-yet implemented), based on similar average census, annual admission rates and patient demographics.
Fully implemented sites (n=4) were defined as having all elements of the project in place for at least 1 year. Partially implemented sites (n=3) were defined by the presence of a March of Dimes NICU Family Support Specialist at the hospital for ‘not more’ than 6 months and only ‘some’ of the elements of the project in place. The not-yet implemented site (n=1) was defined as the hospital that had already been selected to partner with the March of Dimes chapter for NFS, but none of the elements of the project were yet in place.
Data were gathered through self-completion written surveys of NICU families and NICU staff, and through telephone interviews by HSR with NICU administrators using a set of pre-determined, open-ended questions. Surveys were distributed to NICU families and NICU staff by the NFS Specialist and/or NICU staff (including NICU nurses, NICU social workers and neonatologists). Surveys were delivered in person or mailed and respondents returned them directly to HSR, postage paid or placed them in sealed envelopes in a designated location in the NICU for the NFS Specialist or other representative to mail to HSR. All surveys were anonymous.
Surveys, developed and pilot-tested by HSR with March of Dimes input and approval, addressed NFS components (activities, NFS Specialist, materials, programs), parental knowledge, comfort, connectedness, confidence, and parenting behaviors, parents’ ability to describe their baby's condition, whether or not they ask questions of medical personnel, their level of involvement in the care of their infant, programs and policies that endorsed these factors, parental self-efficacy and staff views of the above and various family-centered principles. Family survey questions were in a variety of formats, including open-ended, multiple choice and Likert Scales from 1 to 5 that corresponded with ‘Strongly Disagree’ to ‘Strongly Agree’ and ‘None at All’ to ‘A Lot’. Staff surveys also included open-ended, multiple choice and Likert Scale formats in which responses were 1 to 5 corresponding to ‘Not At All Effective’ to ‘Highly Effective’ and ‘Not At All Helpful’ to ‘Very Helpful’, and so on. Examples of open-ended questions included ‘What is your NICU's philosophy and mission statement?’ for administrators, ‘What three things would improve the family support program in your NICU?’ for staff and ‘What materials did you get that were supportive?’ for families.
SAS for Windows, version 9.1 was used for all analyses. Analyses of categorical data were analyzed using PROC FREQ while analyses of continuous data were analyzed using PROC GLM. χ2 tests were used to look for differences in response by level of implementation when data were categorical and F-tests, both overall and pair-wise, were used when the analysis examined continuous data. For all variables, statistical significance was established at the 95% level of confidence.
Eleven NICU administrators from the eight sites were interviewed by telephone. Administrators interviewed included Nurse Managers; Hospital Vice Presidents of Nursing, Patient and Perinatal Services; Directors of Nursing; and a Director of Neonatology (neonatologist). NICU administrators highlighted a number of different benefits of the project. The NFS Specialist was perceived by many as a staff member who was able to focus on the family, while the nurse was focusing on the newborn. In addition, the NFS Specialist was viewed as an extra pair of hands that could impart education, support and information when the rest of the medical team could not. While administrators saw NFS as promoting the hospital's reputation in the community as well as a tool to recruit new staff members, they clearly viewed it as primarily benefiting NICU families by changing NICU culture.
Five hundred and two NICU staff members responded to the staff survey, representing a response rate of 48% based on number of NICU staff per site. Fifty percent of the respondents were employed at hospitals where NFS is fully implemented, 42% at partially implemented and 8% at not-yet implemented. Sixty-six percent classified themselves as registered nurses; the remainder included neonatologists, nurse practitioners, social workers, respiratory therapists, occupational therapists and others.
Overall, more than half of staff respondents (53%, n=238) reported that NFS enhances the overall quality of NICU care. Staff at fully implemented sites were most likely to report this (68%). When asked about the positive effects (either anticipated or actual) of implementing NFS, 81% of staff cited ‘more informed parents’, ‘less stress on parents’ (80%), ‘increased confidence of parents at discharge’ (75%) and ‘enhanced bonding between parent and infant’ (74%).
Neonatal intensive care unit staff were queried regarding their perception of the importance of several family-centered care philosophies to their NICU, and whether the level of importance has changed since the inception of NFS (for sites that have implemented the program). In all responses, the characteristic was viewed as more important post-implementation and was statistically significant for each characteristic (see Table 1).
Two hundred and sixteen families responded to the family survey, representing a response rate of 13% based on NICU admissions. Thirty percent of respondents were families of NICU graduates, while 70% were families with an infant currently admitted to a NICU.
Information and comfort
Several activities commonly included in NFS are baby photos, scrapbooking, parent-to-parent support, Parent Education Hours and Sibling Education groups. For the most part, respondents indicated engaging in these activities and deriving comfort from them at much higher rates at fully implemented sites, and at higher rates at partially implemented sites than not-yet implemented. Most notable was attendance at Parent Education Hours (fully/partially/not-yet imp: 48, 26, 11%; P⩽0.001) and deriving comfort from them (fully/partially/not-yet imp: 68, 44, 0%; P⩽0.001). Also, families reported meeting with parent-to-parent volunteers more frequently in fully implemented or at partially implemented sites (P⩽0.001).
As compared with other sources of support, the March of Dimes NFS Specialist was rated fourth, after (1) family (2) nurses and (3) physicians (see Table 2). Sixty-three percent of all respondents reported getting support from the NFS Specialist. Those who had been hospitalized prior to the birth of their baby indicated that it was ‘extremely helpful’ to speak with the NFS Specialist prior to the NICU hospitalization. Respondents also reported obtaining ‘some’ or ‘a lot of’ comfort from talking to the NFS Specialist. Eighty-three percent of respondents from the fully implemented sites indicated that talking with the NFS Specialist both ‘reduced stress’ and made them ‘feel more confident’ as parents. When asked about their preparation for discharge, respondents indicated that the NFS Specialist was the most helpful in preparing them for what to expect from their baby when they were going home. Ninety-five percent of respondents stated that the NFS Specialist told them what to expect from their baby at discharge as compared with 60% of respondents indicating physicians, 55% for case managers, 38% for nurses and 20% for social workers.
Family-centered care/parental involvement
Respondents from the fully implemented project sites consistently reported a high percentage of opportunities for involvement in the direct care of their baby, and there was a significant difference in how highly respondents rated their comfort level helping to care for their baby in fully implemented sites (93%), partially implemented (83%) and not-yet implemented (74%). Respondents from the fully and partially implemented sites were also more comfortable knowing what to expect in terms of the baby's medical condition than respondents from the not-yet implemented sites (P⩽0.01 and 0.03 respectively). These two groups were also more comfortable knowing what to expect from their baby's growth and development (P⩽0.006 and 0.02 respectively). The respondents from the fully implemented groups were more comfortable putting a child safety seat in their car than either other group (P⩽0.03 and 0.005, respectively; see Table 3).
Regarding the family centeredness of the NICU they were in, at the fully implemented sites, 56% (n=58) of the respondents indicated that they or a family member took part in making decisions about their baby's care ‘often’ or ‘a lot.’ This was not different from responses at the partially implemented sites where 60% (n=50) of the respondents reported decision-making involvement as ‘often’ or ‘a lot.’ At the not-yet implemented site, 44% (n=8) reported these levels of decision-making involvement. Eighty percent of family respondents at the fully implemented sites indicated that they felt their opinions were taken seriously ‘often’ or ‘a lot.’ Seventy-one percent of respondents at the partially implemented sites shared this assessment, while 50% of respondents at the not-yet implemented site reported ‘often’ or ‘a lot’ (P⩽0.02).
The majority of family respondents who kangaroo-cared/held their babies found that this activity provided the highest level of comfort. Staff, too, responded as to the importance of kangaroo care, 67% rating it as highly effective in reducing parental stress, 73% as highly effective in providing comfort to parents and 80% as highly effective in facilitating parent/infant bonding. Surprisingly, however, only 8% of staff stated that kangaroo care was routinely performed in their units.
Regarding discharge planning, family respondents noted confusion and lack of preparation for and at discharge time. Parents indicated in written comments that they felt ill prepared to deal with what they would face at home. Fifty-eight percent of parents felt that discharge preparation did not begin until a week before discharge and 35% felt that it never commenced at all. This was in sharp contrast to NICU staff, 74% of whom stated that discharge planning begins at admission.
Administrator interviews indicated that NFS adds important value to hospital's services. The NFS Specialist was viewed by administrators as complementing the NICU workforce, a staff person who could accomplish what NICU staff may not have time to do. For some NICU staff, the pressure of the hospital environment might make medical needs and urgency take priority, which may limit efforts that focus on family support initiatives.
NICU staff also reported that NFS enhances overall NICU care and comforts families. The majority of NICU staff identified their own attitude change toward a variety of family-centered policies and initiatives following the launch of NFS. Although the surveys did not specifically address what staff attributed to being the reasons for these changes, there may be a number of explanations, including NICU staff exposure to certain family-centered tenets during the NFS professional development opportunities. The provision of such specific tools and skills is a necessary component to fostering institutional change.17
In addition, staff may have had the opportunity to participate on the local March of Dimes NFS Parent-Staff Action Committee. Committees that utilize families as advisory members in whole or in part represent some of the most crucial first steps in moving hospitals along the family-centered continuum.18, 19 Since these committees were the first of their kind in many of the NFS sites, this was likely the first time staff actually had sat down at a table with graduate NICU families to learn about their needs.
Families indicated that the NICU Family Support Specialist and the programs, services and materials of NFS provided support, information and comfort. The NFS Specialist was viewed as an important support person. An overwhelming number of family respondents indicated that speaking with the NFS Specialist reduced stress and made them more confident as parents. While not all NICU families were aware of who the NFS Specialist was or her role, this was much more prevalent in not-yet and partially implemented sites.
Educational materials and activities, such as the Parent Care Kit and Parent Education Hours, respectively, likely contributed to families in fully and partially implemented sites being more comfortable knowing what to expect in terms of their baby's medical condition, more comfortable knowing what to expect from their baby's growth and development, and in fully implemented sites, more comfortable putting a child safety seat in their car.
In parallel to the staff-attitude change toward family-centered principles noted in fully implemented sites, families in fully implemented sites (as compared to partially and not-yet implemented) were more likely to express feeling that their opinions were respected and that they were involved in their baby's care and decision making. Staff attitudes, ostensibly affected by the presence of NFS, appeared to have translated into the type of family-centered approach that families perceived themselves.
Our findings regarding kangaroo care and discharge planning are noteworthy. Kangaroo care/holding of newborns brings some of the greatest comfort to families, and staff recognize the importance of this activity, but more needs to be done to ensure that families have opportunities to hold their newborns as much as is safe and possible, as the benefits and value, both long- and short-term are powerful.20, 21, 22, 23 In addition, the disparity between the type and onset of discharge preparation as experienced by families and as perceived by staff would be important to explore in future studies.
Moreover, what families in this study indicated they need is not only discharge preparation, but also a setting in which they are empowered, encouraged and supported in caring for their baby as the primary caretaker from admission onward. Parent participation from admission onwards has been demonstrated to decrease stress and feelings of helplessness as well as ease the transition from hospital to home.24 Through this approach, if and when discharge day arrives, the parents will feel robustly prepared to take home the infant that they know best and have cared for since birth.
Ideally, this study would have utilized a pre- and post-project evaluation strategy to determine the overall change following NFS implementation. Unfortunately, this approach was not feasible as the implementation process of NFS varies from site to site, as does the overall timing of implementation. In addition, NICU staff were asked to rate degree of perception change retrospectively, which may have resulted in recall bias.
Another limitation of the study is the variation in the number of staff and family survey responses obtained. Practical considerations, including limited NICU staff involvement in the recruitment and administration of client surveys, meant that in the case of most of the sites, a convenience sample of NICU families was generated from families who were in the NICU at the same time as the NFS Specialist. These families had the greatest likelihood of having interacted professionally with the NFS Specialist, so their awareness of her and her role were possibly greater than that of some other NICU families.
The national evaluation of March of Dimes NICU Family Support shows that this family-centered care initiative has had a positive impact on the stress level, comfort level and parenting confidence of NICU families. In addition, it has enhanced the receptivity of staff and the presence of family-centered characteristics in their NICUs.
More research is needed to further identify what is most comforting to families, how and why family-centered change occurs, including observational studies and research that looks at the short- and long-term health outcomes of newborns, including length of stay, readmission rates and family stability and cohesion.
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We could not have collected the data without the assistance of our eight partnering NICUs, their administrators and NICU staff, the March of Dimes NICU Family Support Specialists and March of Dimes chapters in Iowa, Maine, Missouri, New Jersey, Rhode Island, South Carolina, Tennessee, and Texas. We also thank the March of Dimes President, Dr Jennifer Howse, for her clear vision and recognition that March of Dimes needs to provide information and comfort to NICU families during their time of greatest need. Health Systems Research Inc. was funded by the March of Dimes to conduct the evaluation.
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Cooper, L., Gooding, J., Gallagher, J. et al. Impact of a family-centered care initiative on NICU care, staff and families. J Perinatol 27, S32–S37 (2007). https://doi.org/10.1038/sj.jp.7211840
- family-centered care
- premature birth
- neonatal intensive care unit
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