4.1. The Parent–Child Patient: A Negative Result of Patient Room Design
Although studies have well demonstrated for years that parents of critically ill children are extremely stressed and at high risk for secondary illnesses due to hospitalization, there has been no research on the impact of patient room architecture on parental stress. Our study indicates, for the first time, that there is a relationship between parents’ anxiety and uncertainty, as well as their assessed well-being of the child, and architectural determinants. Franck et al. [
60] highlighted that research is urgently needed to better understand the needs and preferences in order of family accommodation during a child’s hospitalization. As one answer to this request, our results show that the better the child’s health condition is from the parents’ perspective, and the more certain parents become about their child’s condition, the less anxious they are, and the more distance between parent and child is established within the patient room. In addition, as the parents’ anxiety decreases and the child’s well-being increases, direct interaction is reduced, and withdrawal is sought. However, the room itself is left only with a few exceptions and only for a few minutes during the entire stay. These findings are consistent with studies in other fields that show a correlation between parental insecurity, decreasing trust, and increased closeness to the child. In these studies, both external factors, such as the rotation system of nursing staff [
83], and internal factors, such as children’s speech, language, and communication problems [
84], can be found to increase insecurity and the need for closeness between children with cancer and their co-admitted parent. Research by Cornwell et al. on voice disorders as a component of cerebellar tumor (CT) [
85] complements a study by Gonçalves et al., who described the incidence of speech, language, and hearing difficulties and disorders in children and adolescents with central nervous system (CNS) tumors [
13]. The authors noted that speech–language and hearing complaints and symptoms were reported by 42% of the patient sample and could be recognized as risks associated with pediatric cancer treatments.
Figure 1 shows that there is no way for parents to avoid the child’s demand for closeness and thus reduce their own stress. The outdated floor plans of the patient rooms force parents and the child to constantly be confronted with the stressors of one another and transfer their stresses. The effect sizes of the architectural determinants of the outdated patient rooms are too low to exert a measurable influence on the parents’ stress experience; that is, the distance created between parent and child does not, due to the design of the rooms, create a real optical or acoustic separation of parent and child, which could reduce anxiety and strengthen a sense of security. Parents observe every movement of their child even at a maximum distance in the rooms. This results in the continuous mutual transmission of fears and the disturbance of their own, even relaxing activities. Parents are disturbed in their sleep by every movement of the child or do not allow themselves to fall asleep in the first place. Th literature reveals that sleep disturbance is one of the main distressing factors while being hospitalized in general and is a special problem of rooming-in [
86]. Furthermore, many children and adolescents with cancer experience a severe interruption to mealtime dynamics, which can have a significant impact on the emotional needs of families [
87]. The outdated patient rooms, which we documented, do not meet these needs. There is no place or facility that supports the recreation of (eating, sleeping, or playing) normality. In conclusion, in the old patient rooms, no single architectural determinant contributes to supporting the psychosocial well-being of parents and the child. On the contrary, the space hinders the establishment of normal and healthy interaction, on the one hand, and sufficient privacy on the other. It, therefore, becomes a stressor.
This result explains that despite the observed tendency of parents to withdraw when the child is better, there is no decrease in their anxiety and stress levels. Numerous studies have already documented the high stress levels of parents, who were hospitalized in these kinds of outdated rooms [
58,
88]. One-third of them even developed post-traumatic stress disorder [
16]. Furthermore, Franck et al. showed that housing families outside the hospital have advantages over rooming-in in terms of parental well-being [
89]. Unlike in this study, the parents in our study are not willing to leave the room for more than a few minutes. The observed unwillingness to leave the room for longer periods of time confirms the constant emotional alertness of the parents, which explains the constant fear and tension. We have previously described this phenomenon as the parent–child patient [
76,
90].
Figure 4 describes the emergence of this parent–child patient: When children become seriously or life-threateningly ill, their safe world is suddenly “cracked”, and illness becomes the focus of their life. Rodriguez et al. [
91] asked 106 children with cancer and their parents to report on cancer-related stressors for the child near the time of diagnosis: Daily role stressors included missing school days or falling behind in schoolwork, not being able to accomplish the things they used to, having to go to the hospital or clinic visits, and concerns about family and friends. The stressors related to cancer treatment involved feeling sick or nauseous from treatments, concerns about changes in appearance, and pain and soreness from medical procedures. Uncertainty about cancer included stress related to not understanding what doctors discuss about cancer, feeling confused about what cancer is and its causes, and concerns about the future. Based on both children’s and parents’ reports, all three types of stress were experienced as moderately to highly stressful and with relatively high frequency for children [
91].
If children are admitted to the hospital, the crack becomes larger, since the known living environment—the child’s normality—is suddenly reduced to that of the hospital. Moreover, this environment is initially associated primarily with pain, fear, and illness. In order to adapt to this environment, the parent admitted to the hospital acts as a “healing bridge”, shown in
Figure 5. While studies have already shown that this “healing bridge” is successful and that the co-admission of the parents leads to a reduction in the children’s anxiety and psychological stress, the parents have little opportunity to reduce their own anxiety and stress. On the contrary, in addition to life in the hospital, home life must also be mastered. Partnership, family, job, and siblings place additional demands that lead to the so-called parenting balancing act during this time [
76,
88]. Each phase of a chronic illness can present children and their families with significant challenges and stressors. However, there is evidence that chronic conditions may exert greater psychological and physical stress than acute illnesses that resolve quickly [
92]. This is consistent with more general models of the adverse effects of chronic stress as a consequence of processes of allostatic load that include the physical and psychological wear and tear associated with prolonged or repeated demands that characterize chronic stress [
93]. In a recent study of parents residing in a Ronald McDonald House during their child’s hospitalization, family functioning mediated the relationship between family hardiness and caregiver anxiety, with both family functioning and hardiness reducing anxiety during the hospitalization [
20]. Distance from the hospital has also been shown to affect family function when children have chronic conditions [
94].
4.2. The Parent–Child Patient Unit (PCPU): A Consequent Architectural Approach Based on the Relationship of Patient Room Design and Parental Distress
The hospital design literature depicts many examples of the ways in which hospital design can provide opportunities for both privacy and social interaction and uphold principles of family-centered care, but patient rooms that meet the parents’ needs to be close to their children and at the same time being supported in finding relaxation, privacy, and withdrawal are missing. Despite the decades-long practice of encouraging parents to take an active part in the care of their hospitalized child, there is little evidence on how to accommodate them best, in a way that enables them to be effective and healthy participants in their child’s treatment and recovery [
60].
For example, as our results—and many others—show, there is a high demand for privacy, even related to the described parent–child patient. Privacy is directly related to control issues. As such, privacy can be defined as the selective control of social interactions [
95,
96]. Children and their families want to control to whom they are accessible. This ability to control interactions is so important that these skills may be even more important than the interaction itself [
4]. A sense of control is related to opportunities to modify or alter aspects of the environment [
97,
98]. In hospitals, the established routine render parents helpless. In the outdated patient rooms, parents experience a loss of control related to almost every aspect of their daily lives: what and when to eat and when to receive visitors; they have little opportunity to leave the ward or patient room, are limited in their range of activities, and do not have control over their surrounding physical environment. Opportunities to exert control over the physical environment help combat the sense of helplessness. To counter the feeling of helplessness, Huisman et al. [
99] recommended what they called “self-supporting systems” to enable hospitalized people to control many aspects of the room [
100]. Ulrich’s theory of supportive design conceptualizes the ways in which the healthcare physical–social environment affects patients’ well-being, including the reduction of stress [
101]. Ulrich proposed that physical and social healthcare environments promote well-being if they are designed to foster (a) a sense of control over physical–social surroundings, (b) access to social support, and (c) access to positive distractions.
In 2010, the initiators of the Princess Maxima Center for Pediatric Oncology (PMC)—formerly known as the National Child Oncology Center (NKOC)—commissioned the development of design criteria that address these special needs of children with cancer and their co-admitted parents. The research and development project resulted in a novel patient room typology: the Parent–Child Patient Unit (PCPU) [
76]. The PMC opened its doors in 2018 in Utrecht, The Netherlands. The PCPU has the following design criteria [
76], which are graphically shown in
Figure 6:
The patient room is divided into a child part and a parent part;
Both parts can be separated acoustically and/or visually and gradually, for example, by a sliding door;
Both parts have their own entrance and bathroom, as well as their own work or play and dining table;
Parents have a view of their child from the bed when the door is open;
The child part is clearly zoned into an entrance zone for medical and nursing activities and a private (play) zone where these activities do not occur;
The parent part has direct access to an outdoor area, such as a terrace or balcony;
The PCPU is embedded in functional services for parents within a perceived walking distance of one minute (1 min rule).
Figure 7 shows graphically how the PCPU reacts to the findings of this study: In the case of the negative well-being of the child, parents can sit and sleep close to the child and make the parent part available to another member of the family. In a potentially unfamiliar and stressful environment, the social support of others can ameliorate stress [
102]. Social support is widely acknowledged as a psychosocial factor that influences health outcomes. In the case of medium well-being of the child, the parent can move to its own part of the room and fully control its own privacy by partly opening or closing the door. In the case of the positive well-being of the child, the two rooms can either be joined for activities with family and friends or separated to guarantee total privacy for both parent and child. In the latter case, the effect of positive distraction on hospitalized individuals can be fully achieved. In the model of patient-centered care, using positive distractions is emphasized [
103,
104]. The beneficial role of positive distraction in the health care environment is well documented [
101,
105,
106,
107,
108,
109,
110]. Positive distractions help individuals to focus on stimuli other than their own discomfort and anxiety. These distractions include static stimuli such as reading material, photographs, and representational posters or paintings, as well as active stimuli such as music, companions, or contact with nature [
111].
The PCPU provides temporary and gradual separation of parent and child, which evidently supports an active coping and autonomous development of the child. A number of dispositional coping strategies have been associated with parental mental health after a child’s diagnosis or hospitalization for a life-threatening illness. In general, avoidant or dissociative coping strategies are generally thought to be positively associated with PTSS [
12,
30,
112,
113]. Active coping strategies have also been previously identified as adaptive when coping with chronic illness and hospitalization [
114]. Sung and Herbst considered that a key ethical priority in the consideration of harm for adolescents who spend more than a month in a hospital is to respect and foster autonomy [
115]. Young—and maybe neurodevelopmentally compromised—children fully depend on their parents to establish treatment goals and decide whether burdensome medical therapies should be performed. Diekema [
116] argued that parents’ decisions for their children need not be held to the best interest standard; instead, interventions should not cause undue harm. A temporary spatial separation, as defined for the PCPU, can help to reflect these central ethical considerations.
Moran [
117] discovered that hotel-like elements that emphasize hospitality and comfort could reduce anxiety and promote healing. The ambiance should be as personal as possible such as a homelike environment. Similarly, the effect of furniture arrangements could promote improvements in the wards’ psychosocial atmosphere, as reported by Baldwin [
118]. Since there are no medical actions in the parent part of the PCPU, this part can be designed in a very personal and atmospheric way. When both parts are combined, the atmosphere determines the entire patient room and, even in situations where the child’s health is very poor, creates a health-supportive environment for the parent–child patient.
