The lived experience of patients in protective isolation during their hospital stay for allogeneic haematopoietic stem cell transplantation

European Journal of Oncology Nursing 24 (2016) 79e86

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European Journal of Oncology Nursing journal homepage: www.elsevier.com/locate/ejon

The lived experience of patients in protective isolation during their hospital stay for allogeneic haematopoietic stem cell transplantation Valentina Biagioli a, *, Michela Piredda b, Maria Rita Mauroni c, Rosaria Alvaro a, Maria Grazia De Marinis b a b c

School of Nursing, Faculty of Medicine, Department of Biomedicine and Prevention, Tor Vergata University, Via Montpellier 1, 00133, Rome, Italy
Research Unit Nursing Science, Campus Bio-Medico di Roma University, via Alvaro del Portillo 21, 00128, Rome, Italy Haematology Unit, Fondazione Policlinico Tor Vergata, Viale Oxford 81, 00133, Rome, Italy

a r t i c l e i n f o

a b s t r a c t

Article history: Received 18 May 2016 Received in revised form 17 August 2016 Accepted 1 September 2016

Purpose: Patients undergoing allogeneic haematopoietic stem cell transplantation (HSCT) usually receive hospital care in protective isolation until full neutrophil recovery. Although the aim of protective isolation is to benefit patients' health by preventing risks of infection, it could have severe psychological implications. The aim of this study was to explore the lived experiences of protective isolation in adult patients who had been treated with allogeneic HSCT. Method: A descriptive phenomenological inquiry based on Giorgi's approach was conducted in a university hospital in Italy. Ten patients (7 female and 3 male, age range 28e66), who had undergone allogeneic HSCT to treat a haematological malignancy, were interviewed about their hospital stay in protective isolation. Results: A general meaning structure was identified as being isolated to achieve transformation. The revelatory themes were as follows: (1) the special place for transformation, (2) the experience of embodied transformation, and (3) light and shade from inside and outside. Participants experienced a transformation of themselves, of their relationships with loved ones, and of the environment. Conclusions: Since patients may live the experience of being treated with allogeneic HSCT in protective isolation as a transformation process, health-care providers should monitor the psychosocial implications of the isolation practice. © 2016 Elsevier Ltd. All rights reserved.

Keywords: Patient isolation Loneliness Social isolation Haematopoietic stem cell transplantation Phenomenology

1. Introduction During the last few decades, there has been a growing tendency toward home care for patients with cancer, in order to lower hospital costs and improve patients' quality of life. This is, however, not always feasible when there is a need for high-technology systems, surgery interventions, high-dose chemotherapy, or total parental nutrition, or there are uncontrolled symptoms (Vaughn et al., 2016). In particular, patients who undergo allogeneic haematopoietic stem cell transplantation (HSCT) to treat their haematological malignancy become pancytopenic after myelosuppressive

* Corresponding author. E-mail addresses: [email protected], [email protected] (V. Biagioli), [email protected] (M. Piredda), mariarita.mauroni@ptvonline. it (M.R. Mauroni), [email protected] (R. Alvaro), m.demarinis@unicampus. it (M.G. De Marinis). http://dx.doi.org/10.1016/j.ejon.2016.09.001 1462-3889/© 2016 Elsevier Ltd. All rights reserved.

chemotherapy and infusion of donated stem cells. In order to lower their high risk of infection, they usually receive hospital care in protective isolation until full neutrophil recovery (Saria, 2011; Vokurka et al., 2013; Yokoe et al., 2009). The extent to which the isolation is implemented depends on the neutrophil count but varies drastically across centres and countries (Bevans et al., 2009; Hicheri et al., 2013; Lee et al., 2008). However, there is growing evidence showing its limited efficacy (Mank and van der Lelie, 2003; Russell et al., 2000), together with the clinical benefits for patients if cared for at home, such as lower incidence of acute graftversus-host disease (GVHD), better nutritional status (Svahn et al., 2008), and also a higher survival rate (Bergkvist et al., 2013; Ringden et al., 2013). Thus, innovative models of outpatient care have been developed for selected transplant patients and the role of home care versus hospital care has been investigated by a growing number of studies (Cantú-Rodríguez et al., 2016; Faucher et al.,
ndez-Avile
s et al., 2006; Paul et al., 2015; Schlesinger 2012; Ferna

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et al., 2009; Solomon et al., 2010). Findings show that the majority of patients were satisfied with being cared for at home following HSCT (Bergkvist et al., 2013; Mank et al., 2015; Schulmeister et al., 2005). In light of the possibility of caring for patients at home and thus considering a hospital stay in protective isolation as optional, patients' perceptions of being isolated should be taken into account. In order to qualitatively investigate the psychosocial implications of hospital stay in isolation, the purpose of this study was to explore the lived experiences of protective isolation in adult patients who had been treated with allogeneic HSCT.

2. Background HSCT patients have to face a long-lasting and difficult care pathway, including high-dose chemotherapy, drug toxicities, and HSCT complications. In particular, patients with indication for an allogeneic HSCT are in need of an HLA-matched donor. The infusion of allogeneic stem cells may in turn involve the onset of aggressive or lethal graft-versus-host disease (GVHD). Therefore, it is crucial for them to keep faith and meaning in their treatment, which is believed to increase the chances of a successful outcome (Coolbrandt and Grypdonck, 2010). In this context, the psychosocial adjustment to health-care procedures may represent for them a way to cope not only with the disease but also with their status as patients with cancer living with uncertainty (Dunn et al., 2016). Recent studies found that the number of depressed patients increased more than twofold one (El-Jawahri et al., 2015) and two weeks after transplant in isolated hospitalisation (Tecchio et al., 2013). However, the extent to which the increase in psychological distress is related to the protective isolation, or merely to the disease and its treatment, remains unclear. Protective isolation involves a rigorous physical restriction that could result in social isolation (Lee et al., 2011), severe limitation, or loss of selfdetermination and autonomy (Vottero and Rittenmeyer, 2012). Being isolated during such a threatening time may impair patients' coping abilities by increasing feelings of powerless and lack of support. Although patients may suffer from being isolated (because they feel lonely, imprisoned, and powerless), they do have the possibility of keeping the metaphorical door to the outside world ajar, and of adapting to isolation by relating with themselves (Biagioli et al., 2016). Since many changes have occurred in communication technologies, permitting patients to keep in touch with their loved ones through virtual means, such as smartphones or Skype, patients may also adjust to isolation more easily. In light of the upcoming possibility of managing HSCT recipients at home, patients' experiences of being in protective isolation during their hospital stay for allogeneic HSCT need to be explored further to better evaluate the psychosocial implications of this procedure.

3. Methods 3.1. Design As the aim of this study was descriptive, it followed the phenomenological approach of Husserl (Streubert and Carpenter, 2011) to gain experience-based knowledge of the phenomenon of being isolated for allogeneic HSCT. Phenomenology addresses the totality of the lived experience from the participant's perspective by focussing on how objects and situations are perceived by and appear to the participant. We used Giorgi's (1997) descriptive phenomenological approach to develop knowledge capable of informing clinical practice.

3.2. Participants and setting The participants were patients with haematological malignancies requiring allogeneic HSCT. Purposive sampling of patients who had been cared for in protective isolation during their hospital stay was conducted. The adult patients were recruited from the haematological service of a university hospital in Rome. Patients younger than 18 years old, not able to speak and understand Italian, with cognitive or speech impairment, or pathological conditions that could prevent active participation in the study were excluded. The haematological ward, where the patients were isolated to undergo allogeneic HSCT, comprised eight single-bed rooms with en suite bathroom and a high-efficiency particulate air (HEPA) filtration system. The windows looked out on a corridor where visitors could come to see the patient and talk with him/her via a phone. Visitors were also allowed to enter the patient's room to visit, one at a time, for one hour after lunch (1 p.m.e2 p.m.) and one hour after dinner (7 p.m.e8 p.m.). Protective isolation implies that patients cannot get out of their hospital room during the neutropenic phase e neutrophil count below 0.5
109/L e which usually lasts for between two and six weeks. The workload of the haematological service included approximately 50 allogeneic HSCTs per year, with costs completely covered by the National Health Service. 3.3. Ethics Ethical approval was gained through the ethics committee of the university where the study was designed [protocol number 11.1 (15_TS).15 ComEt-CBM]. Participants were verbally informed about the study and were provided with an information sheet together with a consent form. It was made clear that their participation was completely voluntary and that data would be collected, analysed, and reported in the strictest confidence. Participants were also reminded that they were free to withdraw from the study at any time. Willing patients gave their signed consent to participate in the study. 3.4. Data collection During October 2015, the nurse ward manager identified as potential participants those allogeneic HSCT recipients who met the inclusion study criteria using maximum variation, based on time since HSCT, length of hospital stay, diagnosis, and type of donor. Ten patients, who were in the haematological unit for their clinical check-up, were recruited and interviewed in a private and quiet room by two nurse researchers, who were not involved in the patients' care. Participants were asked about their hospital stay in isolation using open-ended and unstructured questions, such as ‘How did you feel during your hospital stay in protective isolation?’ or ‘What did it mean for you being isolated?’ When participants seemed to have nothing further to say, the interviewers encouraged additional narration or explanation to give participants sufficient opportunities to express their views extensively. In order to facilitate participants' description of their experiences, the interviewers adopted a welcoming attitude together with sensitivity, reassurance, and cordiality. No attempt was made to guide participants' narration or opinions. The interviews were audio-recorded and faithfully transcribed verbatim. The recordings were listened to several times in order to achieve a greater meaning of the participants' experiences and to ensure the accuracy of the transcripts. 3.5. Data analysis Data were analysed following Giorgi's descriptive method

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(Giorgi, 1985, 1997). We followed four methodological steps to inductively analyse the content: (1) reading all the data to grasp a general sense of the experiences; (2) dividing the data according to a central theme to generate ‘meaning units’ and illustrating each unit with a description expressed in the participant's language; (3) generating revelatory themes by comparing and organising the meaning units according to the researchers' intuitions using nursing disciplinary epistemology (Thorne et al., 2015); (4) expressing the structure of the phenomenon by synthesising the revelatory themes into a general statement (Giorgi, 1985).

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relationship with loved ones. The theme the experience of embodied transformation included as subthemes (1) recognising the sources of problems, (2) interpreting the signs of transformation, (3) losing control on body and mind, and (4) finding the inner strength. The theme light and shade from inside and outside included as subthemes (1) receiving gifts from others, (2) being informed and motivated, (3) being grateful for the care, and (4) recognising that the darkness may prevail. The transformation that patients experienced during isolation required a special place for it to occur, involved inner changes of body and mind, and was influenced by light and shade from inside and outside.

3.6. Rigour Several strategies were used to achieve a scientific rigour of the findings of the study by ensuring credibility, confirmability, dependability, and transferability (Guba and Lincoln, 1981). In order to be alert to subtle bias, the researchers performed ‘bracketing’ before data collection by writing down and discussing their assumptions, preconceptions, and past knowledge deriving from previous studies about being isolated, which were set aside during all the research process using reflexivity. Other procedures to enhance rigour included having the interviews performed simultaneously by two researchers, having the analysis discussed within a research team, and using a decision trail to ensure auditability (Burns, 1989). 4. Results The mean duration of the interviews was 22 min (SD ¼ 9, range ¼ 10e41). The participants included 10 allogeneic HSCT patients, of whom seven were female (Table 1). The mean age was 50 (SD ¼ 15; range ¼ 28e66). Education varied from people with little formal education (e.g. primary school, n ¼ 2) to people with university degrees (n ¼ 4). Occupations included housekeepers, students, and professionals. Seven participants had a partner, two were divorced and one was single; six of them had children. All of the participants had a diagnosis of haematological malignancy (Table 1). Three participants received the stem cells from a sibling. Time since HSCT varied from a participant still in protective isolation to four people discharged more than three years previously. Their hospital stay in protective isolation lasted for an average of 44 days (SD ¼ 21, range ¼ 28e90). The content analysis yielded three themes and 11 subthemes, which describe the patients' lived experiences in protective isolation during their hospital stay for allogeneic HSCT (Table 2). An overarching theme emerged as being in isolation to achieve transformation. The theme the special place for transformation included as subthemes (1) feeling (un)safe in a limited setting, (2) waiting time alone, and (3) living the transformation of the

4.1. The special place for transformation Protective isolation was perceived as a special place for transformation, whether preferred or suffered. This place had the function of protecting participants from the risk of catching infection, but also from the demands of efforts coming from outside. Thus, many participants reported feeling safe in a limited setting. This was due to feeling ill: ‘Until I do not feel well, I prefer to stay here, it makes me feel safer’ (P9). They felt surrounded by a veil of safety and described being alone as a salvation, since they needed to overcome a hard process of transformation. ‘I don't wish to be cared after my transplant at home. It is too risky! Everything has its own place’ (P5). On the other hand, other participants became aware of several limitations both of the health-care service and their capabilities. Thus, they reported feeling unsafe in a limited setting while perceiving the isolation room as a barrier or a dangerous trap. ‘I was afraid of needing help and not being supported. I was frightened by not being able to call for assistance. I had the need to know that someone was behind the door and could hear me’ (P3). In addition, feeling safe in the isolation room was at times threatened by dysfunctions of the setting e such as the unpleasant food provision, the cold air, or the limited space to move e perceived not only as unpleasant issues but also as obstacles to healing. ‘I would like to have just rice, to resume eating. But it is not possible to order food here’ (P9). Participants reported waiting time alone during their hospital stay for allogeneic HSCT. Aloneness required patients to find a way to spend the time by themselves, such as watching TV, listening to music, surfing the Internet, reading a book, or doing crosswords. ‘The night was long because I couldn't sleep. But during the day I could spend my time watching the TV or surfing the Internet’ (P8). Patients who felt the need to look outside used to keep the roller blind up and spent the time looking out of the window. In the context of cancer, waiting is connected with the experience of uncertainty and may be even more burdensome when the isolation is perceived as a prison. ‘I was looking at the ceiling and counting the tiles. It's very bad to be confined in a room. You are sealed in

Table 1 Participants' socio-demographic and clinical characteristics. Code

Gender

Age

Education

Work status

Marital status

N children

Diagnosis

Donor

Days since HSCT

Days in isolation

P1 P2 P3 P4 P5 P6 P7 P8 P9 P10

Male Male Female Female Female Female Female Female Male Female

54 56 34 28 65 66 54 48 29 64

High school Secondary school University University Primary school Primary school High school Secondary school University University

Salesman Trader Journalist Carer Housekeeper Retired Housekeeper Employed PhD student Retired

Divorced Divorced Engaged Engaged Married Married Married Married Single Married

1 1 0 0 1 2 2 1 0 0

NHL NHL ALL ALL CML CMML AML AML CML NHL

unrelated unrelated unrelated sibling unrelated sibling unrelated unrelated unrelated sibling

1900 335 42 1460 150 2190 42 84 30 1278

30 70 48 30 33 45 31 90 36 28

Note: ALL ¼ acute lymphoblastic leukemia; AML ¼ acute myeloid leukemia; CML ¼ chronic myeloid leukemia; CMML ¼ chronic myelomonocytic leukemia; NHL ¼ nonHodgkin's lymphoma.

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Table 2 General structure with themes, subthemes, and examples of illustrative verbatim quotations. General structure

Themes

Subthemes

Verbatim quotations

Being isolated to achieve transformation

The special place for transformation

Feeling (un)safe in a limited setting Waiting time alone

‘Being in isolation is a salvation, because you could not cope being with others’ (P10).

The experience of embodied transformation

Light and shade from inside and outside

‘It is a dramatic phase. The isolation is heavy, because you are actually alone and you lack support’ (P7). Living the transformation of the ‘I couldn't see my daughter and be close to her. That hurt me most, as she was looking for relationship with loved ones me’ (P8). Recognising the sources of ‘I feel weak because being always closed in a room made me lose my muscles’ (P2). problems Interpreting the signs of ‘I had the graft-versus-host disease very soon. I arrived at the hospital and got undressed transformation to let physicians see my spots. All of them were happy but I couldn't understand why. Then I understood that it was a positive sign’ (P1). Losing control on body and ‘The pain in the back started going up from below, and as it gradually got to the top it made mind me spin and suffocate, and the temperature increased up to 41’ (P6). Finding the inner strength ‘Everyone told me that I showed a lot of strength. This is resilience!’ (P3). Receiving gifts from others ‘Now I laugh at the fact that I have female bone marrow. I always say that I'm part of the female world, without having periods!’ (P1). Being informed and motivated ‘I was very motivated to have the transplant because the doctor said to me: «Look at the queue outside, there are many young people. If I had thought this couldn't be successful, I would have asked you to choose someone else»’ (P10). Being grateful for the care ‘They are all very nice! Here they are very quick to come’ (P3). Recognising that the darkness ‘I thought that I would die. I thought that it would end like that, as I was so bad!’ (P4). may prevail

there and you cannot move or talk with anyone. It was like being imprisoned with a strict sentence’ (P2). When participants felt they were facing a hard process of transformation in a special place, they also perceived a sense of living the transformation of the relationship with loved ones. They could only meet one loved one for a few moments twice a day inside the isolation room. That was often not enough time to share love, since it was mainly used for assistance. Therefore, the easiest way to maintain visual contact with loved ones was from a window looking out on a corridor, where visitors could come to see the patient and talk via a phone. ‘So, someone could also come after hours and talk with me through the phone. But I got anxious because I couldn't talk through the phone’ (P7). Some participants reported deeply appreciating their loved ones' presence, while others felt stressed or worried. As the setting was perceived to limit contact with visitors, one participant expressed seeing no meaning in the loved ones' presence. ‘Relatives may as well remain at home. If they came to visit me, they would have to get dressed with the hospital stuff or look at me through a window. What would it be for? To do what? They could only look at me!’ (P1). However, most of them wished to have someone that could be close and provide courage. ‘The presence of someone next to me was very important: my mother, my father, my brother, my boyfriend, and my friends. I needed someone that could stand by me and also be positive. I was lucky!’ (P3). 4.2. The experience of embodied transformation Participants experienced a transformation of their body during protective isolation for HSCT. The first step was becoming aware of their corporeality: ‘I quickly realised what having a body meant. For example, the bed had assumed the shape of previous patients’ (P3). The second step was interpreting body changes and recognising the sources of problems. The transplant itself was reported as a transformation, implying a change: ‘After the transplant, I was no longer able to do the things that I used to do before’ (P5). However, the transplant was not recognised as a problem but as an opportunity for healing. On the other hand, physical complications from chemotherapy were often perceived as limiting the patient's position, movement, and activity. ‘The chemotherapy was devastating’ (P7). Infections were recognised as big threats, especially when

physicians could not identify the origin and the appropriate antibiotic. Protective isolation was considered a source of problems when it contributed to increasing patient stress, which lowered the capacity to bear even trivial symptoms. Also, constantly lying in bed was reported as worsening patients' physical well-being by increasing their stiffness and reducing their muscles. In order to avoid getting even more tired physically and psychologically, patients set health-related priorities. Giving importance to their own limitations turned out to be useful in lowering the risk of further complications that may derive from incautious behaviour. Since a transformation of the body occurred, patients reported that they were carefully interpreting the signs of transformation. The phenomenon observed was interpreted as positive if associated with healing, such as grafting and increased blood values, or it was interpreted as negative if associated with HSCT failure, such as weight loss and worsening of the physical condition. ‘I had a reaction named graft-versus-host, so I had to take cortisone. However, they say that the graft can also attack cancer cells, if there are any’ (P10). The signs of recovery were clearly explained as the raising of neutrophils, disappearance of oral mucositis, resumption of eating, reuptake of physical strength, reduction of IV nutrition, and taking pills instead of IV infusions. Both weight loss and face swelling prevented participants from recognising themselves as being the same as before, while contributing to the experience of physical transformation. In addition to physical signs, one patient reported that his inner perceptions yielded a revelatory value of his cancer relapse. ‘Before having the CT, I already knew that the disease had came back. It is something you feel inside!’ (P1). Participants also reported losing control on body and mind. This was part of the transformation process, along with experiencing symptoms such as nausea, vomiting, oral mucositis, diarrhoea, stomach ache, pain in the back, eye problems, and hair loss. In particular, gastrointestinal problems were long-lasting and prevented patients from eating, thereby leading to the need for intravenous infusions. ‘I was so bad! I always had a headache, I couldn't speak as I had no voice, I had pain in my throat. I couldn't eat and I was continuously vomiting. I had no strength, I couldn't even stand up!’ (P4). Patients also suffered from confusion, from being anxious, and from not being able to sleep in the proper manner. These experiences prevented participants from spending their time in the isolation room how they had previously planned,

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and sometimes even thinking about something different from their symptoms. ‘Well, during the first three days I said: «What can I do? I could get bored.» So, I thought: «I will use the Wi-Fi, I will look at that!» But then, it was impossible because I was completely out of my mind!’ (P10). Because being in protective isolation was perceived as a time of great difficulty, participants were required to identify a way of finding the inner strength. This way was merely subjective, but it became a necessary process in order to enhance the patient's chance of survival. Participants found it useful to remain focussed on healing, to be cautious, to make the right choice, to have confidence in their own character, to go the extra mile for their loved ones' sake since they believed it to be necessary for them, to act with determination and the will to live, to fight as heroes, to be resilient, and to pray. ‘I had to face this situation. I looked at the photo of my grandchildren and thought: «Who said that I cannot manage?»’ (P5). In addition, patients reported using their strength to protect loved ones from suffering because of their disease. ‘I told my daughter: «Love, mum is doing her best for you!» I'll climb on mirrors, and if I can remain brave, I'll do it for her’ (P8). 4.3. Light and shade from inside and outside Patients in isolation during their hospital stay for allogeneic HSCT were supported by receiving gifts from others. Loved ones, health-care providers, and even strangers appeared at times to be providing a ray of hope, courage, support, and relaxation, which helped participants in numerous situations. Visits were perceived as a gift when loved ones came from far away, were prolonged, or implied a sacrifice from the visitors, or included surprises or good news. These gifts caused a transformation in the recipient, leading to positive outcomes. ‘In the end, chatting with my relatives lowered my level of stress and loneliness, so my nausea also diminished’ (P9). Also, health professionals were mentioned as going the extra mile in order to provide reassurance. In addition, patients reported having received a huge gift from a stranger or a relative: the stem cells. ‘I was lucky. They say that my mother has given me a second life’ (P4). The negative feeling of being isolated for HSCT was mitigated by being informed and motivated. Health-care providers were often recalled as explaining the need for isolation when they were engaged in providing clinical information to patients. This helped participants to accept the isolation room as a mandatory condition. ‘I lived the isolation as normal, as something I had to do. They had warned me that I would have to be alone’ (P5). Participants were motivated to undergo the treatment with hope and were encouraged to actively fight, since physicians expected good results. Patients therefore felt chosen to achieve a clinical success. However, one patient felt frightened and overwhelmed by information, and she perceived physicians as having a defensive attitude. ‘There was strong psychological pressure at the beginning. They told me every risk that could occur to me, as standard practice. That worried me a lot!’ (P3). Participants also reported being supported by a light from outside in terms of the care received. While being in hospital for allogeneic HSCT, patients appreciated what health-care providers did for them, and expressed being grateful for the care. They recognised that physicians, nurses, and other health professionals were deeply engaged in providing high-standard care, as they were trying all of the possibilities for treatment, were showing advanced competency, and were communicating with great humanity. ‘The hospital staff is great: physicians, nurses, assistants, everyone! They are not only competent but also people who can make you feel at home’ (P9). In particular, nurses were perceived as sweet friends, who helped patients not to feel oppressed but rather reassured by

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having an accomplice. ‘Nurses are very good! That is a job based on humanity. When I asked a favour, they always did it for me. If they can help me, they do it because they understand the problems’ (P2). Consequently, participants felt cared for with patience and availability. They perceived nurses as precious people with a greater ability to understand problems than that of ordinary people, who are likely to speak without deep knowledge about transplants. Although patients were grateful for the care and support received from others, while being well informed and motivated, they continued to recognise that the darkness may prevail, in terms of negative outcomes, complications, untreatable symptoms, rehospitalisation, or death. Comparison with other patients contributed to making them realise that death was a possible outcome: ‘Lethal infections can occur. Two young people passed away: one with pneumonia and the other with meningitis’ (P10). A participant reported that other patients' bad experiences helped her effectively cope with her clinical condition through a positive appraisal of that. ‘I overcame it well, because I started with the idea that it would have gone bad, so I was under no illusions’ (P6). Since participants felt dependent on blood and cell infusion, which may be impossible if people are insensitive, they were worried about the lack of information about transplants and blood donations from many people in the country. In addition, patients were afraid that their disease could negatively affect their loved ones, especially children. In one extreme case, a young participant was devastated because she had a spontaneous abortion after her cancer diagnosis: ‘I spent my time in isolation crying because I thought about my abortion following diagnosis’ (P4). 5. Discussion This phenomenological study showed that patients undergoing allogeneic HSCT experienced their hospital stay in protective isolation as a transformation process involving relationships with themselves, with their loved ones, and with the environment. The experience of embodied transformation included losses, changes, and maturations both at physical and psychosocial level. For example, the growth of blood cells was regarded as a measure of the patient's engraftment post-transplant and thus associated with healing. Participants engaged in recognising the sources of problems and in interpreting the signs of transformation but often lost control on their body and mind. The physical and psychosocial consequences of treatments implied suffering, which required a positive and mindful attitude to find strength, leading to an embodied transformation. Patients undergoing allogeneic transplant were found to show a deterioration in their quality of life, with a peak one month post-transplant (Cohen et al., 2012), and this might be due to the hard transformation process they were involved in. The experience of transformation did not only involve the patient's inner world, but also had non-trivial implications for their relationships with loved ones. Participants expressed concerns for their family members who had to endure both physical and emotional burden, which is likely to have an impact on their wellbeing by acting as a stressor. This was emphasised by a recent study showing that family members caring for a relative in hospital had a significant decline in vitality, social and emotional functioning, together with increased depression (El-Jawahri et al., 2015). If family members lose their strength over time, a deterioration of social/family well-being may result for patients (Kisch et al., 2012), together with hindered relationships (Polomeni et al., 2016). The relationships with loved ones were also affected by a change in role functioning, since family members moved outside existing roles to provide instrumental and psychological support, albeit limited in time and space. This is in line with the study by Sabo et al. (2013), who found that family members of HSCT patients live altered

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relationships while experiencing feelings of isolation in their turn. These feelings of isolation may be worsened by the protective measures, which are likely to limit the carers' role in terms of patient advocacy and contribute to increasing their burden. However, receiving psychosocial and physical support is likely to positively affect relationships with loved ones, who may also experience the feeling that the treatment has brought them closer together (Polomeni et al., 2016). In particular, those patients with a sibling as donor were found to perceive gratitude, dependency, and responsibility towards the sibling, with a consequentially strengthened relationship (Kisch et al., 2014). Overall, patients may experience light and shade from inside and outside. In particular, the outside world was mainly perceived as a source of support, in line with other studies (Jones and Chapman, 2000; Niederbacher et al., 2012; Thain and Gibbon, 1996). Several researchers showed that positive social support is useful for relieving stress (Jacobsen et al., 2002; Rini et al., 2011), depression (Kettmann and Altmaier, 2008; Syrjala et al., 2004), and negative treatment outcomes (Beattie et al., 2013). It is worth noting that the support provided by health-care providers was essential for the participants. Those oncology nurses who have a positive and human connecting attitude are likely to help patients cope better with their transformation (Cohen et al., 2001). In addition, greater support can be provided by enhancing patients' self-efficacy, as a low self-efficacy has been associated with poor general health among long-term survivors (Bergkvist et al., 2015). The isolation room was perceived as the special place for transformation where participants were required to stay to achieve healing. The isolation implied separation from an outside world versus an inside world where lived time is qualitatively characterised (Minkowski, 1970). This separation was experienced subjectively as time for oneself (Lee et al., 2011; Vottero and Rittenmeyer, 2012) or loneliness (Xuereb and Dunlop, 2003; Zamanzadeh et al., 2013), according to how much the patient felt good alone or missed human contact. In particular, the windows between the isolation room and the corridor played a symbolic role in the extent of the social support needed by the patient. Loneliness is recognised as an important concern following a cancer diagnosis (Deckx et al., 2014) and it is increased when patients do not feel understood and feel disconnected from others (Rosedale, 2009; Stephens, 2005) or have negative thoughts about their social situation (Adams et al., 2016). The way patients used their inner strengths to cope with being alone was crucial. Since effective coping was shown to be related to the ability to give meaning to the disease (Papadopoulou et al., 2016), as well as to the isolation (Farsi et al., 2012), nurses should promote meaning-making and mental preparation among patients. In line with Campbell (1999), being isolated in a hospital room was perceived as an obligation. Therefore being cared for at home following an allogeneic HSCT was believed to be impossible or unsafe by participants. This is contrary to previous studies investigating satisfaction with outpatient programmes (Bergkvist et al., 2013; Mank et al., 2015; Schulmeister et al., 2005) and it seems unsupported by the exposure to multidrug-resistant organisms in hospital rather than at home (Cantú-Rodríguez et al., 2016; Faucher
ndez-Avile
s et al., 2006; Paul et al., 2015; et al., 2012; Ferna Schlesinger et al., 2009; Solomon et al., 2010). Participants felt secure or insecure, depending on their appraisal of aloneness. The perception of safety in relation to being hospitalised in a single bedroom has previously been described as likely to enhance feelings of homeliness and privacy, but also to frighten patients and precipitate their loneliness because of greater difficulty in getting help (Persson et al., 2015). In addition, the preference for hospital care, despite the isolation, may be explained by the support received from health professionals as well as the information

provided. When patients feel safe ‘in the bubble’ they may also experience a difficult transition to discharge (Dunn et al., 2016). Therefore, transplant patients would benefit from being informed about how to reduce the risk of infection at home and self-monitor the signs in a way they can understand (Cohen et al., 2013) without feeling overwhelmed. 6. Conclusions This study has focussed on hospital stay in isolation for allogeneic HSCT as a transformation process aimed at achieving healing. Knowledge of this experience can be used to further refine the level of implementation of protective procedures, as well as the content and timing of educational and supportive interventions for patients undergoing HSCT. Since the protective measures may have psychosocial implications for patients, the relationships with oncology nurses are even more important in the context of being alone in the isolation room. Thus, nurses should relate to patients in a sensitive manner and address their emotional and social loneliness. Nurses may help isolated patients normalise their experiences and find positive explanations for social constraints. Also, improving patients' self-efficacy can be an effective nursing intervention. Since HSCT survival may improve with better social support, HSCT centres should provide patients and their families with supportive psychosocial services. In addition, the use of technology may help both home care through telemonitoring and hospital care through virtual connection between patients and families. Future research should evaluate the effectiveness of nursing interventions targeted to mitigate loneliness in isolated patients. 7. Limitations The limitations of the study include the small sample size and the inclusion of participants only from one Italian institution. The level of implementation of protective procedures in the haematological ward where the study was conducted might also have had an impact on the study findings. Therefore, findings cannot be generalised to the whole population of HSCT patients. Unfortunately, many participants were no longer available to validate the findings, thus we did not practice member checking to ensure that participants agreed with the themes identified by the researchers. Another limitation was the cross-sectional design, which prevented researchers from fully capturing changes in perceptions of isolation during the hospital stay and after discharge. Although the retrospective recall may have interfered with the accuracy of the participants' narrations, all patients seemed to remember their hospital stay as a crucial time. Declaration of conflicting interests The authors declared no funding or potential conflicts of interest with respect to the research, authorship, and/or publication of this article. References Adams, R.N., Mosher, C.E., Abonour, R., Robertson, M.J., Champion, V.L., Kroenke, K., 2016. Cognitive and situational precipitants of loneliness among patients with cancer: a qualitative analysis. Oncol. Nurs. Forum 43 (2), 156e163. http:// dx.doi.org/10.1188/16.OnF.156-163. Beattie, S., Lebel, S., Tay, J., 2013. The influence of social support on hematopoietic stem cell transplantation survival: a systematic review of literature. PLoS One 8 (4), e61586. http://dx.doi.org/10.1371/journal.pone.0061586. Bergkvist, K., Larsen, J., Johansson, U.-B., Mattsson, J., Svahn, B.-M., 2013. Hospital care or home care after allogeneic hematopoietic stem cell transplantation e patients' experiences of care and support. Eur. J. Oncol. Nurs. 17 (4), 389e395. http://dx.doi.org/10.1016/j.ejon.2012.12.004.

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