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Nurses’ experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU
Intensive and Critical Care Nursing (2017) 39, 9—17
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ORIGINAL ARTICLE
Nurses’ experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU Susanne Knutsson a,b,∗, Karin Enskär a,b, Marie Golsäter a,b,c a
Department of Nursing, School of Health and Welfare, Jönköping University, Sweden CHILD Research Group, Jönköping University, Sweden c Futurum-Academy for Health and Care Region, Jönköping Region, Sweden b
Received 14 February 2016; received in revised form 21 September 2016; accepted 24 September 2016
KEYWORDS Children; Critically ill; Encounter; Family; Intensive care unit; Qualitative study; Relatives
∗
Summary Background: Despite a cultural change in visitation policies for children (0—17 years) in the intensive care unit (ICU) to a more open approach, children are still restricted from visiting for various reasons. To overcome these obstacles, it is vital to determine what is needed while encountering a child. Aim: To elucidate nurses’ experiences of what constitutes the encounter with children visiting a sick parent in an adult ICU. Method: An explorative inductive qualitative design was used, entailing focus group interviews with 23 nurses working at a general ICU. The interviews were analysed according to inductive content analysis. Results: The findings show components that constitute the encounter with children as relatives at the ICU, as experienced by ICU nurses: nurses need to be engaged and motivated; parents need to be motivated; the child needs individual guidance; and a structured follow-up is needed. This reflects a child-focused encounter. Conclusions: Nurses need to adopt a holistic view, learn to see and care for the child individually, and be able to engage parents in supporting their children. To accomplish this the nurses need engagement and motivation, and must have knowledge about what constitutes a caring encounter, in order to achieve a caring child-focused encounter. © 2016 Elsevier Ltd. All rights reserved.
Corresponding author at: P.O. Box 1026, S-551 11 Jönköping, Sweden. E-mail addresses: [email protected] (S. Knutsson), [email protected] (K. Enskär), [email protected] (M. Golsäter).
http://dx.doi.org/10.1016/j.iccn.2016.09.003 0964-3397/© 2016 Elsevier Ltd. All rights reserved.
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Implications for clinical practice • Nurses on adult ICUs need to incorporate a holistic view, in order to facilitate the child (0—17 years) as a whole and be able to see the impact that everything in the child’s surroundings has on them. They need to see the individual child’s needs and adapt to their surroundings. • ICU nurses need to have knowledge about the caring actions and dimensions in healthcare that form a caring encounter, and which actions lead to an uncaring encounter, in order to achieve a caring child-focused encounter. • In order to focus more on the child, the term caring child-focused encounter needs more attention and dignity; and if the term is used more in health care, nurses might include children more and forget them less. ICU nurses need to be enlightened and aware that motivation and engagement, constituting behaviour and knowledge, are vital when encountering children as relatives and when finding a balance between pushing and motivating parents to support their children. • The findings can assist in encountering children as relatives at an adult ICU, and in developing and implementing structured interventions to support these children. A follow-up plan for caring for the child, from the point at which the parent arrives at the hospital or is assessed by ambulance personnel to when daily life starts returning to normal, may ease communication and nurture trust in the encounter.
Introduction As relatives of a severely ill or injured parent admitted to an adult ICU, children (0—17 years) might suffer. If a child is allowed to visit the ICU it might alleviate their suffering, since being present as part of a family situation creates positive feelings of involvement and wellbeing. Caring actions in health care must therefore focus on helping the child become involved in their relative’s situation (Knutsson and Bergbom, 2016). However, nurses’ and parents’ own fear of the situation and an ambition to protect and care for both the patient and the child, still contribute to the child being excluded. Other exclusion factors are: age restrictions regarding the child; environmental factors such as high-tech devices, sounds, alarms and different smells and infection risks for both child and patient (Kean, 2010; Knutsson and Bergbom, 2007a, 2007b; Vint, 2005). In order to change existing restrictions staff and parents impose on children’s involvement, health care staff describe that they need knowledge, education and experience in encountering children as relatives. They also need to improve co-operation and communication, not only with other professions but also among the caring staff (Livesay et al., 2005). Therefore, nurses need solid knowledge about what constitutes a good encounter with children as relatives at the ICU in order to be able to create one. Dieppe et al. (2002) found four key elements to be central to all clinical encounters: values, expectations and attitudes of both professionals and patients/relatives; the time spent and how it is used; trust and the context within which the encounter takes place. They assert that contexts and systems can dictate the nature of the encounter and affect both professionals and patients/relatives, and argue that individual care cannot be successful without a parallel investment in exploring the dimensions of the clinical encounter. According to Rehnsfeldt and Eriksson (2004), the clinical encounter is a point at which caring takes place. They argue that a caring relationship is the core of caring, enabling a meeting, a caring encounter, between nurse and patient/relative, and is also a prerequisite for the experience of involvement (Rehnsfeldt and Eriksson, 2004). The
ideal caring encounter seeks to alleviate suffering (Eriksson, 2001). To secure children’s rights when one of their parents has a severe physical illness, an addendum was made to Swedish legislation on 1 January 2010 (Health and Medical Services Act 1982:763 2g§, Swedish Code of Statutes, 1982; The Patient Safety Act 2010: 659 Chapter 6 § 5, Swedish Code of Statutes, 2010), stating health care professionals’ responsibility to take into account these children’s need for information, advice and support. In addition to this, familyfocused care (FFC) is intended to include the entire family and thereby secure children’s rights; a fundamental notion of FFC is that a family member’s disease and illness affects all the other family members individually (Benzein et al., 2008). However, despite this legislation and a longstanding focus on ‘‘family needs’’ in the ICU, children are still excluded (Kean, 2010). More focus on the child (Kean, 2010; Knutsson and Bergbom, 2016), and on what is needed in the encounter with the child, is vital to secure children’s rights. There is sparse research on what components are needed in the encounter with children as relatives at the ICU. Such knowledge could help alleviate suffering and promote the child’s health and wellbeing, as well as instill a feeling of security in the nurse.
Aim The aim of this study was to elucidate nurses’ experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU.
Method Design This study is based on an explorative inductive qualitative design (Polit and Tantano Beck, 2012). Focus group interviews (Krueger and Casey, 2009) were used in order to explore nurses’ experiences.
Nurses’ experiences of what constitutes the encounter with children
Participants and settings Four focus group interviews, including a total of 23 nurses (four, four, seven and eight participating in the respective groups), were performed at two general ICUs in one county in southern Sweden. Convenience sampling was performed according to established criteria, often used in focus group discussions and involving the selection of participants based on the study’s aim (Krueger and Casey, 2009). The inclusion criteria were ICU nurses with experience of working at the ICU. Of the participating nurses, 20 were female and three were male. All had a specialist nursing education in intensive care, and more than two years’ experience working as an ICU nurse.
Data collection
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the participants could respond (Krueger and Casey, 2009). The interviews were audio-recorded on tape and transcribed by the respective students immediately after the interviews.
Ethical approval The study was performed according to the Swedish law (Swedish Code of Statutes (SFS), 2010) stating that ethical approval is not needed when interviewing health care professionals and the World Medical Association’s (WMA) Declaration of Helsinki (WMA, 2013). Before the interviews the participants received both verbal and written information about the study, how the data would be processed, and confidentiality and voluntariness, which entails the possibility to withdraw one’s participation at any time.
Data analysis
The researcher in charge of the project made initial contact with the selected ICUs. After approval was obtained from the head of the unit, who also chose the participants based on their interest in participation and working the day shift (making them available for interviews according to the work situation at the unit), an information letter and consent form were sent to the participants. After consent was obtained, the time and place for the interviews were determined by the participants. The focus group interviews, conducted by three nursing students on four different days in a meeting room at the ICU, lasted about an hour each. The participating nurses were given verbal information about the study at the beginning of the interviews. Two nursing students led two focus groups and one student led the other two, all under the supervision of the first author, who has experience as an ICU nurse, in research with children as relatives, and in interviewing. One student had conducted interviews previously and all three students had practiced interviewing in their scientific course. The interviews began with the open question ‘‘Tell me about your experiences in encountering children as relatives of a patient at the ICU?’’ The nurses interacted with each other during the interviews, and follow-up questions such as ‘‘How do you mean?’’ and ‘‘Tell me more’’ were asked to clarify, deepen the discussion, and develop an understanding. At the end of the interviews one of the students drafted a conclusion, to which
The transcribed interviews were analysed according to inductive content analysis, described by Elo and Kyngäs (2008), aiming to describe phenomena in conceptual form. The concepts are derived from data, and the analysis comprises three main phases: preparation, organising, and reporting. Each interview was read several times by all authors in order to capture essential features and obtain a sense of the content. Thereafter, all authors independently wrote descriptions as codes reflecting the nurses’ experiences. Then, the codes were compared and discussed in order to reach agreement. They were then renamed and grouped into subcategories based on their similarities and differences. An abstraction of the subcategories based on their similarities and differences was then applied to form generic categories. Finally, the generic categories were abstracted into one main category. The main category ‘‘a child-focused encounter’’, four generic categories and 12 subcategories were formed, describing the ICU nurses’ experiences of encountering children as relatives (Fig. 1).
Findings The findings show what constitutes the encounter with children visiting a sick parent at an adult ICU, as experienced
Nurses need to be engaged and movated Parents need to be movated Need for support Encourage the parent to see the advantage in the child Support the parents
The child needs individual guidance in encountering the sick parent Follow-up is needed Early contact Comforted and secure Show and explain Pliable to the individual child Allowing the child’s reacons Impose hope
Figure 1
Use of a structured follow-up to improve the work Cooperang and using available resources
A child – focused encounter
Enable the process
Overview of the findings’ subcategories, generic categories and main category.
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by ICU nurses (Fig. 1). One component is the engagement and motivation of the nurses. They describe various actions taken in order to enable the process and say they need help in this. The nurses describe motivating the parents as another constituent; they need to encourage parents to see the advantage in their child having contact with the sick parent and support them in focusing on their child’s needs. Another component is to give the child individual guidance; at an early juncture nurses need to contact, show and explain things based on the child’s maturity level. They need to be pliable to the child’s needs and allow them to show reactions. Offering comfort and hope is vital in this insecure situation. The last component is follow-up meetings; the nurses want the possibility to have structured follow-up meetings and to cooperate with other professionals, in order to maintain a holistic perspective and to understand how the children have experienced the encounters. These components are vital in the encounter with children as relatives at the ICU and reflect a child-focused encounter (Table 1).
Table 1
Nurses need to be engaged and motivated The prerequisites for enabling the process of involving children in the situation are knowledge and experience. The ability to enable the process of caring for these children, along with support from others, leads to engagement and motivation for the nurses. The nurses experience that their own engagement and motivation are crucial in caring for children as relatives, as they are the gatekeepers who can give the children access to the sick parent. The work with children as relatives is experienced as a stimulating and exciting task, but at the same time as a great challenge. The nurses describe that earlier research and knowledge, combined with their own experiences of encountering children as relatives, form the base of their work to enable the process of involving children in the situation. They are convinced that children need to be involved in their sick parent’s situation, in order to avoid emotional distress in the present situation as well as
Overview of the findings. Generic categories, subcategories with quotations and main category.
Generic categories
Subcategories
Main category
Nurses need to be engaged and motivated
Enable the process
A child—–focused encounter
‘‘. . .I have not worked for as long. . .’’ ‘‘. . .one can try to find help in some research.’’ Need for support ‘‘..we talk. . .and help each other’’ Parents need to be motivated
Encourage the parent to see the advantage in the child ’’....we bring up that it is good if they can come and see . . . and for their processing’’ Support the parents ‘‘parents often ask . . . do we dare to bring the kids . . . then we encourage them. . .and explains why’’
The child needs individual guidance in encountering the sick parent
Early contact ‘‘we encourage early visits.since the patient change in appearance’’ Comforted and secure ‘‘..we defuse . . . braid their hair . . . we find a way to see and feel their grief and frustration, or anger’’ Show and explain ‘‘we show pictures and machines. . .in a child´ıs way’’ Pliable to the individual child ‘‘children are different . . . you have to be sensitive’’ Allowing the child’s reactions ‘‘the play. . ... they cry. . .they get angry and we tell them that it is okey’’ Impose hope ‘‘..it is important to tell the truth. . . but still retain hope..’’
Follow-up is needed
Use of a structured follow-up to improve the work ‘‘there is a security in. . . if someone takes care of them afterwards’’ Cooperating and using available resources ‘‘. . .then you have to call someone else.. the hospital chaplain’’
Nurses’ experiences of what constitutes the encounter with children in the future. They know this is evidence-based practice, and it motivates them. Hindrances to fulfilling this assignment, although the nurses are convinced of its importance, include structural circumstances such as lack of time and personnel and feelings of insecurity. To be able to encounter children as relatives the nurses state a need for support, both emotionally and structurally. Having a children’s representative at the unit with special responsibility for the work with children as relatives is described as one type of support and as a source for achieving engagement and motivation. Various forms of discussion, reflection or debriefing with colleagues, both formal and informal, are also mentioned as a useful way to get support and thus feel more confident and engaged in the situation. The hospital church is also described as a source of support for the nurses, not only taking care of the families when the nurses lack time but also supporting the nurses when they experience their work as emotionally stressful.
Parents need to be motivated The nurses encourage and support parents in order to motivate them to involve their child/children in the sick parent’s situation and to see the advantage of doing so. By informing parents both verbally and in writing through distributed pamphlets, the nurses negotiate with them in order to encourage the parent to see the advantage in the child being allowed to visit the sick parent at the ICU. Parents may have opposing views about what is best for the child and thus not be interested in letting them be in contact with the sick parent. As a way to try to increase parents’ interest in and awareness of the child’s situation, the nurses try to explain things, based on research as well as their own knowledge and experience, to promote the health of children as relatives. The nurses described trying to convince parents of the importance of allowing the child visit the sick parent; at the same time take into account the entire family situation. The parents’ own worries about the situation may result in an inability to also take into account the children’s perspective, according to the nurses. If the parents do not feel it is a good idea to let the child see the sick parent, believing it may make the child worried, the nurse tries to support the parents by presenting different perspectives on the situation. This can involve talking to the parents about why it is important for a child to see what is really happening and to feel involved and at the same time respect the parents’ decision and continuing to support them in their situation. The nurses describe that their offering support in this way makes the parents feel more secure in the situation. When the parents have built up more confidence, the nurses resume discussing the child’s situation. In doing this, they hope the parents will see and perceive the child’s situation in a different way. The sick parent or relative may have worries about frightening the child, for instance if the disease or accident has made them look different, and therefore may not want the child to visit. In this situation as well, the nurses describe trying to support the parents to enable the child to visit.
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The child needs individual guidance in encountering the sick parent Caring actions such as making early contact, helping the child feel comforted and secure, providing information based on maturity, showing and explaining, being pliable to the individual child, allowing reactions and imposing hope, are needed in order to be able to offer individual guidance to children when they visit their sick parent. The nurses describe that every child needs individual guidance in encountering their sick parent based on their experience, developmental stage and reaction to the situation, to feel reassured in the strange environment of the ICU unit. One important aspect described by the nurses is that it is an advantage for the child to come to the ICU at an early stage. Early contact is needed, because the parent’s appearance may change and because the child’s fantasies about the situation may grow if too much time passes. If this is not possible, another action to make the situation more visible to the child is to take photos for the other parent to take home for the child to look at. The nurses describe it as important to help the child feel comforted and secure in the situation and, in order to accomplish this, undertake actions such as meeting the child in the waiting room, describing the ICU room environment, and explaining that there are other patients in the room. The nurses also accompany the child into the room, and do not leave him/her alone there. Encouraging the child to have physical contact with the sick parent and helping them express things that might feel frightening are also described by the nurses as actions taken in order to comfort the child. Most of the children are eager to learn and are reasonable and curious, which facilitates for the nurses to provide information based on the child’s maturity level and avoid misunderstandings. To make the situation more concrete and understandable for the individual child, the nurses describe how they show and explain the different equipment used in caring for the sick parent. Most children find the equipment fascinating, and the nurses describe letting them touch and experiment with it as a way to defuse the situation. Being pliable to the individual child by trying to adjust to his/her pace and successively give more information, or helping the child approach the parent, is described as an action used by the nurses. They also describe that, particularly with teenagers, they experience it as important to give space both physically and psychologically, and not be too intrusive. By letting the child decide the pace, they can gradually involve him/her in the situation more and give more, and in some cases repeated, information based on the child’s actions. In trying to adjust to the individual child’s pace, the nurses try to facilitate for them to feel in control of the situation. Showing interest in the child’s everyday life is also described as an action to support them in being in control of the situation. Allowing the child’s reactions in the situation is described by the nurses as an important action. By showing understanding and telling the child it is normal to be sad and show one’s feelings, the nurses guide them in encountering the sick parent. They believe it is essential for a nurse to be prepared to deal with different reactions from children and to remain steady and dare to face a child’s reactions. The
14 nurses also describe trying to impose hope on an individual level by being honest, being supportive, and reassuring the child that he/she will be able to manage the situation.
Follow-up is needed In order to be able to give good, qualitative care in encounters with the child, one aspect the nurses deem important is to ensure that they receive care and support, no matter what. To accomplish this, they describe a need for structured follow-ups, co-operation and the use of available resources. The nurses describe a limitation in not having structured follow-up meetings with the child to ensure that they are doing well and to determine the need for further support. They experience that a follow-up meeting is a necessary caring action in the process of encountering children as relatives. If this is omitted, they describe that the children are not encountered properly. The use of a structured follow-up to improve the work with the children/families can be one way to obtain children’s and parents’ perspectives on the care provided. Structured follow-up meetings may serve as a base for further improving the work, in order to care for and support both the child currently in focus as well as any future children as relatives on the ICU. The nurses explain that cooperating and using available resources help them ensure that the child and family get the care and support they need, even if it is beyond the nurses’ own ability and competence. The hospital church is described as one partner to collaborate with when taking care of children and families; this support is something the nurses use extensively. Counsellors in the hospital are also described as a party to collaborate with, but are seldom present at the ICU. Instead, the counsellors take over when the patient leaves the ICU for further care at another unit. The nurses describe that the health care system has an overall obligation to care for and support children as relatives, but are not sure of whether and how others take over when the parent is no longer a patient on their unit. Collaboration with health care professionals outside the hospital, such as school counsellors and school nurses, is described as one way to improve the work with children as relatives in order to ensure that they receive support when they need it after their parent has left the ICU or died.
Discussion The findings show components undertaken in the encounter with children as relatives. These components show that nurses need to make the individual child visible by motivating parents to bring them to visit and by offering the child individual guidance. The nurses need knowledge and experience in order to be able to be engaged and motivated, and they need to cooperate with other professions and perform a structured follow-up; all this in order to achieve a caring child-focused encounter.
Caring actions that constitute a caring encounter The components revealed in the findings, in light of Rehnsfeldt and Eriksson’s (2004) thoughts, are caring actions since they are taken in order to care for the child, and
S. Knutsson et al. the encounter is a caring encounter since it is a point at which caring takes place. In other words, the findings show caring actions that constitute a caring encounter with children as relatives at the ICU. The word constitute can be defined as ‘‘being a part of a whole’’, which also reflects the findings. The encounter consists of not only the actual encounter with the child, but also everything around the child that has an impact on their life and experience. All caring actions in the findings highlight this. The nurses in this study describe a holistic view when it comes to meeting with children as relatives—–encountering children. Eriksson (2002) asserts that the nurse needs to see the child as a whole, and it is essential that a human being be cared for as an entity consisting of body, soul and spirit. Holistic care prevents suffering (Eriksson, 2002), and has an impact on both the child’s and the patient’s response to the situation (McLaughlin, 1993). Halldorsdottir (1996) describes a good encounter, a caring encounter, between nurses and patients as a bridge to cross. The aspects of this caring encounter are: being open and perceptive; being genuinely concerned and morally responsible; being truly present and dedicated and having the courage to be involved appropriately as a professional nurse. These caring aspects can be compared to the findings in this study. In this study, the caring actions taken in order to make the nurses engaged and motivated are in line with Halldorsdottir’s findings, while the caring actions need to motivate parents, need to give the child individual guidance, and need a follow-up are aspects not identified by Halldorsdottir. These aspects may be valuable to add when it comes to encountering children as relatives at the ICU. The findings in this study show that the encounter is composed of several components. According to Rehnsfeldt and Eriksson (2004), it is in the encounter that caring takes place; they argue that a caring relationship is the core of caring and enables an encounter. According to Dahlberg et al. (2003), a caring relationship is characterised by respect, trust, dignity, integrity and closeness in which the nurse should be able to see, listen, empathise with and confirm. Dieppe et al. (2002) found that the expectations and attitudes of both professionals and patients/relatives, the time spent and how it is used, trust, and the context within which the encounter takes place are vital factors for a clinical encounter. All these aspects are worth taking into account when exploring ‘‘the dimensions in the encounter’’, and may help nurses in encountering children as relatives. Dieppe et al. (2002) assert that, in order to be successful in care, ‘‘dimensions’’ in the encounter need to be explored. Altogether, this shows that the encounter is multidimensional and needs to be approached with open senses. Paterson and Zderad (1988) assert that nurses have to use all their senses in order to create an authentic encounter, and this has to be learned and practiced both in nursing education during simulation and through experiences in real life when caring for patients. Halldorsdottir (1996) also describes uncaring actions such as disinterest, insensitivity, coldness and inhumanity. These actions are illustrated as a wall that causes a lack of caring connections. Eriksson (2001) asserts that ‘‘uncaring’’ entails a lack of wholeness, a lack of a holistic view. The intention of this study was not to find uncaring actions; however, nurses need to be aware that such actions will hamper the
Nurses’ experiences of what constitutes the encounter with children encounter (Dieppe et al., 2002), indicate a lack of affective caring behaviour (Wiman and Wikblad, 2004), and lead to suffering (Eriksson, 2001). Fitzpatrick et al. (1983) assert that a negative clinical encounter may lead to adversely affected health outcomes.
Make the child visible One caring action described by the nurses as important in the encounter is to offer the child individual guidance; to see the individual child. Clarke (2000) argues that it is important for nurses to recognise the individual child’s needs. However, this can be a struggle when the child is not visible at the unit (Knutsson et al., 2004; Knutsson and Bergbom, 2007a, 2007b). The findings show that nurses need to encourage and support parents in order to motivate them to involve their child/children in the sick parent’s situation and to see the advantage of this involvement. Clarke (2000) describes that if parents feel unable to support their child or do not want them to visit, it is important that nurses provide them assistance in order to enable the child’s visit. According to Clarke (2000), parents have a desire to protect and shield their child and use this as a rationale for not allowing him/her to visit. However, visiting may diminish suffering (Knutsson and Bergbom, 2016), help children cope with stress, and prevent exclusion and isolation (Clarke, 2000). Clarke (2000) asserts that parents could be encouraged by initiating discussion and sharing information regarding bringing the children to visit. The challenge is to find a balance between pushing and motivating and to see what the individual child needs.
Knowledge and experience nurture engagement and motivation The nurses in this study describe that they need knowledge and experience. Knowledge about the positive and negative impacts on children is needed; if nurses receive this, they may be more engaged and motivated to encounter children as relatives. Clarke (2000) argues that nurses should be provided with education and training in how to communicate with children based on growth and developmental theories. Hanley and Piazza (2012) have provided caregivers with a framework for age-appropriate education; the education, based on developmental stages, includes children’s understandings of illness and death. Their findings demonstrate that the intervention increased staff comfort level, was experienced as positive by patients and families, and eased fears among children and helped them cope with the situation. Kean (2010) asserts that nurses need education in listening skills, and in understanding children and their needs. Wiman and Wikblad (2004) stress that the nurses’ behaviour is essential in the encounter. The nurses’ behaviour and knowledge about how to encounter children, or, indirectly, their engagement and motivation, are vital in striking a balance between pushing and motivating parents to support their children. The findings in this study indicate that the Swedish legislation (Health and Medical Services Act 1982:763 2g§, Swedish Code of Statutes, 1982; The Patient Safety Act 2010: 659 Chapter 6 § 5, Swedish Code of Statutes, 2010) has not been sufficiently implemented and needs to receive more attention and be regarded with
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more dignity, and that there is a lack of knowledge among nurses. It takes time to change habits, but this needs to be accelerated in order to promote children’s involvement and health.
A follow-up plan will ease communication and instill trust in the encounter The nurses in the study describe that they need a structured follow-up in order to encounter the child in a caring way. Wiman and Wikblad (2004) found that Halldorsdottir’s theory of caring and uncaring encounters in nursing and health care is partly applicable in emergency care. The theory could therefore also assist in the ICU, when it comes to encountering children as relatives and for the development and implementation of structured interventions and follow-ups to support these children. Co-operation with other professions and structured follow-ups need to be organised and developed. A plan for children as relatives, from the very beginning at the point at which the parent arrives at the hospital or is picked up by an ambulance when daily life starts returning to normal, is needed and may ease communication and nurture trust in the encounter. Trust is a crucial constituent of the encounter (Dahlberg et al., 2003). When trust is present, the child will have more knowledge about what is going to happen and thereby more control over the situation, which may diminish their suffering (Knutsson and Bergbom, 2016).
Towards a caring child-focused encounter The main category in this study was a child-focused encounter. Based on the findings and the previous discussion, the caring actions found in this study could act as a platform towards forming a caring child-focused encounter. The nurses’ experiences highlighted a desire to be more focused on the child as a relative when caring for a patient with children in the family. Research (Kean, 2010; Knutsson et al., 2008; Knutsson and Bergbom, 2016) has also stated that more child focus is needed. FFC refers to when the focus is on the family’s significance for the individual person’s experience of ill health and sickness (Benzein et al., 2008). The concept ‘‘caring child-focused encounter’’ could be used within or together with FFC in order to achieve more child focus in the FFC, meaning that units could adopt a care more focused on the family, comprising a caring child-focused encounter. If the term ‘‘caring child-focused encounter’’ attains more dignity and is used more in caring, perhaps nurses will include children more and forget them less.
Study limitations With the researchers having certain assumptions and previous experience in this subject, an open mind, sensitivity and constant reflection helped ensure trustworthiness (Polit and Tantano Beck, 2012). On the other hand, the students involved had no previous experience of children as relatives. According to Polit and Tantano Beck (2012), groups of about 5—15 are preferable. In this study, two focus groups
16 contained four people each. This occurred due to a lack of time within the unit to allow nurses to attend; at the time, the ICU was over capacity with patients and had a limitation on nursing staff. These two interviews gave a great deal of rich data and generated a great deal of dialogue (Polit and Tantano Beck, 2012), since the participating nurses talked and discussed things widely. Polit and Tantano Beck (2012) argue that any group format is efficient and can generate a great deal of dialogue. Groupthink and lack of anonymity were considered and discussed in the groups. The interview setting was chosen by the participants, in order to minimise uncomfortable feelings associated with expressing or describing experiences in front of others (Polit and Tantano Beck, 2012). The analysis process is described well and in detail and links between data and results are demonstrated. All researchers have read and worked with the categorisation and quotes have been used to increase trustworthiness. In the beginning the categorisation phase felt chaotic, but moving back and forth between the data and maintaining a dialogue among the coresearchers helped support the concept production; through this, the reliability of the categories was ensured (Elo et al., 2014).
Conclusions The study demonstrates caring actions that constitute a caring encounter. Knowledge about and experience with children as relatives and how to approach them, nurture engagement and motivation. Altogether, this is vital for nurses when trying to strike a balance between pushing and motivating parents to support their children. The challenges for nurses are to make the child visible, to motivate the parents to bring him/her to visit, and to see and care for the individual child. Co-operation with other professions and a structured follow-up plan that eases communication and instills trust in the encounter need to be organised and developed. The study shows that the encounter is multidimensional and that nurses have to use all their senses to create a caring encounter to help diminish a child’s suffering. There is a need for a holistic and individual approach when encountering children as visitors. Nurses need to focus more on the child as a relative and must have knowledge about what constitutes a caring encounter in order to achieve a caring child-focused encounter. The term caring child-focused encounter needs to receive more attention and be regarded with more dignity in order to keep children from being forgotten. Intervention studies on the caring child-focused encounter, and on whether Halldorsdottir’s theory of caring and uncaring encounters is applicable in a context such as children as relatives, would be useful in encountering these children in as caring a way as possible.
Acknowledgements We wish to express our sincere gratitude to the students Åsa Johansson, Therese Isaksson och Cajsa Petersson for their contributions to the focus-groups interviews and also all the nurses at the ICUs who participated in the interviews.
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Funding The study has been supported by: Forte (Grant number 2013-2082) and School of Health Sciences, Jönköping University. Conflict of interest The authors have no conflict of interest to declare.
References Benzein E, Hagberg M, Saveman B-I. Being appropriately unusual— –a challenge for nurses in health promoting conversations with families. Nurs Inq 2008;15(2):106—15. Clarke C. Children visiting family and friends on adult intensive care units: the nurses’ perspective. J Adv Nurs 2000;31(2):330—8. Dahlberg K, Segesten K, Nyström M, Suserud B-O, Fagerberg I. Att förstå vårdvetenskap (Understanding Caring Science). Lund: Studentlitteratur; 2003. Dieppe P, Rafferty AM, Kitson A. The clinical encounter—–the focal point of patient-centred care. Health Expect 2002;5(4):279—81. Elo S, Kyngäs H. The qualitative content analysis process. J Adv Nurs 2008;62(1):107—15. Elo S, Kääriäinen M, Kanste O, Pölkki T, Utriainen K, Kyngäs H. Qualitative content analysis: a focus on trustworthiness. SAGE Open 2014;4(1):1—10. Eriksson K. Den lidande människan (The suffering human being). Stockholm: Liber AB; 2001. Eriksson K. Encounter: a fundamental category of nursing as an art. Int J Hum Caring 2002;6(1):34—40. Fitzpatrick RM, Hopkins AP, Harvard-Watts O. Social dimensions of healing: a longitudinal study of outcomes of medical management of headaches. Soc Sci Med 1983;17(8):501—10. Halldorsdottir S. Caring and uncaring encounters in nursing and health care—–developing a theory. Doctoral dissertation. Linköping: Linköping University; 1996. Hanley JB, Piazza J. A visit to the intensive cares unit: a familycentered culture change to facilitate pediatric visitation in an adult intensive care unit. Crit Care Nurs Q 2012;35(1):113—22. Health and Medical Services Act 1982:763 2g§, Swedish Code of Statutes 1982. Sweden. Kean S. Children and young people’s strategies to access information during a family member’s critical illness. J Clin Nurs 2010;19(1/2):266—74. Knutsson S, Otterberg C, Bergbom I. Visits of children to patients being cared for in adult ICUs: policies, guidelines and recommendations. Intensive Crit Care Nurs 2004;20(5):264—74. Knutsson S, Bergbom I. Nurses’ and Physicians’ viewpoints regarding children visiting/not visiting adult ICUs. Nurs Crit Care 2007a;12(2):64—73. Knutsson S, Bergbom I. Custodians’ viewpoints and experiences from their child’s visit to an ill or injured nearest being cared for at an adult intensive care unit. J Clin Nurs 2007b;16(2):362—71. Knutsson S, Samuelsson I, Hellström AL, Bergbom I. Children’s experiences of visiting a seriously ill/injured relative on an adult intensive care unit. J Adv Nurs 2008;61(2):154—62. Knutsson S, Bergbom I. Children’s thoughts and feelings related to visiting critically ill relatives in an adult ICU: a qualitative study. Intensive Crit Care Nurs 2016;32:33—41. Krueger R, Casey M. Focus groups—–a practical guide for applied research. Thousand Oaks: Sage Publication; 2009. Livesay S, Gilliam A, Mokracek M, Sebastian S, Hickey JV. Nurses’ perceptions of open visiting hours in neuroscience intensive care unit. J Nurs Care Qual 2005;20(2):182—9. McLaughlin P. A standard to meet high expectations. Assuring quality care for families of intensive care patients. Prof Nurs 1993;9(3):170—5.
Nurses’ experiences of what constitutes the encounter with children Paterson JG, Zderad LT. Humanistic nursing. Natl Leag Nurs Publ 1988;41—2218(i—iv):1—129. Polit DF, Tantano Beck C. Nursing research. Generating and assessing evidence for nursing practice. 9th ed. Philadelphia: PA: Lippincott Williams & Wilkins; 2012. Rehnsfeldt A, Eriksson K. The progression of suffering implies alleviated suffering. Scand J Caring Sci 2004;18(3):264—72. Swedish Code of Statutes, (SFS). http://www.riksdagen.se/sv/ Dokument-Lagar/Lagar/Svenskforfattningssamling/; 2010 [accessed 13.02.16].
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The Patient Safety Act 2010: 659 Chapter 6 § 5, Swedish Code of Statutes 2010. Sweden. Vint PE. An exploration of the support available to children who may wish to visit a critically adult in ITU. Intensive Crit Care Nurs 2005;21(3):149—59. Wiman E, Wikblad K. Caring and uncaring encounters in nursing in an emergency department. J Clin Nurs 2004;13(4):422—9. World Medical Association. Declaration of Helsinki. (WMA). http://www.wma.net/en/30publications/10policies/b3/; 2013 [accessed 13.02.16].
Contents lists available at ScienceDirect
ScienceDirect journal homepage: www.elsevier.com/iccn
ORIGINAL ARTICLE
Nurses’ experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU Susanne Knutsson a,b,∗, Karin Enskär a,b, Marie Golsäter a,b,c a
Department of Nursing, School of Health and Welfare, Jönköping University, Sweden CHILD Research Group, Jönköping University, Sweden c Futurum-Academy for Health and Care Region, Jönköping Region, Sweden b
Received 14 February 2016; received in revised form 21 September 2016; accepted 24 September 2016
KEYWORDS Children; Critically ill; Encounter; Family; Intensive care unit; Qualitative study; Relatives
∗
Summary Background: Despite a cultural change in visitation policies for children (0—17 years) in the intensive care unit (ICU) to a more open approach, children are still restricted from visiting for various reasons. To overcome these obstacles, it is vital to determine what is needed while encountering a child. Aim: To elucidate nurses’ experiences of what constitutes the encounter with children visiting a sick parent in an adult ICU. Method: An explorative inductive qualitative design was used, entailing focus group interviews with 23 nurses working at a general ICU. The interviews were analysed according to inductive content analysis. Results: The findings show components that constitute the encounter with children as relatives at the ICU, as experienced by ICU nurses: nurses need to be engaged and motivated; parents need to be motivated; the child needs individual guidance; and a structured follow-up is needed. This reflects a child-focused encounter. Conclusions: Nurses need to adopt a holistic view, learn to see and care for the child individually, and be able to engage parents in supporting their children. To accomplish this the nurses need engagement and motivation, and must have knowledge about what constitutes a caring encounter, in order to achieve a caring child-focused encounter. © 2016 Elsevier Ltd. All rights reserved.
Corresponding author at: P.O. Box 1026, S-551 11 Jönköping, Sweden. E-mail addresses: [email protected] (S. Knutsson), [email protected] (K. Enskär), [email protected] (M. Golsäter).
http://dx.doi.org/10.1016/j.iccn.2016.09.003 0964-3397/© 2016 Elsevier Ltd. All rights reserved.
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Implications for clinical practice • Nurses on adult ICUs need to incorporate a holistic view, in order to facilitate the child (0—17 years) as a whole and be able to see the impact that everything in the child’s surroundings has on them. They need to see the individual child’s needs and adapt to their surroundings. • ICU nurses need to have knowledge about the caring actions and dimensions in healthcare that form a caring encounter, and which actions lead to an uncaring encounter, in order to achieve a caring child-focused encounter. • In order to focus more on the child, the term caring child-focused encounter needs more attention and dignity; and if the term is used more in health care, nurses might include children more and forget them less. ICU nurses need to be enlightened and aware that motivation and engagement, constituting behaviour and knowledge, are vital when encountering children as relatives and when finding a balance between pushing and motivating parents to support their children. • The findings can assist in encountering children as relatives at an adult ICU, and in developing and implementing structured interventions to support these children. A follow-up plan for caring for the child, from the point at which the parent arrives at the hospital or is assessed by ambulance personnel to when daily life starts returning to normal, may ease communication and nurture trust in the encounter.
Introduction As relatives of a severely ill or injured parent admitted to an adult ICU, children (0—17 years) might suffer. If a child is allowed to visit the ICU it might alleviate their suffering, since being present as part of a family situation creates positive feelings of involvement and wellbeing. Caring actions in health care must therefore focus on helping the child become involved in their relative’s situation (Knutsson and Bergbom, 2016). However, nurses’ and parents’ own fear of the situation and an ambition to protect and care for both the patient and the child, still contribute to the child being excluded. Other exclusion factors are: age restrictions regarding the child; environmental factors such as high-tech devices, sounds, alarms and different smells and infection risks for both child and patient (Kean, 2010; Knutsson and Bergbom, 2007a, 2007b; Vint, 2005). In order to change existing restrictions staff and parents impose on children’s involvement, health care staff describe that they need knowledge, education and experience in encountering children as relatives. They also need to improve co-operation and communication, not only with other professions but also among the caring staff (Livesay et al., 2005). Therefore, nurses need solid knowledge about what constitutes a good encounter with children as relatives at the ICU in order to be able to create one. Dieppe et al. (2002) found four key elements to be central to all clinical encounters: values, expectations and attitudes of both professionals and patients/relatives; the time spent and how it is used; trust and the context within which the encounter takes place. They assert that contexts and systems can dictate the nature of the encounter and affect both professionals and patients/relatives, and argue that individual care cannot be successful without a parallel investment in exploring the dimensions of the clinical encounter. According to Rehnsfeldt and Eriksson (2004), the clinical encounter is a point at which caring takes place. They argue that a caring relationship is the core of caring, enabling a meeting, a caring encounter, between nurse and patient/relative, and is also a prerequisite for the experience of involvement (Rehnsfeldt and Eriksson, 2004). The
ideal caring encounter seeks to alleviate suffering (Eriksson, 2001). To secure children’s rights when one of their parents has a severe physical illness, an addendum was made to Swedish legislation on 1 January 2010 (Health and Medical Services Act 1982:763 2g§, Swedish Code of Statutes, 1982; The Patient Safety Act 2010: 659 Chapter 6 § 5, Swedish Code of Statutes, 2010), stating health care professionals’ responsibility to take into account these children’s need for information, advice and support. In addition to this, familyfocused care (FFC) is intended to include the entire family and thereby secure children’s rights; a fundamental notion of FFC is that a family member’s disease and illness affects all the other family members individually (Benzein et al., 2008). However, despite this legislation and a longstanding focus on ‘‘family needs’’ in the ICU, children are still excluded (Kean, 2010). More focus on the child (Kean, 2010; Knutsson and Bergbom, 2016), and on what is needed in the encounter with the child, is vital to secure children’s rights. There is sparse research on what components are needed in the encounter with children as relatives at the ICU. Such knowledge could help alleviate suffering and promote the child’s health and wellbeing, as well as instill a feeling of security in the nurse.
Aim The aim of this study was to elucidate nurses’ experiences of what constitutes the encounter with children visiting a sick parent at an adult ICU.
Method Design This study is based on an explorative inductive qualitative design (Polit and Tantano Beck, 2012). Focus group interviews (Krueger and Casey, 2009) were used in order to explore nurses’ experiences.
Nurses’ experiences of what constitutes the encounter with children
Participants and settings Four focus group interviews, including a total of 23 nurses (four, four, seven and eight participating in the respective groups), were performed at two general ICUs in one county in southern Sweden. Convenience sampling was performed according to established criteria, often used in focus group discussions and involving the selection of participants based on the study’s aim (Krueger and Casey, 2009). The inclusion criteria were ICU nurses with experience of working at the ICU. Of the participating nurses, 20 were female and three were male. All had a specialist nursing education in intensive care, and more than two years’ experience working as an ICU nurse.
Data collection
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the participants could respond (Krueger and Casey, 2009). The interviews were audio-recorded on tape and transcribed by the respective students immediately after the interviews.
Ethical approval The study was performed according to the Swedish law (Swedish Code of Statutes (SFS), 2010) stating that ethical approval is not needed when interviewing health care professionals and the World Medical Association’s (WMA) Declaration of Helsinki (WMA, 2013). Before the interviews the participants received both verbal and written information about the study, how the data would be processed, and confidentiality and voluntariness, which entails the possibility to withdraw one’s participation at any time.
Data analysis
The researcher in charge of the project made initial contact with the selected ICUs. After approval was obtained from the head of the unit, who also chose the participants based on their interest in participation and working the day shift (making them available for interviews according to the work situation at the unit), an information letter and consent form were sent to the participants. After consent was obtained, the time and place for the interviews were determined by the participants. The focus group interviews, conducted by three nursing students on four different days in a meeting room at the ICU, lasted about an hour each. The participating nurses were given verbal information about the study at the beginning of the interviews. Two nursing students led two focus groups and one student led the other two, all under the supervision of the first author, who has experience as an ICU nurse, in research with children as relatives, and in interviewing. One student had conducted interviews previously and all three students had practiced interviewing in their scientific course. The interviews began with the open question ‘‘Tell me about your experiences in encountering children as relatives of a patient at the ICU?’’ The nurses interacted with each other during the interviews, and follow-up questions such as ‘‘How do you mean?’’ and ‘‘Tell me more’’ were asked to clarify, deepen the discussion, and develop an understanding. At the end of the interviews one of the students drafted a conclusion, to which
The transcribed interviews were analysed according to inductive content analysis, described by Elo and Kyngäs (2008), aiming to describe phenomena in conceptual form. The concepts are derived from data, and the analysis comprises three main phases: preparation, organising, and reporting. Each interview was read several times by all authors in order to capture essential features and obtain a sense of the content. Thereafter, all authors independently wrote descriptions as codes reflecting the nurses’ experiences. Then, the codes were compared and discussed in order to reach agreement. They were then renamed and grouped into subcategories based on their similarities and differences. An abstraction of the subcategories based on their similarities and differences was then applied to form generic categories. Finally, the generic categories were abstracted into one main category. The main category ‘‘a child-focused encounter’’, four generic categories and 12 subcategories were formed, describing the ICU nurses’ experiences of encountering children as relatives (Fig. 1).
Findings The findings show what constitutes the encounter with children visiting a sick parent at an adult ICU, as experienced
Nurses need to be engaged and movated Parents need to be movated Need for support Encourage the parent to see the advantage in the child Support the parents
The child needs individual guidance in encountering the sick parent Follow-up is needed Early contact Comforted and secure Show and explain Pliable to the individual child Allowing the child’s reacons Impose hope
Figure 1
Use of a structured follow-up to improve the work Cooperang and using available resources
A child – focused encounter
Enable the process
Overview of the findings’ subcategories, generic categories and main category.
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by ICU nurses (Fig. 1). One component is the engagement and motivation of the nurses. They describe various actions taken in order to enable the process and say they need help in this. The nurses describe motivating the parents as another constituent; they need to encourage parents to see the advantage in their child having contact with the sick parent and support them in focusing on their child’s needs. Another component is to give the child individual guidance; at an early juncture nurses need to contact, show and explain things based on the child’s maturity level. They need to be pliable to the child’s needs and allow them to show reactions. Offering comfort and hope is vital in this insecure situation. The last component is follow-up meetings; the nurses want the possibility to have structured follow-up meetings and to cooperate with other professionals, in order to maintain a holistic perspective and to understand how the children have experienced the encounters. These components are vital in the encounter with children as relatives at the ICU and reflect a child-focused encounter (Table 1).
Table 1
Nurses need to be engaged and motivated The prerequisites for enabling the process of involving children in the situation are knowledge and experience. The ability to enable the process of caring for these children, along with support from others, leads to engagement and motivation for the nurses. The nurses experience that their own engagement and motivation are crucial in caring for children as relatives, as they are the gatekeepers who can give the children access to the sick parent. The work with children as relatives is experienced as a stimulating and exciting task, but at the same time as a great challenge. The nurses describe that earlier research and knowledge, combined with their own experiences of encountering children as relatives, form the base of their work to enable the process of involving children in the situation. They are convinced that children need to be involved in their sick parent’s situation, in order to avoid emotional distress in the present situation as well as
Overview of the findings. Generic categories, subcategories with quotations and main category.
Generic categories
Subcategories
Main category
Nurses need to be engaged and motivated
Enable the process
A child—–focused encounter
‘‘. . .I have not worked for as long. . .’’ ‘‘. . .one can try to find help in some research.’’ Need for support ‘‘..we talk. . .and help each other’’ Parents need to be motivated
Encourage the parent to see the advantage in the child ’’....we bring up that it is good if they can come and see . . . and for their processing’’ Support the parents ‘‘parents often ask . . . do we dare to bring the kids . . . then we encourage them. . .and explains why’’
The child needs individual guidance in encountering the sick parent
Early contact ‘‘we encourage early visits.since the patient change in appearance’’ Comforted and secure ‘‘..we defuse . . . braid their hair . . . we find a way to see and feel their grief and frustration, or anger’’ Show and explain ‘‘we show pictures and machines. . .in a child´ıs way’’ Pliable to the individual child ‘‘children are different . . . you have to be sensitive’’ Allowing the child’s reactions ‘‘the play. . ... they cry. . .they get angry and we tell them that it is okey’’ Impose hope ‘‘..it is important to tell the truth. . . but still retain hope..’’
Follow-up is needed
Use of a structured follow-up to improve the work ‘‘there is a security in. . . if someone takes care of them afterwards’’ Cooperating and using available resources ‘‘. . .then you have to call someone else.. the hospital chaplain’’
Nurses’ experiences of what constitutes the encounter with children in the future. They know this is evidence-based practice, and it motivates them. Hindrances to fulfilling this assignment, although the nurses are convinced of its importance, include structural circumstances such as lack of time and personnel and feelings of insecurity. To be able to encounter children as relatives the nurses state a need for support, both emotionally and structurally. Having a children’s representative at the unit with special responsibility for the work with children as relatives is described as one type of support and as a source for achieving engagement and motivation. Various forms of discussion, reflection or debriefing with colleagues, both formal and informal, are also mentioned as a useful way to get support and thus feel more confident and engaged in the situation. The hospital church is also described as a source of support for the nurses, not only taking care of the families when the nurses lack time but also supporting the nurses when they experience their work as emotionally stressful.
Parents need to be motivated The nurses encourage and support parents in order to motivate them to involve their child/children in the sick parent’s situation and to see the advantage of doing so. By informing parents both verbally and in writing through distributed pamphlets, the nurses negotiate with them in order to encourage the parent to see the advantage in the child being allowed to visit the sick parent at the ICU. Parents may have opposing views about what is best for the child and thus not be interested in letting them be in contact with the sick parent. As a way to try to increase parents’ interest in and awareness of the child’s situation, the nurses try to explain things, based on research as well as their own knowledge and experience, to promote the health of children as relatives. The nurses described trying to convince parents of the importance of allowing the child visit the sick parent; at the same time take into account the entire family situation. The parents’ own worries about the situation may result in an inability to also take into account the children’s perspective, according to the nurses. If the parents do not feel it is a good idea to let the child see the sick parent, believing it may make the child worried, the nurse tries to support the parents by presenting different perspectives on the situation. This can involve talking to the parents about why it is important for a child to see what is really happening and to feel involved and at the same time respect the parents’ decision and continuing to support them in their situation. The nurses describe that their offering support in this way makes the parents feel more secure in the situation. When the parents have built up more confidence, the nurses resume discussing the child’s situation. In doing this, they hope the parents will see and perceive the child’s situation in a different way. The sick parent or relative may have worries about frightening the child, for instance if the disease or accident has made them look different, and therefore may not want the child to visit. In this situation as well, the nurses describe trying to support the parents to enable the child to visit.
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The child needs individual guidance in encountering the sick parent Caring actions such as making early contact, helping the child feel comforted and secure, providing information based on maturity, showing and explaining, being pliable to the individual child, allowing reactions and imposing hope, are needed in order to be able to offer individual guidance to children when they visit their sick parent. The nurses describe that every child needs individual guidance in encountering their sick parent based on their experience, developmental stage and reaction to the situation, to feel reassured in the strange environment of the ICU unit. One important aspect described by the nurses is that it is an advantage for the child to come to the ICU at an early stage. Early contact is needed, because the parent’s appearance may change and because the child’s fantasies about the situation may grow if too much time passes. If this is not possible, another action to make the situation more visible to the child is to take photos for the other parent to take home for the child to look at. The nurses describe it as important to help the child feel comforted and secure in the situation and, in order to accomplish this, undertake actions such as meeting the child in the waiting room, describing the ICU room environment, and explaining that there are other patients in the room. The nurses also accompany the child into the room, and do not leave him/her alone there. Encouraging the child to have physical contact with the sick parent and helping them express things that might feel frightening are also described by the nurses as actions taken in order to comfort the child. Most of the children are eager to learn and are reasonable and curious, which facilitates for the nurses to provide information based on the child’s maturity level and avoid misunderstandings. To make the situation more concrete and understandable for the individual child, the nurses describe how they show and explain the different equipment used in caring for the sick parent. Most children find the equipment fascinating, and the nurses describe letting them touch and experiment with it as a way to defuse the situation. Being pliable to the individual child by trying to adjust to his/her pace and successively give more information, or helping the child approach the parent, is described as an action used by the nurses. They also describe that, particularly with teenagers, they experience it as important to give space both physically and psychologically, and not be too intrusive. By letting the child decide the pace, they can gradually involve him/her in the situation more and give more, and in some cases repeated, information based on the child’s actions. In trying to adjust to the individual child’s pace, the nurses try to facilitate for them to feel in control of the situation. Showing interest in the child’s everyday life is also described as an action to support them in being in control of the situation. Allowing the child’s reactions in the situation is described by the nurses as an important action. By showing understanding and telling the child it is normal to be sad and show one’s feelings, the nurses guide them in encountering the sick parent. They believe it is essential for a nurse to be prepared to deal with different reactions from children and to remain steady and dare to face a child’s reactions. The
14 nurses also describe trying to impose hope on an individual level by being honest, being supportive, and reassuring the child that he/she will be able to manage the situation.
Follow-up is needed In order to be able to give good, qualitative care in encounters with the child, one aspect the nurses deem important is to ensure that they receive care and support, no matter what. To accomplish this, they describe a need for structured follow-ups, co-operation and the use of available resources. The nurses describe a limitation in not having structured follow-up meetings with the child to ensure that they are doing well and to determine the need for further support. They experience that a follow-up meeting is a necessary caring action in the process of encountering children as relatives. If this is omitted, they describe that the children are not encountered properly. The use of a structured follow-up to improve the work with the children/families can be one way to obtain children’s and parents’ perspectives on the care provided. Structured follow-up meetings may serve as a base for further improving the work, in order to care for and support both the child currently in focus as well as any future children as relatives on the ICU. The nurses explain that cooperating and using available resources help them ensure that the child and family get the care and support they need, even if it is beyond the nurses’ own ability and competence. The hospital church is described as one partner to collaborate with when taking care of children and families; this support is something the nurses use extensively. Counsellors in the hospital are also described as a party to collaborate with, but are seldom present at the ICU. Instead, the counsellors take over when the patient leaves the ICU for further care at another unit. The nurses describe that the health care system has an overall obligation to care for and support children as relatives, but are not sure of whether and how others take over when the parent is no longer a patient on their unit. Collaboration with health care professionals outside the hospital, such as school counsellors and school nurses, is described as one way to improve the work with children as relatives in order to ensure that they receive support when they need it after their parent has left the ICU or died.
Discussion The findings show components undertaken in the encounter with children as relatives. These components show that nurses need to make the individual child visible by motivating parents to bring them to visit and by offering the child individual guidance. The nurses need knowledge and experience in order to be able to be engaged and motivated, and they need to cooperate with other professions and perform a structured follow-up; all this in order to achieve a caring child-focused encounter.
Caring actions that constitute a caring encounter The components revealed in the findings, in light of Rehnsfeldt and Eriksson’s (2004) thoughts, are caring actions since they are taken in order to care for the child, and
S. Knutsson et al. the encounter is a caring encounter since it is a point at which caring takes place. In other words, the findings show caring actions that constitute a caring encounter with children as relatives at the ICU. The word constitute can be defined as ‘‘being a part of a whole’’, which also reflects the findings. The encounter consists of not only the actual encounter with the child, but also everything around the child that has an impact on their life and experience. All caring actions in the findings highlight this. The nurses in this study describe a holistic view when it comes to meeting with children as relatives—–encountering children. Eriksson (2002) asserts that the nurse needs to see the child as a whole, and it is essential that a human being be cared for as an entity consisting of body, soul and spirit. Holistic care prevents suffering (Eriksson, 2002), and has an impact on both the child’s and the patient’s response to the situation (McLaughlin, 1993). Halldorsdottir (1996) describes a good encounter, a caring encounter, between nurses and patients as a bridge to cross. The aspects of this caring encounter are: being open and perceptive; being genuinely concerned and morally responsible; being truly present and dedicated and having the courage to be involved appropriately as a professional nurse. These caring aspects can be compared to the findings in this study. In this study, the caring actions taken in order to make the nurses engaged and motivated are in line with Halldorsdottir’s findings, while the caring actions need to motivate parents, need to give the child individual guidance, and need a follow-up are aspects not identified by Halldorsdottir. These aspects may be valuable to add when it comes to encountering children as relatives at the ICU. The findings in this study show that the encounter is composed of several components. According to Rehnsfeldt and Eriksson (2004), it is in the encounter that caring takes place; they argue that a caring relationship is the core of caring and enables an encounter. According to Dahlberg et al. (2003), a caring relationship is characterised by respect, trust, dignity, integrity and closeness in which the nurse should be able to see, listen, empathise with and confirm. Dieppe et al. (2002) found that the expectations and attitudes of both professionals and patients/relatives, the time spent and how it is used, trust, and the context within which the encounter takes place are vital factors for a clinical encounter. All these aspects are worth taking into account when exploring ‘‘the dimensions in the encounter’’, and may help nurses in encountering children as relatives. Dieppe et al. (2002) assert that, in order to be successful in care, ‘‘dimensions’’ in the encounter need to be explored. Altogether, this shows that the encounter is multidimensional and needs to be approached with open senses. Paterson and Zderad (1988) assert that nurses have to use all their senses in order to create an authentic encounter, and this has to be learned and practiced both in nursing education during simulation and through experiences in real life when caring for patients. Halldorsdottir (1996) also describes uncaring actions such as disinterest, insensitivity, coldness and inhumanity. These actions are illustrated as a wall that causes a lack of caring connections. Eriksson (2001) asserts that ‘‘uncaring’’ entails a lack of wholeness, a lack of a holistic view. The intention of this study was not to find uncaring actions; however, nurses need to be aware that such actions will hamper the
Nurses’ experiences of what constitutes the encounter with children encounter (Dieppe et al., 2002), indicate a lack of affective caring behaviour (Wiman and Wikblad, 2004), and lead to suffering (Eriksson, 2001). Fitzpatrick et al. (1983) assert that a negative clinical encounter may lead to adversely affected health outcomes.
Make the child visible One caring action described by the nurses as important in the encounter is to offer the child individual guidance; to see the individual child. Clarke (2000) argues that it is important for nurses to recognise the individual child’s needs. However, this can be a struggle when the child is not visible at the unit (Knutsson et al., 2004; Knutsson and Bergbom, 2007a, 2007b). The findings show that nurses need to encourage and support parents in order to motivate them to involve their child/children in the sick parent’s situation and to see the advantage of this involvement. Clarke (2000) describes that if parents feel unable to support their child or do not want them to visit, it is important that nurses provide them assistance in order to enable the child’s visit. According to Clarke (2000), parents have a desire to protect and shield their child and use this as a rationale for not allowing him/her to visit. However, visiting may diminish suffering (Knutsson and Bergbom, 2016), help children cope with stress, and prevent exclusion and isolation (Clarke, 2000). Clarke (2000) asserts that parents could be encouraged by initiating discussion and sharing information regarding bringing the children to visit. The challenge is to find a balance between pushing and motivating and to see what the individual child needs.
Knowledge and experience nurture engagement and motivation The nurses in this study describe that they need knowledge and experience. Knowledge about the positive and negative impacts on children is needed; if nurses receive this, they may be more engaged and motivated to encounter children as relatives. Clarke (2000) argues that nurses should be provided with education and training in how to communicate with children based on growth and developmental theories. Hanley and Piazza (2012) have provided caregivers with a framework for age-appropriate education; the education, based on developmental stages, includes children’s understandings of illness and death. Their findings demonstrate that the intervention increased staff comfort level, was experienced as positive by patients and families, and eased fears among children and helped them cope with the situation. Kean (2010) asserts that nurses need education in listening skills, and in understanding children and their needs. Wiman and Wikblad (2004) stress that the nurses’ behaviour is essential in the encounter. The nurses’ behaviour and knowledge about how to encounter children, or, indirectly, their engagement and motivation, are vital in striking a balance between pushing and motivating parents to support their children. The findings in this study indicate that the Swedish legislation (Health and Medical Services Act 1982:763 2g§, Swedish Code of Statutes, 1982; The Patient Safety Act 2010: 659 Chapter 6 § 5, Swedish Code of Statutes, 2010) has not been sufficiently implemented and needs to receive more attention and be regarded with
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more dignity, and that there is a lack of knowledge among nurses. It takes time to change habits, but this needs to be accelerated in order to promote children’s involvement and health.
A follow-up plan will ease communication and instill trust in the encounter The nurses in the study describe that they need a structured follow-up in order to encounter the child in a caring way. Wiman and Wikblad (2004) found that Halldorsdottir’s theory of caring and uncaring encounters in nursing and health care is partly applicable in emergency care. The theory could therefore also assist in the ICU, when it comes to encountering children as relatives and for the development and implementation of structured interventions and follow-ups to support these children. Co-operation with other professions and structured follow-ups need to be organised and developed. A plan for children as relatives, from the very beginning at the point at which the parent arrives at the hospital or is picked up by an ambulance when daily life starts returning to normal, is needed and may ease communication and nurture trust in the encounter. Trust is a crucial constituent of the encounter (Dahlberg et al., 2003). When trust is present, the child will have more knowledge about what is going to happen and thereby more control over the situation, which may diminish their suffering (Knutsson and Bergbom, 2016).
Towards a caring child-focused encounter The main category in this study was a child-focused encounter. Based on the findings and the previous discussion, the caring actions found in this study could act as a platform towards forming a caring child-focused encounter. The nurses’ experiences highlighted a desire to be more focused on the child as a relative when caring for a patient with children in the family. Research (Kean, 2010; Knutsson et al., 2008; Knutsson and Bergbom, 2016) has also stated that more child focus is needed. FFC refers to when the focus is on the family’s significance for the individual person’s experience of ill health and sickness (Benzein et al., 2008). The concept ‘‘caring child-focused encounter’’ could be used within or together with FFC in order to achieve more child focus in the FFC, meaning that units could adopt a care more focused on the family, comprising a caring child-focused encounter. If the term ‘‘caring child-focused encounter’’ attains more dignity and is used more in caring, perhaps nurses will include children more and forget them less.
Study limitations With the researchers having certain assumptions and previous experience in this subject, an open mind, sensitivity and constant reflection helped ensure trustworthiness (Polit and Tantano Beck, 2012). On the other hand, the students involved had no previous experience of children as relatives. According to Polit and Tantano Beck (2012), groups of about 5—15 are preferable. In this study, two focus groups
16 contained four people each. This occurred due to a lack of time within the unit to allow nurses to attend; at the time, the ICU was over capacity with patients and had a limitation on nursing staff. These two interviews gave a great deal of rich data and generated a great deal of dialogue (Polit and Tantano Beck, 2012), since the participating nurses talked and discussed things widely. Polit and Tantano Beck (2012) argue that any group format is efficient and can generate a great deal of dialogue. Groupthink and lack of anonymity were considered and discussed in the groups. The interview setting was chosen by the participants, in order to minimise uncomfortable feelings associated with expressing or describing experiences in front of others (Polit and Tantano Beck, 2012). The analysis process is described well and in detail and links between data and results are demonstrated. All researchers have read and worked with the categorisation and quotes have been used to increase trustworthiness. In the beginning the categorisation phase felt chaotic, but moving back and forth between the data and maintaining a dialogue among the coresearchers helped support the concept production; through this, the reliability of the categories was ensured (Elo et al., 2014).
Conclusions The study demonstrates caring actions that constitute a caring encounter. Knowledge about and experience with children as relatives and how to approach them, nurture engagement and motivation. Altogether, this is vital for nurses when trying to strike a balance between pushing and motivating parents to support their children. The challenges for nurses are to make the child visible, to motivate the parents to bring him/her to visit, and to see and care for the individual child. Co-operation with other professions and a structured follow-up plan that eases communication and instills trust in the encounter need to be organised and developed. The study shows that the encounter is multidimensional and that nurses have to use all their senses to create a caring encounter to help diminish a child’s suffering. There is a need for a holistic and individual approach when encountering children as visitors. Nurses need to focus more on the child as a relative and must have knowledge about what constitutes a caring encounter in order to achieve a caring child-focused encounter. The term caring child-focused encounter needs to receive more attention and be regarded with more dignity in order to keep children from being forgotten. Intervention studies on the caring child-focused encounter, and on whether Halldorsdottir’s theory of caring and uncaring encounters is applicable in a context such as children as relatives, would be useful in encountering these children in as caring a way as possible.
Acknowledgements We wish to express our sincere gratitude to the students Åsa Johansson, Therese Isaksson och Cajsa Petersson for their contributions to the focus-groups interviews and also all the nurses at the ICUs who participated in the interviews.
S. Knutsson et al.
Funding The study has been supported by: Forte (Grant number 2013-2082) and School of Health Sciences, Jönköping University. Conflict of interest The authors have no conflict of interest to declare.
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