Ethical dilemmas experienced by spouses of a partner with brain tumour

Abstract

Background:

Caring for a partner with primary malignant brain tumour can be a dramatic life-changing event. Primary malignant brain tumour is known to give poor life expectancy and severe neurological and cognitive symptoms, such as changed behaviour and personality, which demand greater caring responsibilities from spouses.

Aim:

The aim of the study is to explore ethical dilemmas spouses experience in the everyday care of a partner in treatment for primary malignant brain tumour.

Research design, participants and research context:

A phenomenological and hermeneutic qualitative descriptive design was adopted as a method for collecting and analysing data. Ten spouses were interviewed twice using an in-depth, semi-structured interview guide. The interviews took place at the spouses’ homes or at the hospital.

Ethical consideration:

Ethical matters were considered throughout the research process. Permission from The National Committee on Health Research Ethics and the Danish Data Protection Agency was obtained.

Findings:

The analysis showed that the spouses perceived daily ethical dilemmas in caring for a partner with primary malignant brain tumour. Their life as well as their partner’s life had changed considerably. The main theme that emerged therefore was ‘oscillating in a changing relationship’. This theme was further elaborated in three subthemes that in more detail demonstrated the dilemmas: ‘doing the right thing in unpredictable daily situations’; ‘torn between patience and guilt’; and ‘living in a time of uncertainty, hope and despair’.

Conclusion:

Caring for a partner with changed behaviour and personality due to primary malignant brain tumour may involve exhausting ethical caring dilemmas. Spouses’ married life may change to a semi-professional asymmetrical relationship, which is challenged by the oscillation between acting responsibly for their partners’ well-being and caring dilemmas with no answer for what the right thing to do is. Mixed feelings of right and wrong, patience and guilt, hope and despair seem to be spousal companions through their partners’ progressing illness.

Keywords

Caring dilemmas changed caring relationship ethics malignant brain tumour qualitative research spouses

Introduction

Primary malignant brain tumour (PMBT) is associated with a poor prognosis and an average life expectancy of 12–15 months.¹ The treatment regime is usually a combination of surgery followed by outpatient radiotherapy and chemotherapy² taking 9–10 months.³ The treatment strives to achieve progression-free survival and maintaining or increasing patient’s life quality.⁴ Depending upon tumour location and treatment side-effects, patients may suffer from both oncology-related side-effects – impaired appetite, nausea, vomiting, and fatigue – and various neurological and cognitive deficits – concentration, attention, memory, intellect and functional impairments, seizures,^5,6 and changed behaviour and personality.^7
–9 At the time of diagnosis, about 95% of the patients experienced cognitive, physical, social or psychological problems.¹⁰ Compared to other cancer types, the unique symptoms of PBMT contribute to patients having greater need for help and support,¹¹ and their relatives experience a higher care burden.¹²

The illness process is described by relatives as a time with rapid changes.¹³ Within a short timeframe, relatives need to adapt to new caring roles and responsibilities.^8,13
–15 Frequently reported caregiving tasks are assisting with basic activities of daily living functions, administering medication, organizing and attending hospital appointments, providing emotional and social support and managing behavioural changes.^13

–17 Due to declined cognitive skills and decision making ability, relatives are challenged to solve and make decisions regarding the patients’ daily activities, caring tasks and treatment process involving their life quality and lifespan.^13,14,17,18 In addition, the spouses become responsible for the household, family and finances,^14
–16 which contributes a sense of total responsibility¹⁷ and a feeling of being ‘sandwiched in’ between time-consuming caregiving tasks, childcare, aging parents and work.^16,17 A longitudinal questionnaire study of relatives caring for a patient with PMBT demonstrated prominent needs around managing the patients’ behaviour and adjusting to changed personality, which both increased over time.¹⁹ These results are supported by earlier studies. However, the emergence of the caring issues as burdensome needs more attention.^20
–22

The care burden, especially involving the patients’ neurological and cognitive deficits, affect relatives’ life quality and health. Risk of stress, depression and anxiety are documented among relatives of a person with PMBT.^21

–24 Comorbidity may increase over time,^23,24 and is prevalent in female caregivers.²⁴ A recent study predicted that the declined mental health of relatives caring for a patient with PMBT influences their ability to provide care and the patients’ well-being through the disease.²⁵

The study is a part of a comprehensive study of spouses’ experiences of providing care to a partner with PMBT. To develop a deeper understanding of the complex situation with which spouses are challenged, this study focuses on their experiences of ethical caring dilemmas.

Aim

The aim is to explore ethical dilemmas that spouses experience in the everyday care of a partner in treatment for PMBT.

Method

Design and settings

For the purpose of this study, a qualitative descriptive design was chosen using Kvale and Brinkmann’s semi-structured research interview as a method for collecting and analysing data. The study was inspired by the phenomenological interest about how spouses experienced their daily living and by the hermeneutic interpretative understanding of the meaning.^26,27

The setting was an oncology ward at a university hospital in Denmark. The patients were treated with radiotherapy and chemotherapy after neurosurgical resection. Spouses often drove their partner to the hospital which allowed for recruitment of participants to this study.

Participants

The participants were identified by the criteria that they were living with a partner in treatment for PMBT and supporting them with everyday living. To ensure voluntary participation, nurses working at the ward contacted the spouses they found matching the criteria. Ten spouses responded: three men and seven women. Eight were married before the illness; two got married during the illness. The spouses’ age ranged from 36 to 76 years. Two couples had young children or teenagers living at home, eight had grown-up children living with their family. At the first interview, one partner received practical help from public homecare due to immobility. At the second interview, one couple was supported by a palliative care team due to cognitive decline. The rest were cared for entirely by the spouses. Between the first and the second interview, five partners had died receiving homecare and palliative care at the end-of-life stage. This article emphasizes spouses’ experiences of ethical caring dilemmas before the end-of-life stage.

Data collection

The spouses were given the opportunity to be interviewed at their homes or in a private office at the hospital. According to the spouses’ wishes, 14 interviews were at the spouses’ homes and 6 at the hospital. Two spouses did not have the opportunity to be interviewed alone and had their partner present; however, their presence did not affect the interview quality.

To obtain in-depth descriptions of spouses’ experiences, repeated interviews were planned. Due to the 12- to 15-month life expectancy, the first interview took place while the partner was undergoing therapeutic oncology treatment, and the second interview 1 year later between March 2015 and September 2016. A semi-structured interview guide was followed with preliminary questions formulated in conversational language, facilitating open, spontaneous and varied descriptions. The first interview started with asking: ‘Please tell me about how you experience your partner’s illness’. The second interview started with ‘Looking back since we last met, please tell me how you and your partner’s situation has changed’. For the five whose partner had died, ‘Looking back, please tell me what you remember was especially difficult when caring for your partner’. All questions allowed the opportunity to ask for more specific and deeper understandings of their individual experiences. The spouses described care situations they found challenging and where it was difficult to be a spouse. Due to the spouses’ vulnerable situation, the interviewer strived to create a caring and relaxed atmosphere with a conscious awareness that the topics being talked about could be uncomfortable.²⁸ The spouses were, at times, upset and tearful. The interviewer allowed time during the interview for participants to compose themselves. In response to a question, all spouses expressed comfort during the interview. At the end of the interview, they expressed feelings of relief and satisfaction of telling someone their experiences, with the hope that it could help other people in similar situations. The average time of the interviews was 1 hr.

Using a hermeneutic approach when performing interviews required an openness towards unexpected matters. The interviewer (the first author (S.R.F)) strived to be receptive and sensitive about that which was and was not said, and was critical in relation to her own prejudices. Each interview was completed with the question: ‘Is there anything else you would like to add’.²⁶

Ethical considerations

Ethical matters were considered throughout the process²⁶ and followed the Ethical Guidelines of Northern Nurses’ Federation.²⁹ Information meetings were held with ward leaders and nurses about the aim and the inclusion criteria. The spouses were given verbal and written information about the study. Before each interview, a written consent was signed with a guarantee of confidentiality for the information given during interviewing. For ethical reasons, the partner also had the right to agree to the interview and were given the possibility to sign or give oral consent, if they were in a condition to do so. The project was reported to The National Committee on Health Research Ethics³⁰ and the Danish Data Protection Agency³¹ (nr. 1-16-02-267-14).

Data analysis

Working with the hermeneutic spiral as a process of understanding required an awareness of the interpretivist preunderstanding. Throughout the analysis, we considered and discussed internally our preunderstanding as an oncology clinical nurse and as experienced nurses and phenomenological researchers, we used our horizon of knowledge as a foundation to understanding the data. We were consistently aware of keeping our preunderstanding in play with an open and scrutinizing approach for occurrences in the data new to us. Through discussions, we verified views we found productive and adjusted and revised our understanding until we found no other meaningful interpretive possibilities to be reached.²⁷

Data were organized and analysed with a stepwise text reduction guide ‘Condensation of meaning’. The dialogue from the interviews continued in the analysis with discussions of the questions, ‘what is said and what has been spoken about’. First, we read through all interviews to get an overall impression of the data. Second, units of meanings were formed. Third, the units were organized into themes. Finally, central themes were identified by questioning the units and how they answered the study purpose.^26,27

Findings

We found that the daily life of the spouse of a partner with PMBT was experienced as a subtle oscillation. The partners’ severely changed behaviour and personality meant that the spouses were constantly on their toes. Often mentioned changes were mood fluctuation, anger, hot temperedness, stubbornness and irritability.

The care was characterized as, on one hand, wanting to do the good and right thing for the partner, and on the other hand, the partner’s changed behaviour and personality making it difficult to do the good and the right thing. Helping the partner with daily life became a struggle. With time, the partner needed more help and support, which contributed to frustration and despair. The spouses were in a dilemma of giving up and holding on. They wanted to be patient with their partners’ changed way-of-being, but the changes were exhausting to keep facing, and the spouses became impatient. The spouses’ experiences of daily dilemmas in the care are captured in one main theme: ‘oscillating in a changing relationship’ which is elaborated in three subthemes: ‘doing the right thing in unpredictable daily situations’, ‘torn between patience and guilt’ and ‘living in a time of uncertainty, hope and despair’.

Doing the right thing in unpredictable daily situations

Doing the right thing in unpredictable daily situations refers to a feeling of responsibility for helping their partner to live the most normal and worthwhile life as possible. The spouses expressed a great compassion on behalf of the devastating life situation and severe symptoms that their partners were living with. However, the spouses were in a dilemma of wanting to support their partner to maintain self-determination within their position, roles and values that characterized them before the illness and that they had changed with the illness:

He is a lot more hot-headed than he was before, and I see that as a problem for our children. How do I best tackle this without undermining his authority over the boys. I need to keep a good tone and not fall out with him whilst still ensuring that they are not being told off unfairly. It is a daily struggle.

The spouses were oscillating in a daily battle. On the one hand, they wanted to show their partner respect as an individual authoritative person, on the other hand they found it difficult to manage the partners’ changes without the partner feeling undermined.

The partners’ unpredictable way-of-being made the spouses more vigilant in how they acted around and talked to their partner. Having a normal mutual conversation with the partner of what was right or wrong became difficult. Spouses experienced having to react to an inappropriate answer or comments and participating in what felt like empty discussions which contributed to conflicting dilemmas:

Is it your answer or my answer that’s correct, he simply cannot cope with this, so he ends up being categorical. So, the nuances in the conversation, can we do this or what if we do that, is gone, not 100 %, but in many situations.

Doing the right thing in unpredictable daily situations also refers to a responsibility for making their partner’s life work on a daily basis. When the partner showed signs of forgetting everyday activities and struggled to manage and structure a normal day, spouses felt responsible to take control of planning the day. However, they were often in a dilemma where the partner wanted to be involved, but did not have the capability, which was expressed with irritability:

I have to say that when we are finished here, then we do this and afterwards we do that, and then sometimes he feels that he hasn’t been advised. Which he actually hasn’t, because he cannot cope with it, and afterwards he keeps going on and on about it.

Feeling responsible for making their partners’ lives work on a daily basis also refers to helping their partner with practical daily activities such as structuring a shower, getting dressed, serving food and taking medication. Spouses felt challenged on the partners’ lack of self-awareness of their own needs which created dilemmas. They were often trapped in situations where the partner needed help but refused it. The spouses were oscillating between guiding and supporting their partner through daily activities, at the same time being careful not taking over an activity which could cause tensions or conflicts:

One has to be careful all the time. I have to be careful what I say or do. Should I do anything at all…or how much should I help and how much should I not help. It can be too much when I suddenly want to give her something, it can be irritating, it’s like walking on a tightrope.

The spouses felt despair between making decisions on their partners’ behalf when their partner needed help and the partners’ irritability when help was given.

Torn between patience and guilt

Torn between patience and guilt refers to conflicting feelings of struggling to stay patient with their partners’ changed behaviour and personality and guilt of getting impatient with them. With time and progression of the disease, the partners’ changes conflicted with too much of their earlier life and common values. It became difficult to keep accepting and facing situations where the partners’ changed behaviour caused problem dilemmas. The spouses were in a dilemma of feeling torn and greatly distressed between wanting to show understanding for the partners’ illness and remaining tolerant to their changed behaviour and personality:

It is hard, well I think it is, because one always feels torn. I know very well that it isn’t him in principle that is speaking, and he know this in a way, as well. However, it doesn’t really change the situation.

Some spouses expressed that always being vigilant and careful around their partners’ mood fluctuations contributed over time to a feeling of yielding to an unfair partner. It felt wrong to do everything for the partner through the day, only to be met with irritability and in some cases abuse.

In these situations, spouses found themselves running out of patience and arguing with their partner though they knew it was hopeless. Spouses were oscillating between being exhausted by not feeling capable to cope with the partners’ changes and the accompanying caring responsibility and guilt of not living up to their own expectation of being strong to support their partner. Spouses expressed guilt of letting go of the responsibility, and letting their own frustration and anger affect their partner:

There are no places to unburden oneself. There’s nothing she can do, I can’t shout at the illness, I really can’t, but sometimes I do anyway. We have had times when we argued and this is completely unforgiveable of me that I do it. Afterwards I regret it and just think why can’t I just shut up, no, no, no.

Living in a time of uncertainty, hope and despair

Living in a time of uncertainty refers to a conflicting feeling between hope and despair on how the partners’ future life will develop. Most of the interviews reflect a concern on how to keep living with the partner. It was often mentioned that the partner was not the person they married. Living with a changed partner, experiencing the partner’s dependency for help and support, and not knowing what you were up against was frightening:

It is the unknown, because we know well that it will not go on forever, it cannot, but on the other hand, it can also be something that drags on, it can take a long time and be very difficult.

The partners’ treatment regime and discussions of experimental treatment possibilities were mentioned with hope and despair. Hope as an expression of extension of their partners’ life, giving more time together; despair as expression of not managing a much longer life with the partners’ problems and unpredictable behaviours:

I have also had that thought ‘yes, but what if the medicine works’, as in, what if he gets several more years. If a miracle did happen, then we need to bring this problem to a head in one or another way. There is nothing that will change back again.

The exhaustion of the partners’ changes and care needs became a worry of keeping up with the care for the partner. Spouses questioned if their partner would be better off in the care of professional caregivers. These thoughts were followed by a conflicting moral dilemma: knowing their partner would dislike being cared for by homecare service or being in a nursing home and letting their partner down if they decided to let others undertake the care:

I have sometimes thought, there could be some others that could do better than me. But I don’t think he would be happy. I think he would prefer to be at home. Once in a while, you think that you can do better, but when you are so affected by it yourself, it can be very hard.

Some spouses mentioned the illness time horizon as an anchor to cope with difficult caring situations. The exhaustion they felt was alleviated with the knowledge that the situation would stop one day. However, spouses were in a dilemma in what two spouses described as forbidden thoughts. The spouses did not feel happy on their partners’ behalf when the scans showed stability in their illness, or the partner showed signs of improvement. The partners’ changes then became more prominent, contributing to more unpredictable caring situations to deal with.

Discussion

The findings illustrated that spouses found themselves oscillating in a changing relationship. The oscillation was related to the partners’ changed behaviour and personality which caused several ethical dilemmas in the care. Dilemmas were experienced within the everyday caring responsibilities, and their own strength of patience for giving care and to an uncertain future in a new caring relationship.

Doing the right thing in unpredictable daily situations

Doing the right thing refers to spouses’ wanting to help and support their partner through the illness and treatment process. It was a natural desire for them. Martinsen sees this desire as an intimate symmetrical relationship based on a mutual emotional bond where you are each other’s life companion.³²

However, this increasing spousal caring responsibility, especially in relation to their partners’ unpredictable behaviour and changed personality, ostensibly turned the symmetric relationship towards a semi-professional and patient caring relationship. In the literature, this move is considered to be an asymmetrical power relationship.^33,34 With other words, the symmetry is broken and the caregivers (in this study the spouses) have the daily control; they are responsible for managing the ill partners’ everyday life, their new disposition and growing vulnerability.

Oscillating in this new semi-asymmetrical professional relationship involved worries and insecurity of not knowing how to judge and handle caring situations. Spouses were often on their own with considerations of what was the right thing to do, to help and support their partner in the best way. The unpredictable daily situations with the partners’ changes made it difficult to carry out good and ethical care. On the one hand, spouses felt obligated to take control of caring situations when their partner did not show the ability to act towards their own good health. On the other hand, spouses felt emotionally exhausted when the partner responded with irritability and abuse to the care given.

The challenge of doing the right thing within the semi-asymmetrical professional relationship is seen in Delmar’s study of nurses’ involvement, paternalism and overprotectiveness in the asymmetrical nurse–patient relationship.³³ Paternalism occurs when the caregiver (in this study the spouse) takes up the whole caring responsibility, not leaving room for the partners to voice what is good or bad. The spouses did what they considered best for the partner. The opposite is sentimental overprotectiveness, which occurs when spouses’ emotions become involved in the relationship to such an extent that the attention on the partners’ needs takes second place in relation to the spouses’ own concerns, often an unconscious and unintentional fundamental condition of the situation.³³

The spouses were oscillating between acting paternally and being sentimentally overprotective in their desire to act as morally responsible life companions within the new semi-professional caring relationship. This challenge is the essence of how to act good and wisely within caring philosophy; there is no concrete instruction to follow, only an embedded moral understanding of taking the challenge up in the relationship and acting as responsibly as possible.^33
–35

A challenge we likewise found important to argue for was the difference between a professional–patient caring relationship and a semi-professional spouse–partner caring relationship. Even though the spouses were aware of the change of the caring relationship to their partners, we would argue that the symmetric marital relationship will always be present as an underlying obligation for taking on the care responsibilities for the sick partner. Spouses are oscillating in a semi-professional relationship; feeling marital moral obligation to care for an ill and changed partner.

Patience and guilt

We found that when oscillating within the semi-professional relationship, patience and guilt are likely to occur as a natural condition. Patience and guilt refer to feeling torn between good intentions showing patience as a loyal supporting life companion and guilt of being impatient with the partners’ changed behaviour and personality. Similar to Ownsworth and colleagues study³⁶ of relationship strain between spouses and their partner with PMBT, the findings in the present study showed that in particular it was difficult to show patience to the partners’ irritability, anger and aggressiveness. At times, such matters contributed to relationship strain and arguments. The care situations at times became too much for the spouses to cope with, they became impatient, letting their own sentimental emotions, such as their exhaustion, frustration and irritability, affect the partner. In these situations, feeling impatient was followed by feelings of guilt. The spouses felt guilty of acting without mercy and that they could not pull themselves together to give better care. This was followed by feeling the shame of not living up to their own ideal as a good spouse and a responsible care provider.

Spouses’ experiences of feelings of guilt can be referred to Pahuus’ investigation of the ethical demand as a moral appeal to take care of the person whose life is in your hands.³⁷ Pahuus discussed that guilt appeared when one feels that they had failed the appeal which the situation demanded. Becoming impatient contributed to a feeling of not living up to the caring responsibility that the ethical demand required. However, spouses felt exhausted by the care responsibility the demand involved. Spouses were oscillating between feeling inadequate with the care demands and not strong enough to stand the distance to support their partner. Spouses felt bound in the semi-professional relationship obligated to keep caring for their partner and guilty of letting their partner down within the marital symmetric relationship. This dilemma hindered the possibility of their partner being cared for by professionals.

Uncertainty, hope and despair

Hope and despair refer to conflicting feelings when living in an uncertain time, as a result of the partner’s unpredictable illness process and severe symptoms. Spouses hoped that the partner would recover for a while to give them a longer life together but felt despaired about the future life with the partner.

In a meta-synthesis of hope, Hammer et al.³⁸ demonstrated that hope and despair have a dialectic dimension or even belong together when living with fear in a life threatened situation. In this way, hope becomes ‘a light on the horizon’, as a driving force to move beyond the immediacy and reality of the past and to live in the present while projecting future possibilities. In the present study, hope was used by spouses in unpredictable and exhausting caring situations at moments where everything might become different and become better rather than worse: it was hope for the partner to get better, for the burden of care to lighten and for strength to keep giving care.

Simultaneously with hope, despair was experienced in the changing relationship. The partner’s growing dependency on the spouse’s caregiving was at times too much to face. The partner not being themselves anymore undermined the hope and provoked the despair. Though, we would argue that despair was never the paramount issue. As described in a previous study,³⁸ hope is a spirit to move on: an internal energy contributing toward courage and strength to move on. It seemed that some spouses owned such a spirit. However, it was definitely difficult to hope for a better life with the partner. Some spouses felt quite despaired with the care and the caring relationship. Often, they saw no other hope than the time horizon of the illness lifespan. The dialect between hope and despair within a life-threatened situation may not be avoidable as it includes emotions, actions, relations and time.³⁸ However, hope can be inspired and facilitated by caring nurses; they can help spouses realize that hope and despair are two sides of the same coin. With sensitive awareness of the spouses’ caring dilemmas, nurses can support spouses to see the light on the horizon and give them small and realistic matters to hope for through their partners’ illness process.

Strengths and limitations

A strength of the study was that validity was considered all through the research process within our close engagement with the data.²⁶ The data collection, the steps within the analysis process and the arrangement of meaningful themes with quotes as a validity tool to illustrate the findings, has been described with transparency and coherence. Though generalizing of the findings should be done with caution, and more studies of the subject are needed. One limitation might be that all participants were married to their partner. Married spouses might have a stronger commitment of caring obligation than other relatives. Furthermore, the spouses that participated may have had a stronger ability and courage to speak out about their experiences than other spouses due the overwhelming situation they were facing. However, in both cases, we believe that the spouses with their potential of being strong and courageous contributed with great knowledge on their life with a partner with PMBT and we consider this as the study’s strength. The findings then, when used with care, might help people with less strength to speak out for themselves. Another strength was that emerging themes were discussed with professional healthcare providers at conferences and seminars. The themes were received well; they were recognizable by clinical hospital and palliative homecare nurses, who confirmed the findings to be of importance though needing more attention in their clinical practice. Discussions of the themes were often followed by their own frustration of powerlessness on how to help spouses in the best way. However, they found the coherence of the themes helpful to visualize their own practice.

Conclusion

The intention of this study was to investigate spouses’ perspective of caring dilemmas when caring for a partner with PMBT. The findings demonstrated that spouses found themselves oscillating in a changing relationship. Their married life, seen as a symmetrical mutual relationship, was changing along with the partners’ changed behaviour and personality, to a semi-professional asymmetrical relationship involving increased and exhausting care and responsibility for their partners’ daily life and well-being. Within this new and asymmetrical caring relationship, the spouses experienced several ethical caring dilemmas; they wanted to do the right thing for their partner, but their partners’ unpredictable changed behaviour and personality threatened their relationship and contributed to caring dilemmas. Often, the spouses felt left with no answer for what was the right thing to do. Feelings of right and wrong, kindness and anger, patience and guilt, and hope and despair were spousal companions all through their partners’ progressing illness.

Footnotes

Acknowledgements

The authors thank the participants, who find courage to be interviewed about their personal experiences in spite of the vulnerable situation they were facing.

Conflict of interest

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was supported by The Novo Nordisk Foundation; Psychosocial Cancer Research; Roche; Department of Oncology Aarhus University Hospital.

ORCID iD

Sara R Francis

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