Abstract
When children are critically ill, parents still strive to be present and participate in the care of their child. Pediatric intensive care differs from other realms of pediatric care as the nature of care is technically advanced and rather obstructing than encouraging parental involvement or closeness, either physically or emotionally, with the critically ill child. The aim of this study was to elucidate the meaning of caring in the pediatric intensive care unit from the perspective of parents. The design of this study followed Benner’s interpretive phenomenological method. Eleven parents of seven children participated in observations and interviews. The following aspects of caring were illustrated in the themes arising from the findings: being a bridge to the child on the edge, building a sheltered atmosphere, meeting the child’s needs, and adapting the environment for family life. The overall impression is that the phenomenon of caring is experienced exclusively when it is directed toward the exposed child. The conclusion drawn is that caring is present when providing expert physical care combined with fulfilling emotional needs and supporting continuing daily parental care for the child in an inviting environment.
Introduction
In pediatric intensive care, the life and vitality of the afflicted child is hanging on a fragile thread. Having a child in a pediatric intensive care unit (PICU) has been found to be intensely demanding and stressful to parents (Aldridge, 2005; Board, 2004; Board et al., 2002; Mcdonald et al., 2012). According to Miles et al. (1989), the most stressful was seeing one’s beloved child in pain, frightened, sad, experiencing the child’s inability to communicate, and, at the same time, feeling unable to protect or help the child. Parents in the PICU seem to have no other option than to turn over the responsibility for caring to professionals, taking a passive and relying role. One may assume that parents suffer and, at the same time, make great efforts to adapt in their divided relationships between their child- and health-care professionals. At the same time, being experts on their child’s needs and care requirements, parents ought to be a reliable resource.
Background
Caring
The theoretical standpoint refers to Patricia Benner’s view that nursing is a caring relationship, ‘an enabling condition of connection and concern’ (Benner and Wrubel, 1989, p. 4). To care about someone means, according to Benner et al. (1999), to be engaged in what matters to the person, that is, certain aspects show up as relevant. According to Benner and Wrubel (1989) and Benner et al. (2009), to care means having a holistic view of the patient involving alleviation of pain, avoidance of suffering, as well as promotion of safety, growth, and health. Caring is connected with love, friendship, parenthood, and comfort and creates meaningful distinctions that provide motivation and direction of meaning for people (Benner et al., 1989). Furthermore, caring for patients and families means recognizing the social context as well as the reciprocal relationship that exists between family members (Benner et al., 2009; Frazier et al., 2010). However, situational conditions might influence the nurse and family’s stance (Söderbäck et al., 2011). Caring is contextual and therefore characterized by room and time (temporality), for example, movement between the present, past, and the future (Benner, 1994).
The PICU from the parents’ and families’ perspective
The PICU differs from other realms of pediatric care in the acuity of the care and a higher possibility of the admission ending in the death of the child (Ramnarayan et al., 2007). It may be so traumatic for the family to have a child admitted to the PICU that the family may experience long-term negative effects (Atkins et al., 2012). According to Ames et al. (2011), parents strive to be present and participate in their child’s care. This could be problematic since parents have been found to experience the culture in the PICU as a hindrance due to stringent routines and specific language used, and their roles as child and parents change into patient and visitors when admitted to a PICU (Mcdonald et al., 2012). Furthermore, Graham et al. (2009) interviewed parents during and after admission to the PICU and found that they experienced a disconnection between their roles as parents at home and as parents in the PICU. Their child’s level of function and understanding was underestimated, and the care lacked longitudinal perspective. Aldridge (2005) found a disconnection between nurses’ assumptions about the needs of parents when their child was admitted to PICU and the parents’ actual need, leading to increased rather than reduced stress among parents.
A child depending on technical support to survive affects all family members, and support needs to be directed toward each family member as well as the family as a whole (Lindahl & Lindblad, 2011). However, Söderbäck et al. (2011) point out the risk of neglecting the child’s perspective when delivering family-centered care. Söderbäck et al. (2011) argue that to truly become child centered, it requires that the adult perceive and understand the child’s world, inviting the child to participate according to his/her ability. However, the severity of the child’s condition might obstruct the child’s ability to express herself/himself leading to her/his needs being monitored exclusively by the adults involved.
To care for the critically ill patient’s family members requires special knowledge due to the nature of the critical care, demanding immediate focus on the patient’s life-threatening pathophysiological states and stabilizing interventions (Benner et al., 1999). The PICU environment can hinder families’ involvement with the child, as it is often stressful, procedure-oriented, crowded, and short staffed (Frazer et al., 2010). On the other hand, when parents can be engaged in caring, even if it involves simple acts, this facilitates patient–family bonding, promoting healing as well as decreasing helplessness and anxiety among parents (Harbaugh et al., 2004). According to Benner et al. (1999), it is crucial to ensure that families can be close to their critically ill loved one. In line with this, Mattson et al. (2011a) found that parents were important resources when nurses perceived and assessed pain.
Caring in the PICU has been elucidated from the perspective of the nurses in studies conducted by Mattsson et al. (2011a, 2011b, 2012). When nurses were found to adopt a holistic caring alignment, they reached a multidimensional pain management approach toward the child (Mattsson et al., 2011a, 2011b). Holistic care meant an ability to combine the child’s immediate needs of interventions from a physiological perspective and simultaneously direct the support from parents to their vulnerable child (Mattsson et al., 2012). Parental needs and family needs in the PICU are illuminated in various aspects and spans over areas, including communication (Benner et al., 1999), parental perceptions compared with staff perceptions (Latou et al., 2011), family-centered care (Frazier et al., 2010; Mcdonald et al., 2012), and the parental role (Ames et al., 2012). The research has been based mostly upon questionnaires and interviews after discharge. In summary, previous findings have highlighted the importance of understanding the parents’ perspective on caring in the PICU. It is an ongoing interest to deepen the understanding in patients and families experiences and to use such findings in clinical quality improvements.
Study aim
The aim of this study was to investigate the meaning of caring in the PICU from the perspective of parents.
Method
The design of this study was an interpretive phenomenological method as described by Benner et al. (2009) and Brykczynski and Benner (2010). Interpretive phenomenology comprises reflection, interpretation, and use of the hermeneutic circle with the aim of understanding aspects of meaning in the lives of those studied (Benner et al., 1999, 2009). Benner et al. (2009) emphasizes that the basic way of being in the context ought to be sought, trying to access the structure of activity as it progresses. The data were divided into two interconnected parts, that is, observations and interviews and was part of a larger study (Mattsson et al., 2012). Investigative triangulation was built into the present design through joint interpretation of the exemplars, comparison, and contrasting of the written interviews and the notes from the observation done by coauthors (JM and MF), and a thematic analysis by the following coauthors (JM, MF, MC, and MA).
Setting
The study is part of a project investigating pain management and caring in the PICU described by Mattsson et al (2012). It took place in Sweden between March and June 2011; the three units represent all specialized pediatric intensive care in the country providing care for children ranging from newborn to 18 years of age. The units offer supervision of failing vital functions, requiring urgent treatment. All specialties are represented, and two of the PICUs also care for children undergoing complicated open-heart surgery. This particular study involves parents that had children undergoing treatment at these three PICUs.
Participants
Eleven parents, seven mothers and four fathers of seven children undergoing treatment in the PICU during the study period were included in this study. All children were being treated for severe life-threatening conditions. The children were between newborn and seven years of age: two were girls and five were boys. The sampling of parents was done consecutively for those parents in the settings who were present during the observation and who agreed to participate in the observation (see Mattsson et al., 2012), additionally, following the interview. All parents who were approached agreed to participate.
Data collection
The rationale for the observations was to capture the situatedness via close observations of direct interaction with children and their parents. The observations consisted of two to four hours of bedside caring situational observations, taking place in a clinical setting, with the observer (JM) seating in a chair in the corner of the child’s room (Mattsson et al., 2012). In direct observations, there is a temporal immediacy and proximity to the exigencies of that practice that is less available in the narrative interview (Benner et al., 2009). Field notes were taken and used to highlight the events that had occurred in the setting in the follow-up interviews with parents. The follow-up interviews were performed at the PICU in a separate room in direct relation to the observations and intended to clarify the parents’ experiences of how their child was cared for in the PICU. The interviews lasted 30–60 minutes and were performed by the same researcher as the one performing observations (JM). The interviews were recorded and later transcribed verbatim, except for one. One couple did not want to leave their child due to the child’s very critical condition; however, they still wanted to share their experience. In this case, the interview was performed bedside and notes were taken. All interviews started with the request to describe their own unique experiences of having a child in the PICU, focusing on pain management and caring. It was the role of the interviewer to allow parents to tell their stories in personal, emotionally filled terms, and at the same time, slowing the pace of the interviews so that details would not be lost (see Benner et al., 2009). An interview guide with thematic questions influenced by Benner and Wrubel (1989) and Benner et al. (2009) was used, and the following themes were discussed: emotional involvement, problem engagement, environmental hindrances, and environmental facilitating. Follow-up questions and inquiries such as: what do you mean by, how did that feel, could you elaborate on that, and so on were used to further explore salient and relevant issues raised by the parents. The field notes were transcribed by JM and the audio-recorded interviews were also verbally transcribed by JM.
Analysis
The analysis switched between the whole and the parts several times in order to gain access to the meaning of the text. Brykczynski and Benner (2010) describe the analysis process as a four-phase process. The first phase contains the data collection described prior as well as verbatim transcriptions of interviews and observation notes. Furthermore, time was spent to condensate the meaning in the parents’ descriptions.
The second phase, interpretation of exemplars, was an attempt to seek what each sentence or sentence cluster revealed. During the interpretive phase, we tried to keep three questions in mind. The first was ‘Is this what the meaning of caring really is?’ The other question was ‘Is this an experience of caring and how does caring show up in this example?’ And the third question was ‘If we leave this out, would it alter our understanding of meaning of caring?’
In the third phase, sentences or parts of sentences that seem to reflect the situation and the experience of parents was compared and highlighted. These processes provided a starting point for reflection, contrasting the variation of data as the fourth thematic phase began. In the fourth phase, the thematic phase, subthemes, and themes throughout the interviews were sought (Benner et al., 1999, 2009).
Research ethics
Ethical approval was obtained from the regional research ethics committee (2011/244/31-1) as well as from the head of each clinic. All parents participated on an informed, independent, and voluntary basis. They were thoroughly informed that they could cease participation at any time. In the data collection, careful attention and consideration were given to the children’s and parent’s vulnerable situation. If the parents wanted the observation to stop for any reason, they could do so by giving the observer a sign previously agreed upon. Thus, every possible action was taken to make it possible for parents to join the study if they wanted, as described in the aforementioned example where the interview was performed bedside. Since parents’ perspective of caring in the PICU is of great importance and it is not possible to gain this information without turning to themselves, the benefit of the study was deemed to outweigh the risk.
Findings
The findings highlight that the prerequisite for caring in the PICU is that it is directed toward the exposed child as a whole person. In contrary, when the child is not focused on as a whole person, caring is experienced as dissolving and vanishing. Caring becomes visible when professionals demonstrate sensitivity to the child’s expressions and needs. Following phrase gives words to a comprehensive interpretation of caring in PICU. In the eye of the storm, a calm and trustful environment was built for the parents together with the child to rest within.
Caring for critically ill children intends to build bridges across chaos in the community with the parents to anchor them in closeness with the child in the present. Caring is to help the child and the parent to be emotionally close and to build boundaries. It is to make it possible for parents and the child to endure togetherness in the frightening and crucial situation.
Significant meanings of caring in the PICU from parents’ perspective are illustrated in the themes: being a bridge to the child on the edge; building a sheltered atmosphere; meeting the child’s needs; and adapting the environment for family life.
Being a bridge to the child on the edge
After the child was admitted to the PICU, parents experienced a feeling of distance to their child, physically as well as emotionally. The severe condition of the child was frightening and prevented the parents from being close to and touching and caring for their child. The nurse could act as a mediator, opening the fragile cage of sickness and interventions/procedures spinning around the child. Through very practical nursing care, by inviting and showing parents how to touch and talk to the severely ill child, the nurse could facilitate for the parent to reach the child. By building a calm and trustful environment, the nurse built bridges side by side with the parent to make it possible for them to reach the child, even if the child was considered as being distant. This aspect of caring elucidates the importance of anchoring the parents in closeness in their child’s presence, helping the child and the parents to be emotionally close, and building boundaries in spite of the frightening environment. This ‘bridging’ takes place when nurses meet the child with love and tenderness as a whole human being, by directing themselves toward the child. They talked a lot, like, now we are going to put a tube in your throat. Now, I’ll touch your right hand a bit, and will hold here so now we are going to, now you’ll feel a bit cold here. When I sat beside and felt, wow, he understands me, I can also talk like that to him. After that I talked more with him, read more, talked to him (i, 12).
This excerpt reveals how ‘bridging’ opens possibilities for the parents to see through and behind the illness. It shows how nurses help the parent and the child to meet and reconnect in sickness. Noting needs preceding the obvious medical needs and elucidate these needs to the parent and support them to fill the child’s needs.
Building a sheltered atmosphere
Security is a fragile quality for parents in the PICU, and an overwhelming need for parents is to feel safe both with the care provided and with the nurses and physicians caring for their child. Experiences of the professional’s skills and their communicative capacity are urgent implicit and explicit factors. When the nurses showed skills and knowledge beyond the obvious situation that their child was in, or when physicians showed knowledge about the child’s history of sickness, trust was built between the parents and the personnel. When parents were informed continuously and chronologically about their child’s treatment, medications, and recovery, the parents felt that their worries had eased. Most of them are well read on the patient. Specific questions where they don’t even go to check, but know the plan. What’s going to happen and what has happened before. It’s mostly like that. About 90 percent, it works very very well. They give consecutive answers so it feels secure too (i, 11).
The above excerpt
Meeting the child’s needs
For parents, the well-being and needs of the child is of the utmost importance. Caring was experienced as present when nurses and physicians had a specific engagement with their child, and such endeavors to get to know the child further helps to alleviate the parents suffering. This happened when the professional did something out of routine and not as expected by providing the child with something that was needed at that specific time, for example, giving them something soothing or a toy. Caring also meant to acknowledge the child’s need for a calm and quiet environment to avoid distress. Needs and well-being were also promoted when adequately preparing the child for upcoming interventions or redirecting interventions when the child became distressed. At the same time, the family also became prepared as to what they might see and their access to their child was not threatened. Here, they haven’t missed to give her morphine; we haven’t had to ask for it (i, 1).
We had a nurse that went up to neonatology and got something soothing, and she felt that she wanted to do it. And then you feel the urge to thank her afterwards (i, 11).
The excerpt above shows that mutual emotional availability, openness, and trust when someone tries to do something personal for the child brings about the opportunity for parents and nurses to meet and work together with interventions around the child.
Adapting the environment for family life
The intensive care environment includes huge challenges for parents. Rooms, beds, and technical utilities facilitate alienation and uncertainty in parents. Parents needed to be invited and introduced to the environment, that is, to find room to be situated in as a prerequisite for parent’s closeness to their child. A chair to sit on was experienced as an inviting gesture, sending a signal of being greeted. When caregivers guided the parents to the side of the bed where it was safe to be seated, a family space where they were able to be close to the child was created. This was experienced as an anchoring point in the environment. It’s important that the physical environment (the furnishing) shows compassion, that you are welcome (parent chair) (i, 2).
The above excerpt shows the importance of an adapting environment for the parents to feel a sense of belonging to their child as a way to strengthen their family bonds.
Discussion
The study reveals that caring touches upon holistic values from the parents’ perspective; being invited to continue to be in close relation with the child on a daily basis is viewed as a parental need. Parents valued being close to their loved ones, knowing what their status is and what will happen next. Responding to and showing concern for the parent’s presence in the environment is thus a part of caring skills. Furthermore, research shows positive outcomes for both the child and family members when there is a close involvement in a critically ill child’s care (Frazier et al., 2010; Smith et al., 2007). However, current research as well as this study reflects parents’ experiences of impending separation from their children, both emotionally and physically, thus increasing their worry and suffering (Aldridge, 2005; Ames et al., 2011; Board and Ryan-Wenger, 2002; Mcdonald et al., 2012; Power & Franck, 2008). As pointed out by Frazier et al. (2010) and Smith et al. (2007), parents need openness, support, and invitations from the PICU to continue the daily care of their child as they did at home. These former findings are highlighted in this study since the data pointed to the fact that caring was viewed ‘vanished’ when the parents felt excluded in the care of their child. The balance between parental care and professional care might be an everlasting challenge to overcome caring for children in hospital settings, and although it can be understood as insatiable or impossible to overcome in the PICU (Mcdonald et al., 2012), parents in this study point to the possibilities and importance of the nurse’s acts to involve them in their child’s care.
Benner et al. (1999) acknowledges family care as an extension of caring for the patient. Expert nurses have developed the skill of being emotionally engaged and socially involved in the patient and the family, resulting in better nursing care. However, to further increase the quality of nursing care, nurses should be aware of their view on the child. On one hand, they can view the child as being an equal in the family; on the other hand, they can view the child as an individual with a family to support them, with resources to facilitate the child during the sickness. How the child is viewed has an impact on how nurses will approach the child and as such on the quality of nursing care given (Mattsson et al., 2012).
The context and the nature of the PICU can become an obstacle and complication for parental involvement, due to the acuity and technical nature as pointed out by Mcdonald et al. (2012). In their study, the problems with open space with patients side by side became obvious. The only physical barrier between children was a curtain, which was usually left open for safety reasons. In addition, there were no chairs to sit on placed close to the child since they could hinder the staff from having quick access to the child if an acute situation arose. In the present study, parents lifted forward that when professionals adjusted the environment, it became more adapted for family life and facilitated parental involvement. The environmental aspects of caring should thus be further considered as shown by Olausson et al. (2012), since the environment in the patient’s room has a significant impact on the families well-being.
As highlighted by Ames et al. (2012), parents strive to be present and participate in their child’s care, forming a bond of trust with the personnel caring for their child and keeping informed about the child’s progress and treatment plan. Caring actions that are well aligned with the intentions of family-centered care, which encourage families to take an active part in the care and decision making for their child during the PICU admittance, are of importance. When caring for the child, family-centered care strives to incorporate partnership and open communication between families and nurses about treatment plans (Frazer et al., 2010). In the PICU, the parental perspective is, thus, an important affirmation. Furthermore, considering the severity of the child’s condition, their own perspective is out of reach. Thus, the parents being experts on their child’s needs and care requirements are reliable resources. However, as argued by Söderbäck et al. (2011), approaching the child’s care by merely with the parents as proxies and grasping the child’s perspective without involving the child might overlook the child’s actual needs. To shelter the child from being neglected, a holistic approach, focusing on the child, is emphasized (Mattsson et al., 2011a, 2011b, 2012). In the present study, it is furthermore highlighted that nurses have to focus on the child as a person, a whole person, and not only in parts. Although the acuity of the child’s condition is prerequisite, a focus on vital parameters such as breathing and circulation is necessary. Health-care professionals need to keep the holistic view of the child in mind since this is the prerequisite for caring, and if caring vanishes, suffering prevails.
What became very clear in this study is that the practical aspects of providing skillful caring, such as facilitating the environment by adapting it for socializing, approaching the child with openness, comforting, touching and talking to the child gave the opportunity for parents to reach out and be close to their child. This is unanimous among the nurses who provide nursing care of critically ill children who finds the meaning of nursing care to be focused on the child as a whole human being (Mattsson et al., 2012). This could also be seen as an extension of caring for the child as suggested by Benner (1999). Spichiger et al. (2005) emphasizes that caring makes people direct their conscious toward whom or what they care for and how help is given or received. Thus, as highlighted by Brykczynski and Benner (2010), by describing the practice, caring practices become visibly articulated and open to discussion as to what facilitates caring and what does not.
As with any method, there are limitations to our data and analysis. The first author’s previous understanding of the PICU context might have influenced the findings. However, critical reflection was incorporated into the analysis since different professional’s experiences were represented in the research group. The interview data are instant and influenced by the parental stress of having a critically ill child admitted to the PICU. Although all aspects of the parents’ perspective of caring for critically ill children have not been fully captured, the study design included both the immediate situatedness from observations and the reflectiveness from interviews close to the experience, giving the opportunity to capture what it is like to have one’s child in the PICU and how caring is experienced from the parents’ perspective. Moreover, the opportunity for parents to give voice to their personal experiences on matters that are important to them has been realized.
Conclusion
The perspective of parents has highlighted different aspects of caring in the PICU, pointing to a holistic attitude with the ill child continuously in first position. Focus on the child as a whole unique person determines if there is caring or lack of caring. When there is a lack of caring, the parents experience the suffering as continuing and as a hindrance to reaching out and protecting their child. Caring that meets the parents’ expectations and provides expert skillful physical care combined with fulfilling emotional needs and supporting continued daily care for the child in an inviting environment are goals for quality nursing. Caring in the PICU means establishing an open and trustful relationship between parents and health-care workers, which in turn supports parental involvement in the care of their critically ill child.
Footnotes
Funding
This research received no specific grant from any funding agency in the public, commercial, or not-for-profit sectors.