Intensive and Critical Care Nursing (2015) 31, 232—240

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ORIGINAL ARTICLE

Family members’ experiences of being cared for by nurses and physicians in Norwegian intensive care units: A phenomenological hermeneutical study Gro Frivold a,∗, Bjørg Dale a,b, Åshild Slettebø a a b

University of Agder, Faculty of Health and Sport Sciences, PO Box 509, 4898 Grimstad, Norway Centre for Caring Research — Southern Norway, PO Box 509, 4898 Grimstad, Norway

Accepted 29 January 2015

KEYWORDS Communication; Family members; Intensive care unit; Patient care; Relations; Phenomenology; Hermeneutics



Summary Objectives: When patients are admitted to intensive care units, families are affected. This study aimed to illuminate the meaning of being taken care of by nurses and physicians for relatives in Norwegian intensive care units. Research methodology/design: Thirteen relatives of critically ill patients treated in intensive care units in southern Norway were interviewed in autumn 2013. Interview data were analysed using a phenomenological hermeneutical method inspired by the philosopher Paul Ricoeur. Results: Two main themes emerged: being in a receiving role and being in a participating role. The receiving role implies experiences of informational and supportive care from nurses and physicians. The participating role implies relatives’ experiences of feeling included and being able to participate in caring activities and decision-making processes. Conclusion: The meaning of being a relative in ICU is experienced as being in a receiving role, and at the same time as being in a participating role. Quality in relations is described as crucial when relatives share their experiences of care by nurses and physicians in the ICU. Those who experienced informational and supportive care, and who had the ability to participate, expressed feelings of gratitude and confidence in the healthcare system. In contrast, those who did not experience such care, especially in terms of informational care expressed feelings of frustration, confusion and loss of confidence. However, patient treatment and care outweighed relatives’ own feelings. © 2015 Elsevier Ltd. All rights reserved.

Corresponding author. Tel.: +47 91896844. E-mail addresses: [email protected] (G. Frivold), [email protected] (B. Dale), [email protected] (Å. Slettebø).

http://dx.doi.org/10.1016/j.iccn.2015.01.006 0964-3397/© 2015 Elsevier Ltd. All rights reserved.

Family members’ experiences in Norwegian intensive care units

233

Implications for clinical practice • Many families are well cared for in Norwegian ICUs. The significance of caring practices should be reflected on and discussed based on evaluation and research. • Family care is skilled nursing invention that need to be integrated in the total care for the critically ill patient in ICU. The ICU staff should take relatives’ experiences into account when planning and organising for the future. This means that the family as a whole should be cared for, not just the patient and will require increased staff resources. • Relatives still experience a lack of information and support from nurses and physicians. Among other educational challenges is the need for some healthcare professionals to improve their skills concerning family crisis, inclusion of relatives and communication. • Better family care also implies physical arrangements so that families can be with the patient without interrupting the healthcare professionals in their daily routines.

Introduction The role of family members in intensive care units (ICUs) has been highlighted in both research and practice in recent years (Bailey et al., 2010; Eggenberger and Nelms, 2007). In Norway, there are no guidelines for family care, similar to American ‘family-centred care’ (Davidson et al., 2007). However, family members’ vital involvement with critically ill individuals has resulted in virtually unlimited visiting hours in Norwegian ICUs (Lind et al., 2012). These families are exposed to highly technological environments and life-threatening symptoms or potential death of loved ones. Relatives also often represent the patient in decision-making processes (Azoulay and Sprung, 2004; Moselli et al., 2006; Myhren et al., 2011). The ‘taken for granted’ quality of family members’ lives, as described in the phenomenological perspective, is at stake when experiencing critical illness (Engström and Söderberg, 2007; Toombs, 1993). Different emotional reactions, such as confusion, frustration, anxiety and guilt, can result from the shock and stress experienced by family members (Hughes et al., 2005). There has been an increasing focus on ICU patients’ family members’ vulnerability to ‘post intensive care syndrome-family’ (Baumhover and May, 2013). In addition to psychological symptoms, there are physical symptoms and social changes after ICU experiences (Samuelson and Corrigan, 2009). Caring for relatives during the ICU stay is important for their coping with unexpected events and with challenges after the patient’s return home (Cypress, 2011; Davidson et al., 2012). According to Auerbach et al. (2005), quality relationships with healthcare staff are highly valued by relatives. Good communication between healthcare staff and the family is important for preventing long-term psychological burdens on family members (Myhren et al., 2011; Schmidt and Azoulay, 2012). It is important to investigate family satisfaction in order to improve care for families in ICUs (Wall et al., 2007) and there has been some recent research on this topic (Heyland et al., 2002, 2009; Khalaila, 2013; Schwarzkopf et al., 2013; Shaw et al., 2014). Most studies are quantitative and typically performed during the ICU stay. We have insufficient knowledge of helpful solutions to ICU care needs defined specifically by relatives (Johannessen et al., 2011). In this study, this knowledge is gained through describing and interpreting the family members’ lived experiences as they remember them after having returned home for a

period of time. There has not been much previous research on relatives’ experiences in Norwegian ICUs, although they have included family members for several years. Therefore, this study illuminated the meaning of nurses’ and physicians’ care for close relatives in Norwegian intensive care units.

Methods A phenomenological hermeneutical method with individual interviews was used. This method, developed for interpreting qualitative research (Lindseth and Norberg, 2004), was inspired by the philosopher Paul Ricoeur. Consistent with Husserl’s (1982) description of the phenomenological attitude, we dispense with our ‘taken for granted’ attitude, and strive to allow the meaning of the phenomenon to appear to the mind in its meaning structure. With this subjective experience as a beginning, we look for essential characteristics of experiences to generalise. Interview narratives could be a natural and suitable method for relatives to express their care experiences, and interpretation by distancing is needed to make the meaning public (Ricoeur, 1976).

Participants and setting Thirteen close relatives of critically ill patients treated in university, regional or local level ICUs in southern Norway, who had participated in a former survey study, were interviewed (see Table 1). Closest relatives of ICU patients, a total of 261 people, were identified from hospital electronic records systems during the spring of 2013. They received a questionnaire: autumn 2013, including an invitation to participate in a follow-up interview study. The survey study, not yet published, showed variations in satisfaction among relatives that required deeper qualitative examination. Thirty relatives responded positively to this request, the participants were chosen from this group by the researchers. Data saturation guided decisions regarding the exact number of participants included in the interview study (Kvale et al., 2009). Data collection ended when the data were rich and varied enough to illuminate the phenomenon, and no new themes emerged. None of the participants refused to participate during or after the interview period. The inclusion criteria were that patients must have experienced at least a 24-hour ICU stay with 2—12 months since ICU discharge. This interval was chosen because we wanted

234 Table 1

G. Frivold et al. Demographic characteristics of the informants.

Participants

Gender/age

Patient relationship and age

Diagnosis of the patient

Hospital

Died in ICU

Length of stay ICU

Time since discharge from ICU/death in ICU until interview

A B

Man 46 Man 72

Father 67 Wife 68

University Regional

No No

8 days 7 days

13 months 10 months

C D E

Woman 53 Man 76 Woman 68

Husband 56 Wife 76 Husband 68

University Regional Regional

Yes Yes No

3 days 2 days 3 weeks

4 months 12 months 6 months

F

Man 65

Sister 70

Local

Yes

1 week

7 months

G H I J K

Woman 72 Woman 69 Woman 66 Man 43 Man 42

Husband 78 Husband 67 Daughter 26 Grandmother 98 Wife 43

Regional University University Local University

No No No Yes No

16 days 1 week 3 weeks 7 days 14 days

7 months 12 months 8 months 12 months 6 months

L M

Woman 57 Woman 71

Husband 55 Husband 76

Heart surgery Abdominal surgery Heart disease Sepsis Advanced abdominal surgery Respiratory failure Sepsis Heart surgery Lung disease Hypothermia Complicated surgery Sepsis Sepsis

University Regional

No No

5 weeks 6 weeks

4 months 3 months

the participants to have completed the acute stress period. According to Auerbach et al. (2005), symptoms of acute stress disorder occur from 4 days to 4 weeks after the trauma. The relatives had to be 18 years or older and they had to understand and speak Norwegian. The participants and their demographics are presented in Table 1.

Data collection The first author, who was a doctoral fellow and experienced intensive care nurse, conducted the interviews over three months in the autumn of 2013. Each interview lasted from 30 to 120 minutes. The participants were alone with the interviewer in a private place, except for one man who wanted his wife nearby. Prior to the interview, the first author provided verbal information about her background and the reason for the study, and asked if the participant had any questions. The interviews started with a question about relatives’ experiences, such as ‘When you are thinking back to the time in the ICU, can you remember your first impressions?’ Participants were invited to tell their stories openly, and follow-up questions were asked, e.g. ‘Can you please tell me more about this?’ or ‘Can you tell me how you felt when this happened?’ At the end of each interview, a short summary of the communication was provided, and participants confirmed or corrected the information. All interviews were audiotaped and transcribed verbatim by the first author.

Data analysis The phenomenological hermeneutical method used to analyse the interview text in this study includes three steps to

interpret the meaning of relatives’ experiences (Lindseth and Norberg, 2004). The first step is the naïve reading, where the interview text is read several times to get an overall impression. The next step is the structural analysis, where the text is divided into meaning units and condensed. The condensed meaning units are compared for similarities and differences, then subthemes and themes are created. These themes should validate the first naïve reading. In the final step, the comprehensive understanding, the text is again read as a whole and considered in relation to the themes, the study aims and the research literature. The initial coding was conducted by the first author using the ‘NVIVO’ software programme for qualitative analyses (QSR International Pty Ltd., 2012). All authors were involved in the entire analysis. The pre-understanding of the authors, which included their previous nursing experiences and their life experiences in general, contributed to the comprehensive understanding phase. The first author had been working as an intensive care nurse for several years, and the other two authors were experienced nurses and researchers. Examples of the analysis process are presented in Table 2.

Ethical approval The study was approved by the Regional Committee for Medical Research Ethics in southern Norway (Reference number: REK sør-øst A 2013/458). Permission was also obtained from the ICUs. Participants gave written informed consent before interviews were conducted, and they were verbally informed about voluntariness, confidentiality and anonymity. The study conforms to the Declaration of Helsinki (The World Medical Association, 2013). Special consideration

Family members’ experiences in Norwegian intensive care units Table 2

235

Examples of meaning units, condensation, subthemes and themes.

Meaning Units

Condensation

Subtheme

Theme

You get the messages about things, it is so and so, this is sort of where we stand, and then you feel like in a condition of shock, at least that was my feeling, lost in a way . . . and all the questions appear afterword . . . and then there is no one there to answer them . . .. They greeted us with kindness absolutely all of the time, and with information. Yes, we felt . . . what do you say . . . cared for, in the middle of everything that was difficult, we got that feeling . . .. And I experienced nurses who said, How are YOU? What can we do for YOU? I was there every day sitting bedside, and I did those things that I thought I could do, for instance to moisturise his mouth, helping him get rid of the mucus . . . and he sweated a lot, so I wiped his forehead. . .. . . . that meant everything to me. Keeping me going on, being a benefit. They asked me about his job, his education, his life, his hobbies you know, his temper . . . and I told them as best as I could, It seemed like they took it into account . . . I think that contributed to showing the patient some respect. . . No, I cannot understand this . . . what is it that they are discussing? I mean they cannot just make such decisions, I mean ‘not resuscitate’ you can’t write that without the permission from close relatives, can you? . . .. . . . we thought about it afterwards that we knew how things were, there were probably other patients waiting for an ICU place, but we were the ones important then, so even if they actually needed to throw us out as fast as possible, to make room for others, this was not an issue. So it was like, What do YOU want? . . ..

When you feel lost and shocked you are not able to absorb the message. The questions appear after some time. Then you need information. The nurses and doctors greeted us with kindness and we felt cared for. I felt that they cared about ME.

The significance of informational care

Being in a receiving role

The significance of supportive care

Being in a receiving role

I participated by helping him with small things every day. That meant everything to me. I told them about my husband so that they were able to treat him with respect.

The significance of feeling included and participating

Being in a participating role

I cannot understand what is happening when I am not included in the decision-making process. It is important to be asked to give your opinion even if you know that the professionals have the final decision.

The significance of being involved in decisionmaking processes

Being in a participating role

was given to participants who had lost loved ones during or after the ICU stay.

Findings The first stage of analysing the interview texts involved the naïve reading to obtain an overall impression. Thinking back to the ICU, relatives were most concerned with the patient care. They wanted to know that healthcare professionals had proposed the best treatment for the patient and that it was conducted respectfully. Nurses were characterised as more caring than physicians by many participants, because they spent more time with the family. Family members were typically permitted to be present in the patient’s room during the ICU stay. Although most relatives felt welcomed by the nurses and physicians and had their information and support needs met, some family members felt that they were interrupting. Others were not given information, felt

uninvolved and did not understand the decision-making processes. Next, the structural analysis was completed. Two main themes and four subthemes emerged. The main themes were ‘being in a receiving role’ and ‘being in a participating role’. ‘Being in a receiving role’ included the subthemes ‘the significance of informational care’ and ‘the significance of supportive care’. These elements appeared to be closely connected. ‘Being in a participating role’ included the subthemes ‘the significance of feeling included and participating’ and ‘the significance of being involved in decision-making processes’. The subthemes are presented in the following sections.

The significance of informational care Much of the uncertainty and worries experienced by relatives was connected to the patient’s condition and prognoses. As early as possible in the process, relatives wanted

236 to know exactly what was happening to the patient. Knowledge that their loved ones were receiving optimal care and treatment exceeded their own care needs. The need for continuous information was prominent. One wife (Participant E) described how information was shared by healthcare professionals: ‘So they were there all the time . . . I had the ability to walk in and out of the room and they explained to me all the time what the situation was like. It felt like being a part of the process . . . they were just amazing . . ..’ Several participants expected physicians to provide medical information, but described them as busy, with limited time for conversation. Comprehensibility, consistency and honesty were important characteristics of the information relatives received from staff. Many relatives had experienced conversations with physicians using jargon, which implied difficulties for relatives with understanding the message. In several cases, nurses had to explain medical information content. Relatives reported that they had contact with many healthcare professionals during their stay, mostly nurses and physicians. Thus, problems could arise if different information was provided by different caregivers. Relatives wanted to know the truth about the patient’s situation and not have information withheld to protect them. Some relatives felt there was a lack of information, as one husband (Participant K) expressed: ‘So in my case the information was of poor quality, it often was wrapped with words that I did not quite understand, [and] it was covered in a sense of not illuminating the seriousness of the situation until pretty far into the illness.’ Such experiences could make relatives feel confused, worried and frustrated and encourage loss of confidence in the healthcare system. When things went wrong in patients’ treatments, physicians’ honesty varied. Some physicians were clear about what happened and humble about the reasons. Others displayed ignorance and indirect attempts to hide information from family members. The sense that something was wrong with the patient without explanation by healthcare professionals was stressful for family members. According to the participants, information was not provided routinely. Several participants reported that they had to specifically request information. Many missed the presence of physicians and the opportunity to talk to them. Some initiatives suggested by relatives for better future information sharing included organising regular family update meetings, having one family contact person and a family summary meeting before ICU discharge.

The significance of supportive care Support from nurses and physicians was of crucial importance in coping with frightening experiences and the ability to absorb and understand the given information. According to most participants, nurses played an important role in supporting family members and providing a sense of safety. Relatives never felt abandoned or responsible for

G. Frivold et al. the patient. Some physicians also offered support to family members, through comfort, attention and respectful attitudes. As expressed by one wife (Participant C): ‘So he [the physician] was just sitting there and holding me, telling me lots of things, they were just things he said to calm me; I don’t think he said anything important, because he probably understood this would not be absorbed . . ..’ A single nurse as a contact person to whom they could always turn was highly valued. However, several participants experienced a lack of such support, felt lost in the system and grew tired of sharing feelings with many different professionals. Treatment with kindness was important. One wife (Participant G) described the need for support in this way: ‘So she [the nurse] sits down and she says, ‘How do you feel?’ And I thought, ‘Yes . . . finally somebody who asks me that question’. So I tell her that actually I am in a bad state. And then I started thinking like, ‘This is not only about the patient, it is also about the relatives . . . because you have to be the strong one all of the time, and nobody asks you, ‘‘How are you?’’’’ Family members in this study described nurses who behaved in a personalised and compassionate manner. The relatives felt that nurses wanted to know them in a personal way, and that they cared for each individual. Some participants described evenings by the bedside as a special quiet time to talk about feelings and concerns with nurses. One wife said (Participant L): ‘For me, it has been a great help to have the opportunity to sit down, during those night shifts, because then it was not as busy, then we could sit down for half an hour or an hour, talking with the different nurses.’ There were also examples of physicians who showed personal interest in the patient and family. Such attitudes were valued but also unexpected by family members. Most of them associated physicians with clinical concerns rather than personal care for relatives. When this was not the case, they felt grateful. Beyond intensive care staff, relatives described other family members as the most supportive source during the hospital stay. Several participants described that staying together as a family provided strength and comfort. Nurses played an important role in facilitating this type of support, such as arranging a place where the family could be together. When patients were terminally ill, a private room was often arranged to provide as little interruption as possible. However, all participants had experienced the ‘room for relatives’ and found it impersonal and unsuitable for more than one family at a time. At the same time that relatives felt dependent and receiving, they also needed to be included as a participating partner. This formed the theme of ‘being in a participating role’.

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The significance of feeling included and participating

The significance of feeling involved in decision-making processes

Being included in the process by ICU personnel was fundamentally important to family members. This implied being present and observing from a corner of the room while the professionals assisted the patient, as well as participating in daily care and decision making for the patient. One wife (Participant G) said:

The extent to which family members were involved in decision making varied. Those who were involved said that in a special way it made them feel respected. They did not always have the knowledge or need to contribute to the medical activities, and appreciated that physicians had responsibility for final decisions. However, enquiry and the opportunity to voice opinions were very important to family members. It could be decisions from daily treatment routines to more serious decisions concerning, for instance, limitations of life prolonging treatment. One wife had been a relative in two different ICU hospitals with staff demonstrating totally different attitudes. According to her, one ICU had completely ignored her and her family’s opinion of the best treatment for the patient, while the other was inclusive. Some relatives struggled with a lack of understanding because they had not been involved in decision-making. One mother discovered that her seriously ill 26-year-old daughter would not receive cardiopulmonary resuscitation or mechanical ventilation in the future. These decisions were made by healthcare professionals in the ICU without her involvement and then forwarded to the clinical counselling ethics committee at the hospital. Such a lack of understanding was described as painful and frustrating for family members.

‘I got a chair in a corner of the room.. . . And I could just sit there watching them working on my husband . . . I still was numbed by fear, but still I was impressed by these people, six or seven of them, they all seemed to be so confident, knowing exactly what to do . . ..’ Such experiences made the relatives feel grateful and safe, and provided increased confidence in the healthcare system. The relatives had a clear sense of feeling welcomed by the nurses and physicians. Although most relatives felt welcomed and included by the healthcare professionals, a few of them had another experience. This was communicated to them immediately in different ways. One husband (Participant B) expressed it this way: ‘I think the first thing that came into my mind was: I am just disturbing . . ..’ He noticed that the nurses and physicians talked to each other but not to him. However, most participants indicated that they were initially included and welcomed throughout the entire stay. All participants highlighted the opportunity to give information about the patient as crucial. They were concerned that details in the patient’s medical history could be important and that nurses and physicians should respond to them. Many appreciated that the nurses used them as a resource to get to know the patient. However, other relatives were not asked for their patient knowledge, which surprised them. Several participants also expressed that feeling useful was crucial. Some were active and participated in daily care routines with the patient, not only to help the patient but also for their own needs. One wife (Participant M) said this about being able to participate in the daily care of her husband: ‘. . . Yes, it meant everything actually, to me. Keeping me upright, being of benefit, and I did it for him also, you know . . ..’ In cases of acute illness and death of loved ones, relatives were not involved in practical participation. However, one wife (Participant C) felt the need to prepare her husband after his death. ‘When he is dead I am going to care for him, I am going to prepare him, . . . and no one is allowed to touch him. No one is allowed without me knowing about it’. It was then good for her to experience an acceptance of these needs and fulfilment of her wish to participate.

Comprehensive understanding and reflections This study illuminated the meaning of care by nurses and physicians for close relatives in Norwegian intensive care units. According to Burr (1997), both nurses and families have patient well-being as their common goal. However, our findings show that they have different perspectives. According to Gadamer, all understanding is prejudicial (Bleicher, 1980). Both relatives and professionals have their preunderstanding and their prejudices as the base of their understanding of being in the world. The nurses and physicians have the medical knowledge, background and ability to treat, while the family members have the personal knowledge of the patient as a person and his or her significant others. Relatives’ previous experiences and their expectations determine their care experience. Lived experiences give meaning to a person’s perception of a particular phenomenon as part of being in the world (Husserl, 1982). According to Antonovsky (1987), comprehensibility, manageability and meaningfulness are decisive aspects in a sense of coherence in life. As such, relatives’ experiences of both receiving and participating may represent a delicate balance and make them vulnerable. The significance of the receiving role appears to be related to the need to understand what is happening to the patient. Consequently, this need forces relatives into a role of dependency towards those who possess the professional knowledge. To gain comprehensibility in unfamiliar and frightening situations, the significance of informational care appears crucial, which is also outlined in other studies (Lind et al., 2011; Söderström et al., 2006; Verhaeghe et al., 2007). The significance of informational care is described by Bailey et al. (2010) as having the potential to reduce relatives’ psychological distress, improve their coping and improve their

238 ability to support the patient. Thus, strategies and solutions to improve nurses’ and physicians’ informational skills are needed. Not only the comprehensibility, but also the manageability and perception of meaningfulness in a chaotic situation depend significantly on information availability and quality. A previous Norwegian study showed high family satisfaction with ICU medical staff communication (Myhren et al., 2011). This is consistent with our study as most of the participants experienced being continuously informed and included in the communication process. However, experiences varied and staff communication skills seem to be a potential area for improvement, particularly related to the limited presence of physicians, unstructured communication strategies and consistency in the provided information. Hwang et al. (2014) suggest that a daily brief discussion between staff members before informing the family could improve information consistency and family satisfaction. Lack of information or vague information can be interpreted as lack of honesty. Other recent studies report that honest information is requested by relatives concurrent with their need to maintain hope in the situation (Apatira et al., 2008; Schenker et al., 2013). How healthcare professionals communicate the truth is therefore important. According to Schenker et al. (2013), relatives can feel conflicted between these two needs. Our findings underpin the importance of compassion and competence to communicate appropriately in human crises. Family members need to feel supported during the stay to be able to absorb the information, and feel manageability and meaningfulness. The most important support was the family as a unit, and the ability of the family to remain together during the stay appears decisive. The need for support also depends on the healthcare staff’s caring skills, and it may bring relatives into a dependent and receiving role. Quality in the relationship between family members and ICU staff seemed to be crucial, which includes nursing skills that encourage interaction. It includes a relationship based on understanding, and psychosocial actions that comfort, support and enable (Stein-Parbury, 2005). This is fundamental in nursing science, particularly when discussing patient care (Scheel, 2005, Stein-Parbury, 2005). According to McKiernan and McCarthy (2010), family care also involves skilled nursing interventions that meet relatives’ needs for information, support and care. Such interventions need to be integrated into a family-centred care philosophy. Supportive nursing actions and attitudes are significant in how relatives experience the ICU stay (Bailey et al., 2010; Blom et al., 2013). In our study, such actions and attitudes appeared proportional to relatives’ expectations, and often taken for granted. On the contrary, when the physicians were perceived as supportive, it was valued and unexpected. Although most participants were satisfied with the ICU stay, the findings reinforced a need for standardised guidelines to ensure that supportive care is not practiced randomly. The relatives also perceived that they were in a participating role. Although we still need more understanding of the meaning of being in such a role, this topic is increasingly considered when family issues are discussed in the ICU (Blom et al., 2013; Engström et al., 2011). Being in a participating role was, according to our study, related

G. Frivold et al. to the needs to be useful, integrated and respected as a resource. Although relatives are totally dependent on the professionals’ medical knowledge and their final judgement, the relatives emphasised having their own meanings considered and respected. Experiences of being important can reduce relatives’ helpless feelings (Engström et al., 2011; Mitchell et al., 2009), and increase their sense of coherence (Antonovsky, 1987). Relatives have personal knowledge about the patient that they need to share. Sometimes there are disagreements between family members and healthcare staff about the patient’s best interest. In such cases, relatives strive to understand the situation’s meaning. Hence, the meaning of care can be experienced in different ways by relatives. In all decision-making processes, from daily clinical strategies to discussions of long-term treatment goals, relatives should naturally be involved. However, they need to experience support. Relatives often feel dependent on healthcare professionals and require support enabling them to participate in the patient’s care (Blom et al., 2013). They also need informational support to be able to participate in decision-making processes. A Norwegian study concerning end-of-life decision making (Lind et al., 2011) found that families often have difficulty understanding and interpreting the information given by the ICU professionals, and that they are often excluded from participating in decision-making discussions. It appears crucial for relatives’ perception of decisionmaking involvement that they have confidence in the healthcare professionals, and trust their decisions to be in the patient’s best interests. In this sense, there was a notable difference in the satisfaction level between those relatives who felt that they were included in critical decisions, and those who did not. This difference may be related to the relatives’ experiences of comprehensibility, manageability and meaningfulness in the situation. Previous studies have found that relatives are often excluded from participation because of a range of limitations, such as environmental restrictions, the treatment of the patient, other patients or other relatives (Ågård and Lomborg, 2011; Ågård and Maindal, 2009; Frivold and Dale, 2013). This was not the case in the current study, as most of the participants were invited and included despite limitations. By practicing open visiting routines and offering practical family arrangements, the ICU staff helps relatives stay together near the patient. One explanation could be that all patients were in extremely critically ill conditions, and that they often had one-bed rooms. This made it easier to be attendant to the whole family’s needs. Our findings show that open communication among family members and nurses is decisive. Feeling poor quality in relationships with the ICU staff also leads to a feeling that one’s participation needs are not met.

Methodological reflections Findings in qualitative studies cannot be generalised. Hence, the interpretations in this study represent one of many possible sets of experiences as a relative of an ICU patient. Additionally, the interpretation will always depend on the interpreters and their pre-understanding. Another

Family members’ experiences in Norwegian intensive care units consideration is that the participants in this study were persons who wanted to share their stories, which was also dependent on their previous experiences and expectations. The whole truth of a phenomenon can never be revealed (Lindseth and Norberg, 2004). However, we made an effort to share the relatives’ experiences as accurately as possible by using their language, and also to describe the setting to help readers consider the study relevance. Given that ICUs are generally similar physically and organisationally, these findings could be relevant to the general ICU field. The different roles of the authors represented opportunities and challenges regarding proximity to the discussed phenomena. Being an intensive care nurse was part of the first author’s pre-understanding. This may represent strength as it implies knowledge of the field, but it may also have limited the ability to be open-minded in text interpretation. The other authors contributed more open-minded reflections since they were also more experienced researchers. Thus, the close teamwork during analysis validated the study. The timing of the interviews may represent both strengths and limitations. In most similar studies, the data were collected during the ICU stay, which could imply disturbing emotional elements because of the relatives’ acute stress. In our study, family members were able to reflect more constructively on their experiences and feelings. On the other hand, there could be limitations due to relatives’ memories of specific details after one year.

Conclusion This study shows that relatives in Norwegian ICUs are, typically included in the patient’s daily care. The meaning of being a relative in ICU is experienced as being in a receiving role, and at the same time as being in a participating role. Relatives are dependent on the healthcare professional’s information and support to understand and manage the situation and to be a patient resource. Participation and feeling useful and involved in the patient care help relatives develop a sense of meaningfulness. Healthcare professionals can improve their practice quality by inviting relatives into communication processes about the patient and family care. The quality of clinical activities and the staff’s competencies are crucial. The patient’s care and treatment seem more important than relatives’ own feelings about personal care. Having one’s needs met during an ICU stay as a relative may result in feelings of gratitude and confidence in the healthcare system despite traumatic memories or loss of loved ones. On the other hand, feeling needs were not met may result in feelings of frustration, confusion and loss of confidence.

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Family members' experiences of being cared for by nurses and physicians in Norwegian intensive care units: a phenomenological hermeneutical study.

When patients are admitted to intensive care units, families are affected. This study aimed to illuminate the meaning of being taken care of by nurses...
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