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However, the sample reflects the geographic communities from which the sample was drawn. It is not known if our findings would hold in samples with different characteristics from different geographic locations.

Drs Youngblut and Brooten conceptualized and designed the study, wrote the National Institutes of Health grant application, coordinated and supervised data collection and entry, drafted the initial manuscript, and revised and approved the final manuscript as submitted. Dr Youngblut also conducted the statistical analyses.

National Center for Biotechnology Information , U. JoAnne M. Patricia Cantwell. Author information Article notes Copyright and License information Disclaimer. Corresponding author.

Address correspondence to JoAnne M. E-mail: ude. Accepted Aug This article has been cited by other articles in PMC.

Data Analysis Sample characteristics, physical health, mental health, and role functioning are described with frequencies, means, and SDs. Results Sample The sample consisted of mothers and 73 fathers 55 couples in families. Open in a separate window. Hospitalizations Fifty-six mothers Functioning Most parents Footnotes Drs Youngblut and Brooten conceptualized and designed the study, wrote the National Institutes of Health grant application, coordinated and supervised data collection and entry, drafted the initial manuscript, and revised and approved the final manuscript as submitted.

References 1. Heron M. Deaths: leading causes for Natl Vital Stat Rep. Characteristics of deaths occurring in hospitalised children: changing trends. J Med Ethics. Modes of death in pediatrics: differences in the ethical approach in neonatal and pediatric patients. J Pediatr. Gend Med. Cancer incidence in parents who lost a child: a nationwide study in Denmark. Hospitalization for mental illness among parents after the death of a child. N Engl J Med.

Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Risk of infection-related cancers after the loss of a child: a follow-up study in Sweden. Cancer Res. Hospitalization because of diabetes and bereavement: a national cohort study of parents who lost a child. Diabet Med. Espinosa J, Evans WN. Maternal bereavement: the heightened mortality of mothers after the death of a child. Econ Hum Biol. Mortality in parents following the death of a child: a nationwide follow-up study from Sweden.

J Epidemiol Community Health. Mothers continuing bonds and ambivalence to personal mortality after the death of their child—an interpretative phenomenological analysis. Psychol Health Med. An exploratory study of the psychological impact and clinical care of perinatal loss.

J Loss Trauma. Previous prenatal loss as a predictor of perinatal depression and anxiety. Br J Psychiatry. Coping of parents and siblings with the death of a child with cancer: death after terminal care compared with death during active anticancer therapy.

Acta Paediatr. Attachment and meaning-making in perinatal bereavement. Death Stud. Znoj H, Keller D. Mourning parents: considering safeguards and their relation to health.

Pediatr Crit Care Med. American Journal of Hospice and Palliative Medicine. Culturally-sensitive information-sharing in pediatric palliative care. Available at: www. Examining the needs of bereaved parents in the pediatric intensive care unit: a qualitative study. Parental views on withdrawing life-sustaining therapies in critically ill children. Arch Pediatr Adolesc Med. Widger K, Picot C. Pediatr Nurs.

A qualitative study by Heydarpour et al. A meta-analysis of 12 qualitative studies about maternal NICU experiences in mothers of pre-term infants resulted in 5 primary themes. The purpose of this particular investigation is to explore, through thematic analysis, the experiences of mothers of infants admitted to a Level III NICU in the Midwestern United States, who responded to an open-ended question focused on elucidating supportive and stressful features of the NICU environment.

NICU parents are an inherently vulnerable population due to complicating circumstances. Additionally, our exploration of the literature indicates that significant work remains in terms of improving the NICU experience for families. A specific focus on environment is intended to identify deficits and protective features inherent to the setting. Ideally, results from this study and other related studies, would form the basis for evidence-based modifications to the NICU environment.

The current investigation is a secondary analysis from a parent study that included participants. The rooms within the NICU are set up in pods with four infants per pod; there are also four private rooms but the rest of the unit is open, with the pods sectioned off from a main hallway. Nurses are staffed according to critical status.

For example, one infant may have two or more staff working with them. While there are reclining chairs in each pod for a parent to rest, there are no overnight sleeping sites in the NICU itself. That is, it is set up like a hotel with free kitchen and laundry areas, private rooms, and reserved parking.

Participants included mothers who had been discharged from the hospital following childbirth and whose infants were expected to survive but required NICU admission due to health complications following birth. The criteria used for the inclusion and exclusion of participants in the parent study can be found in Figure 1 ; methodological details such as inclusion criteria, consent procedures, and scope of data collection will also appear in other related publications.

An investigator approached potential subjects after the mother had been discharged from the hospital and the admitted infant was stabilized and generally expected to survive.

Informed consent was obtained prior to enrollment. Separate signatures were obtained from the mother for the consent of herself and the minor child since both were subjects of the parent study.

The investigators were formally granted permission from the developer, Dr. Participants completed the assessment approximately three days prior to the date that their infant was expected to be discharged from the NICU.

Those who completed the study were compensated with two baby sleepers and a developmental toy. The information provided by these 46 women is the focus of the present investigation.

Of the 46 mothers who responded and are therefore included in this analysis, the mean age was Most women had completed high school Less than half of the women had a college or postgraduate degree The mean EPDS score was 7. This average EPDS score of 7. However, in studies including only women who were screen-positive for depression, the average BIMF score was 80 [ 18 , 23 ]. Table 1 describes the sociodemographic characteristics of the participants in further detail.

All participant responses to the aforementioned study question were extracted and placed into a separate text file for the purposes of thematic analysis. The study analyst and the principal investigator, both trained in qualitative methods, reviewed the comments several times.

As a result, five primary and mutually agreed upon themes emerged. Participant quotations are presented to elucidate each theme. Quotations may appear more than once if applicable to multiple themes. Women often noted lack of quality communication with the nursing staff as a major stressor in the NICU:.

Participant: I found it extremely stressful that I never really knew what was going on. However, most of them did not take the time to explain why he was doing such things or what was happening. Participant: During 2 procedures no one was able to give us an update—one was told to last and hour and 3. When he has was admitted no one told us why other than his blood work was really bad, and 4 h later we were finally able to come down to the NICU. Someone could have explained more why he was rushed down from well-baby.

We were very fearful and anxious which I believe could have been avoided with a little more communication. Participant: What was helpful to me during our time here was the helpful nursing staff and great doctors. They were great at explaining things and it was reassuring to know that my baby was getting the best care possible.

Rounding is a great thing. Participant: Having the nurses sit down and explain what was truly going on with our baby helped to comfort us and lessen the stress we had. In the current study, bedside manner was defined as any nuances in body language, behavior and communication exhibited by medical staff during interactions with patients and their families that impacted patient satisfaction.

Comments related to the bedside manner of the medical staff often included statements about the attitude, professionalism, and manner of care expressed by the nurses. Poor bedside manner was noted as a stressor. Examples of this manner as reported by participants included the following:. Participant: … I was reprimanded rudely when I came back from lunch to find my baby had spit up on herself and pooped her diaper and I changed her and cleaned her up in between her feeding time… NOT OK.

For example just hook the baby to the feeding tube so they can sit and talk on the phone yes, personal phone calls. Participant: I love most of the nurses but there are a few that I have seen to be careless and too rough with the babies.

This made me highly upset because they were so careless and rough. That is unacceptable—these babies are tough but they go through too much and are too precious to be treated that way. Other women expressed positive comments about the bedside manner of the medical staff noting the positive impact that it had on their experience in the NICU:. Participant: The nursing staff however was very helpful in assisting and informing me about breastfeeding.

Names specific nurse was my favorite! She was so helpful and kind. I would describe her as compassionate and yet professional. Participant: I really appreciated the nurses giving me my space but still checking in on me from time to time. They were also very helpful with supplies for breastfeeding. They never seem to get irritated or frustrated which makes me as a parent feel more comfortable and at home. Participant: It also seemed like the nurses would rather do things themselves than have me do it i.

I had a meltdown. I went back to my room and sobbed. Several women found comfort and support in their shared experiences:. Participant: Staying at hospital-based housing and talking to other families that have had their babies early is nice.

Participant: What was helpful to me during our time here was … talking with other moms going through similar situations and being able to empathize and talk with them. Numerous participants described the NICU environment as either a stressor or highlight of their experience.

This included things such as the physical environment of the NICU as well as the rules and regulations that were enforced there:. Participant: Having to choose between family members to only allow for 3 at a time, lack of waiting area for visitors waiting their turn. Having to coordinate feeding times with the cafeteria hours, not eating due to cafeteria being closed after feedings.

Put vending options by unit. Bathrooms available in unit!!! Very hard after surgery to walk far to use bathroom when the one bathroom for the unit is being used.

Not being allowed to sleep here was stressful. Having rotating doctors was comforting because they all have different views about the situations and medical conditions. Participant: I feel it is not fair that every baby is not in a room with their parents. And parents not being able to stay, but wanting to be with their premie child—something needs to change with that. Because for parents who have never been through things like this, which is the NICU, it is not fair to them. How is that you can visit 24 h but not sleep?

The aim of the current study was to conduct an analysis of qualitative data in order identify prominent environmental stressors and supports of the NICU. Results were analyzed and five themes specific to environment emerged. The findings in this investigation confirm and supplement some of the findings from previous and related studies. They add to the growing body of evidence that highlights the significance of the NICU environment as it relates to family health.

Communication was a key theme throughout the literature; therefore it was foreseeable that communication with medical staff would be identified by mothers as significant experience in the NICU. Several studies addressing parental satisfaction in the NICU have corroborated this finding. This dynamic can be helpful when working optimally and but contributes to stress otherwise.

This is likely because quality and amount of communication between mothers and medical staff is linked to numerous outcomes. Similar trends exist within the Bedside Manner theme as well as the NICU Environment and Rules theme where communication was a contributing factor to a positive or negative experience. Weiss et al. One of these interventions included brief education for providers about communication with family members of NICU patients. The final intervention included displaying large posters at the entrance of the NICU that included provider names, pictures and titles.

The investigators found that these interventions that helped providers to increase their availability for and communication with parents led to greater parental satisfaction [ 24 ]. Interventions such as those employed in this study could prove beneficial for decreasing maternal stress in the NICU environment. With communication being a common thread throughout, it is clear that it must become a focus of staff education and training.

Bedside manner is a difficult concept to classify due to its somewhat vague nature and definition. In the current study, bedside manner was broadly defined as any nuances in body language, behavior and communication exhibited by medical staff during interactions with patients and their families that impacted patient satisfaction. Due to this comprehensive definition, there is great diversity in the experiences cited within the bedside manner theme.

Some women commented on the attentiveness and patience of the nurses, or lack thereof. Others commented on how helpful it was when doctors rounded frequently on their infants and answered questions.

Numerous other mothers made comments about how stressful it was when nurses had negative attitudes or when they perceived nurses as being physically rough with the babies during care and procedures. Person et al. The themes generated by their analysis included positive behaviors, such as displays of respect, courtesy, and listening as well as negative behaviors, such as arrogance, indifference and disrespect [ 26 ].

Nuances such as these were also seen under the bedside manner theme in the current study. Statements such as these highlight the continued need for more extensive training on awareness, warmth and empathy amongst nursing staff in order to facilitate a less stressful and more therapeutically effective environment for mothers and their medically fragile infants in the NICU. Roter [ 27 ] reviewed studies about the patient-physician relationship and identified multiple nuances, particularly in communication, that were linked to more positive patient outcomes.

Physician displays of empathy, responsiveness to patient emotions, and inclusion of patients by asking questions and encouraging patients to ask questions as well often led to more positive health outcomes and decreased psychological distress amongst patients [ 27 ].

Future research should continue to parse out the intricacies of this term so that clinical interventions can be tailored specifically to the nuances that are most important to patients. Provider awareness should be a key focus of clinical intervention.

Heydarpour et al. In their meta-synthesis of 14 studies, Aagard et al. Regardless of the reason, standard models do not seem equipped to integrate parents directly into the infant-care process in the NICU.

Some mothers reported disappointment about missing out on activities, such as bath time, while other mothers reported feeling generally unwelcomed or as if they were in the way of nurses and staff. Medical staff is often under a great deal of pressure due to large patient loads, time constrains and the life-or-death reality of the NICU; however these responses implicate a need for nurses to play a larger role in encouraging mothers to participate in the care of their infants as much as possible and providing them with concrete examples of how to do so.

Social support has been identified as a protective factor for individuals, particularly in stressful situations such as parenting [ 28 ]. Mothers in the current study expressed the importance of social support, particularly support from other mothers and families who have or have had infants in the NICU. Potential clinical implications of this finding may include programs that facilitate peer support for mothers and families of babies in the NICU.

Preyde et al. The objective of this program was to pair mothers with preterm NICU infants with other mothers who had experienced having a preterm infant in the NICU in the past. The experienced mothers provided mostly telephone support. Participants in the intervention group reported lower levels of anxiety and depression as well as higher levels of perceived social support [ 29 ].

Other studies that have examined support groups have also yielded positive results with participants in the intervention groups reporting less anxiety and scoring more positively on measures of self-esteem and parent-child interaction [ 30 ].

The information gleaned from the current study as well as the literature on effective clinical interventions underscores the need for such support programs to become lasting component of the NICU environment.

It became apparent through participant comments that thorough explanation of medical equipment, its purpose and the meanings behind alarms and alerts helped relieve maternal stress a great deal.

Multiple mothers also commented about inconveniences such as bathroom location and made suggestions for improvement of the physical environment such as installing vending machines in the waiting areas. Stacey, Osborn and Salkovskis [ 31 ] conducted a study assessing factors that helped parents cope with the NICU and found that the physical environment of the NICU played a critical role in parental ease and satisfaction.

The link between the physical NICU environment and parental wellbeing has strong indications for practical quality improvements that promote parental convenience and comfort.

In the current study, the most frequent comments within this theme were regarding rules in the NICU and the manner in which they were enforced by nursing staff. Multiple women complained about frustrating rules that interfered with their ability to care for or spend time with their babies, and more than one mother complained about nurses enforcing the rules in ways that they perceived to be rude or hurtful. One mother expressed frustration about rules not being uniformly enforced by nurses, leading to confusion amongst patients.

Through their qualitative analysis of interviews with five mothers and two fathers with children in the PICU as well as 12 PICU nurses, it was concluded that unit rules were a significant source of contention between parents and nurses. Parents felt particularly frustrated by the rules that prevented them from spending the desired amount of time with their children. The investigation illuminated a discrepancy between nurse training in rule enforcement and the updated and more progressive goals of PFCC.

The investigators speculated that some of the PICU rules and the means by which they were enforced originated from an outdated school of thought that placed the convenience of medical staff above the convenience and needs of families because families were viewed as visitors as opposed to an integral part of the care team for their children [ 32 ].

While this study was specific to the PICU, many similarities exist between the needs and concerns of parents in this study and those of the mothers in the NICU study. The results of the current study in concordance with the literature provide a strong basis for the need of NICU facilities to clarify their mission amongst medical staff and patients and revise their rules to assure that they are current, necessary and in concordance with the mission.

This clarity in addition to quality nurse training regarding the mission and respectful and empathetic rule enforcement has the potential to reduce maternal stress levels and create a more positive environment in the NICU. The use of an open-ended question to assess stressors and supports in the NICU is a strength of this study. This allowed participants to share their experiences without the constraints associated with closed-ended questions and Likert Scale response choices.

The relatively large sample size is a strength of this study as well. The current investigation included 46 participants. Sample sizes of less than 30 participants are more prevalent in qualitative literature. Sample diversity was strength of this investigation. There was diversity amongst the sample with regard to level of education. Slightly over half of the sample had some amount of college education that included an associates or technical degree One limiting factor of the open-ended question is that intriguing topics could not be probed further, as possible during focus groups or patient interviews.

The participants could not be asked to expound further upon comments or to provide clarification about vague or confusing statements, which may have granted better insight for investigators.