Managing an altered social context—Patients experiences of staying away from home while undergoing proton beam therapy

Abstract Aim To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy. Design A descriptive, qualitative cross‐sectional interview study. Methods Nineteen patients were interviewed between December 2015–August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed. Results Participants made adjustments to achieve control and well‐being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity. Conclusion It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well‐being for both patients and their relatives.

especially with new persons in a new environment (Whiting et al., 2012). Many individuals with brain tumour are stricken with functional and psychosocial consequences resulting from the diagnosis or treatment Ownsworth, 2016;Sherman et al., 2016;Simpson et al., 2015). Patients with primary brain tumour may also be in a more complex situation when travelling for treatment as a result of cognitive and behaviour symptoms. They experience many challenging symptoms that they need to manage during their treatment period, while alone and away from their family and ordinary social context.
More knowledge is needed about patients' experiences of living away while undergoing PBT in a new social context.

| Aims
The aim of this study was to explore the experience of an altered social context for patients with primary brain tumours staying away from home while undergoing PBT.

| Design
This study had a qualitative and explorative design. A secondary analysis was conducted using data collected from a previous interview study aiming to explore the process of symptom management in patients with brain tumour who received PBT .

| Setting
Patients who are referred for PBT travel to the Skandion Clinic in Uppsala from all over Sweden. There is an option for the patient to receive treatment at their home clinic with conventional radiation, even if they are recommended PBT. Many patients are unable to commute between the clinic and their homes and therefore stay in a nearby hotel during the treatment period. The treatment is given on a daily basis Monday through Friday over about 6 weeks, so the hotel stay may last 43-46 days. It is possible to bring a relative if needed. All meals are served in the residence restaurant, and there are lounges on each floor for common activities. There are no healthcare personnel. Financial compensation for patients differs, depending on the regulations in their county of residence. However, most receive compensation for at least accommodation and breakfast.

| Participants
Participants were referred for PBT from one of Sweden's seven university hospitals. The inclusion criteria were as follows: Swedish speaking, age 18 years or older, primary brain tumour diagnosis, receiving PBT and staying in a nearby hotel during the treatment period. Of the 22 participants from the original study population , three participants were excluded because they lived at home during the treatment period; therefore, 19 patients participated in the current study (Table 1).

| Data collection
The participants were strategically selected to provide a broad perspective, with selection based on age, sex and civil status. The participants were informed of the study and invited to participate by the second author (U.L) via telephone. Of the 19 participants, seven were interviewed during the treatment period and the remaining 12 were interviewed both before and after the treatment period, for a total of 31 interviews. The second author (U.L) conducted 25 of the interviews, and the remaining six interviews were conducted by an experienced oncology nurse. The interviews, which lasted from 30-70 min, were conducted at the Skandion Clinic or at two of the university hospitals between December 2015-August 2016. The interviews were recorded and transcribed verbatim by the second author (U.L). Five of the interviews were conducted by telephone, in accordance with the participants' wishes. The interviews started with an open question: "Can you please tell me about your situation based on your current illness, including how you manage the symptoms you experience?" Questions such as, "Can you tell me what it means for you to be away from home for 6 weeks?" and "How is it for you when you are away from your family during this 6 weeks?" were asked to invite participants to reflect deeper on their situation when away from home. Clarifying questions were also asked, for example, "Can you tell me more about that?"

| Analysis
The interview data were analysed using hermeneutical analysis (Austgard, 2012;Fleming, Gaidys, & Robb, 2003) to interpret and understand the experiences of an altered social context for patients with brain tumour staying away from home while undergoing PBT.
According to Gadamer (2004), new understanding emerges from openness, participation and dialogue. Through a dialectical process between the revealed experience and the researchers pre-understanding, the text can be explored, examined and re-examined. The process facilitates a "fusion of horizons" between the researchers and the text, which is essential for developing new understanding.
During a hermeneutic inquiry, there is constant movement between the parts and the whole within the text as well as between the researchers and their pre-conceptions throughout the interpretation process, with the aim of gaining new meaning and understanding (Austgard, 2012;Fleming et al., 2003;Gadamer, 2004). The last step in the hermeneutic process is the creation of new knowledge based on this revised understanding (Austgard, 2012). The first and second authors had the main responsibility of the analyse process with help from the research team (consist of one PhD student, one junior researcher and five senior researchers with experience of qualitative methods). Initially, the interviews were repeatedly read with openness to get a sense of the whole and to search for the essential meaning of the text. Then, each interview was reread to identify and gain an understanding of recurrent experiences. The research team read the text separately and together, reviewed, discussed and refined the analysis. Similar experiences were clustered into themes.
One overall theme emerged through this process, "adjustments to an altered social context." The research team re-examined the interviews with the identified theme in mind, focusing on participants' experiences and questioning their own prior understandings. To gain an increased understanding, the research team moved back and forth between looking at sections of the text and relating them to the meaning of the whole text. The analysis was reviewed, discussed and refined by the research team to ensure credibility. Throughout the analysis, every attempt was made to keep questioning open and to challenge interpretations.

| Rigour
To ensure the trustworthiness of the study, we used a self-conscious and reflective approach throughout the data collection and analysis to ensure dependability (Polit & Beck, 2012 all interviews followed by accurate transcribing. The interviewer strived to be non-judgemental and neutral to all responses from the participants, and the questions were asked in as neutral a manner as possible. Areas of disagreement required re-examination of the original data, and further discussion until agreement was reached.
Any pre-conceptions of the studied phenomenon were continuously addressed and made explicit, with the aim of being open to explore the participants' experiences.

| Ethics
In accordance with the Declaration of Helsinki, all participants received oral and written study information and provided written informed consent to participate (World Medical Association, 2013

| RE SULTS
The findings are presented with quotations from the participants, and text between brackets is authors' clarifications.

| Managing an altered social context
Hermeneutic analysis revealed a process within participants where they made several adjustments to achieve control and well-being during the treatment period. This process enables participants to better cope with their own worries and demands, their family members' worries and demands at home and their new social context. The analysis also revealed two patterns that helped participants adjust: being part of the family from a distance and seeking affinity.

| Being part of the family from a distance
Participants felt insecure while away from the family during the treatment period because the separation prevented them from receiving the support, and they were used to having from their family members. It was hard to be away from home because they needed to see that their family was doing well and managing daily tasks.
Daily contact with their family strengthened the feeling of being included and helped them to maintain normality. Separation from their children was the most burdensome and contributed to feelings of guilt-they felt they had abandoned their children but at the same time they were aware that the treatment would allow them to live together with their family in the future. Participants also felt frustrated that they could not help their partners with daily tasks, and they experienced that their partners at home expressed frustration and worries, which increased the participants' sense that they had abandoned their families and added to their sense of guilt.
Experiencing these feelings during the treatment period decreased their well-being:

So, I get a bad conscience because of the children when I am not at home together with them. And even for my wife that I cannot be at home and help her. (1121)
The family structure influenced how the participants dealt with the situation. If the participants previously had control over the practical arrangements at home and planned for the family, this tended to increase their frustration regarding losing control of the daily tasks at home. Patients who lived alone at home did not seem to experience a such loss of control of the daily tasks at home, during treatment.
Participants with families created new routines to become part of the family, such as daily Skype conversations, with some participants doing homework together with their children via Skype. The hardest part was preparing for the treatment period because participants did not know how they were going to feel or what symptoms might appear.
Both the participants and their families needed a plan to help them manage during treatment and afterwards. It was important to develop the plan together and to plan as much as possible before the treatment started. All participants looked forward to getting treatment for the brain tumour started as soon as possible: She (talking about his wife) is a very strong person; she also feels relief that it (treatment) finally should be started. We had a plan in advance how it is going to be.
The forced separation from family and being alone were the most frightening things associated with treatment away from home.

| Seeking affinity within an altered social context
It was important for participants to start new relationships in an altered social context. Even if they kept in touch with family and friends via telephone or Skype, they needed to have someone to talk with-just to feel that they were not alone was calming. A common need was to feel affinity with other patients and to have someone to talk to who understood what you were going through. It was a relief to meet other patients in a similar situation, just to confirm that the feelings and thoughts they were experiencing were normal: It is important to have social contact with others, to not be alone and it is not possible to be alone for 5 weeks, no it is not possible, you have to have someone to talk to. All of us are the same, everybody is seeking contact. (1087) Meeting patients that had already experienced a week or two of treatment and were still managing alright alone increased participants' sense that all was going to be fine. The patients helped each other get included into groups at the hotel, and hotel staff also helped participants introduce themselves to other patients. Some participants chose to be alone and did not seek affinity with other patients, and some participants found it easier than others to connect with new people. They also found that their fellow patients met different needs than their family did, because they had their own experiences of illness and treat-

| D ISCUSS I ON
Living at a hotel, often alone, during PBT was an additional challenge for patients with primary brain tumour, who were already handling a complex situation with many challenges, such as cognitive and behavioural symptoms. The participants experienced an ongoing process were they made several adjustments to cope, achieve wellbeing and manage the altered social context. This study revealed an overall theme: managing to an altered social context and two interrelated patterns: being a part of the family from a distance and seeking affinity within an altered social context.
Our findings revealed that families played an important role in providing social support and patients made adjustments to be a part of the family from a distance on a daily basis. This finding is consistent with earlier studies (Harrop et al., 2017;Payne, Jarrett, Jeffs, & Brown, 2001;Strang & Strang, 2001). Previous studies also found that close relationships with children, family or friends give meaning to life and give patents the strength to struggle through (Kvåle & Synnes, 2013;Strang & Strang, 2001). Our results showed that patients made adjustments to keep daily contact and be involved with their families (e.g. helping with homework via Skype) and maintained the ability to receive social support from and give social support to their families. This adjustments may explain the findings of earlier studies that patients living away from home during treatment experienced greater support and feelings of intimacy with their loved ones (Payne et al., 2001) and that living away does not always seems to negatively affect patients' psychological well-being (Hjörleifsdottir et al., 2007). However, participants' separation from their families gave an opportunity to focus on their own needs which sometimes raised feelings of guilt about abandoning their children or family, which has also been found in other studies where participants reported that staying away from home was a waste of time (Lilliehorn & Salander, 2018) or that they were frustrated because they knew they were needed at home (Hegney, Pearce, Rogers-Clark, Martin-McDonald, & Buikstra, 2005). This study and a previous study  showed that some patients were worry before and especially at the beginning of the treatment period. This is in line with previous studies that showed that being away from home and separated from loved ones meant additional worry for both patients and their families (Payne et al., 2001). In contrast, Fitch et al. (2003) found that being away from home could be valuable because it reduced the burden on family members. Our findings that seeing the time away from home as a relief, when they could focus on themselves, are in line with an earlier study where participants described it as a blessing because it provided a break from a burdensome life at home (Lilliehorn & Salander, 2018). Staying away from home could be experienced in both positive and negative ways; therefore, it is essential to identify the individual needs of support of each patient.
Our study revealed an ongoing process where participants made adjustments to achieve control and well-being during the treatment period to cope with the altered social context. This could be understood in the context of Albert Bandura's social cognitive theory, where a person's behaviour and the environment influence each other (Bandura, 1986

| Limitations
The present study has some limitations regarding the sample, data collection and analysis. Patients who were having difficulty adapting to the treatment and to staying away from home may have refused to participate. Furthermore, the patients were predominantly of Swedish origin and various cultural perspectives were not addressed; therefore, transferability to other contexts cannot be determined. Most of the sample was younger than 65 years, highly educated, married and living with children at home, which may not be representative participants.
This study used interview transcripts gathered for another study . The secondary analysis of the present study was performed as some data were not presented earlier; and as it turned out, the experiences of being away from home were expressed by the participants to be of importance in various degrees. However, data collection might be some limited because of this. To handle a possible limited data collection, the researcher who conducted most interviews played an active role in the present study.
Although it was not the primary focus, several follow-up questions about being away from home were asked during the interviews.

| CON CLUS ION
When patients face being away from home during several weeks of treatment, it is important they find a way to still be a part of the family and to achieve a feeling of affinity in the altered social context.
Knowledge regarding the influences of an altered social context for patients with brain tumours who are away from home while undergoing PBT is important for health professionals working at both the distant clinic and the patient's home clinic. Knowledge gained from this study can help health professionals at the home clinic to better prepare patients with necessary information for treatment at a distant clinic and help health professionals at the distant clinic to develop interventions to promote well-being for both patients and their relatives.

ACK N OWLED G EM ENTS
The authors thank the study participants for sharing their experiences and thank all employees at Skandion Clinic for support with data collection, especially Caroline Wenngren, RN. We also thank Anette Löfgren, MSc, RN, University Hospital in Lund, for support with data collection.

CO N FLI C T O F I NTE R E S T
No conflict of interest has been declared by the authors.