- Email: [email protected]
Room for family-centered care – a qualitative evaluation of a neonatal intensive care unit remodeling project
Journal of Neonatal Nursing (2009) 15, 88e99
www.elsevier.com/jneo
Room for family-centered care e a qualitative evaluation of a neonatal intensive care unit remodeling project Sanne Allermann Beck a,*, Janne Weis a, Gorm Greisen a, Mette Andersen a, Vibeke Zoffmann b a
Department of Neonatology, Rigshospitalet, Copenhagen University Hospital, Blegdamsvej 9, DK-2100 Copenhagen Ø, Denmark b Steno Diabetes Center, Gentofte, Denmark Available online 2 April 2009
KEYWORDS Neonatal; Family-centered care; Qualitative evaluation; Focus groups; Environment; Remodeling; Intervention
Abstract The physical layout of a Neonatal Intensive Care Unit (NICU) seems to play an important, yet disregarded role in establishing family-centered care (FCC). Based on two focus group interviews this article qualitatively evaluates how a physical layout intervention changed matters for parents and health personnel. Collectively, the participants experienced three interior design layouts: open space design, modified rooms and smaller rooms. Inspired by grounded theory, the article explains how establishing smaller rooms equipped with a parent bed placed next to the sick infant provided ‘‘room for family-centered care’’ in a double sense: it reduced the parents’ burden by providing space for them to come to terms with the situation and to start the bonding process; it allowed professionals to commit to meeting increased demands. The study concludes that smaller rooms enhance FCC in a NICU when personnel are prepared to accept the challenge. ª 2009 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
Introduction This article qualitatively evaluates the way in which a remodeled Neonatal Intensive Care Unit
* Corresponding author. Tel.: þ45 35 455 023; fax: þ45 35 455 025. E-mail address: [email protected] (S.A. Beck).
(NICU) provides an opportunity of triggering family-centered care (FCC) practice. The bonding process between infant and family usually begins immediately following the birth (Brode ´n, 2004). Should the infant be born pre-term and be admitted to the intensive neonatal ward, this process is disrupted and the high tech environment can prevent parents from natural care of their infant (Kirkebæk et al., 1994; Cox and
1355-1841/$ - see front matter ª 2009 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2009.01.006
Room for family-centered care Bialoskurski, 2001). Principles for FCC are used today as a reference frame in many neonatal wards. These principles include acknowledgement of the family as a constant in the infant’s life and as its most important support source. Consequently, parents are supported in strengthening their ability to act and make decisions about their infant’s care and treatment in partnership with healthcare personnel (Hutchfield, 1999; Als, 1992; Malusky, 2005; Weis, 2006). Elements such as dignity, respect, information sharing, participation and collaboration are crucial in FCC (The Institute for Family-Centered Care, 2008). Studies accordingly have focused on health professionals’ communication skills and attitudes to parents and found that professionals must be aware that parents are anxious about the future of their child and need their support to achieve autonomy (Weis, 2006; Wigert et al., 2006; Cox and Bialoskurski, 2001; Heerman et al., 2005). To date, the significance of the physical layout of a NICU generally has been disregarded and only sparsely explored in relation to FCC (McGrath, 2005). Formerly, the organization of a NICU focused primarily on the care and treatment needs of the infant (Davis et al., 2003). To date, a new physical layout is primarily put in place to harmonize with the approach of individualized developmental care (Dearing, 2004; Floyd, 2005; Zahr, 1998). In this care approach, an infant’s signals are interpreted as developmental competencies to which responsive actions are taken concerning the environment, safeguarding the infant from external disturbances such as unnecessary light and sound (Als, 1992). New physical layout forms are adopted gradually as they are seen to support FCC and the environment surrounding the infant, inviting and enhancing the parents’ natural role (Bowie et al., 2003; Caines, 2002; Kuschel and Roy, 2005). Experience, expert allegations and studies have all influenced the professionals’ views about the value of different physical layouts (McGrath, 2005; Brown and Taquino, 2001; Carlson et al., 2006; White, 2004). An evaluative investigation of a remodeled neonatal ward where the layout was changed from an open space to an arrangement of single rooms substantially improved the quality of life for the staff when the two models were compared. The personnel experienced improved collaboration with the parents and the parents felt more comfortable in the remodeled ward where they no longer were in close proximity of other infants and their parents (Schoenbeck, 2006). A comparable study states that the health personnel experienced the remodeled ward as providing a better environment for the infants but that there
89 was a need to pay closer attention to personnel staffing, allocation and training to safeguard the infants (Walsh et al., 2006). One survey showed that within 6 months of establishing the single rooms, parents experienced a substantial sense of privacy compared with the older layout (Carlson et al., 2006). Furthermore, parents’ association was drawn in to develop recommended standards for the layout (White; Consensus Committee Chairman, 2006). No qualitative studies have, however, been done to date on the perspectives of both the parents and the professionals evaluate the different layouts as triggers for FCC practice. At end-2006, the Department of Neonatology (NICU, Level 3) at the Copenhagen University Hospital (Rigshospitalet) was expanded with the addition of a remodeled ward. Having for long believed in the principles of FCC and aimed at putting this approach into practice one of the primary aims of the expansion was to improve the environment for families during their demanding hospital stay. An evaluation of the new layout investigated whether changing the physical surroundings would improve the hospital stay experience for both the personnel and the parents. As several concerns and objections were raised by the personnel during the planning and performance phases of the remodeling, the Head of the Department was uncertain whether the personnel would find it too difficult to work in the new surroundings. Although mainly focusing on the experience of the parents, the study was consequently also motivated by an interest in knowing how the personnel managed the changes. The article presents a qualitative intervention study that changed the physical layout of one section of the ward and qualitatively compared it with a slightly modified part and an older ½ layout designs in the same ward. The article develops a theory explaining how the new layout with smaller rooms, in a double sense, makes ‘‘room for family-centered care’’.
Methodology Prior to the intervention, the ward housed four to seven infants in a room 25 m2 in size that was closed off on three sides. The exposed side of the room opened out to the personnel’s work area. It was only possible for parents to sit in armchairs next to their respective infants. The intervention involved expanding the ward by 1/3rd, posing a considerable change to the ward’s physical layout. More than 1/3rd of the infants were given the opportunity of being housed
90
S.A. Beck et al.
in smaller rooms that had doors and space capacity for only one to two infants. A bed for the parent was placed next to each crib or incubator, where the parent could repose or overnight. This arrangement was also provided for those infants needing intensive care and treatment and who required, for example, a respirator (a small room design). Another 1/3rd of the infants were placed in a slightly different older room layout. This room type housed two to three infants and an equal number of parent beds. The room had curtain screens separating each family and shielding them from the personnel’s work area (a modified room design). The remaining section of the ward’s admitted infants were placed in clusters housing four to seven infants and had no parent beds (an open space design). (See photos below). The open space design.
The smaller room with a parent bed.
The modified room with a parent bed and curtain screens separating the room from the personnel’s work area.
The different sections of the ward were evaluated through qualitative focus group interviews (Halkier, 2003) for their value to the parents and personnel. The participants of the two groups were strategically selected in order to ensure inclusion of experiences with all three forms of layout. Thirteen parents and 11 personnel were invited to participate in the interviewing process. The infants and their parents were using the intensive neonatal ward during the period when the new layout was first established. This meant that several of the study participants from the parent group had already experienced several of the layout designs. Furthermore, all infants had received intensive care and treatment during their hospital stay for short or longer periods. Only Danish speaking parents of discharged, surviving infants were selected. The health personnel (doctors and nurses) were selected from various disciplines and different competency levels. Newly hired health personnel who were not yet familiar with the equipment and tasks were not included in the interview. Prior to the interviewing process, the participants were provided with a set of 22 unfinished sentences that they were to complete as self-reflection in preparation for the interview (see Table 1 below). Each couple of parents received two sets of the incomplete sentences and were advised to initially complete the sentences separately from their partner, after which they should review and discuss each other’s answers. This process allowed both the mother and father’s perspectives to be represented despite the fact that only one parent participated in the interview. The incomplete sentences were
Room for family-centered care developed to target each participant group, using a ‘‘value-clarifying’’ method (Steinberg, 1981) based on four selected themes: security of the child, collaboration, personal values and developmental perspectives. These themes were identified during a brainstorming session with the ward’s management team and emanate from their perception of the problems and benefits of the new layout. The two focus group interviews took place 3.5 months following the remodeling project and transfer to the new rooms. Both sets of interviews took place in the Department’s conference room that was known to all participants. In order to avoid any information bias, the interviews were moderated by an external resource. One observer was present to ensure the accuracy of non-verbal data including, for example, group dynamics and mimicking. The moderator used a semi-structured interview guide (Kvale, 1997). Both interviews were tape-recorded and transcribed (Halkier, 2003). The analytical methodology is a constant comparison method inspired by grounded theory (Glaser, 1978) as we intended to develop a practice anchored theory by inductively analyzing concrete data. As data from informants who had fresh experiences with several room types was desired e a snapshot in time e the study could only capture two interviews and consequently we were aware that theoretical saturation might not be achieved. The analytical work was performed in four steps. First, we performed initial open coding on each interview right after it had taken place. Through a combination of listening and writing notes, we discovered in vivo codes, providing ideas for the tentative advancement of more abstract codes. Second, the material was systematically coded by room type: the smaller room design, the modified room design and the open space design. A critical comparison focused on the most solid categories of the coded data. We used this to specify the content and further the advancement of lasting categories and subcategories. Step 2 ended when ideas for tentative links between categories appeared to emerge. During the third step, we performed comparison across both interviews to explore and confirm links between concepts and thus pattern out theoretical ideas and connections. These initial theoretical constituents were compared in the fourth step, which continued throughout the process of writing, to connect them into larger constituents for developing a theory that could grasp the findings. At each step, we returned to former steps to test fit, work, relevance, and modifiability (Glaser and Strauss, 1967).
91 The Data Authority granted permission for the study to be carried out (Journal nr: 2007-41.0305). All of the data was handled confidentially to allow the participants anonymity. The participants were informed verbally and in writing about the aim of the study and provided their consent to participate by means of their signature, in accordance with the Helsinki Declaration (World Medical Association, 1989).
Findings Parents to five infants participated in the first interview (two fathers and three mothers). While seven parents signed up for the interview, two of them changed their minds on the interview day. That meant that eight out of 13 parents identified for the interview did not participate. The reason for the non-participation was not investigated indepth. Several of the non-participating parents expressed their interest in joining but were prevented from doing so on the interview day. All 11 health professionals invited to join the personnel group participated in the study.
Room for family-centered care e a theory The study data showed that the participants’ experiences varied considerably according to the room type. The analysis led to the development of a theory called ‘‘room for family-centered care’’. The theory explains how changing the layout triggered the FCC process. The theory is named from the core category, being the end stage of a process, that moves through three stages: (1) feeling like a visitor to one’s own child (linked to the open space design); (2) feeling like a mother or father (linked to the modified room design); and (3) feeling like a family unit (associated with the smaller room design). During the process a gradual reduction in the parents’ burden was seen as well as an increased workload for the professionals for instant in securing the safety of the children. The fact that remodeling led to ‘‘room for familycentered care’’ in a double sense confirms the parents’ conclusive experience of ‘‘rest and room for coming to terms with the situation’’ and the professionals’ willingness to make room for FCC that was expressed by the fact that they ‘‘. took on the increased demands as a challenge’’.
Feeling like a visitor to one’s own infant (the open space design experience) The study’s findings point to the fact that the room type in which an infant was placed made
92
S.A. Beck et al.
Table 1 Examples of unfinished sentences for parent and personnel group interview preparation Parents
Personnel
The space surrounding my The new layout makes it possible for me to . child’s crib/incubator makes it possible to . I felt anxious when . What is lacking is .
a difference to the degree of attachment that the parents had to their infant; how they perceived their role as parents; as well as to their wellbeing and surplus energy levels. It was evident that the parents experienced feeling like visitors to their respective infants when housed in the open space design (see Fig. 1 above). The environment had no divisions and little room to move around. A mother whose daughter was born 3 months pre-term described her experience with the open space design:
whose twins were born 3.5 months premature found the situation regarding her fragile infants unbearable. Like several other parents, she felt burdened by the noise, the feeling of being exposed and having to fight for space with her infants: ‘‘. We had two incubators placed close to the corridor near the nursing station. And . our infants were in bad shape . we lost one of the twins while we were there . and there’s no privacy here; there‘s such a loud volume of noise, and . people kept walking by and tripping over my legs while I was sitting there . and trying to pump breast milk . and being a mother to two really sick infants . it was real chaos.’’ One mother to a premature extremely growthretarded infant described experiencing the noise from the alarm system as ‘‘beeping hell’’. She shared her initial experience as follows:
‘‘There’s just so much going on in that room while sitting next to an incubator or crib with your child and 20 other people around you. But . one still felt like a visitor. It wasn’t me who was admitted to hospital . it was our daughter . she’s the one who received the care, it was about her e I didn’t matter.’’
’’It took 17 min. I didn’t realize that there was anything wrong, and suddenly he was born . I went into shock . I don’t know, perhaps for as long as a week. I don’t know, I was in complete shock, you know. And I really needed to calm down. I think that I went a little crazy because of those alarms that kept ringing.’’
The open space design also imposed a substantial emotional burden on the parents. A mother
The noise did not only come from the alarm system but also from the general clamor of activity
Figure 1
Room for family-centered care.
Room for family-centered care in the room, i.e. personnel at work, babies crying, people speaking and walking back and forth. The parents also experienced discomfort with being exposed to the curiosity of others. As one father to a seriously ill infant girl on a respirator expressed it: ‘‘it was [an experience of] being in a difficult life crisis without any privacy’’. The parents felt burdened by the lack of space and time to deal with their emotions in that setting. One father expressed his feelings on this point as follows: ‘‘. I can remember that we had some pretty frank doctor rounds during which facts and statistics were given and it was difficult to sit next to and hear [them] in such a large exposed room where other parents sat.’’ The flipside of the problem was the parents’ right to express their joy. They felt like they had to put a lid on their feelings in case these were seen to be inappropriate in an open spaced environment with other ill infants and their families. One father to a 3.5 months premature girl expressed this concern as follows: ‘‘You felt like you didn’t have the right to smile. The baby was certainly very small but you still had to change [her] diaper, and you’d feel good about it all. But there were other parents who were sitting down and crying nearby over a faulty heart valve and you knew they were facing very serious problems.’’ Several of the parents aired their frustrations over the lack of privacy to express their joy and sorrow. Many of them experienced difficulties with witnessing expressions of joy and sorrow from others. One mother had the following experience when accessing the kitchen for parents: ‘‘That was the only place you could go if you had . company . so you could risk going out there and finding a party with about 15 people in full swing, presents being unwrapped and a lot of congratulations, and I just wanted to scream, just scream at them to disappear .’’ Another mother who had her infant in one of the smaller rooms described the value of being able to hide away. She was on her way to the milk kitchen and described the sound of another mother crying that forced her to turn around without getting the milk she required: ‘‘When you’ve experienced several crises and lived through several incidents and are trying to regain your composure, it doesn’t take a lot to tip you off balance again, like [hearing] deep sobbing from a mother. It goes straight to your heart and deeply affects you.’’
93 She underscored the difficulty that the parents could experience with these direct and impromptu confrontations with other parents’ sorrowful reactions in the open space environment of the ward. The most important issue for these parents was finding space for themselves. One mother expressed this need during her infant’s hospital stay as follows: ‘‘The thing that I consider to be the worst issue is not knowing where I belong’’. These experiences mirrored both their frustration and insecurity. This same mother informed about the experience when her husband came to visit her and their infant in the ward: ‘‘Just the issue of where he could leave his jacket and bag . it was very hard for him to be there.’’ It was problematic for the parents to find space close to their infant that they could feel was their private space. This was a recurring finding in the data where ‘‘private space’’ was an important factor for parents both from an emotional and well-being perspective.
Feeling like parents (the modified room experience) The parent bed placed next to the infant positively affected the parents’ sense of closeness to their infant and especially ‘‘feeling like a mother and father’’ (see Fig. 1 above). The inclusion of parent was the most dramatic change to the modified room design, and distinguished it from the open spaced design where an armchair, if unoccupied was the only option. To be given the opportunity to be with one’s infant around the clock influenced the parents to assume an increased role in their infant’s care or treatment. One mother from the smaller rooms section of the ward described this point as follows: ‘‘It made things better that I was allowed to sleep next to her . you felt a part of it all. You also became a more substantial part of her daily life.’’ Seen from the two sets of interview responses, the parent bed was underscored as being the biggest value added item, as it made the parents feel more comfortable in the ward. One of the mothers, however, still felt that she had to fight for space, and described being surprised at herself about her experience with the parent bed: ‘‘I was just like an animal; this was my territory. Just don’t touch it. And if there was anyone like one of the other mothers’ guests that would sit on
94 my bed, I would say, ‘‘No, don’t do that because it’s mine’’. Struggling to this extent to find space affected the parents in the modified rooms to the point where they could not relax or make an important contribution to their infant’s developmental and care needs. The interview with the personnel provided further examples of the inability of the curtain screens to be effective in shielding them in the room. Visually, they did provide a sense of separation but not from sound. It remained a space that opened out to the health personnel’s busy work area. One doctor expressed it as follows: ‘‘It looks a little absurd sometimes in a corner of this division of the ward to see a priest baptizing an infant while the alarms are going off all around. It feels completely wrong. It is much better in the new division with the smaller rooms, where parents have space for themselves. It is obvious to everyone in this division when a baptism is going on but it should be [a] private [matter].’’ Based on the interview statements, the study points to the fact that despite the availability of the parent bed, the modified rooms did not provide the expected opportunities for the parents. One nurse from this division explains: ‘‘Our facilities are still not ideal for parents to lie down and sleep. They are disturbed quite often. They wake up all the time when the door isn’t closed. I also think that there is a sense of more relaxation in the smaller rooms where the layout offers more separation. We lag behind here because there aren’t so many parents who actually sleep e they are just too stressed out’’. It was clear that the curtain screens did not allow the parents to experience any relaxation failing to make them feel comfortable and welcome in the room.
Feeling like a family unit (the smaller room experience) The smaller rooms had a noticeably better layout that supported FCC (see Fig. 1). The parents in this setting experienced their respective infants’ signals and competencies and could gain a feeling of parental responsibility and action orientation. They had positive experiences with their infants, being around them as much as they desired under the entire hospital stay. Despite this, the parents had isolated negative experiences related to the smaller rooms, where they, for example, felt that the personnel took a long time to react to the alarm;
S.A. Beck et al. however, they did believe that the smaller room setting was the best situation for them as a family. A mother’s experience from the smaller room design shows that the opportunity for bonding with her infant is encouraged in this setting. She was mother to a 3.5 months pre-term girl: ‘‘I think that it should be a right for everyone to have a bed next to their infant . it was a great experience for us. That is the best thing that you can offer parents and their baby. I am sure that our infant benefited from having her father and me around continuously. Now that we’re home there is no doubt that we’ve advanced [in our relationship] with her and she feels very secure with us. She doesn’t act like a stressed baby at all. For me that appears to be the goal with having a preemie, that she can come home and react likes a normal baby.’’ In addition, the health personnel stated that these parents felt much more secure about their responsibilities and enhanced their competences to care for their infant. A nurse that worked in the smaller rooms expressed this point as follows: ‘‘These parents walk through the door with a totally different attitude. They come in and feel that the room is theirs. It is their baby . Earlier on I really believed that some parents might doubt whether the infant lying there was actually theirs. Not in this case. They [the parents] know that it is their infant. They’ re there from the start with a completely different way of acting. I think that’s just perfect.’’ The smaller rooms also changed the way that the health personnel respected the parents’ space as well as their infant. They observed that the smaller rooms gave the parents an opportunity to create an intimate atmosphere in a completely different way from that of those parents in the other two room types. The door to each of the smaller rooms acted as a barrier for the staff. A doctor assigned to this section of the ward explains: ‘‘. You really feel that it’s the parents’ infant, the parents’ room, and that you are the visitor . you are made more aware of these things than [with the] earlier [layouts] where you just wandered around. It’s got something to do with the fact that you have to knock when the parents are there. It takes getting used to. Otherwise, I think it’s a good thing.’’ Statements like this confirm that the smaller rooms could trigger power exchange and role sharing between parents and the health personnel
Room for family-centered care
95
regarding responsibility for the child e a change that the majority of personnel experienced as being correct and positive but simultaneously challenging. One nurse expressed concretely her experience with responsibility sharing when parents assumed control of their infant:
Simultaneously their interaction with the staff changed. They felt that the nurse had more time for them and for their infant in the smaller room. This additional benefit further increased the effect of drawing out the parents’ ability to grasp their situation (see Fig. 1).
‘‘I think that you also lose a little power (that perhaps sounds bad). Earlier on, they were [considered to be] more our babies (laughs)’’.
The health personnel saw the increased workload as challenging
This shift in power triggered by the physical surroundings shows that the smaller rooms with a parent bed placed next to each infant helped to improve the parents’ ability to become active and autonomous in a family-centered context. Based on the data collected, ‘‘feeling like a family’’ when in the intensive neonatal care unit was a sensation that was experienced by the parents in the smaller room setting. Here there was privacy for both the infant’s parents and siblings. The parents’ burden was substantially reduced in the smaller rooms where there was space for privacy. Their statements confirmed the relief and the surplus energy the setting promoted. To be able to withdraw and close the door behind them meant an opportunity to recover. One example of a mother who had earlier used the open space layout was expressed as follows:
The study showed that the health personnel’s working conditions changed according to the physical layout design. While the parents were relieved of their burden in the smaller rooms, the staff experienced having increased and larger tasks due to the challenging new environment (see Fig. 1). In the study this was seen both in the smaller room setting and in the modified room layout, especially with regard to collaboration with the parents and in the organization of their tasks. One nurse from the modified room design stressed the importance of infant safety when she described her experience of collaborating with parents after the new layout was put in place:
‘‘I was placed in a smaller room and was actually alone in it for 4 days. It was great. My mood was completely different e I was a completely different person. I felt so good. I could have guests in there with me where we could sit quietly and talk and look over to our infant . it was completely different.’’ Furthermore, the smaller rooms allowed parents to deal with their joys and sorrows around the birth. They were given the tranquility they needed to come to terms with their situation; shielded from the other parents’ emotional expressions and from the noise. As one mother expressed it after moving from the open space side of the ward: ‘‘There was room to be a parent; there was room to be sad and to be happy when those moments came. So, it was a huge liberation for us to come over there. Our daughter was still quite seriously ill, so it wasn’t like it was really a relaxed circumstance, but there was more peace to try and figure out the situation.’’ The experience of tranquility appears to have stimulated a surplus of resources in the parents.
‘‘It presents bigger challenges . for a nurse who is constantly in the private room setting. When the parents sleep next to the infant during the night . Do I wake the father and ask if he wants to participate in what I have to do or do I let him sleep? If we had not come to any agreement in advance about this type of thing it’s hard. At least I had to convince myself not to compromise my nursing for the safety of the child. I think it’s a little bit difficult when parents are around all of the time.’’ The staff’s experience confirmed that communication and interaction with parents had changed character. Projecting power and role sharing brought about a larger demand for clear expectations between the parents and the staff . or as one doctor put it ‘‘clear game rules’’. This was reflected in the staff’s statements about communication challenges, especially when working in the smaller rooms. One nurse expressed her experience of collaborating with parents in the private space of the smaller rooms as follows: ‘‘It also requires that one dares to be honest when communicating and be able to confront . it invites really special demands . it isn’t just a technical ward, there are many other demands [to consider].’’ The statements reflect the need for the professional staff to possess communication skills and personal competencies for interaction. Being
96 close to parents in ‘‘the private space’’ demanded new action patterns or focusing on those action patterns that were not as apparent in the open layout areas of the ward. For example health personnel found themselves facing difficult situations that left the parents afraid and upset. They perceived themselves not only as being more attentive but also more affected by the parents’ anxiety. One nurse described the situation as follows: ‘‘. You can feel the parents’ sadness and nervousness. It gnaws at you, especially if you find yourself in a setting where you can’t really get away. Sometimes it can be too much . not the actual work itself but their [the parents’] concerns can be overwhelming.’’ At the time when the interviews took place with the staff, those assigned only to the section with the smaller rooms had been through a learning process and were progressing in meeting the demands of the changed work environment. For example, one nurse commented on the situation during her night shift when she was confronted with a problem solving exercise in taking care of the infant with the least possible disturbance to the parents: ‘‘Yes, we communicate a lot with the parents. If a father is sleeping, I lift the eiderdown over something to shield him from any direct light and say, ‘‘I just need to turn on the light’’. Also, from an organizational perspective, the staff experienced substantial changes in the way they performed tasks and that also brought challenges. In highly intensive situations, the nurse felt trapped in the smaller room and could not leave the infant even if she was also responsible for an infant in another room. A nurse from another section of the ward shared observations from her shift: ‘‘I have been surprised many times . there was so much to do. It seemed so quiet out in the corridor but then you find out that a nurse had to look after an infant on either end of the ward section but is trapped in a room. I feel that this can be very stressful if you have another infant to care for as well.’’ The staff felt that it was not obvious for other nurses on the shift that their colleague might be ‘‘trapped’’ in a closed room and required assistance. This problem led to a new challenge for the nurses working in the smaller rooms e they had to continuously maintain an overview of the situation in that section. Both the nurse who was momentarily occupied and those who were not
S.A. Beck et al. actively busy were required to remain alert and to know how to formulate the need for help when the opportunity afforded. This collegial interaction involved agreements and planning to taking proper care of the infant and avoid feeling isolated ‘‘working in only one room’’. A nurse participant expressed it as follows: ‘‘You could really feel the difference when it wasn’t busy and if you had a good sparring partner from the start. You can talk about how things are going . for example: When do you think you’ll need something from me? or Is there anything that will require more personnel today? That means a lot. So you have the feeling of sharing the burden with others .’’ The staff experienced that work in the smaller rooms demanded more personnel. They did not feel that they were able to carry out so many tasks simultaneously as was possible in the open space section of the ward. Many of the interview statements reflected the personnel’s feeling of ‘‘needing more hands’’. The frequent feeling of working in isolation caused concern about satisfying criteria for a learning environment in the smaller rooms section of the ward that secured the safety of the infant. The staff experienced that the daily professional dialogue at conferences took on a new mandate. They foresaw forthcoming challenges where an organized learning and teaching milieu needed to be prioritized even after the standard learning period was over. A nurse from the open space room design shared an example: ‘‘I think it takes longer to learn. That is because . when you’ve finished your studies, you work a lot alone and there isn’t any feedback. You have to go and ask: what do you think about this and that or did I do it right?’’ Despite the fact that the personnel found themselves in the middle of a developmental process and still experienced difficulties, they had also found organizational solutions that helped them along the way. They tried to resolve problems through agreements made with their sparring partners on staff and by placing those infants with the highest demand for nursing care in the same room or in rooms next to each other. This was seen as a form of problem solving that answered the sectional overview concern. The staff tried to ensure that planning involved continuous briefing sessions with colleagues about the infants in the ward for whom the nurse was responsible during her shift. One nurse described her experience with
Room for family-centered care the new working methods and the difficulties she faced: ‘‘Our way of planning our day changed as we continuously had to brief each other . I need to know that my colleagues can take it . it can be very difficult because there are always unexpected things that crop up and you want to be sure that what you plan can actually happen. Our sparring practice or lack of it became noticeable.’’ Despite experiencing an increased workload, the health personnel from all of the ward’s sections wanted to create an optimal atmosphere for the parents and infants in the smaller rooms. One nurse from the open space section of the ward stated that she hoped that the entire ward could be remodeled in the future in a way that: ‘‘. would allow the admitted infants to primarily belong to the parents . I don’t know how but certainly something like what was done in the section with the smaller rooms.’’ It was thus a clear finding of the study that the staff saw their increased workloads as challenging. During the interview with the staff, they were primarily committed to the smaller rooms arrangement. They were future thinking in their statements, clearly showing that they were in a developmental process and were motivated to find solutions for those demands they were facing. When asked, the staff did not at all want to return to the open space layout despite the fact that those working in the smaller rooms experienced the greatest work burden. Their attitude was thus also crucial for succeeding in making ‘‘room for family-centered care’’.
Discussion One important finding of the study is that establishing smaller rooms in an intensive neonatal ward made room for FCC. The importance and correctness of this goal was clearly underscored by both parents and personnel through statements that confirmed each group’s thinking and identified issues. Also other studies concluded that the smaller rooms was the best solution for the intensive neonatal ward while the driving factor for arranging single rooms could differ; be it to better protect the infant (Dearing, 2004) or creating better environment for the families (Schoenbeck, 2006). Comparable workload challenges requiring them to develop problem solving models have also been found (Walsh et al., 2006; White, 2005).
97 The study findings underscored the discomfort that parents face when feeling like visitors to their own infants and having to fight to make room for themselves. The study found that the parent bed was an important part of the remodeling e in two ways e the bed concretely provided space for a person who would otherwise feel superfluous and simultaneously signaled the value of this person. The bed symbolized that parents are important on a short- and a long-term basis and the study showed that the parents welcomed both the room and the bed. It is a known phenomenon that parents, especially at the time of their infant’s admission, can feel like outsiders in the intensive neonatal ward’s high tech environment (Heerman et al., 2005). Furthermore, separation after birth from their infant can force parents to experience feelings of uselessness and can force them to face difficulties in defining their role as parents (Flacking et al., 2005). The parent bed clearly signals to them, from the start of their hospital stay, that they are valuable sparring partners in the care of their infant. The study questioned the value of the curtain screening used in the modified room type. Could one have met some of the challenges the staff was facing by placing these screens around the infant and parents in the ward? Could screening with curtains in a future-remodeling scenario be a rational solution? The study findings do not support that assumption but see rather that curtain screens are not enough to support the principles of FCC. The curtain screens created a false impression of privacy where one might be hidden from sight but where everything on the other side of the curtain could be heard. The sounds became distracting and the tranquility needed, as parents in a grieving process, was not there, contrary to the experience of those parents in the smaller rooms. An unpublished study from the Department of Neonatology (Neonatalklinikken) at the Copenhagen University Hospital (Rigshospitalet) that focused on parents’ views regarding future plans to remodel the neonatal ward confirms this finding (Neonatalklinikken (Department of Neonatology), 2008). The parents in that study wanted rooms with doors as they felt that curtain screens did not provide the tranquility they required. The fact that the appropriateness of the curtains as space dividers was both limited and dubious was also confirmed by a study on the influence of the hospital environment on newborn infants with congenital heart disease ‘‘Shielding is good but not enough for a family in a vulnerable situation’’ (Thing and Ytting, 2008).
98 The question begs whether remodeling could have a positive impact independent of the health staff’s viewpoints and welfare. Several studies believe this not to be the case, stating that parents can feel that they do not belong in the ward anyway and that they are timid to adjust to the personnel and routine and where interaction with personnel can limit the parents’ involvement in care of their infant (Cescutti-Buttler and Galvin, 2003; Fenwick et al., 2001). The staff’s views, relational competences and opportunities are also seen to be important factors for making FCC a reality. In several other hospitals, intensive neonatal wards are modeled with the primary focus of safeguarding the admitted infants and to provide individualized developmental care. More recently it has been observed that individual space, independent of any intentional factor, provides the bonus of allowing privacy and the perception that the infant primarily belongs to the parents (White, 2003). That points to the fact that remodeling alone makes a decisive impact. The finding that the personnel in the study became more sensitive to the parents’ needs while together with them in small rooms was confirmed by another study where parents perceived the personnel to be more focused and more present in these surroundings (Acton et al., 1997). Although environmental design can be regarded as a minor influence on FCC it seems to elucidate crucial FCC aspects including participation and collaboration, making the professionals aware of the need to realize these aspects in their care practice. As such, a connection can be confirmed between the environment and other FCC aspects. It is important to note that the staff was ready to put FCC into practice at the Copenhagen University Hospital (Rigshospitalet) because the FCC principles have been implicit in the ward’s basic values up to the time of the study (Neonatalklinikken (Department of Neonatology), 1999). The staff’s doubts about the degree of difficulty in caring for critically ill infants prior to the investigation was reasonable but exorcized by the study paving the way for further development. Several of the findings from the staff related to securing safety of the infants: the need to maintain an overview of the ward, sparring with colleagues and having to continuously learn through problem solving. Thus most of the initiatives already taken by the staff aimed at securing the safety of the infants while remaining confident that maintaining the smaller rooms was the best arrangement for families.
S.A. Beck et al. A strength of the study is that several of its informants had valuable knowledge from their experiences with being housed in more than one of the room types. This can also be seen as a weakness of the Study. It is a unique circumstance to experience being moved with your infant from a chaotic environment to a smaller more private room containing a parent bed. Would the study’s findings have been different if the infant was put directly into a smaller room at the time of its admission? Some studies provide examples of parents experiencing interaction with other parents in the same situation as a support during their hospital stay (Flacking et al., 2005; Pehrson and Sande ´n-Eriksson, 2002). A comparable finding was not found in this study. On the contrary, the respondents were clear in their statements regarding their need to be free from being exposed to other parents’ expressions of grief and joy and they expressed a need to be alone and to be able to close their door when they desired it. Whether parents in the ward could have benefited from interaction with each other cannot be discarded and could be an interesting subject for a future study. ‘‘Room for family-centered care’’ is an important finding that provides a valuable contribution to existing knowledge about remodeling NICUs and the connection between physical layout and FCC. Despite the study’s limitations, the findings underscore that a layout with an arrangement of smaller rooms is important for the facilitation and realization of FCC practice in a ward where the staff is prepared to work according to its principles.
References Acton, L.P., et al., 1997. Children’s health design: designing for family-centered care. Journal of Health Care Design 9, 129e135. Als, H., 1992. A individualized, family-focused developmental care for the very low-birthweight preterm infant in the NICU. In: Friedman, S.L., Sigman, M.D. (Eds.), The Psychological Developmental Psychology, Vol. 6. Ablex Publishing, Norwood, pp. 341e388. Bowie, H.B., et al., 2003. Single-room infant care: future trends in special care nursery planning and design. Neonatal Network 22 (4), 27e33. Brode ´n, M., 2004. Graviditetens muligheder, En tid hvor relationer skabes og udvikles. Akademisk forlag, København. Brown, P., Taquino, L.T., 2001. Designing and delivering neonatal care in single rooms. Journal of Perinatology Nursing 15 (1), 68e83. Caines, A.M., 2002. The best NICU in America 2002: Children’s Hospital, Columbus, Ohio. Neonatal Network 21 (4), 5e6. Carlson, B., et al., 2006. Challenges in design and transition to a private room model in the neonatal intensive care unit. Advanced Neonatal Care 6 (5), 271e280.
Room for family-centered care
99
Cescutti-Buttler, L., Galvin, K., 2003. Parents’ perceptions of staff competency in a neonatal intensive care unit. Journal of Clinical Nursing 12, 752e761. Cox, L.C., Bialoskurski, M., 2001. Neonatal intensive care: communication and attachment. British Journal of Nursing 10 (10), 668e676. Davis, L., Mohay, H., Edwards, H., 2003. Mothers’ involvement in caring for their premature infants: an historical overview. Journal of Advanced Nursing 42 (6), 578e586. Dearing, G., 2004. Monitoring technology enables America’s largest private-room NICU. Neonatal Intensive Care 16 (1), 42e43. Fenwick, J., et al., 2001. Struggling to mother: a consequence of inhibitive nursing interactions in the neonatal nursery. Journal of Perinatology Nursing 15 (2), 49e64. Flacking, R., et al., 2005. Trustful bonds: a key to ‘‘becoming a mother’’ and to reciprocal breastfeeding. Stories of mothers of very preterm infants at a neonatal unit. Social Science & Medicine 62, 70e80. Floyd, A.M., 2005. Challenging designs of neonatal intensive care units. Critical Care Nurse 25 (5), 59e66. Glaser, B., 1978. Theoretical Sensitivity. University of California Press, San Francisco. Glaser, B.G., Strauss, A., 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine de Gruyter, New York. Halkier, B., 2003. Fokusgrupper. Samfundslitteratur og Roskilde Universitetsforlag. Heerman, J.A., et al., 2005. Mothers in the NICU: outsider to partner. Paediatric Nursing 31 (3), 176e200. Hutchfield, K., 1999. Family-centred care: a concept analysis. Journal of Advanced Nursing 29 (5), 1178e1187. Kirkebæk, B., et al. 1994. Skrøbelig kontakt- for tidligt fødte børn og deres samspil med omgivelserne, Udgivet i samproduktion med Videnscenter om Børn og Unge med Multihandicap uden Verbalt Sprog, Dansk psykologisk forlag. Kuschel, C.A., Roy, R.N., 2005. Who’s got what? A benchmarking exercise for tertiary neonatal units. Journal of Paediatrics and Child Health 41, 635e639. Kvale, S., 1997. Interview. Introduktion til det kvalitative forskningsinterview. 1. udgave. Hanns Reitzels Forlag. Malusky, S.K., 2005. A concept analysis of family-centered care in the NICU. Neonatal Network 24 (6), 2005. McGrath, J.M., 2005. Single-room design in the NICU: making it work for you. Journal of Perinatology Nursing 19 (3), 210e211. Neonatalklinikken (Department of Neonatology), 1999. Familiecentreret pleje og behandling i hele indlæggelsesforløbet
http://www.rigshospitalet.dk/NR/rdonlyres/07DF7CE4-687A4097-A595-BB06499E901D/0/Indl%C3%A6ggelse.pdf. Neonatalklinikken (Department of Neonatology), 2008. Unpublished study. Mailto:[email protected]. Pehrson, G., Sande ´n-Eriksson, B., 2002. Reaktioner och psykosociala konsekvenser hos forældrar till mycket fo ¨r tidigt fo ¨dda barn. Socialmedicinsk tidsskrift no 5, 415e422. Schoenbeck, K., 2006. Transition to the private room NICU. Neonatal Intensive Care 19 (6), 26e28. Steinberg, 1981. Aktivt verdivalg, Meninger og handlinger, En pedagogisk metodik. Askild & Ka ¨rnelund Fo ¨rlag, AB, Stockholm. 2. oplag. The Institute for Family-centered Care, 2008.http://www. familycenteredcare.org/faq.html; (Accessed 9th September 2008). Thing, L.F., Ytting, L., 2008. Et familievenligt hospitalsmiljø? En kvalitativ forskningsundersøgelse af det fysiske hospitalsmiljøs betydning for den psykosociale sundhed i familier til indlagte hjertesyge børn. Kbh.: Hjerteforeningens Hjertebarnsfond. Walsh, F.W., et al., 2006. Room for improvement: nurses’ perceptions of providing care in a single room newborn intensive care setting. Advances in Neonatal Care 6 (5), 261e270. Weis, J., 2006. Familiecentreret pleje I en højintensiv neonatalafdeling e udvikling af en metode til at styrke samarbejdet mellem forældre til for tidligt fødte børn og professionelle. Institut for Sygeplejevidenskab, Aarhus Universitet. White, R.D., 2003. Individual rooms in the NICU e an evolving concept. Journal of Perinatology 23, 22e24. White, R.D. (Ed.), 2004. The Sensory Environment of the NICU: Scientific and Design-related Aspects. Clinics in Perinatology, 31; (2), 199e388. White, R.D., 2005. The Physical Environment of the Neonatal Intensive Care Unit e Implications for Premature Newborns and there Care-givers. US Pediatric Care, pp. 13e15. White, R.D., Consensus Committee Chairman, 2006. Recommended standards for newborn ICU design. Journal of Perinatology 26, 2e18. Wigert, H., et al., 2006. Mothers’ experience of having their new born child in a neonatal intensive care unit. Scandinavian Journal of Caring Science 20, 35e41. World Medical Association, 1989. The World Medical Association Declaration of Helsinki. Zahr, L.K., 1998. Two contrasting NICU environments. MCN American Journal of Maternal Child Nursing 23 (1), 28e36.
Available online at www.sciencedirect.com
www.elsevier.com/jneo
Room for family-centered care e a qualitative evaluation of a neonatal intensive care unit remodeling project Sanne Allermann Beck a,*, Janne Weis a, Gorm Greisen a, Mette Andersen a, Vibeke Zoffmann b a
Department of Neonatology, Rigshospitalet, Copenhagen University Hospital, Blegdamsvej 9, DK-2100 Copenhagen Ø, Denmark b Steno Diabetes Center, Gentofte, Denmark Available online 2 April 2009
KEYWORDS Neonatal; Family-centered care; Qualitative evaluation; Focus groups; Environment; Remodeling; Intervention
Abstract The physical layout of a Neonatal Intensive Care Unit (NICU) seems to play an important, yet disregarded role in establishing family-centered care (FCC). Based on two focus group interviews this article qualitatively evaluates how a physical layout intervention changed matters for parents and health personnel. Collectively, the participants experienced three interior design layouts: open space design, modified rooms and smaller rooms. Inspired by grounded theory, the article explains how establishing smaller rooms equipped with a parent bed placed next to the sick infant provided ‘‘room for family-centered care’’ in a double sense: it reduced the parents’ burden by providing space for them to come to terms with the situation and to start the bonding process; it allowed professionals to commit to meeting increased demands. The study concludes that smaller rooms enhance FCC in a NICU when personnel are prepared to accept the challenge. ª 2009 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved.
Introduction This article qualitatively evaluates the way in which a remodeled Neonatal Intensive Care Unit
* Corresponding author. Tel.: þ45 35 455 023; fax: þ45 35 455 025. E-mail address: [email protected] (S.A. Beck).
(NICU) provides an opportunity of triggering family-centered care (FCC) practice. The bonding process between infant and family usually begins immediately following the birth (Brode ´n, 2004). Should the infant be born pre-term and be admitted to the intensive neonatal ward, this process is disrupted and the high tech environment can prevent parents from natural care of their infant (Kirkebæk et al., 1994; Cox and
1355-1841/$ - see front matter ª 2009 Neonatal Nurses Association. Published by Elsevier Ltd. All rights reserved. doi:10.1016/j.jnn.2009.01.006
Room for family-centered care Bialoskurski, 2001). Principles for FCC are used today as a reference frame in many neonatal wards. These principles include acknowledgement of the family as a constant in the infant’s life and as its most important support source. Consequently, parents are supported in strengthening their ability to act and make decisions about their infant’s care and treatment in partnership with healthcare personnel (Hutchfield, 1999; Als, 1992; Malusky, 2005; Weis, 2006). Elements such as dignity, respect, information sharing, participation and collaboration are crucial in FCC (The Institute for Family-Centered Care, 2008). Studies accordingly have focused on health professionals’ communication skills and attitudes to parents and found that professionals must be aware that parents are anxious about the future of their child and need their support to achieve autonomy (Weis, 2006; Wigert et al., 2006; Cox and Bialoskurski, 2001; Heerman et al., 2005). To date, the significance of the physical layout of a NICU generally has been disregarded and only sparsely explored in relation to FCC (McGrath, 2005). Formerly, the organization of a NICU focused primarily on the care and treatment needs of the infant (Davis et al., 2003). To date, a new physical layout is primarily put in place to harmonize with the approach of individualized developmental care (Dearing, 2004; Floyd, 2005; Zahr, 1998). In this care approach, an infant’s signals are interpreted as developmental competencies to which responsive actions are taken concerning the environment, safeguarding the infant from external disturbances such as unnecessary light and sound (Als, 1992). New physical layout forms are adopted gradually as they are seen to support FCC and the environment surrounding the infant, inviting and enhancing the parents’ natural role (Bowie et al., 2003; Caines, 2002; Kuschel and Roy, 2005). Experience, expert allegations and studies have all influenced the professionals’ views about the value of different physical layouts (McGrath, 2005; Brown and Taquino, 2001; Carlson et al., 2006; White, 2004). An evaluative investigation of a remodeled neonatal ward where the layout was changed from an open space to an arrangement of single rooms substantially improved the quality of life for the staff when the two models were compared. The personnel experienced improved collaboration with the parents and the parents felt more comfortable in the remodeled ward where they no longer were in close proximity of other infants and their parents (Schoenbeck, 2006). A comparable study states that the health personnel experienced the remodeled ward as providing a better environment for the infants but that there
89 was a need to pay closer attention to personnel staffing, allocation and training to safeguard the infants (Walsh et al., 2006). One survey showed that within 6 months of establishing the single rooms, parents experienced a substantial sense of privacy compared with the older layout (Carlson et al., 2006). Furthermore, parents’ association was drawn in to develop recommended standards for the layout (White; Consensus Committee Chairman, 2006). No qualitative studies have, however, been done to date on the perspectives of both the parents and the professionals evaluate the different layouts as triggers for FCC practice. At end-2006, the Department of Neonatology (NICU, Level 3) at the Copenhagen University Hospital (Rigshospitalet) was expanded with the addition of a remodeled ward. Having for long believed in the principles of FCC and aimed at putting this approach into practice one of the primary aims of the expansion was to improve the environment for families during their demanding hospital stay. An evaluation of the new layout investigated whether changing the physical surroundings would improve the hospital stay experience for both the personnel and the parents. As several concerns and objections were raised by the personnel during the planning and performance phases of the remodeling, the Head of the Department was uncertain whether the personnel would find it too difficult to work in the new surroundings. Although mainly focusing on the experience of the parents, the study was consequently also motivated by an interest in knowing how the personnel managed the changes. The article presents a qualitative intervention study that changed the physical layout of one section of the ward and qualitatively compared it with a slightly modified part and an older ½ layout designs in the same ward. The article develops a theory explaining how the new layout with smaller rooms, in a double sense, makes ‘‘room for family-centered care’’.
Methodology Prior to the intervention, the ward housed four to seven infants in a room 25 m2 in size that was closed off on three sides. The exposed side of the room opened out to the personnel’s work area. It was only possible for parents to sit in armchairs next to their respective infants. The intervention involved expanding the ward by 1/3rd, posing a considerable change to the ward’s physical layout. More than 1/3rd of the infants were given the opportunity of being housed
90
S.A. Beck et al.
in smaller rooms that had doors and space capacity for only one to two infants. A bed for the parent was placed next to each crib or incubator, where the parent could repose or overnight. This arrangement was also provided for those infants needing intensive care and treatment and who required, for example, a respirator (a small room design). Another 1/3rd of the infants were placed in a slightly different older room layout. This room type housed two to three infants and an equal number of parent beds. The room had curtain screens separating each family and shielding them from the personnel’s work area (a modified room design). The remaining section of the ward’s admitted infants were placed in clusters housing four to seven infants and had no parent beds (an open space design). (See photos below). The open space design.
The smaller room with a parent bed.
The modified room with a parent bed and curtain screens separating the room from the personnel’s work area.
The different sections of the ward were evaluated through qualitative focus group interviews (Halkier, 2003) for their value to the parents and personnel. The participants of the two groups were strategically selected in order to ensure inclusion of experiences with all three forms of layout. Thirteen parents and 11 personnel were invited to participate in the interviewing process. The infants and their parents were using the intensive neonatal ward during the period when the new layout was first established. This meant that several of the study participants from the parent group had already experienced several of the layout designs. Furthermore, all infants had received intensive care and treatment during their hospital stay for short or longer periods. Only Danish speaking parents of discharged, surviving infants were selected. The health personnel (doctors and nurses) were selected from various disciplines and different competency levels. Newly hired health personnel who were not yet familiar with the equipment and tasks were not included in the interview. Prior to the interviewing process, the participants were provided with a set of 22 unfinished sentences that they were to complete as self-reflection in preparation for the interview (see Table 1 below). Each couple of parents received two sets of the incomplete sentences and were advised to initially complete the sentences separately from their partner, after which they should review and discuss each other’s answers. This process allowed both the mother and father’s perspectives to be represented despite the fact that only one parent participated in the interview. The incomplete sentences were
Room for family-centered care developed to target each participant group, using a ‘‘value-clarifying’’ method (Steinberg, 1981) based on four selected themes: security of the child, collaboration, personal values and developmental perspectives. These themes were identified during a brainstorming session with the ward’s management team and emanate from their perception of the problems and benefits of the new layout. The two focus group interviews took place 3.5 months following the remodeling project and transfer to the new rooms. Both sets of interviews took place in the Department’s conference room that was known to all participants. In order to avoid any information bias, the interviews were moderated by an external resource. One observer was present to ensure the accuracy of non-verbal data including, for example, group dynamics and mimicking. The moderator used a semi-structured interview guide (Kvale, 1997). Both interviews were tape-recorded and transcribed (Halkier, 2003). The analytical methodology is a constant comparison method inspired by grounded theory (Glaser, 1978) as we intended to develop a practice anchored theory by inductively analyzing concrete data. As data from informants who had fresh experiences with several room types was desired e a snapshot in time e the study could only capture two interviews and consequently we were aware that theoretical saturation might not be achieved. The analytical work was performed in four steps. First, we performed initial open coding on each interview right after it had taken place. Through a combination of listening and writing notes, we discovered in vivo codes, providing ideas for the tentative advancement of more abstract codes. Second, the material was systematically coded by room type: the smaller room design, the modified room design and the open space design. A critical comparison focused on the most solid categories of the coded data. We used this to specify the content and further the advancement of lasting categories and subcategories. Step 2 ended when ideas for tentative links between categories appeared to emerge. During the third step, we performed comparison across both interviews to explore and confirm links between concepts and thus pattern out theoretical ideas and connections. These initial theoretical constituents were compared in the fourth step, which continued throughout the process of writing, to connect them into larger constituents for developing a theory that could grasp the findings. At each step, we returned to former steps to test fit, work, relevance, and modifiability (Glaser and Strauss, 1967).
91 The Data Authority granted permission for the study to be carried out (Journal nr: 2007-41.0305). All of the data was handled confidentially to allow the participants anonymity. The participants were informed verbally and in writing about the aim of the study and provided their consent to participate by means of their signature, in accordance with the Helsinki Declaration (World Medical Association, 1989).
Findings Parents to five infants participated in the first interview (two fathers and three mothers). While seven parents signed up for the interview, two of them changed their minds on the interview day. That meant that eight out of 13 parents identified for the interview did not participate. The reason for the non-participation was not investigated indepth. Several of the non-participating parents expressed their interest in joining but were prevented from doing so on the interview day. All 11 health professionals invited to join the personnel group participated in the study.
Room for family-centered care e a theory The study data showed that the participants’ experiences varied considerably according to the room type. The analysis led to the development of a theory called ‘‘room for family-centered care’’. The theory explains how changing the layout triggered the FCC process. The theory is named from the core category, being the end stage of a process, that moves through three stages: (1) feeling like a visitor to one’s own child (linked to the open space design); (2) feeling like a mother or father (linked to the modified room design); and (3) feeling like a family unit (associated with the smaller room design). During the process a gradual reduction in the parents’ burden was seen as well as an increased workload for the professionals for instant in securing the safety of the children. The fact that remodeling led to ‘‘room for familycentered care’’ in a double sense confirms the parents’ conclusive experience of ‘‘rest and room for coming to terms with the situation’’ and the professionals’ willingness to make room for FCC that was expressed by the fact that they ‘‘. took on the increased demands as a challenge’’.
Feeling like a visitor to one’s own infant (the open space design experience) The study’s findings point to the fact that the room type in which an infant was placed made
92
S.A. Beck et al.
Table 1 Examples of unfinished sentences for parent and personnel group interview preparation Parents
Personnel
The space surrounding my The new layout makes it possible for me to . child’s crib/incubator makes it possible to . I felt anxious when . What is lacking is .
a difference to the degree of attachment that the parents had to their infant; how they perceived their role as parents; as well as to their wellbeing and surplus energy levels. It was evident that the parents experienced feeling like visitors to their respective infants when housed in the open space design (see Fig. 1 above). The environment had no divisions and little room to move around. A mother whose daughter was born 3 months pre-term described her experience with the open space design:
whose twins were born 3.5 months premature found the situation regarding her fragile infants unbearable. Like several other parents, she felt burdened by the noise, the feeling of being exposed and having to fight for space with her infants: ‘‘. We had two incubators placed close to the corridor near the nursing station. And . our infants were in bad shape . we lost one of the twins while we were there . and there’s no privacy here; there‘s such a loud volume of noise, and . people kept walking by and tripping over my legs while I was sitting there . and trying to pump breast milk . and being a mother to two really sick infants . it was real chaos.’’ One mother to a premature extremely growthretarded infant described experiencing the noise from the alarm system as ‘‘beeping hell’’. She shared her initial experience as follows:
‘‘There’s just so much going on in that room while sitting next to an incubator or crib with your child and 20 other people around you. But . one still felt like a visitor. It wasn’t me who was admitted to hospital . it was our daughter . she’s the one who received the care, it was about her e I didn’t matter.’’
’’It took 17 min. I didn’t realize that there was anything wrong, and suddenly he was born . I went into shock . I don’t know, perhaps for as long as a week. I don’t know, I was in complete shock, you know. And I really needed to calm down. I think that I went a little crazy because of those alarms that kept ringing.’’
The open space design also imposed a substantial emotional burden on the parents. A mother
The noise did not only come from the alarm system but also from the general clamor of activity
Figure 1
Room for family-centered care.
Room for family-centered care in the room, i.e. personnel at work, babies crying, people speaking and walking back and forth. The parents also experienced discomfort with being exposed to the curiosity of others. As one father to a seriously ill infant girl on a respirator expressed it: ‘‘it was [an experience of] being in a difficult life crisis without any privacy’’. The parents felt burdened by the lack of space and time to deal with their emotions in that setting. One father expressed his feelings on this point as follows: ‘‘. I can remember that we had some pretty frank doctor rounds during which facts and statistics were given and it was difficult to sit next to and hear [them] in such a large exposed room where other parents sat.’’ The flipside of the problem was the parents’ right to express their joy. They felt like they had to put a lid on their feelings in case these were seen to be inappropriate in an open spaced environment with other ill infants and their families. One father to a 3.5 months premature girl expressed this concern as follows: ‘‘You felt like you didn’t have the right to smile. The baby was certainly very small but you still had to change [her] diaper, and you’d feel good about it all. But there were other parents who were sitting down and crying nearby over a faulty heart valve and you knew they were facing very serious problems.’’ Several of the parents aired their frustrations over the lack of privacy to express their joy and sorrow. Many of them experienced difficulties with witnessing expressions of joy and sorrow from others. One mother had the following experience when accessing the kitchen for parents: ‘‘That was the only place you could go if you had . company . so you could risk going out there and finding a party with about 15 people in full swing, presents being unwrapped and a lot of congratulations, and I just wanted to scream, just scream at them to disappear .’’ Another mother who had her infant in one of the smaller rooms described the value of being able to hide away. She was on her way to the milk kitchen and described the sound of another mother crying that forced her to turn around without getting the milk she required: ‘‘When you’ve experienced several crises and lived through several incidents and are trying to regain your composure, it doesn’t take a lot to tip you off balance again, like [hearing] deep sobbing from a mother. It goes straight to your heart and deeply affects you.’’
93 She underscored the difficulty that the parents could experience with these direct and impromptu confrontations with other parents’ sorrowful reactions in the open space environment of the ward. The most important issue for these parents was finding space for themselves. One mother expressed this need during her infant’s hospital stay as follows: ‘‘The thing that I consider to be the worst issue is not knowing where I belong’’. These experiences mirrored both their frustration and insecurity. This same mother informed about the experience when her husband came to visit her and their infant in the ward: ‘‘Just the issue of where he could leave his jacket and bag . it was very hard for him to be there.’’ It was problematic for the parents to find space close to their infant that they could feel was their private space. This was a recurring finding in the data where ‘‘private space’’ was an important factor for parents both from an emotional and well-being perspective.
Feeling like parents (the modified room experience) The parent bed placed next to the infant positively affected the parents’ sense of closeness to their infant and especially ‘‘feeling like a mother and father’’ (see Fig. 1 above). The inclusion of parent was the most dramatic change to the modified room design, and distinguished it from the open spaced design where an armchair, if unoccupied was the only option. To be given the opportunity to be with one’s infant around the clock influenced the parents to assume an increased role in their infant’s care or treatment. One mother from the smaller rooms section of the ward described this point as follows: ‘‘It made things better that I was allowed to sleep next to her . you felt a part of it all. You also became a more substantial part of her daily life.’’ Seen from the two sets of interview responses, the parent bed was underscored as being the biggest value added item, as it made the parents feel more comfortable in the ward. One of the mothers, however, still felt that she had to fight for space, and described being surprised at herself about her experience with the parent bed: ‘‘I was just like an animal; this was my territory. Just don’t touch it. And if there was anyone like one of the other mothers’ guests that would sit on
94 my bed, I would say, ‘‘No, don’t do that because it’s mine’’. Struggling to this extent to find space affected the parents in the modified rooms to the point where they could not relax or make an important contribution to their infant’s developmental and care needs. The interview with the personnel provided further examples of the inability of the curtain screens to be effective in shielding them in the room. Visually, they did provide a sense of separation but not from sound. It remained a space that opened out to the health personnel’s busy work area. One doctor expressed it as follows: ‘‘It looks a little absurd sometimes in a corner of this division of the ward to see a priest baptizing an infant while the alarms are going off all around. It feels completely wrong. It is much better in the new division with the smaller rooms, where parents have space for themselves. It is obvious to everyone in this division when a baptism is going on but it should be [a] private [matter].’’ Based on the interview statements, the study points to the fact that despite the availability of the parent bed, the modified rooms did not provide the expected opportunities for the parents. One nurse from this division explains: ‘‘Our facilities are still not ideal for parents to lie down and sleep. They are disturbed quite often. They wake up all the time when the door isn’t closed. I also think that there is a sense of more relaxation in the smaller rooms where the layout offers more separation. We lag behind here because there aren’t so many parents who actually sleep e they are just too stressed out’’. It was clear that the curtain screens did not allow the parents to experience any relaxation failing to make them feel comfortable and welcome in the room.
Feeling like a family unit (the smaller room experience) The smaller rooms had a noticeably better layout that supported FCC (see Fig. 1). The parents in this setting experienced their respective infants’ signals and competencies and could gain a feeling of parental responsibility and action orientation. They had positive experiences with their infants, being around them as much as they desired under the entire hospital stay. Despite this, the parents had isolated negative experiences related to the smaller rooms, where they, for example, felt that the personnel took a long time to react to the alarm;
S.A. Beck et al. however, they did believe that the smaller room setting was the best situation for them as a family. A mother’s experience from the smaller room design shows that the opportunity for bonding with her infant is encouraged in this setting. She was mother to a 3.5 months pre-term girl: ‘‘I think that it should be a right for everyone to have a bed next to their infant . it was a great experience for us. That is the best thing that you can offer parents and their baby. I am sure that our infant benefited from having her father and me around continuously. Now that we’re home there is no doubt that we’ve advanced [in our relationship] with her and she feels very secure with us. She doesn’t act like a stressed baby at all. For me that appears to be the goal with having a preemie, that she can come home and react likes a normal baby.’’ In addition, the health personnel stated that these parents felt much more secure about their responsibilities and enhanced their competences to care for their infant. A nurse that worked in the smaller rooms expressed this point as follows: ‘‘These parents walk through the door with a totally different attitude. They come in and feel that the room is theirs. It is their baby . Earlier on I really believed that some parents might doubt whether the infant lying there was actually theirs. Not in this case. They [the parents] know that it is their infant. They’ re there from the start with a completely different way of acting. I think that’s just perfect.’’ The smaller rooms also changed the way that the health personnel respected the parents’ space as well as their infant. They observed that the smaller rooms gave the parents an opportunity to create an intimate atmosphere in a completely different way from that of those parents in the other two room types. The door to each of the smaller rooms acted as a barrier for the staff. A doctor assigned to this section of the ward explains: ‘‘. You really feel that it’s the parents’ infant, the parents’ room, and that you are the visitor . you are made more aware of these things than [with the] earlier [layouts] where you just wandered around. It’s got something to do with the fact that you have to knock when the parents are there. It takes getting used to. Otherwise, I think it’s a good thing.’’ Statements like this confirm that the smaller rooms could trigger power exchange and role sharing between parents and the health personnel
Room for family-centered care
95
regarding responsibility for the child e a change that the majority of personnel experienced as being correct and positive but simultaneously challenging. One nurse expressed concretely her experience with responsibility sharing when parents assumed control of their infant:
Simultaneously their interaction with the staff changed. They felt that the nurse had more time for them and for their infant in the smaller room. This additional benefit further increased the effect of drawing out the parents’ ability to grasp their situation (see Fig. 1).
‘‘I think that you also lose a little power (that perhaps sounds bad). Earlier on, they were [considered to be] more our babies (laughs)’’.
The health personnel saw the increased workload as challenging
This shift in power triggered by the physical surroundings shows that the smaller rooms with a parent bed placed next to each infant helped to improve the parents’ ability to become active and autonomous in a family-centered context. Based on the data collected, ‘‘feeling like a family’’ when in the intensive neonatal care unit was a sensation that was experienced by the parents in the smaller room setting. Here there was privacy for both the infant’s parents and siblings. The parents’ burden was substantially reduced in the smaller rooms where there was space for privacy. Their statements confirmed the relief and the surplus energy the setting promoted. To be able to withdraw and close the door behind them meant an opportunity to recover. One example of a mother who had earlier used the open space layout was expressed as follows:
The study showed that the health personnel’s working conditions changed according to the physical layout design. While the parents were relieved of their burden in the smaller rooms, the staff experienced having increased and larger tasks due to the challenging new environment (see Fig. 1). In the study this was seen both in the smaller room setting and in the modified room layout, especially with regard to collaboration with the parents and in the organization of their tasks. One nurse from the modified room design stressed the importance of infant safety when she described her experience of collaborating with parents after the new layout was put in place:
‘‘I was placed in a smaller room and was actually alone in it for 4 days. It was great. My mood was completely different e I was a completely different person. I felt so good. I could have guests in there with me where we could sit quietly and talk and look over to our infant . it was completely different.’’ Furthermore, the smaller rooms allowed parents to deal with their joys and sorrows around the birth. They were given the tranquility they needed to come to terms with their situation; shielded from the other parents’ emotional expressions and from the noise. As one mother expressed it after moving from the open space side of the ward: ‘‘There was room to be a parent; there was room to be sad and to be happy when those moments came. So, it was a huge liberation for us to come over there. Our daughter was still quite seriously ill, so it wasn’t like it was really a relaxed circumstance, but there was more peace to try and figure out the situation.’’ The experience of tranquility appears to have stimulated a surplus of resources in the parents.
‘‘It presents bigger challenges . for a nurse who is constantly in the private room setting. When the parents sleep next to the infant during the night . Do I wake the father and ask if he wants to participate in what I have to do or do I let him sleep? If we had not come to any agreement in advance about this type of thing it’s hard. At least I had to convince myself not to compromise my nursing for the safety of the child. I think it’s a little bit difficult when parents are around all of the time.’’ The staff’s experience confirmed that communication and interaction with parents had changed character. Projecting power and role sharing brought about a larger demand for clear expectations between the parents and the staff . or as one doctor put it ‘‘clear game rules’’. This was reflected in the staff’s statements about communication challenges, especially when working in the smaller rooms. One nurse expressed her experience of collaborating with parents in the private space of the smaller rooms as follows: ‘‘It also requires that one dares to be honest when communicating and be able to confront . it invites really special demands . it isn’t just a technical ward, there are many other demands [to consider].’’ The statements reflect the need for the professional staff to possess communication skills and personal competencies for interaction. Being
96 close to parents in ‘‘the private space’’ demanded new action patterns or focusing on those action patterns that were not as apparent in the open layout areas of the ward. For example health personnel found themselves facing difficult situations that left the parents afraid and upset. They perceived themselves not only as being more attentive but also more affected by the parents’ anxiety. One nurse described the situation as follows: ‘‘. You can feel the parents’ sadness and nervousness. It gnaws at you, especially if you find yourself in a setting where you can’t really get away. Sometimes it can be too much . not the actual work itself but their [the parents’] concerns can be overwhelming.’’ At the time when the interviews took place with the staff, those assigned only to the section with the smaller rooms had been through a learning process and were progressing in meeting the demands of the changed work environment. For example, one nurse commented on the situation during her night shift when she was confronted with a problem solving exercise in taking care of the infant with the least possible disturbance to the parents: ‘‘Yes, we communicate a lot with the parents. If a father is sleeping, I lift the eiderdown over something to shield him from any direct light and say, ‘‘I just need to turn on the light’’. Also, from an organizational perspective, the staff experienced substantial changes in the way they performed tasks and that also brought challenges. In highly intensive situations, the nurse felt trapped in the smaller room and could not leave the infant even if she was also responsible for an infant in another room. A nurse from another section of the ward shared observations from her shift: ‘‘I have been surprised many times . there was so much to do. It seemed so quiet out in the corridor but then you find out that a nurse had to look after an infant on either end of the ward section but is trapped in a room. I feel that this can be very stressful if you have another infant to care for as well.’’ The staff felt that it was not obvious for other nurses on the shift that their colleague might be ‘‘trapped’’ in a closed room and required assistance. This problem led to a new challenge for the nurses working in the smaller rooms e they had to continuously maintain an overview of the situation in that section. Both the nurse who was momentarily occupied and those who were not
S.A. Beck et al. actively busy were required to remain alert and to know how to formulate the need for help when the opportunity afforded. This collegial interaction involved agreements and planning to taking proper care of the infant and avoid feeling isolated ‘‘working in only one room’’. A nurse participant expressed it as follows: ‘‘You could really feel the difference when it wasn’t busy and if you had a good sparring partner from the start. You can talk about how things are going . for example: When do you think you’ll need something from me? or Is there anything that will require more personnel today? That means a lot. So you have the feeling of sharing the burden with others .’’ The staff experienced that work in the smaller rooms demanded more personnel. They did not feel that they were able to carry out so many tasks simultaneously as was possible in the open space section of the ward. Many of the interview statements reflected the personnel’s feeling of ‘‘needing more hands’’. The frequent feeling of working in isolation caused concern about satisfying criteria for a learning environment in the smaller rooms section of the ward that secured the safety of the infant. The staff experienced that the daily professional dialogue at conferences took on a new mandate. They foresaw forthcoming challenges where an organized learning and teaching milieu needed to be prioritized even after the standard learning period was over. A nurse from the open space room design shared an example: ‘‘I think it takes longer to learn. That is because . when you’ve finished your studies, you work a lot alone and there isn’t any feedback. You have to go and ask: what do you think about this and that or did I do it right?’’ Despite the fact that the personnel found themselves in the middle of a developmental process and still experienced difficulties, they had also found organizational solutions that helped them along the way. They tried to resolve problems through agreements made with their sparring partners on staff and by placing those infants with the highest demand for nursing care in the same room or in rooms next to each other. This was seen as a form of problem solving that answered the sectional overview concern. The staff tried to ensure that planning involved continuous briefing sessions with colleagues about the infants in the ward for whom the nurse was responsible during her shift. One nurse described her experience with
Room for family-centered care the new working methods and the difficulties she faced: ‘‘Our way of planning our day changed as we continuously had to brief each other . I need to know that my colleagues can take it . it can be very difficult because there are always unexpected things that crop up and you want to be sure that what you plan can actually happen. Our sparring practice or lack of it became noticeable.’’ Despite experiencing an increased workload, the health personnel from all of the ward’s sections wanted to create an optimal atmosphere for the parents and infants in the smaller rooms. One nurse from the open space section of the ward stated that she hoped that the entire ward could be remodeled in the future in a way that: ‘‘. would allow the admitted infants to primarily belong to the parents . I don’t know how but certainly something like what was done in the section with the smaller rooms.’’ It was thus a clear finding of the study that the staff saw their increased workloads as challenging. During the interview with the staff, they were primarily committed to the smaller rooms arrangement. They were future thinking in their statements, clearly showing that they were in a developmental process and were motivated to find solutions for those demands they were facing. When asked, the staff did not at all want to return to the open space layout despite the fact that those working in the smaller rooms experienced the greatest work burden. Their attitude was thus also crucial for succeeding in making ‘‘room for family-centered care’’.
Discussion One important finding of the study is that establishing smaller rooms in an intensive neonatal ward made room for FCC. The importance and correctness of this goal was clearly underscored by both parents and personnel through statements that confirmed each group’s thinking and identified issues. Also other studies concluded that the smaller rooms was the best solution for the intensive neonatal ward while the driving factor for arranging single rooms could differ; be it to better protect the infant (Dearing, 2004) or creating better environment for the families (Schoenbeck, 2006). Comparable workload challenges requiring them to develop problem solving models have also been found (Walsh et al., 2006; White, 2005).
97 The study findings underscored the discomfort that parents face when feeling like visitors to their own infants and having to fight to make room for themselves. The study found that the parent bed was an important part of the remodeling e in two ways e the bed concretely provided space for a person who would otherwise feel superfluous and simultaneously signaled the value of this person. The bed symbolized that parents are important on a short- and a long-term basis and the study showed that the parents welcomed both the room and the bed. It is a known phenomenon that parents, especially at the time of their infant’s admission, can feel like outsiders in the intensive neonatal ward’s high tech environment (Heerman et al., 2005). Furthermore, separation after birth from their infant can force parents to experience feelings of uselessness and can force them to face difficulties in defining their role as parents (Flacking et al., 2005). The parent bed clearly signals to them, from the start of their hospital stay, that they are valuable sparring partners in the care of their infant. The study questioned the value of the curtain screening used in the modified room type. Could one have met some of the challenges the staff was facing by placing these screens around the infant and parents in the ward? Could screening with curtains in a future-remodeling scenario be a rational solution? The study findings do not support that assumption but see rather that curtain screens are not enough to support the principles of FCC. The curtain screens created a false impression of privacy where one might be hidden from sight but where everything on the other side of the curtain could be heard. The sounds became distracting and the tranquility needed, as parents in a grieving process, was not there, contrary to the experience of those parents in the smaller rooms. An unpublished study from the Department of Neonatology (Neonatalklinikken) at the Copenhagen University Hospital (Rigshospitalet) that focused on parents’ views regarding future plans to remodel the neonatal ward confirms this finding (Neonatalklinikken (Department of Neonatology), 2008). The parents in that study wanted rooms with doors as they felt that curtain screens did not provide the tranquility they required. The fact that the appropriateness of the curtains as space dividers was both limited and dubious was also confirmed by a study on the influence of the hospital environment on newborn infants with congenital heart disease ‘‘Shielding is good but not enough for a family in a vulnerable situation’’ (Thing and Ytting, 2008).
98 The question begs whether remodeling could have a positive impact independent of the health staff’s viewpoints and welfare. Several studies believe this not to be the case, stating that parents can feel that they do not belong in the ward anyway and that they are timid to adjust to the personnel and routine and where interaction with personnel can limit the parents’ involvement in care of their infant (Cescutti-Buttler and Galvin, 2003; Fenwick et al., 2001). The staff’s views, relational competences and opportunities are also seen to be important factors for making FCC a reality. In several other hospitals, intensive neonatal wards are modeled with the primary focus of safeguarding the admitted infants and to provide individualized developmental care. More recently it has been observed that individual space, independent of any intentional factor, provides the bonus of allowing privacy and the perception that the infant primarily belongs to the parents (White, 2003). That points to the fact that remodeling alone makes a decisive impact. The finding that the personnel in the study became more sensitive to the parents’ needs while together with them in small rooms was confirmed by another study where parents perceived the personnel to be more focused and more present in these surroundings (Acton et al., 1997). Although environmental design can be regarded as a minor influence on FCC it seems to elucidate crucial FCC aspects including participation and collaboration, making the professionals aware of the need to realize these aspects in their care practice. As such, a connection can be confirmed between the environment and other FCC aspects. It is important to note that the staff was ready to put FCC into practice at the Copenhagen University Hospital (Rigshospitalet) because the FCC principles have been implicit in the ward’s basic values up to the time of the study (Neonatalklinikken (Department of Neonatology), 1999). The staff’s doubts about the degree of difficulty in caring for critically ill infants prior to the investigation was reasonable but exorcized by the study paving the way for further development. Several of the findings from the staff related to securing safety of the infants: the need to maintain an overview of the ward, sparring with colleagues and having to continuously learn through problem solving. Thus most of the initiatives already taken by the staff aimed at securing the safety of the infants while remaining confident that maintaining the smaller rooms was the best arrangement for families.
S.A. Beck et al. A strength of the study is that several of its informants had valuable knowledge from their experiences with being housed in more than one of the room types. This can also be seen as a weakness of the Study. It is a unique circumstance to experience being moved with your infant from a chaotic environment to a smaller more private room containing a parent bed. Would the study’s findings have been different if the infant was put directly into a smaller room at the time of its admission? Some studies provide examples of parents experiencing interaction with other parents in the same situation as a support during their hospital stay (Flacking et al., 2005; Pehrson and Sande ´n-Eriksson, 2002). A comparable finding was not found in this study. On the contrary, the respondents were clear in their statements regarding their need to be free from being exposed to other parents’ expressions of grief and joy and they expressed a need to be alone and to be able to close their door when they desired it. Whether parents in the ward could have benefited from interaction with each other cannot be discarded and could be an interesting subject for a future study. ‘‘Room for family-centered care’’ is an important finding that provides a valuable contribution to existing knowledge about remodeling NICUs and the connection between physical layout and FCC. Despite the study’s limitations, the findings underscore that a layout with an arrangement of smaller rooms is important for the facilitation and realization of FCC practice in a ward where the staff is prepared to work according to its principles.
References Acton, L.P., et al., 1997. Children’s health design: designing for family-centered care. Journal of Health Care Design 9, 129e135. Als, H., 1992. A individualized, family-focused developmental care for the very low-birthweight preterm infant in the NICU. In: Friedman, S.L., Sigman, M.D. (Eds.), The Psychological Developmental Psychology, Vol. 6. Ablex Publishing, Norwood, pp. 341e388. Bowie, H.B., et al., 2003. Single-room infant care: future trends in special care nursery planning and design. Neonatal Network 22 (4), 27e33. Brode ´n, M., 2004. Graviditetens muligheder, En tid hvor relationer skabes og udvikles. Akademisk forlag, København. Brown, P., Taquino, L.T., 2001. Designing and delivering neonatal care in single rooms. Journal of Perinatology Nursing 15 (1), 68e83. Caines, A.M., 2002. The best NICU in America 2002: Children’s Hospital, Columbus, Ohio. Neonatal Network 21 (4), 5e6. Carlson, B., et al., 2006. Challenges in design and transition to a private room model in the neonatal intensive care unit. Advanced Neonatal Care 6 (5), 271e280.
Room for family-centered care
99
Cescutti-Buttler, L., Galvin, K., 2003. Parents’ perceptions of staff competency in a neonatal intensive care unit. Journal of Clinical Nursing 12, 752e761. Cox, L.C., Bialoskurski, M., 2001. Neonatal intensive care: communication and attachment. British Journal of Nursing 10 (10), 668e676. Davis, L., Mohay, H., Edwards, H., 2003. Mothers’ involvement in caring for their premature infants: an historical overview. Journal of Advanced Nursing 42 (6), 578e586. Dearing, G., 2004. Monitoring technology enables America’s largest private-room NICU. Neonatal Intensive Care 16 (1), 42e43. Fenwick, J., et al., 2001. Struggling to mother: a consequence of inhibitive nursing interactions in the neonatal nursery. Journal of Perinatology Nursing 15 (2), 49e64. Flacking, R., et al., 2005. Trustful bonds: a key to ‘‘becoming a mother’’ and to reciprocal breastfeeding. Stories of mothers of very preterm infants at a neonatal unit. Social Science & Medicine 62, 70e80. Floyd, A.M., 2005. Challenging designs of neonatal intensive care units. Critical Care Nurse 25 (5), 59e66. Glaser, B., 1978. Theoretical Sensitivity. University of California Press, San Francisco. Glaser, B.G., Strauss, A., 1967. The Discovery of Grounded Theory: Strategies for Qualitative Research. Aldine de Gruyter, New York. Halkier, B., 2003. Fokusgrupper. Samfundslitteratur og Roskilde Universitetsforlag. Heerman, J.A., et al., 2005. Mothers in the NICU: outsider to partner. Paediatric Nursing 31 (3), 176e200. Hutchfield, K., 1999. Family-centred care: a concept analysis. Journal of Advanced Nursing 29 (5), 1178e1187. Kirkebæk, B., et al. 1994. Skrøbelig kontakt- for tidligt fødte børn og deres samspil med omgivelserne, Udgivet i samproduktion med Videnscenter om Børn og Unge med Multihandicap uden Verbalt Sprog, Dansk psykologisk forlag. Kuschel, C.A., Roy, R.N., 2005. Who’s got what? A benchmarking exercise for tertiary neonatal units. Journal of Paediatrics and Child Health 41, 635e639. Kvale, S., 1997. Interview. Introduktion til det kvalitative forskningsinterview. 1. udgave. Hanns Reitzels Forlag. Malusky, S.K., 2005. A concept analysis of family-centered care in the NICU. Neonatal Network 24 (6), 2005. McGrath, J.M., 2005. Single-room design in the NICU: making it work for you. Journal of Perinatology Nursing 19 (3), 210e211. Neonatalklinikken (Department of Neonatology), 1999. Familiecentreret pleje og behandling i hele indlæggelsesforløbet
http://www.rigshospitalet.dk/NR/rdonlyres/07DF7CE4-687A4097-A595-BB06499E901D/0/Indl%C3%A6ggelse.pdf. Neonatalklinikken (Department of Neonatology), 2008. Unpublished study. Mailto:[email protected]. Pehrson, G., Sande ´n-Eriksson, B., 2002. Reaktioner och psykosociala konsekvenser hos forældrar till mycket fo ¨r tidigt fo ¨dda barn. Socialmedicinsk tidsskrift no 5, 415e422. Schoenbeck, K., 2006. Transition to the private room NICU. Neonatal Intensive Care 19 (6), 26e28. Steinberg, 1981. Aktivt verdivalg, Meninger og handlinger, En pedagogisk metodik. Askild & Ka ¨rnelund Fo ¨rlag, AB, Stockholm. 2. oplag. The Institute for Family-centered Care, 2008.http://www. familycenteredcare.org/faq.html; (Accessed 9th September 2008). Thing, L.F., Ytting, L., 2008. Et familievenligt hospitalsmiljø? En kvalitativ forskningsundersøgelse af det fysiske hospitalsmiljøs betydning for den psykosociale sundhed i familier til indlagte hjertesyge børn. Kbh.: Hjerteforeningens Hjertebarnsfond. Walsh, F.W., et al., 2006. Room for improvement: nurses’ perceptions of providing care in a single room newborn intensive care setting. Advances in Neonatal Care 6 (5), 261e270. Weis, J., 2006. Familiecentreret pleje I en højintensiv neonatalafdeling e udvikling af en metode til at styrke samarbejdet mellem forældre til for tidligt fødte børn og professionelle. Institut for Sygeplejevidenskab, Aarhus Universitet. White, R.D., 2003. Individual rooms in the NICU e an evolving concept. Journal of Perinatology 23, 22e24. White, R.D. (Ed.), 2004. The Sensory Environment of the NICU: Scientific and Design-related Aspects. Clinics in Perinatology, 31; (2), 199e388. White, R.D., 2005. The Physical Environment of the Neonatal Intensive Care Unit e Implications for Premature Newborns and there Care-givers. US Pediatric Care, pp. 13e15. White, R.D., Consensus Committee Chairman, 2006. Recommended standards for newborn ICU design. Journal of Perinatology 26, 2e18. Wigert, H., et al., 2006. Mothers’ experience of having their new born child in a neonatal intensive care unit. Scandinavian Journal of Caring Science 20, 35e41. World Medical Association, 1989. The World Medical Association Declaration of Helsinki. Zahr, L.K., 1998. Two contrasting NICU environments. MCN American Journal of Maternal Child Nursing 23 (1), 28e36.
Available online at www.sciencedirect.com